Opinion

Palliative care can’t wait: what I wish I’d known as my wife was dying

310 Comments
  • Samuel Green says:

    I’m sorry for your loss! May you both find peace.

  • Bob Hoban says:

    This is hard, so I just can’t imagine what my wife has been going through. I feel sitting all day can not be good so I try to find different ways to get my wife up to go for a short walk, but no then we argue. Not good. ( Just looking for different ways )

  • Indy S says:

    I would be interested im finding out if this choking can be alleviated other ways or the controversial alternative of ending the suffering by saying goodbye before things get so unbearable.

  • Jill deVos says:

    Paul, I am truly sorry for the way it all came down for you and your precious wife at the end. Thank you for sharing with us a very important and difficult time in your life.
    I had a very disturbing end-of-life experience with my father. He had a second stroke and because he had a DNR order, my mother elected to leave him in the hospital with no care — no care in the sense that he was given no fluids or sustenance of any type kind. He lasted six days with zero input before he took his last breath. It must be a painful way to go with no fresh fluids and your body slowly but surely shutting down. There must be a way to let a person transition to the other side with peace and nourishment in the body so their final exit is easier. Blessings to all in these challenging situations…

  • Sophie Golynsky says:

    Dear Mr Adams, Thank you for sharing your recollection of last final stage of Susanne’s courage’s struggle w terminal illness. It’s a very informative source for me as I am about to face very same dilemma…trying to prepare for inevitable My husband who isn’t coping well to say the least. God BLESS YOU.

  • Sharon Clarke says:

    I’m so sorry for the loss of your wife. I too lost my husband after 138 days from diagnosis to his death from a brain tumor. My husband underwent brain surgery then 20 out of 30 chemo/radiation treatments which did NOT help. Side effects and 22 ER visits by ambulance finally admitted to hospital on Nov. 5th. He passed away Jan. 8th. Myself and our sons were his caregivers. Nurses rarely seen during those 60 plus days. My husband lost the ability to walk, feed or speak in front of our eyes. His deterioration was heartbreaking to witness. He was kept “comfortable” with medication but no intravenous for feeding or hydration. The brain cancer did not spread so his organs from neck down still thought they were healthy in my 58 year old spouse. Agony day after day for over 2 months watching his body shut down. Saw floor interns 3xs during our stay and hospital spirit advisors popped in every week till I said no more. When admitted we were told my husband would go to hospice. He NEVER got to hospice. He was just a # to the hospital. I will never forget their insensitive treatment NEVER.

  • Natalie Harrison says:

    Hi I am sorry to hear all the above it is discussing how cancer patients and families are treated. It is the same with my dad he had bladder cancer and now has it all over because they couldn’t be bothered to do a cat scan after removing the tumour or treat with chemo. We haven’t had any news always been waiting now he is palliative due to lack of bother.

  • Deena Collins says:

    I’m sorry about your loss I’m on the verge of pancreatic liver kidney cancers Doc would not give me blood work which is illegal for over a year they have a legal limit of 7 days to hand over blood test 10 days is pushing it? I could have been stabilized in last year? My heart is swollen he refused to have an app but I am a case study and they the study people tried to pull this blood work the doctor erased it but I have some the hospital sent me stating I’m in liver failure I have autoimmune hep non contagious and have markers for bone and pancreatic cancers 2016 found a lesion on kidney pole Renal failure is the way I’ll probely pass ? A coagulation problem it’s called Primary Billiary Cirrohsis was diagnosed same week as my brother RIP it’s a non alcoholic liver disease the gallbladder is resivoir of bile also made in liver without bile we can not digest fat for energy and my liver is hoarding all my vitamins and minerals have malabsorption to meds and food I’m 58 diagnosed 45 it’s been hell but without those labs I had many specialist app canceled also I’m diabetic now and not in control I’m 5’4″ under 100 lbs I’m going to call dept of health on this idiot! I have almost 2 years med school and had to tell a GI how to write a digestive test he called when I was going for MRI mrcp w and w/o contrast the lab tech corner me and started pulling on my clothes making me anxious his report was I was better? It doesnt work that way! I need to be a stable as possible so I can empty my home sell it I’m all alone my husband is taking care of his parents in fl? I’m going to kick in social security benifits I’m dying alone need help asap

  • Sarah says:

    I experienced the same things you wrote about.
    My husband was diagnosed with pancreatic cancer stage 4 less than 4 months before he passed.
    After one dose of very aggressive chemotherapy, that put him in Neutropenic sepsis He was told to go a trip and enjoy his 2 to 4 months. He was encouraged to sign up with home hospice. This was not a good choice, the refused to give him the palliative care he needed. Which would have been a hepatic drain, to keep the painful swelling down. He finally adk to go to the ER and I had to beg and cry to get him admitted. After having the procedure several days later he was moved to Inpatient Hospice. They were very compassionate, but only followed the Dr.orders and didn’t consult with me about the type of pain meds. He passed two days latter. They gave me a book to read while there, wished I would have had this sooner, but most of all I wished He had been offered the service of palliative and not sent home with home hospice, I think hospice is not delivering what it supposed to provide. It is not consistent with its care it provides. It does provide meds, beds and diapers. But in my experience it does not deliver what the patients need in the way of palliative or caregiver support. It was a very sad process, to watch someone die, with no fluids or nourishment. I wasn’t prepared.

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  • Chris says:

    Thank you for sharing your story. My husband has pancreatic cancer and we have just learned it has metastasized to the liver. We also have teen sons. We are doing our best to prepare for what’s to come. Your experience will inform mine. We also were surprised to have trouble accessing palliative care as he was deemed “too healthy” a week ago. This week we learned of the metastasis. I think we’ll be accepted now.

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  • Tammie Stephens says:

    Thank you for sharing your story. Im sorry for your loss. Im sure heaven gained.

  • Tammie Stephens says:

    I cant describe the way I feel about my best friend Bill. This happend so quick. Its a nightmare. Roomate screamimg at us.Screamimg your dying. Got a call a few days ok no more visits.call came from brother.Said Bill would be paaaing in the next few days and no more visiting him.Brother was never around for him and had stole all siblings inheritence from father and told them all he investeted in a house that burned down. When he told me cannot see him again I said thats not what Bill would want he said yes i know bit thats the way were having it. Hes been so sededated he never got the choice of consiciousness or meds. The care he was under with whom was just so so sad. He got wrapped like a mummy in a sheet and kept so sedated with morphine etc. Even when he wasnt in pain.These peops were not wanting him to have a moment of consciousness. The roomate Aimie had to be in faces being his voice, even when he still had one. I just dont get it. ? I cant carry this anger so i give it to god. Thanks for letting me share.

  • Kerry Wright says:

    I don’t understand them refusing her food and drink, that is inhumane and serves no benefit but to encourage death. I do not think a Dr should make this decision without your input! To him they are only another patient but to us they are our whole life! The patient and/or caregiver should always be involved in the decision making process instead of being left in the dark! Just because someone is or appears to be unconscious doesn’t mean they no longer feel or hear or suffer!

  • Kathleen Quick says:

    Thank you for your post. I am 70 years old have a muscle disorder and live in Iowa. Unless I can get to Mayo Clinic I will die slowly or from ignorance on my case quickly. Having a rare disease is difficult for care without Covid. But now doctors are taking a stand for me to bother the pulmonologists anymore. They are too busy. This happening just when there has been a significant and documented change in my oxygen levels. I think we may try palliative care again. My new GP brought it up. Kathleen

    • Tammie Stephens says:

      You are in my prayers. I dont know you and I read your comments. I just wanted to tell you your in my prayers.

  • Joannie says:

    My heart goes out to you; your anguish and frustration are tangeable. My husband is in hospice in a small town, with no palliative doctors or nurses. Some have refused to give him pain relief because when they ask if he is in pain he either whispers, “no,” or shakes his head. He has primary brain cancer and is aphasic and for him no often means yes. However, if nobody has had the training, how are they supposed to recognize the symptoms. He is now on a hydromorphone pump and that is the best change I have seen in his care! He cannot self administer because he is also paralyzed, but he is getting top ups every fifteen minutes; he is so much more content now and much calmer!

    This is such a rough journey and it does my heart some good to see other people being able to go on after losing their spouse because I cannot imagine that now, and I am beginning to feel emotionally burnt out. Where we live I feel so isolated because the rest of my family lives a six hour drive away. Thankfully, they are adult and more able to accept the situation than may have been the case for your children.

    I need to ask you: how on earth did you cope with grief at the pain your wife was suffering, and the pre grief before her passing?

  • Edward says:

    So sorry for your loss. I’ve just gone through a similar situation. My wife of 45 years was diagnosed with stage 4 pancreatic cancer in Dec 2019. She had zero symptoms. Initially she went to the doctor for chest pain when lifting, coughing or sneezing. Everyone thought it was a pulled muscle. A CT scan to rule out a blood clot in the lungs showed a spot on her pancreas and one on her spine. We live 15 minutes from one of the top hospitals in the US and they have an excellent cancer center. We were hopeful for a good outcome. She had breast cancer 20 years earlier and beat it. She endured chemo every other week for a year. I think the chemo did about as much damage as the cancer. It’s like the old saying pick your poison. We tried to get in a couple of clinical trials but each time she didn’t have the mutated gene they were looking for. Before cancer she only took Tylenol occasionally, after cancer she was on all kinds of pain killers, nausea meds, pain killers etc. I counted 26 bottles of pills. Christmas 2020 was bad. Her back hurt and she couldn’t get any relief. About this time she went to palliative care. OxyContin helped with the pain but didn’t completely eliminate it. She started getting weaker and weaker. A trip down the hall to the bathroom would result in gasping for breath. Her last two weeks she was on oxygen which she hated. Even at this point she was still saying we are going to do this or that when I feel better. She still thought we were going to be one of the few that would beat this cancer. Then a trip to bathroom caused severe breathlessness that she couldn’t get under control. I had to call 911. After 24 hours in ER, she was admitted to hospital. It was downhill quickly. She went from being alert and communicating to heavily sedated. This was because every time she would wake, she would become agitated because she couldn’t breathe. CT scan showed the cancer all in one lung. Five days after going to ER, she passed with her family by her side. I find comfort knowing that she is no longer in pain and we will be reunited in the future. She got excellent care. Everyone was so compassionate. She has been gone 6 weeks and I miss her so much. In 45 years we did everything together and were hardly ever apart. I hate Covid robbed her of her last year of being able to go out and see friends and family.

  • Quentin Pashko says:

    So very sorry for your wife’s passing… My father’s situation was also very similar.. But I don’t understand how the drs can cut them of iv fluids and even the pain medication they r used to.. Like why would they make a dying patient suffer through withdrawals, pain and misery during final days… Really blows my mind.. They should go comfortably…cant stop thinking how he may have been suffering for last day or 2 and that I could have done something

  • Quentin Pashko says:

    Maybe I didn’t give proper info… My 71 year old dad went into hospital after being confused after several months of cheemo and other cancer treatments.. Because of corona, we where unable to visit at all till his final days a month later.. As I went to see my frail unconscious dad, a nurse was bringing him supper… I was stunned, as there’s absolutely no wa he could eat or drink anything.. But yet he was not on any iv, and he’d been taking opiates for over a year.. I asked how they where administrating to him, and they said in pill form… But was impossible for him to take anything by mouth… He died the next day,,, as far as I’m concerned, he spent his last days going through terrible withdrawals, and died of thirst, how is this possible..

  • Judy Valdez says:

    I am very sorry for your loss,my mom just died 5 days after getting her corona shot,the first one,my mom was 88 years old but she was fine before getting it,she went to the hospital she was there 14 days on oxygen,and then in hospice care at home that my brother ordered,for her morphine was ordered by the doctor for her comfort,she was never in pain,but they keep giving it to her,and she was chocking all the time to.she died march10,2021.

  • Kris says:

    So sorry for your lost! We are dealing with all of this now! Nobody knows how long and we have been told to do hospice compared to palliative but my mom is fine medically she just has severe dystonia and Parkinson. She can’t move! Doctors overmedicated her thinking originally her temperature and movements were not Parkinson. No one knew or understood Parkinson and tremors. Not one movement specialist in the hospital. Anyway, she went in walking and now not walking. We have been told just massage and basic care. Vitals are great! Palliative care seems to be the best choice after reading your article. Thanks so much for sharing!

  • Evelyn Brogan says:

    Reading this reminded me so much of what my mother went through and her devastation when the oncologist told her that she wouldn’t be seeing my mam for any more appointments
    May your wife rest in peace

  • Denise Hilty Stevens says:

    I am very sorry for all the senseless pain you, your sweet Susanne and children had to endure and suffer through … May your Beautiful memories with Susanne flood your heart ❤️ and fill your hearts with joy again ….

  • William Lawler says:

    I to lost my wife just 3 months ago today, she was receiving great care but her breast Cancer had Metastasized to her brain with many tumors present and getting larger. The big shock was the finial weeks seizure’s did start, I’m a nurse so the first on I didn’t rush her 911 to the hospital because this is not uncommon. And I have a Hx myself of seizure’s for many years so I knew what to expect. But the last week she had another Grand Mal seizure which she didn’t come back from, I sent her 911 to (ER) and she was in ICU for 5 days then it was recommended she be placed on Hospice, 4 days later she passed away..She was assigned a Pallaitive MD 4 months prior, but she refused to except that she was going to die and so soon. So I backed her and Tx’s kept going. I truly think that a more understanding and Honest approach should be spoken about and lay it on the table…..nothing is going to work at this stage , but as a nurse I think different. Cancer is a bite in the ass, and loving people dye , dye before it’s their time.

  • Deborah Holroyd says:

    I’m sorry for your loss. Thank you for sharing your loving story..my hope is this knowledge helps many…❤

  • Amy Davis says:

    I am experiencing this same shock as my mother is in the end stages of bladder cancer. We were referred to hospice, only to learn that she cannot get palliative hospice care (ie pain meds) while receiving palliative radiation. It is ridiculous that two treatments having the same goal- pain relief- cannot be conducted at the same time. And like you, families and patients are not made aware of this hugely important fact until it is too late to address with any forethought. This needs to change.

  • K M says:

    Hopsice is amazing. Palliative Care-not so much. We are currently using them for my husbands stage 4 cancer. they have been anything but caring. NOT impressed!

  • susan auster says:

    Greetings from florida . Thank You for sharing this very private journey!
    My best friend is presently dealing with terminal cancer and soon Hospice will be called. When my Mom died of cancer in 1979, there was no hospice. I, was hospice 24/7 with a visiting nurse. Thank God for hospice and all the Medical Staff ❤️

  • Cossa says:

    I understand your thoughts.
    My husband was diagnosed with a rare aggressive cancer in June of 2019. Was not treatable. Docs said he could begin “palliative care” at home…(whatever that is supposed to mean). No nurses or anyone who came to our home tried to talk to us at all about what to expect going forward. No one ever really asked my husband how he managing the news and how they could help. The people who showed up “palliatively” only took blood pressure…asked him generic questions about how he was…never did they try to prepare us for the end. The Thursday before he passed *less than 3 months from his diagnosis, a nurse came for a regular checkup. My husband had a weak spell and she suggested that he should go to the hospital to have it checked out. He had a DNR. He was taken by ambulance. In emerg a gentleman came by I guess pastoral care…but he did not define his purpose in any clear way whatsoever. I thought my husband was in the hospital for a temporary setback. He was admitted…then on Monday before I arrived at his bedside he was non communicative. A doc said it was a matter of hours or days. He died that evening. No one told us of the actual situation until the last moment…no one prepared us. We were not given a private room for that last day or anything. A horrific experience…as often death is…we were forgotten…ignored…the whole afternoon and evening. I can’t even imagine my husbands thoughts, anxiousness…sadness without help for himself or me. A nightmare. “Palliative” care needs much review.

    • susan auster says:

      I’m so sorry to hear that You and Your husband’s needs/wants weren’t met!!
      Here, in Florida where I live there are many hospice centers which resemble one’s home; not a medicinal environment. There’s also hospice available in the patients home. The patient is treated physically emotionally spiritually… Completely holistic… Including family members too. Dignity in dying ❤️ May I ask where You reside? I’m so saddened to hear what happened to Your husband!

    • Janis Hildreth says:

      I think the whole thing smells of a license to kill. Just my opinion. They wanted to put my husband on palliative care 3 years ago. I refused. He is doing great. It takes time to heal your body, and over medicating isn’t gonna get anyone well.

  • Diane brennan says:

    I am very sorry for your loss. I have been going through the same questions in my mind. My father passed away a few weeks back and I was there for the last 10 hours and although he was in a nursing home and I wasn’t allowed to visit due to Covid, I couldn’t understand why there wasn’t fluid being given although I knew he was on a do not resuscitate. Had I had had more education I would’ve been more prepared for what I had to see and watch and it has forever changed me. I appreciate your article thank you

  • Sean says:

    Freaking horrible happened to my Aunt , The most beautiful conversationalist ,woman I’ve ever knew .I ve been married three times a Harvard professor, A Boston Universaty journalist who wrote and published several novels from her stories alone . These obstinate self adoring doctors had it in their small minded lives to take her off narcotics several times because she would make fools of them the shear brilliance of this worldly educated woman would absolutely knock these posing selfseving quacks in their place . Fotuantely fir us we knew a few characters that operated outside the law .She continued to thrive and live 30 more years .My heart breaks for the dear soul that lost his wife and mother of his teenagers to the bureaucracy of the health system .My blessed Aunt passed last Tuesday because they refused her medication I had seen her the Sunday and fix her right up thank you Mikey you are no black sheep . I knew i or someone with the gift had to get back to her before the Medicine wore off .The one phrase haunts me this day “how did she live so vibrantly when those Drs said she should have died 30!years ago “ I tears roll down my face as I write this knowing she could be living with us right know if it wasn’t for coordinated incompetence

    • susan auster says:

      So sorry to read about Your Aunt She’s been released to God’s House now May You find comfort in the years You shared with her
      Do You know Gary Bellows.. also a Harvard Professor?

  • Mary says:

    Please accept my most sincere condolences on the loss of your precious wife. How lucky she was to have you beside her throughout everything. That was so important for her journey through that terrible disease, to have you by her side. I’m sure, now, she is free from all Earthly restraints, and is with you and your children in Spirit. God bless you and your family. Much Love……..

  • cinzia says:

    Dear Paul, I’m so sorry for your lost.
    Your wife will be in you forever, i cried while reading this, surfing the internet looking for answers, I’m on my way to airport desperately worried about my last few days of my 68 year old mother, final days in the hospice GIST Cancer. I leaved every word you wrote as I’m experiencing a similar story with the person I love the most in the whole universe. Faith now will allow me to see her? pandemic and all. You are in my prayers. Best.
    Cinzia

  • Tara Jalbert says:

    Hi. I just wanted to reach out and let you know that you are not alone. I am in the exact situation and feel the same way as you! My mom and brother were my best friends, and I don’t have any children, nor cousins, aunt’s, uncle’s, you get the picture. My boyfriend is great but it’s not the same. My heart and prayers are with you, and if you could do the same for me!

  • Linda says:

    Although I’m not in your situation right now i can really empathize. I think and dread the inevitable. I have no children and I fear the loss of my aging loved ones. Take comfort in that I believe death is not final! Please read the book “MANY LIVES MANY MASTERS by Brian L. Weiss, MD. It’ll give you a totally different perspective of life and death and can help you heal. I’m actually reading the book right now!

  • Brenda. & Danny. Taylor says:

    I. Know. What. Your. Saying. And. What. Your. Going. Threw. You. See. My. Husband. Was. Dinoised. With. Prostate. Cancer. And. The. Meds. They. Gave. Him. For. His. Prostate. Gave. Him. Bone cancer. They. Gave. Him. 5. Years. To. Live. Last. September. His. Time. Was. Up. Hes. Still. Living. But. Hes. Really. Sick. And. He. Weighs. Only. 115. And. For. His. Height. 6’2. Thats. Too. Small. And. Im. Sorry. For. Your. Loss

  • Teresa Richardson says:

    Hello,
    I have been searching the web for information, I lost my husband three years ago and I’m now second guessing if I should have told them to keep trying to restart his heart. However I came across your post and it really saddened me to read what you had gone though. I pray that you and your family continue to cherish the memories of your beautiful wife – that is the only thing that sustains me. I was ignorant and regret I didn’t ask enough questions just assumed the doctor was doing what was in my husband’s interest.
    God bless you and yours
    Teresa

  • Delerine Schaeppi says:

    Thank you so much for sharing your very emotional and traumatizing experience. Your post came up when I googled Mom do you still love me. Even though I failed to call the police when your death was emminent due to starvation and dehydration in the hospice.

  • Angela May says:

    Hi I’m Angela and I’ve been caring for my partner throughout his 4 years of cancer treatment for advanced prostate cancer and I’m going through all the issues you have mentioned. At the moment he cant talk properly and everything he says is garbled, yesterday he was totally confused these things have been progressive over the Christmas holiday and due to covid etc it’s been difficult to get district nurses and pallative nurse to understand what’s happening to him and seem to treat it as ok well il be surprised if he makes it to end if the week and although I’m making phone calls I feel like I’m a nuisance to all those I ask for help, my partner doesnt want to go to hospital or into care he wants to die at home but I somewhat feel hes been abandoned

  • Jan Wotton says:

    I had no idea that my sister-in-law would be denied food and drink in palliative care. It was a horrible end. I kept my mom at home and comfortable at the end of her life because of the pain we experienced with palliative care. Thank you for sharing

  • usha says:

    Hospice they attempted to starve my father to death with morphine & antipsycotic drugs for an elderly person who never smoke took drugs drank it was terrible to watch. This is murder plain & simple

  • Connie E Eversole says:

    I have great loss also from cancer my identical twin sister my husband and my father we the people are kept in the dark . cancer is a money making situation for many people and there slould be a cure like yesterday. My heart is broken from my loss and for your your great loss.l pray for confort and the ability and courage to carry on with the great physician God. Connie

    • usha says:

      I am so sorry. This bad. With so many people dying due to covid do doctors & physicians have to this? disabled lives matter

  • Rosemary Burke says:

    Thank you for sharing your hard won insights. I am a health care worker, RN, in the U.S., but this is all too common. Sometimes the patient refuses a palliative care consult as they fear it means all treatment stops and that is terrifying when you are trying so hard to live. We need all you have said in your compassionate note and more. Care does not have to stop to have the consult and the way it is introduced as part of the treatment plan is critical to helping everyone get through a most difficult journey. Palliative care has MUCH to offer for every patient undergoing cancer treatment and other medical conditions such as ALS. It Does Not have to mean we think you won’t respond to treatment or that you will die soon. As you said your consult needed to be 2 1/2 years earlier. Thank you so much for helping shine this light for others.

  • Karen Keys says:

    I too found myself in this situation with my husband…NSCLC. My experience has been quite similar to yours in many ways. However, we were blessed in having a long time primary physician refer us to a hospice facility several months before his expiring. Much needed education on hospice care, end of life care and difficult decisions that would and did occur were discussed. I have found in my correspondence with oncologists, radiologists, surgeons, etc., that much more needs to be done in making terminal patients/families aware of their choices and events that may transpire at the end of life.
    Thank you for uour letter of insight in your journey with terminal cancer. Please accept my condolences on the loss of your wife. Cancer is a devastating disease. For the patient …but the spose/ family who walks each step with the victim.
    Karen Keys

    • usha says:

      you are lucky you had a lengthy diagnosis, they signed my dad up within 2 days after his he celebrated , no diagnosis justa decision. it was his birthday gift to kill him…

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  • Jodi says:

    So very sorry for your loss and the lack of treatment/care/attention given to both your wife & yourself!
    In ON, Canada, an ‘End of Life’ Physician came to Mom’s house, several months before she was too unwell on her own. He and his nurse discussed options, offered information on everything. When Mom went into hospice for her final days, no; they didn’t ‘treat her’ but she always got pain meds for the cancer and she always ate up until her last day. As far as clearing her throat, they even showed me how to use the aspiration machine when I asked. No IV’s would be placed in though, either and no tube feeding but pain meds, in case that happened that she became unconscious and if we worried about her discomfort.
    Never should you have had to wait to the ending to have been shared the information or her options or lack thereof! Part of the journey is finding comfort in knowing what’s coming. The not knowing, is unkind to say the least. My heart goes out to you.

  • Jodi says:

    So very sorry for your loss and the lack of treatment/care/attention given to both your wife & yourself!
    In ON, Canada, an ‘End of Life’ Physician came to Mom’s house, several months before she was too unwell on her own. He and his nurse discussed options, offered information on everything. When Mom went into hospice for her final days, no; they didn’t ‘treat her’ but she always got pain meds for the cancer and she always ate up until her last day. As far as clearing her throat, they even showed me how to use the aspiration machine when I asked. No IV’s would be placed in though, either and no tube feeding but pain meds, in case that happened that she became unconscious and if we worried about her discomfort.
    Never should you have had to wait to the ending to have been shared the information or her options or lack thereof! Part of the journey is finding comfort in knowing what’s coming. The not knowing, is unkind to say the least. My heart goes out to you.

  • Laura Tino says:

    So sorry for your loss my prayers are with you and your family god bless you all my aunt just past away from cancer so I feel your pain may god be with you and your family

  • Marlene Lopez says:

    First let me say I am sorry that you went through this pain. I am still suffering from my mother s awful experience. My mother s story is different because she was 95 and Ill
    All her life but we coped with it. I had told my mother I would only take her to hospital if I could not overcome her medical needs.
    Fallen twice during Covid 4/17 and 6/9
    Both times consulted her physician. She was recovering nicely from first fall then the the end of July beginning of August came on and I noticed she was loosing muscle mass and then weight middle of August her dentures not fitting well. Let Doctor know time went by we’re talking less then 2 weeks and mom looks dehydrated. I can’t stand it I take her in to doc an then ER. My mother is afraid to stay so I asked that they give the IV 2 one they gave her first then told me they could keep her overnight for observation but listening to the room wait the patient next to us had been waiting 7 hours so we decided to ask doc for 2 Nd IV and discharge us since obviously it the stay would impact her emotionally by herself and follow up with doctor on Monday and through out the week for IV . But The IV pic on Wednesday to be good till Saturday didn’t work. Mom had a spell kinda like a stroke or seizure look but Doc on urgent care checked her heart beat and said mom was holding her breath. She said be sure
    To follow up with her Doctor I did doc said to make sure she drinks atleast a quart of water ice etc . I stayed up with mom next to her like have for many years only constantly during Covid. Near 6 in the morning she had 2 of those attacks within minutes. I breath into to her and she come to. I immediately texted my only son who stops by to check on us almost every morning told him we need to take grandma. It was the most important decision in my life.
    I got to hospital doctor says what do you want us to do for her she has a medical history a foot long. He says look . She is 95 .Well Doctor my mother has not made it to 95 with all those elements alone she has been resilient too please don’t be prejudice because of her age. He says okay but if we admit her you can’t stay because of Covid
    But if you sign DNR we won’t do anything for her and you can stay. Mom had another incident right then they gave her oxygen but took there time. Well my son being in lobby I told the doctor I will need to consult with family an make some calls. He said fine and when I started to go towards the swing doors. I felt someone looking at me. I became startled as to feel danger if I left that moment . It was the Doctor watching to see me exit. So I turned around and told him I will make calls from her side. That feeling will haunt me forever. I did not sign DNR and was unable to stay. A couple of days went by I received a call from Cardiologist says he could take care of her and place a pace maker. Well it was my only hope. But little did I know that while he was taking care of her heart the neurologist was taken care of what they thought were seizures and then due to the hydration her sugar levels could have caused it. Well mom had the pacemaker and recovered from surgery. Here comes the Rest they gave her seizure medication & morphine I asked them to stop both but found they were still giving it to her. It’s now like 5 days and mom is only getting minerals through her IV. I found that she was given a ten minute window with speech therapist to decide if she wanted to eat or try but all the time she was on meds. I begged for them to let me attend and help stay with her etc as I felt detrimental to her recovery. I was denied they said due To Covid and by this time would have to wait until Monday morning to get approved by Admin Having FaceTime with us mom though she was not alert I tried to make it to the hospital by 10 am like they promised I would have an answer by but they didn’t. I let them know I want them to let me take her home and prepare as when I was given a 30 minute window to visit her after 7 days found her ankles and wrist swelling and the bootie she had on bursting. I immediately started to rub her and Called nurse she said doctor just left. I asked did he not see this. Obviously that means to much fluid around lungs and heart. I called him he said he would order quarters furosemide. Okay now I see no pan or unders. I held mom and prayed I know that She saw a beautiful way to go with God as it seemed I detected a nodd as if to say she was not going home with me ? While they looked the other way I was able to stay longer. It was 8 in the evening and I could not leave the parking lot and was calling doctor to arrange to take her home. The nurse Jonathan got my doctor on the line I was letting him know that she needs to get rid of that water and I will need to secure a feeding line but not tonight we have to get rid of the water first. He said okay then I heard him say give her 2 ccs and we continued to complete our conversation as he said a transfer to another hospital he would have to look into again. The call ended it would be less then a few minutes Jonathan called back. You miss Lopez With a happy tone your Mother passed, Didn’t even ask if I was sitting down or driving. it was over 10 days and i kept getting Ibutt calls that’s when some accidentally calls you and this left me destress. Over and Over again after my mom passed August 31 2020.
    God called her home to be with him as our world was no longer good enough for my precious mother.

  • Betty boop says:

    I’m disgusted with the hospice and hospital where my brother was “treated”

  • Cinnamon says:

    I am so sorry for your loss. I am currently dealing with the same realizations while I watch my mother so very suddenly admitted in hospice without hydration, without being coherent in any way, yet she is clearly in pain. This was just for the 2 hours I could see her due to COVID-19. This is all so incredibly shocking. I’m told I can’t see her again until death is imminent. It seems animals are treated more humanely.

  • Laira says:

    Thank you for your story. I was just told 3 weeks ago that I have end stage ovarian cancer and 53 days to live. I was denied any medical care and now I have 53 days, minus the past 2 weeks. What “palliative care”. I’m scared.

  • Marlana olkowski says:

    I am so sad to hear your story. My husband died at the age of 50 and he did have hospice care. My x husband is dying with stage 4, lung, brain and skin cancer he is 70 and my grown children and grandchild are devistated. I’m so sorry for you and your poor children.

  • Joanne says:

    Sorry for your loss, my deepest condolences.May your heart and soul find peace and comfort

    My dear husband died of hypovolemic shock in CCU in Halifax ,after after being aggressively diuresed
    and not enough hydration for 7 days in middle of July.2017 .He begged for water until the day he died.
    he had been on proprofol ( causes further dehydration risks}, and suffered from diarrhea.I informed healthcare staff that he was severely dehydrated and assured me was getting enough fluids

    Last entry into his medical record documented he was hypovolemic ,and then went into a tachycardia
    and passed.
    TOO LATE FOR FLUID RESUSCITATION.
    I was devasted and another example of a Resident not listening to patient or Family. Not evaluating their patients closely and appears following some algorithm or copy and pasted the same treatment he
    received 4 years previously when he was less compromised,
    Communication to the Family was unacceptable.

  • Lisa says:

    Paul, I am a newly diagnosed Parkinson’s patient. I am right now, in this moment, furious with my neurologist for referring me to palliative care with no explanation. I withdrew myself from that UC Medical Center and am not ever going back. That was a cruel thing to do. I don’t care if I die now, without any help or treatment ever again. I will decide whether or not I enter into palliative care, not him or them.

  • Mia says:

    Care for seniors, actually for all of us, should be well funded and federal. ‘For profit’ models have eroded our health care system. We pay big taxes. Let’s put the money where it matters most. Into stellar quality healthcare. No more ‘for profit’ in our health care system! The well being of our people should not be considered a business opportunity. There is no doubt that the goal o& a for profit business is to increase profits and reduce costs. That’s a recipe for disaster in health care. No one can argue that lame chestnut that ‘competition’ means better care. They clearly work together to form a system where the ‘business owners’ will profit maximally from this for profit model. Enough already. Greed has no place in health care.
    My Mom is now placed in a nursing home ( during Covid 19). I am horrified.

  • Al says:

    My wife was healthy until she started chemotherapy. Then she had the operation a lumpectomy on January 9 2020 and died June 14 2020 a few days over six months she had never been sick a day in her life until the chemotherapy.

  • T M says:

    So sorry to hear about your loss Paul.

    My mother has been battling lung cancer for the past 2 years, she had been doing well for the most part but she has started to decline in recent months and is going to begin palliative care at home.

    Not quite sure what to expect as I hear that palliative care is often misunderstood and does not always necessarily mean that death is imminent, but it is not looking great right now. She had a couple of bouts with breast cancer years ago when I was very young and was thankfully able to beat it each time, but because I was so young at the time I can’t recall if she was ever as in bad of condition as she is right now.

    So we will see what happens.

    All the best.

  • Carolyn Hughes says:

    I am sorry for your loss and sorry palliative care wasn’t given sooner. My Dad is dealing with throat and liver cancers,, I was told to get palliative/hospice care as early as possible which would make this journey easier. And because of this pandemic and having moved in with him,, I am very thankful to have this team available 24-7. They aren’t needed a lot right now,, but they know us, our house , our Case and are a phone call away. Great people and a great piece of mind for me. God bless you and your girls

  • Helen says:

    Paul, I am sorry to read about your loss. I actually came across to this article while searching why would palliative care institution here in Australia would so aggressively push for enrolment of the patient to their care. Not just I think their role is exacerbated but not necessarily the care they provide is good for everyone. I see their vision of quality of final days of life very far from common humanism concept. Unfortunately I am talking from very unpleasant experience.
    I have just recently lost my husband who died with similar circumstances at the hospital, with not bad reputation, at the age of 57. I can feel your pain as we did go through similar stages and phases of his disease. The only thing I can say- not sure if involvement of palliative care would of changed anything. In our case they were intensively involved and that is actually their protocol not to provide to cancer patients “invasive” care. They rather let them die from total dehydration, than provide a fluid infusion. At least that was our case. I was arguing with doctors every single day, asking and begging for a fluid infusion for a week but they only agreed to give it subcutaneously on my husbands final day of life. One litter. He died about 4 hour after it was started. The bag was still nearly full. I have watched my husband watering his mouth with wet cloth, so dehydrated he was and could not do anything. If you ask me what do I think- I think that someone, who think they know everything about end of life, wrote one of those stupid protocols and they (doctors) just follow it without activating their analytical skills. Without listening to the patient and his family, I am sure my husband death was brought forward by the care he got. I was watching it, unable to do anything. I actually tried to raise a complaint with coroner court, hoping that independent from hospital institution, who’s goal is to Improve medical system, will help to stop this mayhem, so future families that go through inconceivably tough phase of their life won’t get their experience exaggerated by care of medical doctors. But I couldn’t get anything done. As if the patient is in final stage of his life- nobody questions what did he die from…therefore autopsy is not warranted so I left with no proof. I only was advices to complain about it to the hospital, which I won’t be doing. As if independent organisation didn’t find anything wrong in my husband medical record, what is the probability hospital would? So here I am devastated woman with unanswered question trying to recover from heartbreaking pain of not just losing a partner to life but being unable to comfort him in his final days…

  • Rosey says:

    Oh my gosh, this makes sense now. We keep wondering why my mother’s Oncologist has not scheduled her for follow-up. She is in palliative care. I guess the nurse and PT who come are it now. Who knew? How disappointing.

  • Mary says:

    Thank you for sharing. My mum is on her last stage of life. Sounds very similar to what my mum is going through. My condolences.

  • Sally emslie says:

    I am here with my sister and hospice and I am upset with hospice they just want her to lay here and die without an explanation of why she had the siezures . She is a Parkinson’s patient
    what should I do .

  • Mary Anne Mrvos says:

    I may be caught in a situation similar. Very interesting article. Mary Anne

  • ruth Pearson says:

    hi my condolences for the loss of your wife, and to the mother of your children this is heartbreaking to hear, i have a friend whos mom has been diagnosed with terminal cancer and 6 to 12 month to live they are unsre on chemotherapy or radiotherapy as her immune system is weak and she is underweight, she has been put on drinks that are to help her put weight on. her diagnosis was a tumour found in her oshopogasis an now the cancer has spead to other parts of her body this was found out by a p.e.t scan if u could give any advice on how i can support my friend through this i would really appreciate your advice many thanks my thoughts are aith you and your family

  • Adhithya says:

    Dear sir ,I don’t know why I’m typing this …my name is adhithya and I’m 17 from india my dad was diagnosed with cancer when I was 15 and undergone chemo ,radiation surgery …..we started living our life back but then after 2 years he was again diagnosed with lung metastases now the Dr is saying they can’t do anything further other than palliative care I’m still in hosp with dad I’m there single child. It’s breaking my heart ….prayers for all cancer patients and family next week my board exams are going to begin

  • Anastasia Royal says:

    Hello Everyone, my name is Anastasia from Russian, I was suffering of COPD since 2016 and I was taking my medications, I wasn’t satisfied all i needed is to be permanently free from this disease, I searched about some possible cure for COPD i saw a comment about  Herbal Health remedies Foundation how they cured COPD with herbal medicine, I contacted their Email and i got a response. I asked for solutions, all they said to me was that i should not worry that they will send me the remedy cure that i will use to get rid of it. they sent me the medicine. I took the medicine as prescribed by the Herbal remedies Foundation a week and 6 days later i was cured from COPD After doing a test and was confirmed Negative, thank you Herbal Health remedies Foundation.

  • Olivia Shook says:

    I know this all to well. The lack of communication and coordination between the facets of the medical system is horrendously failing patients and waiting money, resources and time. I just spent 3 days and 7 hours of driving back and forth to different hospitals trying to get abdominal fluid drained for my mother in law. Stage 4 hospice survivor. She was already once told she had weeks to live and spent 3 months living in hospice, then another 3 months in extended care and now shes in an apartment. We know all to well what we are facing, we had this horrible trial run already over 2 years ago.

  • Veda Atchley says:

    Did you hear about Rascal Flatts? It’s their 20 year anniversary coming up. I guess they are going to do a farewell tour. I’m definitely going to be there. If I can hear Gary LeVox sing Bless The Broken Road just one more time, I’ll be able to die happy.

  • Suzanne Howard says:

    Iam so sorry for your loss of your wife. I am ALSO horrified that at end stage an iv is not given,or considered necessary. My mother died and I was not there .She had no iv WAS NOT GIVEN ONE and even though my name was in the written files to be notified I was not notified because my details were in her notes but not on the computer . She died alone …….a woman who duid eveythong for her family so much that since she got married she had 1 brief holiday onlt in her married life . To die like that is unforgiveable . I cannot get over it.

  • Donna says:

    Having gone through the loss of my husband after 30 years of marriage, I
    to learned a lot about the savage beast known as cancer.
    If the doctors would have listened to me about his symptoms he wouldn’t have had to suffer needlessly. Telling the doctors that he had a brain tumor,
    I was told with a disgusting reprimand that he was just having mid life crisis. That he was tired from burn out of his job. Of course when I would answer questions one doctor said to me I’m asking him and that I should be quiet.
    And she had security called on me with guns drawn because I was trying to give her the ‘big’ picture of how sick he was. He had no idea what was going on. All symptoms were related to the cranial nerves. Sight, his hearing, balance, fine motor skills, neck pain from spinal fluid build up. LP
    was so high they couldn’t insert the needle.
    Please inform doctors that spouses or
    significant other knows every little twitch and sound that is not normal for their loved one. I tried for 2 months to get my husband proper treatment.
    Lost my outdoorsman virile husband
    twice. Once for the man he was and then again in death.
    Astrocytoma glioblastoma won.
    Yes, there truly is such a thing as a broken heart. As you know. I am so
    sorry that you had to go through this
    sorrow. Blessings

  • Paula Sambrook says:

    We are experiencing same level of being left in the dark! When do you call for help.

  • john cracknell says:

    Paul; I read with interest your article and found it deeply disturbing. I was diagnosed last week with lung cancer with a prognosis of 3 to 6 mths to live. I haven’t decided on a course of treatment as of yet. I was also told that a maintenance form of chemo and radiation treatment would extend life by 10% to 15%. (1 mth) At present I’m thinking about no treatment, because I am 70 yrs old and have been on kidney dialysis for 16 yrs. The social worker and I are discussing my wishes with input from her and palliative care came up in the discussion. My eyes are now open a little wider. Thx

  • Anne Kewis says:

    Paul- I’m so sorry that your wife did not receive proper palliative care under a Palliative care Dr.
    We lived near a small town in NS when my husband was diagnosed with stage 4 colon cancer. He was able to have one chemo treatment, but had a heart attack as a side effect of the chemo. We were fortunate that our area had a fantastic palliative care program which had two trained doctors. From the time of his heart attack, until his death, we had wonderful support – with all options explained and discussed.
    My husband only lived four months after diagnosis but was kept in the loop by the Palliative care Doctor all along that journey. That was indeed a comfort to him and our family.

  • Mary Kelley says:

    Dear Paul,
    This post was from two years ago, and I hope it was instrumental in creating change. I have been living with a stage 4 cancer diagnosis for two and a half years, now. At the center where I received treatment for the first two years, palliative is also supportive care for pain management – at Emory University Hospital and Winship Cancer Center. I also cared for two siblings with end stage cancers – and at the time – from the 1990s to 2016 – I lost one in 2004 and one in 2016 – in my mind – as a consequence of the combination of the cancer and the cancer treatment. I have now come to believe that the healing of the body comes from the body itself, and its divine intelligence – once we give it what it needs to heal. Boosting the immune system, not assaulting it with outdated chemotherapy and radiotherapy.
    Your post broke my heart for your sweet wife. She deserved so much better. We all do. Please turn your family and friends on to healingstrong.org. Bless.

  • Ann M. Smith says:

    Hi Paul: Thank you for your moving story of love, loss and courage. I have a similar story that involves my Mom’s end of life care (or lack thereof). She died a miserable death from kidney failure due to undiagnosed and then, when finally diagnosed, untreated Hepatitis B+. The medical system spent more time trying to get her to admit she was a closet alcoholic and that, failing that, she had multiple sexual partners. Neither was the case. She was the dutiful daughter of a woman who was a midwife and who had (we now think) contracted Hep B from a childbirthing that she attended. My Mom and all three of her brothers were Hep B+. So, I guess, just a couple of points to add – first of all, this lack of care is not exclusive to cancer patients, and I often wished, on my Mom’s terrible journey to death, that she had been diagnosed with cancer because as it was, no one had a clue what to do with her. Secondly, all of the suggestions to improve the system are good and valid. Here’s mine. How about a little compassionate treatment for people who are in care. We are all trying to do our best here, for our loved ones on their end journeys. What happened to compassionate care? What happened to the caregivers – the nurses and doctors and the people who bring those horrible, cold, disgusting meals – what happened to kindness, sincere listening, honesty, compassion? We didn’t experience any of that with Mom when she was in care. She was treated like a nuisance. Like an annoyance. Like she was living too long. Like all they wanted was for her to move along so they could have her bed.

  • Lori says:

    That is what was going to occur with my husband, but I demanded full hydration and nutrition when he had 1 month to live. He was in the active phase of dying. But to God’s grace after starting steroids and hydration he was almost back to normal in two days. The nursing staff was already forewarned that he was dying and I said no, not over my dead body. 10 years later he is still in remission. No one was going to write my husband off. Mind you, the oncologist was not happy I intervened. They now call him the miracle patient.

  • Isabelle Narayana says:

    Dear Sir,

    I wish doctors would allow us to decide how we wish to die but that is apparently asking for too much. I lost a dozen friends to breast cancer and they all said they wished the doctors had listened to them. Many had complained of symptoms years before the tumour was found but mammograms all turned up negative and no other detection methods were prescribed, even when my friends begged for them and were willing to pay out of pocket for them.

  • Helen Hillier says:

    I watched my Mom try to hold on to life for 6 days without food or liquids. She was given just 0.5mg of Daladid and they claimed that was enough to make her unaware of her body starving to death. So many people are misinformed or not informed at all that Palletive care but rather told that the loved one is going in to be made more comfortable. Their love ones are not made aware that they will not receive any form of nitritian and will not die from cancer but rather the organs shutting down because it has nothing else to live on. I am so saddened by those images that you will live with because I’m living with them too and I know in my heart of hearts that my Mom suffered tramendously and they would not let us intervene in anyway.

  • Michelle says:

    Thanks Paul. My father died three weeks ago and was in the end stages of Parkinson’s. His doctor recommended palliative care. The hospital assessed the next day my father and denied him palliative care. The next week was a painful struggle of choking and pain and laboured breathing. My father was in extreme distressed. He died 5 days after being denied the comfort of palliative care. Your words helped me make peace with this process.

  • Sarah Davis says:

    Gosh I am so sorry for your loss and the confusion about palliative care verses actively treating the cancer!
    My brother ran into that as well and had a horrible oncology doctor. My brother, wanted to try and fight but unbeknownst to us, he was closer to his death. He did radiation to his brain but I told him in no uncertain way that he should NOT take chemo. At stage 4, it won’t help and would most likely kill him. When I was busy one day…. he took the chemo. And he died within a month! He realized his choice shortened his life. But to the point, someone needs to advocate for the patient’s best treatment and be given clear options!

  • Pablo Sinyard says:

    Very nice blog post. I certainly appreciate this site. Thanks!

  • Ken says:

    Exacty what happened in my case. I never missed anyone of my wifes appoinments. I was by her side all the way to her final breath. Every decision we made as a couple. The one we didnt get to make together was the one that was the most important of all. HER LIFE. i left hospital to pick kid off van. When i got back my wife was moved from being treated to the hospice unit. I immeadiatly panicked. We had no clue that she was actually dying. When i went in to the unit she was heavily drugged and out of it. I couldnt even talk to her. The doctors finally came and then we talked about what should happen. I told them i been telling them for days that she needs blood transfusion yet the denied it. I no what we been through in the past 4 years and knew what she needed. I told them i wanted her transferred to her hospital. The one that always gave her 2 transfusions. What they did next was take me outside the room to talk. He tryed talking me into letting her go. I was considering what i thought would be best when the other doctor came out of her room and said ” IT DOESNT MATTER WHAT U SAY, SHE JUST AGREED THATS ITS BEST FOR EVERYONE TO BE LET GO” Fist of all i call BS. SECOND IS HOW COULD MY WIFE MAKE THIS DECISION WHEN SHE SO HEAVILY MEDICATED. NOT JUST THAT. YOUR TELLING ME THEY TALKED ABOUT THE MOST IMPORTANT DECISION IN HER LIFE WITH OUT ME IN THE ROOM. THE OTHER PROBLEM IS THAT MY WIFE WAS SO OUT OF IT THERE IS NO WAY SHE EVEN KNEW SHE WAS IN THE HOSPITAL. THIS IS WRONG ON SO MANY LEVELS AND THEY SHOULD BE HELD ACCOUNTABLE

    • Sarah Davis says:

      You are so right about everything being wrong in your wife’s case. She could not consent as she was unconscious!! Again I’m so sorry for your loss!. I’m a retired Registered Nurse.

  • Malachi Maverick says:

    So, why did they starve her, and dehydrate her for a week straight? Even if she’s dying anyway, why would they deliberately torture her like that? Can’t you sue them for making her final days as painful as possible? I mean, did she tell you she was starving, or dying for a glass of water?

  • Andrea says:

    We just went through the same type of situation with my mom. In October 2018 she was told that her cancer had stabilized and they were going to give her a break from treatments until January 2019. She was fine from then until Dec 3, 2018, and by fine I mean normal tiredness for having cancer. Dec 4, 2018 she had been up all night with a bit of pain caused by a bowel blockage unknown to us at the time. I took her to emergency and in the couple of days following she was sick vomiting black looking liquid, couldn’t eat, and then we had a quick consultation with the palliative care doctor. We had not met with her up until that point and we’re hit with the “this is it” news that she was truly at the end of her life. Shocking was not the right word. Over the next month, she went through hellish changes which I wasn’t prepared for at all. My dad passed from cancer 12 years ago and didn’t have delirium, etc like she did. I wasn’t prepared for anything which was quite traumatic honestly. She passed January 6, 2019. I am still in shock with what she went through and how she went from ok (holding her own with the disease and it being stable) to her being taken to emergency to being gone 1 day before she was scheduled to start treatments again. I know it can happen but I guess I’m having a hard time accepting it…

  • Shane says:

    Paul thank you for sharing, I’m sorry for loss. This has help because my wife has been given 6 to 8 to live. We both believe that she is getting the best medical care she can get just 2 week ago we went for her 2nd 6 month scan. Her cancer has metastasized to her liver, kidneys, lymph nodes system and her brain. she’s had a cancer team since the first start of chemo and radiation now they have added a palliative care physician which scared us both because we thought it was more of something like hospice. But after talking with him she felt better about it. Me on the other hand I was devastated because the reality of it has sunk in I have to come to terms that my wife will be leaving this world. Sorry I can’t go on any longer just want you to know that your story has help me. Thank you agian Paul

  • Jeff Lahti says:

    i certainly weep for all with a cancer diagnosis as I did my best friend’s tragic death 10 years ago but seriously isn’t the best defence a strong offence…As a recently diagnosed metastatic prostate cancer sufferer i’m appalled at the lack of care offered ordinary people in simply getting in the game at a chance to beat these horrible diseases. I’ve been recently rejected treatment in Alberta due to ongoing political problems with my resident province while living in a border community. I’m fairly well for now but i’m not sure what its going to be like when breathing swallowing coughing or any of the taken for granted ordinary bodily control safeguards start to fail….makes you think that the recent right to die laws are there to encourage sufferers to not bother the Doctors out of respect for healthy users of the health care system. I don’t receive follow up calls or inquiries from my Doctor nor do I get responses to my requests for treatment in my home province. My advice…don’t get cancer. BTW i’ve started treating myself with turmeric powder and pepper in hopes it fills the treatment gap. At least i’m doing something to remedy a totally decrepit health care system….. and what you already believed about greedy heartless Albertans is likely true… I can excuse Rachel Knotly for her total abandonment of a lone suffering British Columbian in her overly theatrical attempts to support the oil patch but where is our gucchi Prime Minister in all this. its abominable.

  • Carmen says:

    My mom entered hospice six days ago. She and Dad felt that she’d get better care as in better food, better assistance for self care, assistance to use the toilet, a more comfortable bed to get in and out of, which would permit her to improve a little and feel better in hospice and give my 84 year old dad a break. This is what my parents thought, what they communicated to me and the exact opposite is happening.

    I saw my mom the day before she went into hospice. She was cogent, aware, we had a few giggles but when she went to the bathroom, she suffered for about 5 minutes upon return to her chair as she recovered from the ordeal. Within 6 hours of being in hospice, she was a complete vegetable. She was so over medicated and declined very quickly. She couldn’t stay awake, she couldn’t hold a conversation, she was hallucinating and experienced respiratory depression within less than 12 hours of being admitted. By day 2, they inserted a catheter and now she has blood in her urine. Yesterday, I watched one of the nurses sit on the ground to pet my brothers dog so thereafter, she had floor all over her clothes as she worked with patients. I went through 4 bouts of C difficile with my dad in hospital and I was appalled by this lack of understanding for a need for cleanliness in dealing with people in frail health.

    I guess we all had this loony toons expectation that hospice care would involve CARE. All they do is pump her full of drugs and ignore her unless she asks for help which she cannot do because she’s so messed up on drugs. I spoke to them about it on day one, they withdrew all pain meds and she went into a pain crisis. Now she’s afraid of pain. (all I said was could you please try to not dope her up so much, she didn’t need that much yesterday at home).

    It is my opinion that hospice care is active euthanasia and I have told my children that under no circumstances should I ever be admitted to one. I’m completely disgusted and plan on spending my eulogy time telling everyone how disgusted I am with hospice care and to avoid it at all costs. My mother isn’t dying with dignity, she’s being treated like a skin bag that needs to leave this earth ASAP.

  • Bianca says:

    Heartfelt condolences Paul, to you, your children and your family on the loss of Suzanne. I am sure your writing will spare many people significant discomfort and suffering. It is indeed appalling how the medical system handled/handles these things to the detriment of both the patient and the patient’s family. All things point to the specific need for a proper branch of palliative care that supports both those who can no longer benefit from medical treatment and the loved ones who care for them. Thank you very much for sharing your and Suzanne’s story so eloquently.

  • Julie says:

    Paul, I came across this article via Twitter (the power of social media).
    My deepest condolences to you on the passing of your wife Suzanne. I am saddened to hear this account of what happened to her, and the frustration you both must have felt navigating a system that is not always responsive to patients needs because of artificial and arbitrary barriers.
    Our experience with palliative care and end of life care was so very different, and I wonder if coming from the pediatric world there are many lessons to be learned for our healthcare system that deals with adults.

    Paul, can I be so bold as to ask if you would share your story further with those in a decision making and funding role provincially? I think it would be very powerful for them to hear.
    If you are interested you can contact me directly at julie.drury@ontario.ca

    By way of introduction I am the Chair of the Patient and Family Advisory Council for the Ministry of Health and Long Term Care.

    Thank you Paul. Take care.

    Julie

  • Jennifer wilson says:

    I am a CNA. I assist clients and their families in the home with activities of daily living. I’ve realized after many years that in my position, my role as a caregiver can evolve into an end of life relationship with the dying and their families. Caring for a person frequently, sometimes weeks, months or even years can create a cenairo to bond with the client and families. Being a confident to the dying , comforting , talking. Often they will tell me things they are not comfortable sharing with their loved ones. Sometimes I can liaison between them and the family. I am honored to have know these people, and just knowing that I was there at the end , to just provide comfort, comfort, for all involved but on a different level. I want to further my education on this subject , and be more helpful. I’m sorry the end of your wife’s life was not more comforting. However, I believe somehow, somewhere, she is just fine. Thankyou for the opportunity to share.

  • Helen Sandland says:

    I am a physician and have had 2 friends go through palliative care following a stroke. I was horrified to learn that stopping active treatment also meant no food or water! Basic nourishment-and one of these freinds was still TALKING and able to put a spoon in her mouth. She was considered a “high choke risk” so no fluids. I literally had to REALLY ADVOCATE on her behalf and finally ahd her sing a paper to say that she was willing to accept the risk in order to recive BASIC human sustenance—-and her appetite was quite hearty.

    I was told by palliative care nurse that “these people don’t feel thirst” WHAT–have you ASKED her if she is thirsty She articulates that she is dying for a drink! Again I had to insist that she be fed!

    Another physician said that he hated getting involved with palliative care, as he felt they were on a three day death plan–something I myself had actually opined to the palliative care team.

    We have a long way to do to avoid end of life horror stories!!

  • Miriam Mann, Emerg Med says:

    Hi Paul. This is a beautifully written and heartbreakingly sad story – as much for your loss as for the failure of our system in addressing the needs of your wife and your family. I agree with Cathy Faulds – in Stratford a patient such as your wife would have a family physician working to provide palliative care guidance and support. As an emergency physician I sometimes get involved as patients approach death and are not prepared for some of the symptoms and processes that occur. I work with our family docs to help patients and families choose a path that is best for them and allow them the dignity of choosing the type of death that they want. I am sorry that you did not have this experience.

  • Siobhan Toomey. Ireland says:

    RIP Suzanne and my condolences to the family. Your post here reflects great dignity and that of your wife during one of the most difficult life stages we all have to face in various forms. I think it is this aspect that annoys me most. That mere politics of the health system should override basic respect for the courage and dignity of a human being who finds themselves at this most difficult of times. My admiration and sincere respect to you all.

  • Alison McArthur says:

    Hi Paul,
    Thanks for your article. I am very sorry for your loss. My mother passed away last fall 2016 after suffering 4.5 horrendous years with multiple myeloma. She had both an oncologist/haemotologist and a palliative care physician almost from the beginning. This was possible because once treatment started my parents moved into my area and no longer had her family doctor readily accessible. CCAC in my area immediately was able to refer us to a family physician who specialized in palliative care and always saw his patients in their own homes. He worked in concert with a nurse practitioner and unless they were out of town, they were usually readily available and always came together. Their blend of skills made them indispensable. They stayed caring for Mum from the beginning to the end really with the focus at the beginning on symptom and pain management.

    I thought everyone had the ability to obtain a palliative care physician and an oncologist at the same time. It’s troubling to know that’s not the case. I guess we were fortunate, or perhaps my region is, to have this particular doctor and nurse team in the area. Thanks for providing awareness that this is not always the case. That is a big problem.
    I learned so much about “the system” from initial symptoms to diagnosis to end stages. Some of it is of course, world-class but some parts required strong advocacy to ensure my Mum got the help she required. Getting collaborative communication between the original GP and original haemotologist was the first major difficulty. Later on in treatment, any emergency hospital stays that arose (generally due to frightening pneumonias resulting from chemo) were particularly problematic on a number of dimensions. I always wonder what happens or doesn’t happen for patients who do not have people in their lives to push for the care required. Or people who do not have the skills or resources to vigorously advocate for their loved one who has an incurable illness, or to be able to find a palliative care physician. Thank you for writing this article.
    Sincerely,
    Alison

  • Elizabeth says:

    I totally understand… my husband went into hospital in January 2017 for COPD…..he deteriorated so fast that a week later they put him on morphine every four hours or as needed (palliative care) but never used those words so when he died three days later I was totally unprepared…. no life insurance… one of daughters had not been by to see him….no final conversations as to whether he wanted burial or what….. I understand devastated!

  • Jamie says:

    I am so sorry for your loss. I recently lost my mom to COPD. Her wishes were to have MAID step in and help her at the end. They failed us and my mom. False sense of hope. My dad, brother and I had to helplessly watch her die. I had to make very difficult decisions to help speed up the dying process as she was never supposed to get this far and be in this much pain. No palliative care till just 2 days before I called 911. I totally related to your situation. It definitely hit hard. Now if I can only get those bad visions out of my head to be able to move on and feel like my decisions to help her were the right ones.

    • Paul Adams says:

      I am so sorry to hear this terrible story.

      I am am perfectly certain your mother know how much you all loved her and how you did what you could to care for her.

      I hope you find some peace.

      Best wishes.

  • Pam Williams says:

    So very sorry for your loss ! The more I hear the more I know the government shouldnt have say in a patients care . Americans are in such a quandry about our health care . Insurance premiums are getting out of reason , our care is becoming too costly for many . Yet I was in dilusion that Canada had better health care . Sharing this story to my friends . Again my deepest sympathy ! Both my parents passed with cancer also .

    • Paul Adams says:

      Thanks for your comment.

      I’d like to clarify that Suzanne received excellent care for many years and throughout her illness. It was of a very high quality, compassionately delivered, and of course, free, so that there was no economic burden to add to the emotional one.

      It was really only in this one respect that the system let us down. I am hoping we can make it better.

      Best wishes.

  • Sharon Anderson says:

    I think that Atul Gwande’s book Being Mortal should be required reading for all health professionals. In addition, all families should be able to disuss how they want to live until they die. My mother didn’t want to die thirsty. Just knowing this enabled open discussion about end of life options.

    • Paul Adams says:

      A beautiful book. PBS Frontline also made a documentary with Gawande that I think is available online.

      I’d also recommend Paul Kalanithi’s deeply moving “When Breath Becomes Air”.

      Thanks for commenting.

  • Barbara Lambert says:

    Absolutely great advice. As a retired hospice nurse, I was often sad that family members or patients would not stop fighting for life which led to major suffering.
    Perhaps Palliative Care is easier for more to hear– even physicians who see hospice as giving up.
    There exists a need for more education on this topic.

  • Sharon Ciebin says:

    I have just learned how a palliative care team has eased a friend of mine’s final days on earth. He arrived at Emergency a couple of months ago to be told there was nothing they could do. The Palliative Care team took over and gave him treatment which repaired his bowel and he is now home on medication and enjoying his final days in this world. We need to start referring terminally ill people sooner to Palliative so that they have quality of life until the end.

    • Paul Adams says:

      Thanks. I am glad your friend is getting the care he needs.

      My very best wishes for the weeks to come.

  • Neal Harth says:

    Your observations about our modern society are direct and sadly correct. I am sorry for your loss and am sure you feel honored to have been there when needed most. I have experienced sime of these things with my own family members. There is it seems like an opportunity for improvement in a good system. There is room for a more considerate heart when it comes to healthcare design, not just in its administration.

  • Lynne Neveu says:

    My wife and I lived in Gatineau Quebec. When she found out her Multiple Myeloma cancer was coming in like a vengeance we (Kim myself and her Oncologist Dr. Arleigh McCurdy) decided it was time she stopped chemotherapy! We were sent home on Feb 16th from that appointment at the General Hospital. Now the Oncologist sent paperwork to the CLSC for nursing health care when needed until we would go to Mathieu Froment pallative in Hull which Kim and I visited only 2 weeks prior. Kim had chosen Mathieu Froment pallative care because she did not want to die at home! After not hearing anything for 6 days from CLSC. I called to see what was happening! CLSC said they did not receive any paperwork from Dr A. McCurdy! I had to get the doctor to send the paperwork again to the CLSC. Finally they got it that day! Kim was getting really bad by this day! Not really understanding what was happening to her! She would get up for the washroom and her legs were locking on her! She stopped eating! I had to get the CLSC Nurse to assess her for pallative but when she came she was answering most of her questions! She told us your not bad enough for pallative care! But she hadnt seen how she was earlier and within 1 hour she was out of it again! Finally the Nurse from Maison Froment called me and said they were booking an ambulance for the next morning at 10:00am. This was February 23rd. We arrived there and they were great! Took care of her very well! Our yorkshire Chloe and I were able to live with Kim! The next day she incoherent most of the time! She passed away Feb 26 2017. She was my wife and soulmate and she will be always missed and remember as a beautiful woman!

    • Paul Adams says:

      I am so sorry for your loss. It should not be so hard for desperate people to get the care they need.

      Best wishes.

  • Vickie boechler says:

    You hit the nail on the head. When I last worked in palliative care we did not wothold food and especially fluids. Withholding the basic necessities only serves to hasten desth and leave the dying in an uncomfortable state of living. It is inhumane. Our doctors and nurses need to spend some time in palliative care doing their formal education.

    • Paul Adams says:

      Thanks for your comment.

      I personally don’t know enough to say whether withholding nutrition and hydration was the best for Suzanne or not. It may well have been the medically indicated thing.

      But the communication was appalling. We had a right to know what to expect, and to be advised in a timely, compassionate way, about these decisions.

  • C Smith McLeod says:

    All too common a situation.
    We were luckier. My husband, declared terminal by the diagnostician ,had palliative care assigned immediately after meeting with the oncological surgeon and the radiation specialist but he had to push for MAID. It should be on offer. He also pushed for a counsellor for each of us to guide us through the last months. They are available but doctors seldom tell patients or caregivers at this most stressful time of a terminal illness. They are an essential part of this process and go far in lowering stress. My husband died when and where he wanted to and our MAID team was wonderful- frank, friendly and very kind, reassuring. BUT had he been fearful and utterly accepting at the beginning, he too would have had to decay on a palliative ward, losing any semblance of self respect and control— two vital characteristics of this man who , at 84.rejoiced in a fulfilled life. I feel very sorry for what the poor diplomat had to endure at yhe end of what had undoubtedly been a most interesting life. And even more sorry for her spouse in whose memory it is so thoroughly and horribly engrained.

    • Paul Adams says:

      Thanks very much for your comment. I am sorry for your loss, but heartened that your husband managed to get the care he needed.

  • Jenny Robins says:

    Sorry for your loss my Prayers are with the Family and Friends AND what you and your BEAUTIFUL WIFE had to go though was wrong I hope and pray thing’s will change for everyone that happened to you GOD BLESS YOU AND your Family

  • Kathleen Broglio says:

    More and more people are recognizing that they can have bothpalliative Care and aggressive treatment at the same time. What palliative care can provide is the planning for the ‘what ifs’
    I recognize that the rules may be different in Canada. Yet in many places in the US are still the philosophy that if you are under aggressive treatment Palliative Care Has no place

    • Paul Adams says:

      Thanks. I think everyone here understands what should happen in theory. Unfortunately in our case and too many others that’s not the way the system works in practice.

  • Sandi Hebley RN, CHPN, LMSW says:

    So sad. In the States, there is a difference between palliative care and hospice. Hospice is for the last months of life, when curative efforts have stopped. Palliative care, on the other hand, can begin even while curative efforts are pursued. I’m so sorry this family did not get that option.

    • Paul Adams says:

      In theory, it is the same here. Operationally, however, it doesn’t work that way, at least not for a lot of people like Suzanne and me.

      Thanks for your comment.

  • Marge says:

    So Sorry TY for sharing!

  • Barbara says:

    Unfortunately, there are still some Dr’s that will not even mention the words,, pallative care & hospice. This needs to change. Sooner than later. They are a professional & compasonate team that will help patients & their families thru this time of need. If the Dr’s don’t bring up the subject,, families need to speak out & ask. You’ll be more relieved that you did. I know, because I work with Hospice. They gave to our family & I’m giving back now to help others. God bless to all involved!! ❤

    • Paul Adams says:

      Thanks very much.

      I think that’s certainly true, and education is important for both patients and practitioners.

      In our case, both our oncologist and we ourselves recognized it was time for a deep discussion around palliative care. The system, unfortunately, failed us.

  • Kristine says:

    Dear Paul,
    Thank you for sharing your heartfelt experience. I am sorry for your loss.
    I am a nurse who feels passionately about end of life care and it’s importance. Your writing has ignited the fire in my soul to pursue my passion. To make a difference for both patients and their loved ones. Thank you and God Bless you and your family.
    Kristine

  • Chris says:

    Morphine should not be given to people with asthma, respiratory problems and thyroid problems.

  • Jamie-Lynn says:

    Thanks for sharing this valuable information. It left me wondering how much control do I want to have over my destiny during the final days..I think,for me, I want to have my family around, for sometime, saying goodbye, having a few good laughs, then drug me into a permanent sleep. Dying with dignity..and a full belly, btw- this no food for 2 days is absurd. It irks me to no end to see people suffering at all when they are dying. This final event in ones life should be effortless, pain free, and calm. I understand that loved ones will hurt, but even for those close, wouldn’t they themselves heal better if they witness a family member go in peace? Maybe it is all about being prepared, and your article truly was an eye-opener. Thanks again for this. It will be food for thought all day now!

    • Paul Adams says:

      Thanks for your comment.

      I really believe that for many people at least, a fuller knowledge of what to expect and what decisions may have to be made, would relieve a little of the anguish, physical as well as emotional, of what is inevitably a grievous experience.

  • Dr. Brenda Sabo says:

    It is truly sad that your wife did not receive palliative care in a timely manner. There is much confusion around the role palliative care can play even while receiving cancer treatment. Education and conversation is sorely needed for both health professionals and the public to break down barriers and demystify palliative care. Check out the PEACE (palliative education through art, communication and engagement) Project coming to Toronto August 2nd for 2 showings. This Canadian Cancer Society funded project is an immersive play based on real narratives from both cancer patients and caregivers about palliative care. Feel free to share the word about this project.

  • Juliana Schmitt says:

    I am a hospice nurse in the US. We have different practices as to both palliative care and hospice.

    Where one commenter above indicates a DNR was required, that is not the case here for either palliative care OR hospice. You can be a full code on both, per Medicare. Some hospices individually dictate that you must be a DNR to sign on with their agency, but this is categorically a misrepresentation of the hospice benefit as well as a violation of the patients rights. However, as a clinician I do help a family decide at what point in decline it would be best to not subject a frail patient to an incredibly strenuous procedure guaranteed to break ribs with poor results.

    To be hospice eligible, a cancer patient will have shown signs of disease progression not responding to treatment, and if the patient decides to discontinue pursuing curative treatment they can still purse palliative treatment with chemo and radiation that is covered by the hospice benefit. This is implemented while monitoring tumor size. If by the grace of God the palliative treatment actually succeeds in reducing the cancer beyond the designated parameter that differentiates between palliative and curative, the patient is freed from Hospice to pursue further curative treatment if they choose. This is very rare, in 5 years of serving in hospice, I’ve only seen it twice but you truly want to jump for joy….

    Patients with other non-cancer diagnoses (heart failure, COPD, Alzheimers, etc) must be evaluated and determined by a physician to have a prognosis of 6 months or less.

    A huge difficulty we still face (just like in Canada) is educating not only the public but physicians on Hospice and Palliative care, despite Medicare providing the benefit for 30 years now. Few people understand the difference between them and even more difficult, when to initiate either. In the US palliative care can be initiated virtually anytime after the diagnosis, and hospice ALWAYS utilizes palliative care. But palliative care does NOT require hospice enrollment in the US because the patient can continue to pursue curative treatment.

    Physicians have such a strong focus on curing disease, it’s counterintuitive to switch that focus. I’m glad to see so many previous commenters endorse Atul Gawande’s Being Mortal. He presents an excellent analysis of this very problem.

    We have a similar problem in the US as you do in Canada. Sheer numbers. There are so few palliative care specialists available. We have one palliative care group in my town through our university health system, and they are overwhelmed. I work for a separate health system that employs over 10,000 people in a 16 County area and has only one nurse practitioner who specializes in palliative care. In any hospice organization the physicians who serve as medical directors MUST be specialty certified but often have other full time practices. In my own company I am the only registered nurse with additional specialty certification in palliative care. My organization is trying to encourage the other nurses to obtain this certification but it is very time consuming. We are working under crushing workloads already, and often too exhausted to contemplate this path of study.

    I see the challenges from within the organizational standpoint and it seems Sysyphean…. It so often breaks my heart when my families finally reach hospice having made it through with a minimum of the support that could have changed quite literally everything. I cannot count the times I’ve heard “I wish someone had told us this sooner”.

    • Paul Adams says:

      It is heroic work you do.

      I think philosophically our system here in Ontario accepts that palliative care can run in paralllel with other forms of treatment. Operationally, however, it is very different, both because of failures of understanding by practitioners as well as patients, and because of a lack of resources.

  • Rhonda says:

    I’m so sorry for your loss.
    It saddens me when I hear about someone not having a “good death” I’ve been a palliative care nurse in Alberta for over 10 years. I think the problem is that people fight so hard to live. And medical staff fight so hard to heal. Even when sometimes it’s very clear that they really are doing more harm than good. Sadly, sometimes quality really is better than quantity. I find that even mentioning the word “palliative” to a lot patients, and family members is met with resistance, and anger. They feel like it means they are giving up.

    • Paul Adams says:

      Thanks for the work you do.

      All of that seems true to me.

      I know from the people I have met and heard from that many people resist the implications of a palliative care consultation. I truly don’t know what should be done in those cases.

      But there must also be other cases like Suzanne’s, where patients are prepared to contemplate the reality of their situation and wish to prepare. Her oncologist recognized she (and I) were ready when she referred Suzanne. The system failed her.

  • Stephanie says:

    “I had never imagined that in her final days, she would not be given the most rudimentary stuff of life; that I would have to stand and watch that happen. Helplessly”… So very true… Thank you for posting.

    My Guy’s death at 39 was a million times worse than I could have ever imagined for these exact reasons. I have next to no regrets regarding the treatments we chose for the 2 years he was able to fight his cancer. I fought and fought for him to have access to the best treatments, to see the best physicians in the world, to do whatever he needed/wanted. And he did. However, all I able to think about since his death in April of 2017 is the last two weeks of his life and how absolutely horrible they were. He fought so hard to die by nearly choking on his own blood while medication piled up in his mouth because the physician didn’t write for ALL meds to be pushed through his port after he was no longer able to swallow and didn’t even have enough saliva in his mouth even after 8 hours to dissolve the medicine. And what did I learn? Next time I’ll know. That’s what I learned. Next time I’ll know. But that won’t ever help him and I don’t think I could ever go through this fight again with anyone else. So I find myself really struggling with the last days of his life more than anything else in this whole process… I thought watching him suffer from treatment was hard. That was nothing in comparison to the last 2 weeks of his life.

    My heart goes out to you and your family.

    • Paul Adams says:

      That is heartbreaking. It should never have happened.

      I hope you find some peace from these thoughts. You obviously loved him deeply, which I am sure he knew.

      Take care.

  • Pippa Richards says:

    This is so sad to read Paul, as a Palliative Care Specialist nurse in SW Sydney, Australia, of some 17 years, we have a great relationship in the most part with the Oncology and Radiation Oncolgy staff and work togethher to ensure the best quality and plan for EOL care, often the patient gets their wish to die at home well supported. This is the aim and not only for cancer patients. We clearly discuss what to expect and how best to manage care whilst still affirming life.

    • Paul Adams says:

      That should be the case for anyone who can benefit from such care.

      Thanks for writing and for the work you do.

  • Helen Smith says:

    I feel sad to read of your families heartache and lack of supportive care throughout your wife’s treatment, and end of life care. Ideally meeting palliative care much earlier would have, no doubt, been beneficial for all of you.
    Our palliative care team sees people often from the point of diagnosis. We call ourselves supportive and palliative care. We are there to support the patient and family throughout their treatment, establish a trusting, therapeutic relationship hopefully long before someone’s final days.
    The preparation time is important, as is living with a life threatening illness. Making the moments count, getting on with living even facing death.I think we are getting better at providing timely palliative care. As with everything we need more resources to accomplish this for all families.

    • Paul Adams says:

      I have heard from many people who received palliative care consultations in a timely way, and in almost every case, they found it eased their path.

      Unfortunately, I am hearing too from many many people who did not get that care.

      I truly believe we can do better.

      Thanks for your comment.

  • Marie says:

    I am so sorry for your loss. My sister (54 just a month b4 her death) never met with a palliative care physician, but just 5 days before she died was placed on hospice care. She too lost her oncologist who had treated her breast cancer mets for 6 years. Thankfully, I am a registered nurse & was able to explain to her and our very large family what was happening. She, especially, felt lost & somewhat abandoned.

    • Paul Adams says:

      This is a sad story very similar to what I have heard from others. The handoff from the active-treatment specialist is often awkward and even hurtful. This is an aspect I did not address but deserves deep attanetion.

      I am sorry for your loss.

      Very warm wishes.

    • Paul Adams says:

      This issue of the hand-off from the active-care specialist demands deep attention. I have met or heard from so many people who were shocked, hurt and felt abandoned. Surely it does not have to be like this.

      I am so sorry for your loss.

  • Jennifer goldup says:

    my husband passed a year ago from terminal illness..no palliative care.died in hospital after 4 days of refusing lifeprolonging m3fs that didn’t help.i was told they had a hospice bed the day he died..very unpleasant ordeal.

  • Bonnie says:

    Too many patients and families think palliative care means giving up. They are afraid it means no cares given. It’s also hard to know when the patient is ready to hear “you are dying”. They want to know when, and I don’t have that answer

    • Paul Adams says:

      Certainly I have met some people who are in that situation.

      That was not Suzanne’s situation. She received a timely referral and despite considerable efforts by me, we were unable to secure the appointment we sought.

      When people don’t want to hear bad news, that is a delicate problem. In Suzanne’s case she desperately wanted accurate information about her situation and the choices ahead but was denied that opportunity.

  • Kate Henderson says:

    I’m so sorry to read your story, but thank you for sharing in the interest of future palliative care patients.

  • Deb Rothschild says:

    Hi Paul,
    I am so sorry for your loss as well as for the suffering of your beloved wife in her last days. Retired now, I used to be an ICU social worker. I saw my role as being able to offer patients information so that they could make informed decisions about their care. A palliative consult when one is diagnosed with a life threatening illness should be something willingly offered versus a fight. Such a consult helps ensure quality of life as the patient continues treatments as well as helps them know what to expect, both throughout treatment and when enough is enough. What patients don’t often know and what I would tell them is they have the right to request a Palliative consult. Sadly, it is often not “offered” until it is too late, as was your experience which is a shame. Palliative care is the most humane and compassionate thing we can offer people facing devastating illnesses. If a physician resists this request stating they are able to do alone what a palliative team would do, it is time to change doctors. This is an ego driven person who cares more about his own best interests rather than his patients’.
    Thank you for your letter and for helping people see the importance of a good death both for the patient and for the loved ones they leave behind.

    • Paul Adams says:

      Thanks for your comment.

      In our case Suzanne was referred for palliative care six months before her death. I did not describe this in the article, but it was only through considerable persistence by me over many weeks that I was even able to find out that the referral had been denied.

      In our case, at least, it was not a failure of our oncologist to make the referral, but the refusal of the system to honour it.

  • kathleen ostertag says:

    A gaping deficit in the continuum of care. So sorry for your pain and loss.

  • Jack Pelton says:

    Heartbreaking, Mr. Adams, and an all too frequent reality, Thank you very much for documenting this difficult tale.

  • Patti LeBlanc says:

    I am so very sorry for your loss. Sorry as well,that the system failed you and your wife. As a nurse myself, I have a hard time letting go when a terminal diagnosis is made. However, giving them the access they need to assist in making informed choices and options is one thing I try to ensure happens. The fact that you were not given the right to speak with a palliative care physician is unforgiveable. Your article is an eyeopener for many. Education for our patients and families is so often overlooked and I am sorry for that. You were not totally prepared for the process of death your wife may go through in her journey and I am certain you were taken by surprise and unprepared for most what you witnessed. No excuse is a good one.

    • Paul Adams says:

      Thanks for your note.

      I know not everyone in this situation is emotionally ready to deal with each turn in the course of their disease.

      However, my wife was a very rationalistic person. She wanted to know exactly where she stood and wanted to know where she was likely to be standing next. She had a thirst for information. Throughout the course of her treatment, we were usually able to get the information she wanted and needed, even if it took some persistence to do so.

      But in this case, persistence (which was considerable but that I did not describe in any detail in the article) did not pay off. We tried hard to get access but were denied.

  • Sandy says:

    Amazing that
    Our modern western society pretends to ignore the dying process and refuses to prepare us for the inevitable at great cost and human suffering.

    • Paul Adams says:

      I think the system is trying to adapt, but too slowly, and the result is that palliative care is being rationed in effect.

      Thanks for writing.

  • Dr. Mary Lou Kelley says:

    Thanks for sharing your experience. It will help many others to hear your story.

  • Paul Henderson says:

    I was not aware, Paul, of the end process your wife endured. And that you endured. I only knew she had passed.
    My sincerest sympathies to you and your kids.

  • Dana Brynelsen says:

    Thank you very much for sharing this private and painful information with us, the public, many of whom will be in similar circumstances in years to come. Forewarned we need to press for reforms. Many thanks and best wishes to your grieving family.

  • Rebecca Fuller, APRN-BC, ACHPN says:

    I am sorry for your loss Paul. As a palliative care provider practicing in the U.S. I am struck by an interesting distinction that stems from our different health systems. I am one who wishes our system was like the Canadian single payer system. But perhaps in this situation, natural health interfered with an early referral for Palliative Care.

    In the U.S., insurance companies reserve hospice services and benefits for the terminal phase of illness when no more disease modifying treatment is available. Palliative care, on the other hand Can be introduced at any time in the disease trajectory and is reimbursed as if it were any other specialist. This enables us to aggressively manage symptoms and begin discussions around wishes and goals of care during the active treatment phase.

    I wish I could say that because the reimbursement model exists that our patients get earlier referrals all the time. Alas, this is not the case often enough. Often the primary specialist (Oncologist, pulmonologist, etc.) is unwilling to broach the topic for fear of destroying hope. And we too have a lack of sufficient numbers of Palliative providers to meet the growing demand.

    Thanks for being part of a growing number of voices speaking out for the need to enhance palliative care knowledge.

    • Paul Adams says:

      Thanks for your comment. My sense is that in theory palliative care is allowed from the point that advanced disease is diagnosed. However, it may be that the resources are not yet in place, though they seems to have been growing in recent years, to meet potential demand. In effect, these precious services are being rationed, or triaged, in some places by making this sharp distinction.

      Best wishes.

  • Suzanne says:

    So very sorry for your lost.
    I hope your story will prevent this happening to other vulnerable persons with cancer.

    We have to educate people, give them more knowledge as to what to expect, when they go to palliative care.

  • JBG says:

    This is quite sad, and though, too common for sure. Although a clarification – it seems as though Palliative Care and Hospice are being confused – as with Hospice, one is no longer seeking “curative” treatment, but with Palliative Care, there is no such restriction. Still, this couple received ANY care far too late, and that is tragic for them both.

    • Paul Adams says:

      What we sought was the opportunity to meet with a palliative care physician early enough in Suzanne’s disease that we would know what we might expect when she came to her final days, weeks or months. She would have been comforted by a better understanding and I would have been in a better position to understand her wishes. I don’t think there was any confusion with hospice care, a separate issue that I did not address.

  • Sherry Agar says:

    I have done palliative care as a PSW and also as a volunteer to Hospice. I feel passionate about end of life care. The people I looked after appreciated an honest approach form those around them. Helping people to fulfill unfinished business and to give them compassion without pity is so important. When asked questions the answers where not always easy but they were necessary. Sometime an ill person cannot rage or discuss things with someone they love. They feel as if they are burdening a loved one. That’s where palliative care is important.

    • Paul Adams says:

      Thank you for your work. What generosity to choose to help people in such a sad and trying moment in their lives.

  • Ken Rockburn says:

    Thanks for this, Paul. And please accept my sincere condolences. My experience was slightly different and, as I read the responses to your piece, I realize why that was. When my wife, Sheila Bird, was dying of what was likely the breast cancer she had twenty-five years earlier returning in a different form, she made the decision to stop all treatment when it became apparent that it would neither prolong or enhance the time she had left. The very moment she made that intention known to the medical staff it was as if a switch had been thrown. Suddenly the arms-length, professional demeanour of the attending physicians and nurses (a necessity of the job, of course) became one of intense caring, incredible support in a very human way, and – dare I say it – love. It was as if the inevitable had been accepted by Sheila – which it had – and now they could all be honest with her about the future and its variables. We were transferred to PC medical staff and the treatment we received from that moment up to her death in my arms at the Maycourt Hospice in Ottawa four months later was absolutely excellent. But I realized that our experience hinged on the fact that Sheila made the decision herself and that precipitated the shift in treatment. I would hope that the system could work that way for everyone. Thanks again, Paul, for shining a light on it.

    • Paul Adams says:

      Thanks Ken. I don’t know if you realize I knew Sheila a bit from the University of Manitoba. I saw her here in town occasionally when I worked on the Hill. I think we were living abroad when she died.

      I am pleased to hear that she was able to feel a degree of control in her final weeks and months. Suzanne had come to a point of acceptance too, though very late in the course of her disease. Had she been afforded the opportunity to meet earlier with a palliative care physician I truly believe she would have been ready in a fuller sense, not just emotionally ready for the end but prepared to meet the specific rigours of those final days.

      Best wishes,
      P

  • Wendy Matton says:

    Paul, our family encountered late realization as well. My dad had completed a DNR form but we didn’t know that palliative was a total deprivation of even water. We still don’t know if it was the morphine that took him but it was horrible to witness as we felt we would be more merciful with a pet. As a result I’m a proponent of medically assisted suicides in such extreme “no hope” circumstances. Thoughts and prayers going out to your family Paul

    • Paul Adams says:

      Thanks for sharing your story.

      I hope you don’t agonize too much over the end. I imagine your presence was a great comfort.

      Take care.

  • Marilyn says:

    I am so saddened that you and your wife were treated like an expired commodity. Please know my thoughts are with you and your family.

  • Anupam Sharma says:

    I am so sorry to read about this. It is so very moving…. a tear, or two, sneaked out. While Chris, I do meet occasionally; our paths crossed when you taught at the University of Manitoba.

  • Pamela Cogan RRT, CRE says:

    As a healthcare provider, I feel so sorry that these memories and this experience cloud your grieving. I hope, Paul, that you can soon find peace and are able to celebrate the life of your beloved wife.
    I can only suggest that for others dealing with serious disease, take all the support that is offered, even if you think it is uneccessary. The social workers at the Cancer Centre and with your local health dept are a fountain of information and support; their role is especially important in helping families navigate and access other support services. Perhaps their title suggests they are for those in financial distress, but this is not at all the case. They are also great at liaising between the patient/family and other health care, helping to “translate” and provide clarity at a time when everything is overwhelming. (Sometimes people do not realize when they are overwhelmed…) Access patient support groups, and also call the hospital’s Patient Advocate, another wonderful resource, if you feel your wishes are not met.
    Palliative care (which is NOT “death care”…it is care providing symptom relief, generally when “active” or curative treatment is at an end) is terribly under-resourced, as is pain treatment itself. As both these specialities grow in popularity, but not in medical staffing, people are feeling they are not serviced well, while 10-15 years ago there was almost no service at all. We have a huge gap in treatment advances vs availability. This is a matter of political will – write your MPP.
    I suggest that patients and families continue to ask questions, but also to understand that in any life-limiting illness (certainly with your wife having brain mets, she understood that) “things” can progress and happen very fast. Indeed, all of us are on a clock, and it is so important to talk with our families/close friends and write out an “advanced care plan”, which is best discussed with your family physician as well. The Emergency Department, as you well know, is not the best atmosphere for these decisions.

    • Paul Adams says:

      I have been a bit overwhelmed by the outpouring of stories I have heard in recent days. Many people have stories similar to mine (or sadly, worse in some cases).

      The good news is that some others have received the palliative care they wished to have in a timely way. With very few exceptions, they were very grateful and pleased with the quality of that care.

      We know what to do, in other words. We just aren’t doing it for everyone that would benefit.

  • Johnston Smith says:

    So moving. Thank you for the courage to publish.

    • Paul Adams says:

      Thanks Johnston. I hope you are well. (I see that Christopher has dragooned you into various committees!)

      Best wishes,
      P

  • C Turner says:

    As a follow on to my previous post I did document what was good about palliative care and where it was lacking and gave the director of Palliative Care of the hospital a copy. I sat with her as she read my comments and it brought tears to her eyes as she read both the good and the not so good. She then asked if I would allow her to share my comments with her staff. As I felt totally comfortable with what I had said in my written comments I agreed to allow her to use it any way she wanted. The director called me back on two occasions to give me updates on how they have implemented changes as a result of both my concerns and my positive comments. The nurse who spent so much time with us the day before my wife’s passing was hired full time (she had up to this time been filling in on a temporary basis). She was at this point still trying to fix the problem with faster response time for both delivery and pickup of required hospital beds, portable toilets, turning blankets etc. but as this was contracted out it was going to take longer to fix. It seems at least here they do want to be as good as they can be and don’t get their backs up when someone points out where improvements could help in the whole process.

    • Paul Adams says:

      This truly illustrates the good we can do afterwards as painful as it may be to look back.

  • Marti says:

    Heart breaking. Pallative care is not comfort care? Wondering at what point pallative changes to comfort care?

  • C Turnet says:

    First, let me say I feel sorry for your loss. While each of us who have gone through this have issues with the Palliative Care our loved ones got, we also see the kindness and willingness to help that was offered by those doctors or nurses helping us through this. For most of us losing a spouse is o onetime event. It’s not until the whole process is over do we know the questions to ask and by then it is too late. In my loved ones case it was MDS morphing into acute leukemia at the end. What this meant is that although she appeared relatively healthy up to the last week or so ,we faced the prospect
    of any exposure to a cold, flu or whatever infection could be the final blow as her white blood counts were bottoming out, or any time she could have a brain bleed out or lung failures as her platelets count continued to fall towards zero, or the leukemia could win the race. Issues we had were with getting a ‘bed’ delivered on demand so she wouldn’t have to climb the stairs to the second floor, or a portable toilet, or even the wheelchair delivered as we were told all this could be made available to us as part of home care. At the end, her condition changed by the day and then by the hour. My wife and I were lucky that I was able to look after her at home right to the end with the help of our children and a palliative care doctor who came on site for a good part of the day before her passing and took the time to make sure she was comfortable, and a nurse that gave us the tools and training to deliver the drugs around the clock to ease any discomfort. At no time did they act like they had other places to go or other patients to look after. Did I know how this was all going to happen so fast at the end or what to expect? No. Would I do some things differently? Yes. But, I didn’t know the questions to ask. I’m guessing each death has a uniqueness about it that just can’t be answered. Tomorrow marks 1 year after her passing.

    • Maureen Taylor says:

      Sorry for your loss, C. Yes, every death is unique, especially for those of us who are witnesses and have to let loved ones go. And I am sure your wife was very grateful for your insistence that she die in her own home in familiar surroundings, with family present. From experience, I know that’s not easy. The one year mark is hard, but we carry on, right? Isn’t that what they’d want?

    • Paul Adams says:

      I think we all make the best decisions we are capable of in these trying circumstances. It is up to the system to put in place the knowledge and structures to help us.

      Thanks for sharing your story.

  • Susan Taylor RN says:

    Palliative Care is not new. What the medical needs to do is start working with and explaining to the family what determines “end of life care”.
    Continuation of treatment of the disease needs to essentially stopped… although in this case, I guess continuing radiation was considered as a measure of application.
    It is an awesome branch of treatment…but not very useful unless the individuals understand it
    I am sorry for you and your wife and hope that she was lead to a peaceful ending.

    • Paul Adams says:

      Thanks very much. Once we got the right medication in place, her last two days were relatively peaceful and she was about to “break through” to say goodbye to our children.

      Best wishes.

  • Denyse Lynch says:

    I am involved in advocating for a National Palliative Care Strategy… and agree with the comments by and on Paul Adams’ story. May I add my condolences to Paul and all, who’ve experienced such profound pain and helplessness. May I also share that while there is definitely a shortage of “people” and a dysfunctional system unavailable to guide us through the end of life journey and that of our loved ones, there are 2 resources I found to assist me when I accompanied my dear dad on this last phase of his life. I found these “haphazardly” while on-line researching for assistance in understanding palliative care, without a human to guide me. I wanted to know how I could help my dad & manage my own grief, in the absence of “human resources”. These are 2 Canadian website innovations on palliative care & grief, developed by some “compassionate humans” from Manitoba. They were a God send because I could access them at any time, day or, night when I thought my heart would break or, when I lay awake nights unable to sleep. I badly needed help to learn about and understand how I could possibly cope with this process of dying – our last “living” experience with a loved one. We know we are going to die 100%! Yet, while there are many supports available to us with other life milestones, so little exists that prepares for the toughest “life experience” -physically, mentally, emotionally, spiritually. Very helpful information and humans available to answer questions can be found at: virtualhospice.ca AND MyGrief.ca – Denyse Lynch

  • Carol Ryder says:

    It is always so difficult. My husband had a short diagnosis of three weeks till death from pancreatic cancer. We never made it to the cancer centre. We decided he wanted to be at home so home we went after diagnosis thinking we had at least three months. That wasn’t to be and his main issue was breathing from blood clots in his lungs which we didn’t know. Our family dr was amazing and had a primary care nurse come each morning to assess his status. We did help the process along by removing his diabetic drugs but maintained lots of fluids by mouth. He could not process foods and he himself decided not to eat. One day before he died the oxygen was not enough or liquid and without really telling me it was the end the nurse and dr told me he needed to go to the hospital for assessment. He was immediately put on IV fluids and more higher levels of oxygen to keep him comfortable. We were immediately bombarded with emergency docs, pharmacologists (he was never on pain meds) and the palliative care. He participated in all conversations and we decided to maintain the best quality of life but nothing to prolong the cancers course as his organs were shutting down. He stayed on IV and oxygen till he died as peaceful as possible.

  • Val Lucas says:

    Thank you for sharing your experience with us. I am truly sorry for your loss.

  • Dawn Pincock says:

    I live in Manitoba and also had difficulty accessing palliative care experts in relationship to my elderly father who was in long term care. Interestingly, I was told that the palliative care team within our nursing home only worked with cancer patients and were not familiar with chronic pain issues outside the cancer realm.
    I did not feel that we received adequate care or counsel at the end of my Dad’s life. I have been lead to believe that quality palliative care can be a godsend, however it is not readily available!

    • Paul Adams says:

      I am sorry to hear that. I too have heard that non-cancer palliative patients, because they are less common, find the system is not as well adapted to their needs.

      Best wishes.

      • Dawn Pincock says:

        Thanks so much for your response and your efforts to bring attention to this serious problem in our health care system.
        It is obvious from the response you have received that many people care about this issue. Perhaps we need to band together as a united front to promote change!
        I would be interested in such a project!!
        All the best,

        Dawn

  • Eric Brooks says:

    They want the bed and there is no positive result possible, so it comes to a decision; let you die! Not easily as with drugs but harshly; starved and dehydrated till you heart stops! Do this to a dog and you go to jail for cruelty to animals! Do this to a loved one and its common medical practice!

    • Pamela Cogan RRT, CRE says:

      I’m sorry you feel that way. I also know that is not the way any healthcare professionals think. Perhaps when emotions are high, it is hard to communicate, but the intent is always compassionate care.

    • Maureen Taylor says:

      Eric, I hope that we can convince you that there is no way those of us who work in the healthcare system “want the bed.” I was the primary caregiver for my husband who died of a brain tumour. I am a physician assistant, and he was a physician. After discussion with him in advance, we INSISTED that he not receive hydration or food in the last week of his life, because we knew that that only prolongs suffering. At the end of life, patients are not hungry, they refuse food if offered. Yes, the mouth gets dry, but this can be alleviated with wet sponges. For the worst distress, there are drugs that can put the patient into an induced coma until “natural” death occurs. But it’s true, sometimes even the “best” palliative care cannot alleviate all distress/suffering, and that’s why my husband wanted (but didn’t have in 2013) the option of an assisted death. Today, he would. As angry as I am that he didn’t have the dignified death he wanted, I do not blame his doctors or the Canadian healthcare system. Yes, as Paul has so eloquently pointed out, we need more palliative care with a team approach, offered early in the disease. But part of palliative care is withdrawing food and hydration — at the end of the day, it will reduce suffering by hastening death. There’s no easy answer, but I sense you had a terrible experience, and I’m sorry.

  • Freda Holmes says:

    I honestly feel your pain, really. My husband died a year after the diagnosis of kidney cancer. Like you, I attended every appointment and was totally invested in his care at home. The CCAC worker asked us to sign a document for an “expected death at home” so police wouldn’t have to be called when that moment came! That was the extent of her advice about what was ahead of us. And I wasn’t shy about asking for help. I was managing the logistical tasks, the catheter care, the personal care, the appointments, the medications. What I was asking was “How do I help Brad through this, knowing that he’s dying?” I told my medical people that at the end of the day I knew I’d be ok but I needed to know how to help my husband. Even the nurses in chemo and both our local physicians AND our city specialists didn’t give us anything. No one told us/me what to expect as we approached the end. We had weekly nursing care come in but her service consisted of ordering more supplies for us as I was capable and more than willing to perform all necessary care. We were so poorly prepared for the last hours of extreme pain, hadn’t been advised that an IV delivery system would have controlled that pain, that it was devastating for all of us who were sitting with him that last night. I firmly believe that PROPERLY TRAINED Palliative Care personnel need to be contacted early, beginning with the diagnosis of a terminal illness, beginning with the doctor who delivers that diagnosis. Palliative care in our community consists of volunteers who complete 6 evenings of supervised reading of several handouts. Those volunteers are then assigned to clients, some of them in nursing homes, some of them with long-term life altering, not necessarily life threatening, medical conditions. They’re expected to “make a light lunch”, sit with the client while the caregiver takes a break. THAT isn’t palliative care, it’s babysitting! I became involved with our local group a couple of years after Brad died, thinking I could be instrumental in filling some of the gaps which we had had to deal with. It quickly became obvious that this was not how our system works here. Several years later I hold the same view that much more could be done to benefit families in my situation and in yours. I just don’t see any solution in our community. (Ontario)

    • Paul Adams says:

      What a heart rending story. I’m so sorry to hear what you went through.

      I hope voices like ours will be heard.

      Very best wishes.

  • Judy Duff says:

    I am sorry for your loss Paul. Thank you for your well thought out article. Palliative care is a very misunderstood area of care. My daughter died of cervical cancer a year ago and I am still mystified as to how that transition should have happened vs how things did unfold. What did we miss? And why?
    I believe there is a lot of education needed to understand how the medical system works…and I don’t think that education needs to learned the hard way by every person and famly who is going through it. It sure feels like it though.

    • Paul Adams says:

      You are so right. Even when services are available, it can be daunting for people at the lowest point in their lives to navigate the system and find them.

      • Maria James-Shier says:

        Thank you Paul and others for your discourse on this important topic.

        As this chat was gaining insights in 2017, I was consumed with providing in-home end of life care for my father. He received stellar care at Sunnybrook Odette Cancer Centre, however once we crossed the threshold from active to palliative care our experience took an abrupt shift which left us feeling for the most part…alone and self-managed. The community care agency assessed he was ‘very fit and mobile’ ‘not requiring a lot of sleep’. Indeed, he appeared functionally appropriate during the day. My Dad was certainly always pleasant, very fit, intelligent and spry. However, as the lung cancer/brain tumour progressed he experienced tremendous confusion which required 24/7 1:2 and 2:1 care delivery. The optics of his behavior during the day did not forecast his care needs on a nightly basis. As the sun set, his confusion rose.

        I am an experienced Emergency RN, and at the time my partner was retired so we were blessed to be able to provide 24/7 in-home care with assistance of family. However, the gaps in service and care delivery ran deep. We negotiated/begged for the maximum PSW coverage so we could sleep during the several months that his condition deteriorated. After many meetings (which took us away from providing care/safety) we were allowed a maximum of 28 hours of homecare per week. This provided for a PSW to arrive at 11:30 PM- 0530 AM so we could rest for 5 nights per week. 2 nights per week we paid out of pocket. As we aspire to meet our loved ones final wishes to remain in the comfort and familiarity of their homes we encounter many ethical/moral dilemnas.

        Our situation demonstrated that even me, as an experienced RN, was struggling to coordinate and provide adequate end of life care. With maximum support, we were required to wake up every 1-2 hours/night to administer pain medication because the care provider (PSW) was not qualified. After several months of providing 24/7 constant care we need a system that provides respite without removing individuals from their homes. We were advised if we were ‘not coping’ then perhaps respite was an option. My Dad served in both the British and Canadian Services. His last wish was to remain at home surrounded by family, in the comfort of his own home, with windows that open for fresh air, and a view of the leaves changing colour in the fall. We felt strongly that we needed to do whatever was required to support him with his final wishes. We are grateful that we were able to succeed against all odds.

        Several key issues continue to arise within our end of life care systems:

        1. Timely & Appropriate access to Acute & Palliative Care resources – and acknowledge cross-over.
        2. Compassionate Leave (CL) : I was fortunate to have an employer that granted me CL. However, not all workplaces (small business) support CL; co-workers may not support the cause even if the employer is mandated to comply. CL creates financial hardship and is not always feasible for families.
        3. End of Life Care provisions are minimal for those that opt to care for family members at home. I question if this is a cost savings to reduce use of ER and hospitalization, why is there not a little more fiscal leniency for family/patient defined needs of care?
        4. Technical support was helpful and timely (hospital bed, commode, over bed table, wheelchair) but gate keepers within the system delay delivery.
        5. End of Life care needs transform monthly, weekly, daily, and hourly. Our community agencies work 9-5 Monday – Friday. If in-home end of life care is to be embraced by family caregivers to assist their loved ones with end of life care provision we must ensure and plan for a support system that can respond to changing condition timely and appropriately to meet patient care needs 24/7.
        As conditions change, families require additional timely & appropriate support.
        I can only speak to our families experiences. Having been involved directly in the care of several family members both surviving and thriving with Cancer Care in Ontario, and those that ultimately required in-home end of life care I can honestly say the gaps in care are consistent and unchanged from 2009- 2019.

        How do we avoid unnecessary Emergency visits: I struggle with this personally and professionally. I welcome suggestions for change. For example:
        One evening my Dad experienced seizures. Without access to NP or MD, we were forced to call 911 and proceed to the ER. After many hours in a hallway with a very aggressive, intoxicated co-patient in restraints we decided as a family that this was not a good situation for our family. My parents were anxious to be left without egress in a hallway at the mercy of the poor agitated and hostile young man suffering beside us. We were worried that we were placed in a precariously unsafe area. How would I assist both aging parents to a position of safety if this situation changed? We waited hours for a CT scan, and it seemed no hope in sight of being re-assessed by the ER MD. I took the liberty to sign my father out of hospital against medical advise. (As an ER RN, this is not something I ever envisioned I would experience in my lifetime). We all knew the cancer had moved to his brain. We did not need a CT to demonstrate the obvious. At this point in his journey…he had not had any further seizure acitivity over many hours and he just wanted to rest at home peacefully. As we arrived home the ER MD contacted us in utter shock that I had removed my father from the ER with a brain tumour. I understood his dismay; however, we were doing our best to navigate end of life care in our local suburban Ontario health system. The plan of care would be unchanged: follow up with Odette Centre in the morning for steroids, which we merrily did. Later in the care journey, we were allowed to have a black box at home for the visiting RN to administer if necessary. Unfortunately this box was never provided in time to be of any use to my Dad.
        Too much, too little, too late.

  • Margaret Riehl says:

    Wow. I learned a lot from this experience you have shared. Thank you.

    • Paul Adams says:

      Thank you.

      • Val says:

        Hello Paul,
        I am so terribly sorry for your loss and for the terrible experience you both had. I came across your story while searching for palliative information. My husband and I have an almost opposite situation. He is terminally ill and was registered with Palliative Care a year ago. We were told by physicians it was the thing to do. What they didn’t tell us was that if you are still alive a year later, you no longer qualify and are cut off. We didn’t realize he would, in essence, be punished for and lose coverage for necessary drugs, simply by fighting and managing to still be alive. What an incredibly sad representation of our medical system. My heart aches for you, so many things that could have been discussed in preparing both you and your wife. The precious last days during which your only thoughts should have been able to be your wife and children. So much of what my husband and I are about to face, could have been avoided by someone just taking the time to give accurate and truthful information. Having experienced lack of information from Social Workers etc. while watching my mother fighting breast cancer, you would think I would have learned. I wish you and your children strength and hope you are well. I thank you for sharing your story.

  • Mary-Jane says:

    I am very sorry for your loss. My condolences to you and your young kids. My mother died of lung cancer in 2006. She had been seeing an oncologist and received radiation treatment after a surgery attempt failed, closed her right up again. She was 80. The radiation was meant to improve her quality of life, which it did. One day her family physician told her that she was done with the oncologist and had the family physician only for her care who was also a new doctor for her. We didn’t get a clear answer as to why she no longer could see the oncologist. Somehow we incorrectly assumed it was because her cancer was cured. No one could clearly tell her what the status of the cancer was. She ended up in hospital some months later and then was transitioned to hospice care at Ian Anderson House. But we never really did get a decent explanation about it all. Let me feeling angry and puzzled and feeling like a lot of information was not shared.

    • Darren Cargill says:

      This is unfortunate Mary-Jane. All too often patients are discharged without adequate knowledge about their illness. One of my staple questions for all patients and families is: “What do you understand about your illness?”

      I spend a great deal of time helping to inform patients and families about their illness that could be done prior to referral for PC services. All patients should have a good understanding of their illness in order to make informed decisions about their care.

    • Paul Adams says:

      That’s a shocking story. But not unusual, I fear.

      Sorry for your loss.

      Best wishes.

  • Laura Peck says:

    Heart breaking and important to realize.

  • Madeleine Cormier says:

    Hello Paul.
    My husband died 2 years and 3 months ago;we had something very similar situation that happen to us that to this day I still question the Ontario Medical Department.
    I wanted to address the matter to the Hospital but had no more energy.

    • Madeleine Cormier says:

      I just also wanted to offer my condolences to you and your family.As you can Realize writing is not my Forte.Communicating about these issues could prevent others to go through it.
      Thank you for your time.
      Madeleine

    • Darren Cargill says:

      Madeleine, it is never too late. You can always address your concerns to:

      http://www.patientombudsman.ca/

      Telling your story helps to make sure it may never happen again to others.

      • Pamela Cogan RRT, CRE says:

        Hi Darren, your comments in response to this thread are wonderfully clear and well-said. I’m an RT, working in ICU and ED, and I have worked at TOHCC. Information given to patients and family when they are overwhelmed by bad news is often hard to process. Very sad story.

      • Darren Cargill says:

        Thanks Pamela.

        That was my intent. When someone is brave enough to tell their story, we need to do what we can help that act of bravery change the system for the better.

    • Paul Adams says:

      So disappointing to hear.

      It is not unusual, at the end of such a harrowing experience, to lack the energy to pursue the gaps in the system.

      That’s why it is so important that Healthy Debate has given us a forum for these conversations.

      Very best wishes.

  • Susan says:

    Well written, although painstakingly so, I am sure.
    Palliative care is so important, especially to those that are living with illness, to provide care during active treatment as well.
    It is so important for all family members. Our system is less than perfect. With budgetary constraints, access to services needed are not always available.
    Information is so valuable. There should be more Navigators available to guide the patients and their families through every step of the way.

    • Darren Cargill says:

      Great idea Susan. We utilize a patient liasion (navigator) at our hospital to help patients benefit from PC as soon as possible, whether it be physicians, social work, Wellness Programs, etc. However, we rely heavily on fund-raising to make these services available (free of charge and by self-referral).

    • Paul Adams says:

      Thanks for your thoughtful comment. I think we can do better.

      Best wishes.

  • Alicia Butson says:

    Paul, thank you for sharing your story of the experience you and your wife had. I regret you had so many difficulties.As you say we need more resources for palliative care, human, monetary and more choices . It seems palliative care is provided earlier now when available, including through palliative care at home.Another preference for many is a residential palliative care hospice,which provides a homelike environment in the later weeks of illness.There, people can have family involved visiting and benefiting from caregivers along with the person.There is a shortage of hospices which are the responsibility of communities to establish in Ontario.Once built the prov. government may help fund the caregiving costs.Your story and more attention these days to “dying”, is hopeful for greater future resources for palliative care.Thank you.

    • Paul Adams says:

      The good news is that I have heard from many people for whom the system worked as it should and their loved ones received the care they needed and deserved. Sadly I have heard also from others with stories similar to mine, and indeed much more harrowing.

      I think the goal should be to make sure that high quality care many are already receiving is spread to those who are not getting it now.

    • Bev Florio says:

      The Ministry of Health, Long Term Care provides very little if any funding to hospices, and why the Canadian Cancer Society does not provide funding to hospice care is beyond my comprehension. Hospices depend primarily on their communities and the wonderful volunteer support. People need to become aware of this, and lobby the MOHLTC and local governments for hospice funding.

      • Chris Reed says:

        I am currently volunteering to bring a hospice to our city as we need to build it with community dollars before the Ministry funds the staffing for the beds. Your comment about the Canadian Cancer Society is interesting – does anyone know why they do not assist with funding for hospices? Millions and millions of dollars are raised by the same communities that need to have a hospice.

      • Paul Adams says:

        Thank you for the work you do.

  • E. Poirier says:

    This is similar to my son’s death. He was dying of lung cancer that had gone to his brain and on his last day was rushed into hospital because he could no longer swallow his meds. Home care had told us to call an ambulance & that he would be put directly into palliative. But no, the ambulance driver said he was instead going straight into emergency where he suffered for 6 hours before a doctor saw him & gave him his drugs intraveniously. Then was put into a ward bed because there was no space in palliative. He died there early the next morning. If we’d known there would be no mercy for him at the hospital we could just as easily have cared for him at home. He would have been more comfortable. There has to be a better way to die than this.

    • Darren Cargill says:

      E. Poirier,

      Sorry to hear about your experience. The system clearly failed you. Too many gaps, too little knowledge. Most Canadians (70%) want to die at home, given the choice, or a home-like setting like Hospice. Sadly, 70% of Canadians die in hospitals that are underfunded, overworked and poorly equipped to deal with end of life care. Your experience is way too common to be an aberration.

    • Paul Adams says:

      A very sad story. Surely we can do better than this.

      Very best wishes.

  • Mary Ellen Renwick says:

    Bravo! Very profound, accurate and a clear reflection of a gap in our health care system.

  • Carol Ramage says:

    Paul, I grieve for the pain you were subjected to during the final days/hours of Suzanne’s life. I am afraid I do not understand why it is necessary(?) to withhold sustenance & I am sure that fact tortures you. My thoughts are with you & my heart goes out to you.

    • Darren Cargill says:

      Carol, palliative care does not aim to withhold food and fluids but as we approach the end of our lives, our bodies begin to shut down. When we override this with feeding tubes and intravenous fluids, it often causes more harm than good. Patients may experience fluid in their lungs (pulmonary edema) and abdomen (ascites) when their bodies can’t handle the extra fluid. Feeding by IV or g-tube (parenteral nutrition) often leads to aspiration (choking) or electrolyte imbalances.
      These measures are often temporary for patients after surgery or treatment in order to recover. Unfortunately, we do not recover from dying. It is a natural process. This is why palliative care is so important early and at the end of life. Palliative care doctors understand how the body changes during the terminal phase.

      I hope you found this helpful.

      • LeeAnn Baker says:

        I found this very helpful as my mother is in pallative care and I often wondered why they would not just provide the fluids and nourishment she needed after her ability to drink and eat naturally ended. I thought they were strarving her.

    • Paul Adams says:

      Thank you for your kind words.

  • Stephanie Holowka says:

    Mr. Adams, First of all I am so sorry for your loss. I read your article and it brought major memories back to me of my mother’s experience prior to her passing over two years ago. For over two years I have tried to write a letter to the responsible hospital, but could not because there were so many wrong things that happened with her care (or lack there of). I too have seen how an oncologist (not even one’s own) could pass a patient off to a pain and palliative care physician who was pretty much unavailable when significant intervention was needed. Even I as a healthcare worker was found helpless in trying to get the palliation that would comfort my mother. My mother had stage IV pancreatic cancer, which everyone knows is pretty much a death sentence. My mother exceeded the average expectancy with that condition, and did not really burden the hospital. The model of Nurse Practitioner from CCAC is good to a point, but fails when a patient needs specific medication or a minor surgical intervention for comfort–but the doctor is unavailable or whatever to arrange for it. We tried contacting her oncologist and were told that she was now under the care of the unavailable physician. After almost 10 days, I called 911 and took her to emergency…where we waited 10 hours there and there was one failed attempt at draining her abdomen. Rather than admitting her to push for imaging to do the drainage, the on call medical service physician sent her home saying she is dying and had outlived her expectancy. A week later, my mother finally got the abdominal drainage done by the imaging department (where it should’ve been done in the first place)…and they drained 9.5L of fluid from her abdomen. Within a week the fluid had again accumulated and she needed drainage again–again another several day wait. Her last few days were her struggling to breath because of the pressure from her distended abdomen. She died in a hospice. Talk about feeling abandoned by oncology and lack there of palliative care. So much more needs to be done for patients and to extent their supporting family members. People need much more medical support.

    There is an amazing book on this topic and perhaps you may have read it. “Being Mortal” by Atul Gawande. I wish that the palliative care that this book presented was the kind that my mother had received. Now I tell people to avoid that suburban hospital at any cost. No real oncology service and definitely no proper palliative care there.

    Again I am so sorry for your loss. Hopefully you sharing her and your experience can help others.

    • Paul Adams says:

      I am so sorry to hear this terrible story. You were deserted in a way that I cannot imagine. It is important that we all push to change these rigidities.

      Very best wishes

    • Dawn Pincock says:

      Hello Stephanie. Your ordeal sounds very difficult. I agree that there needs to be more emphasis on palliative care…..done well it can have such positive results.
      I have read Being Mortal and feel it should be required reading for all physicians and medical students! Atul Gawande is very wise and compassionate in my opinion!
      Dawn

  • Scott Simpson says:

    When my wife was dying of ovarian cancer, we ran into a dilemma: go into palliative care or not. The complication was that to be admitted to the palliative ward, the hospital demanded a DNR order. The logic was that people come to palliative to die, not to get treated and get better. So if the patient wants to be treated for what’s killing them, sorry, no palliative care. If you’re ready to give up and be comfortable, and put it on paper, then perhaps you can come in.

    She chose to stay at home. Exactly 51 weeks ago today, she collapsed in the kitchen as I was giving our three-year-old son a bath. I rushed to her to prop her up and get her puffer, then back to the tub to get my boy safely out of the water. When I hurried back to my wife, she was dead. I debated whether to call 9-1-1 or not, and given that we hadn’t completed the expected death in the home protocol, I did.

    As I closed the door behind the funeral home rep who removed her body, I saw the DNR order sitting on a stool in the foyer. All filled out, minus her signature.

    I’m sorry for your loss. The system is good but can be better. Thank you for doing what you can to push for improvements.

  • Darren Cargill says:

    My sincere condolences to Adam.

    The single greatest barrier to providing palliative care earlier in a patient’s disease trajectory is human resources and an antiquated billing definition. The OMA Section of Palliative has on 172 primary members out of 30,000 practicing doctors in Ontario. Even when you add in secondary members (part-time), that number is only 600. That’s only 1 for every 24,000 patients in Ontario.

    The article clearly and articulately states that palliative care should be provided earlier in a disease trajectory. Why wait until end of life for appropriate Pain and Symptom Management and to discuss Goals of Care? Research shows early palliative care does not shorten a patient’s life and may in fact prolong it (Temel). It also shows higher levels of patient and caregiver satisfaction (Zimmerman) and better outcomes (ASCO). Evidence also shows fewer ER visits and less hospital based deaths when provided in the community.

    Much of the effort to remedy this gap has been focused on building “primary level capacity.” This means training family doctors, oncologists and surgeons to have basic skills in palliative care. But Suzanne had access to these and still did not receive the care she and Adam desired. Clearly more specialists are needed.

    Patients should be able receive palliative care while receiving chemotherapy and radiation, or other treatments (ie non-cancer diagnoses). The barriers faced by Adam and Suzanne are strictly due to local factors like a shortage of palliative care specialists but also historical. I will correct one error in the article that says OHIP will cover palliative care anytime. OHIP defines palliative care as care for a patient in their last year of life when they have forsaken “aggressive treatment.” This contradicts the MOHLTC website which endorses the modern definition of “earlier is better” and occuring concurrently with life prolonging treatment.

    Clearly, access to palliative care must improve and the barriers to that access must be taken down. Even in an area of Ontario that is “relatively rich” in palliative care resources, the gaps remain unacceptable.

    • Paul Adams says:

      Thanks for your very informative comment.

      • Darren Cargill says:

        Thanks Paul. Sharing Suzanne’s story only reinforces that there is a lot of work to be done. Patients should have access to palliative care when they need it, where they need it.

    • H Yamashiro says:

      Hopefully you can move the needle on this through Negotiations and bilateral tables that come from a ratified/arbitrated PSA

    • Judy Lehtola says:

      The way that OHIP defines palliative care -that they will pay for- sounds as if some individuals would not qualify if they refused chemo or radiation and went for alternative methods of treatment. I hope I’m wrong in how I interpreted that.

  • Maureen Taylor says:

    Thank you Paul for sharing this important story of Suzanne’s last week, so eloquently told. Don and I asked for — and received — a palliative care referral on our first visit to his radiation oncologist. The nurse practitioner was surprised — she said most families ask for PC at the end of treatment — but she was delighted that we seemed to be aware and accepting of the fact that the radiation was just for symptom relief, not curative. In the end, it didn’t even ease his symptoms, but whatever. The palliative care team had no issue accepting Don as a patient even though he was still “in treatment.” Why these two different approaches within the same provincial health care system? Can any palliative care directors comment?

    • Darren Cargill says:

      Hi Maureen,
      I can’t comment specifically but much of the time the limitation comes down to a) human resources, b) resources in general and c) misunderstanding that palliative care is no longer end of life care.

      For a) there are only 172 FT palliative docs in Ontario for 14M patients. b) PC physicians often struggle for the basics like office space just to see patients let alone admin support, tech support, etc. c) there are unfortunate disincentives in OHIP that prevent early referral to PC. While not as bad as the USA, the quirks in OHIP (like restricting PC to last year of life and no concurrent treatment) need to be rectified.

      • Joan says:

        So sorry, I’ve lost many loved ones to this disease, now I am preparing myself as much as I can for yet another one

    • Darren Cargill says:

      Hi Maureen,
      I can’t comment specifically but much of the time the limitation comes down to a) human resources, b) resources in general and c) misunderstanding that palliative care is no longer end of life care.

      For a) there are only 172 FT palliative docs in Ontario for 14M patients. b) PC physicians often struggle for the basics like office space just to see patients let alone admin support, tech support, etc. c) there are unfortunate disincentives in OHIP that prevent early referral to PC. While not as bad as the USA, the quirks in OHIP (like restricting PC to last year of life and no concurrent treatment) need to be rectified.

    • Paul Adams says:

      Thanks, Maureen. I was inspired to write about this by your beautiful piece a few weeks ago. It is not easy writing so personally, as you know.

      In the day since my story went up, I have heard from many people. Some were very happy with the care their loved ones received. Others had stories similar to mine. One poor soul had lost three relatives to cancer over the last 25 years and said he saw no improvement in palliative care over that time. It seems the system has gaps, no doubt due to resources, and some of us fall into them.

    • Andrea Bell Zanati, RN says:

      I was thinking that myself. I was RN CASE MANAGER in a busy Emergency Dept in NYC in the US, and a member of the committee to bring active Palliative Care presence to the Emergency Dept. I find it inconcievable that a PC Consult was denied when a patient was recieving “active treatment.” (Although it was clearly palliative treatment, only aimed at symtom relief at an advanced stage of disease.) In the US one cannot be enrolled in HOSPICE CARE (either in-patient or HOME HOSPICE) whilst the patient is receiving ACTIVE TREATMENT for their disease, but exceptions are often made for palliative treatments for symptom management.
      To deny a cancer patient a PALLIATIVE CARE CONSULT earlier on, which clearly educates patients and their families about end of life issues and what to expect, enabling them to make informed sensible decisions about THEIR OWN END OF LIFE CARE, seems tantamount to denying them their rightful ability to direct their own care.
      Yes, PLEASE, Palliative Care Team members, please COMMENT!

  • Cathy faulds says:

    Paul
    I am sorry for your loss and the inability for you to receive a palliative approach to your wife’s care for the benefit of your family.
    For the most part, family physicians and NP provide this care with the continuity of a relationship. I advocate for primary care providers to remain involved with patients who have a cancer diagnosis just as we do with heart disease.
    Only if symptoms require a consult with a family physician with specialized training in palliative care would a patient require formal referral. A very small number of patients require even more specialized physicians in pain management.
    We simply do not have enough specialists in palliative care to provide all the care required in society nor is it necessary.
    Creating parallel care paths for all patients diagnosed with cancer is necessary to avoid your experience.
    I will continue to advocate for strong primary care delivery of a palliative approach to care.
    Take care
    Cathy Faulds
    Family physician and practicing palliative care

    • Paul Adams says:

      Thanks

      • Susan says:

        Please accept my condolences for your still recent loss.
        You’re “spot on.” Surely, we can do better …. both for patients and their loved ones.
        I encourage you to read Samantha Winemaker’s post this morning. Thankfully, there are health care providers who are determined to improve the system.

      • Arlene Henry says:

        Hi Paul- so sorry for your lost – My brother is battling Cancer as well! We pray every single day for him to get better- we put our trust in the Lord. There are some oncology Doctors that sincerely care about the patients and have their best interest at heart. Some do not. It’s unfortunate that you had to deal with finding out about palliative care- My family and I searched the internet for answers- The best hospital left my brother for dead- said he only has two weeks to live- here we are a month letter trying to get him food to eat. Life is so unfair- my prayers go out to you and your family at this time. As for my family we will continue to pray.

    • Deborah Hines says:

      That so uplifting to know. So where is the hope? Just excuses
      I have a friend whose brother has stage 4 pancreatic cancer. Took 3 months of grueling (3types) chemo.
      .one fed the tumor..about killed him. He chose to try alternative medicine. Hes single, older, as his brother who just had open heart surgery 6 months ago…who is caring for him. No advocate has offered to help maneuver thru system …what is a person to do. Ridiculous

      • Mary Kelley says:

        Dear Deborah, Your friend’s brother should reach out to Healingstrong.org. Perhaps there’s a group nearby. If not, there are Facebook groups that address alternative therapies, of which there are so many. Dr. Linda Isaac’s carries on the work of Dr. Nicholas Gonzalez who studied Dr. Donald Kelly’s protocol. Dr. Kelly, a dentist, cured his own pancreatic cancer. Look up Dr. Beard, Dr. Donald Kelly. I am a stage 4 cancer patient in integrative protocols, who also cared for two siblings who has advanced cancer and went all conventional. Because we didn’t know the power of certain natural substances and therapies. My condolences to dear Paul Adams and family.

      • Joey says:

        Hi – I am so confused about all of the care for terminal cancer patients . I took care of my alcoholic brother with sorosis of his liver for over 6 years . He passed at age 35. Having to tell my mom her son passed was so hard . Shortly after that , mom was diagnosed w/stage 4 pancreatic cancer . She was a healthy , active , execised daily , in shape woman who kept up with all annual physical’s , and got around like a 30 year old at 58 & bam , this crummy cancer shows up . The oncologist gave her 2 months to live , she lived for 17 . Chemo was taking any quality of life she may have had if she hasn’t taken treatment . Like the original guy who wrote about his wife , mom wanted to die at home , but she got very sick & was in hospital where they stopped all fluids & food . She was angry with me that she was getting palliative care & I didn’t even know she was . She passed within 2 days & im devastated to say the least . Life is not the same without her & my brother . My dad died prior to them & im alone in this scary world . I cry a lot & wish there were a phone number for heaven.
        Sorry if my journey is off track of others posts . I miss my best friend . My mom . It takes all o have to push thru each day with no one around . God bless you all & Gods peace . Thank you for listening .

      • jasmin says:

        Sorry to hear you went thru this, as my family and I are now facing the tragedy of stage 4 pancreatic cancer. God makes no mistakes and it/s great to hear you still have faith. Every day is a new day and God will guide you as he is guiding us.

      • Karen says:

        Hi Joey, I am very sorry to hear how cancer has affected you life. Hopefully your future will be kinder to you and send you some lovely friends to make the world less scary.

      • Sue says:

        There are people who care about you Joey. I’m so sorry for all you’ve lost. Sending love and prayers. ❤️

      • Jodi says:

        Stay strong, my friend. You WILL get through. My sister, Dad and now my Mom have all died now.
        I am right there with you.
        Try to busy your mind on tasks which focus on you and are positive. You will know happiness again. Not the same; different, but it will come with time, so keep hanging on.❤️

      • Jeff says:

        There is something that can be done, but it’s like committing heresy. The first thing Canadians must do face up the the fact that Canadian Healthcare is broken, and broken very badly. Politicians in Canada get the royal treatment through the nhs but common citizens don’t. What’s even worse? Many treatments Canadians get they are told is the latest most technically advanced. But it’s frequently not. Yes, shiny equipment and a loud beep or two and a staff that constantly tells you how wonderful this new equipment is. But frequently is just that a fraud. I know Canadians don’t want to hear that their “healthcare” really isn’t, but it’s the truth. It’s going to be difficult to fix but if everyone would quit reciting slogans and actually flex some of that Canadian determination muscle that tamed a wilderness And made a wonderful country, Canada would lead the world.

    • Denise H. Knudsen says:

      Please read my comment to Paul as I need help being my spouses main Attendant caregiver at home that’s killing me to see him not receiving better PROFESSIONAL CARE with more treatment answers as regular cancer treatment he can’t receive being added Toxicity that only caused his overall premature terminal degenerative conditions & cancers.

      We are also BOTH METIS 1/2 native by DNA & GENETIC PROVEN BLOOD QUANTUM as our parents history of ancestors both came from Canada except my Husband’s Father’s side is from Norway now in Iceland other than America, his Mother’s Parents both Chippewa with some Cherokee from Canada.

      Canada is where his MD’s received many answers regarding his numerous industrial exposures.

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Paul Adams

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Paul Adams is an associate professor of journalism at Carleton University in Ottawa.

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