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


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163 comments

  1. Cathy faulds

    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

  2. Maureen Taylor

    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

      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.

    • Darren Cargill

      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

      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

      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!

  3. Darren Cargill

    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.

      • Darren Cargill

        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

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

    • Judy Lehtola

      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.

  4. Scott Simpson

    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.

  5. Stephanie Holowka

    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

      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

      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

  6. Carol Ramage

    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

      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.

  7. Mary Ellen Renwick

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

  8. E. Poirier

    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

      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

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

      Very best wishes.

  9. Alicia Butson

    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

      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

      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

        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.

  10. Susan

    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

      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

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

      Best wishes.

  11. Madeleine Cormier

    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

      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

      • Pamela Cogan RRT, CRE

        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.

    • Paul Adams

      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.

  12. Mary-Jane

    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

      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

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

      Sorry for your loss.

      Best wishes.

  13. Margaret Riehl

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

  14. Judy Duff

    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

      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.

  15. Freda Holmes

    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

      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.

  16. Eric Brooks

    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

      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

      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.

  17. Dawn Pincock

    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

      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

        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

  18. Val Lucas

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

  19. Carol Ryder

    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.

    • Paul Adams

      Thanks for sharing your story.

      Sorry for your loss.

      Very best wishes.

  20. Denyse Lynch

    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

  21. Susan Taylor RN

    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

      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.

  22. C Turnet

    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

      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

      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.

  23. Marti

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

  24. C Turner

    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

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

    • Paul Adams

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

      Best wishes,
      P

  25. Pamela Cogan RRT, CRE

    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

      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.

  26. Anupam Sharma

    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.

  27. Marilyn

    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.

  28. Wendy Matton

    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

      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.

  29. Ken Rockburn

    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

      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

  30. Sherry Agar

    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

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

  31. JBG

    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

      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.

  32. Suzanne

    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.

  33. Rebecca Fuller, APRN-BC, ACHPN

    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

      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.

  34. Dana Brynelsen

    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.

  35. Paul Henderson

    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.

  36. Sandy

    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

      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.

  37. Patti LeBlanc

    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

      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.

  38. Jack Pelton

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

  39. Deb Rothschild

    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

      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.

  40. Kate Henderson

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

  41. Bonnie

    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

      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.

  42. Jennifer goldup

    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.

  43. Marie

    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

      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

      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.

  44. Helen Smith

    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

      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.

  45. Pippa Richards

    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

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

      Thanks for writing and for the work you do.

  46. Stephanie

    “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

      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.

  47. Rhonda

    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

      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.

  48. Juliana Schmitt

    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

      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.

  49. Dr. Brenda Sabo

    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.

  50. Jamie-Lynn

    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

      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.

  51. Chris

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

  52. Kristine

    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

    • Paul Adams

      Thank you for your comment and best wishes for your important work.

  53. Barbara

    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

      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.

  54. Sandi Hebley RN, CHPN, LMSW

    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

      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.

  55. Kathleen Broglio

    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

      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.

  56. Jenny Robins

    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

  57. C Smith McLeod

    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

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

  58. Vickie boechler

    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

      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.

  59. Lynne Neveu

    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

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

      Best wishes.

  60. Neal Harth

    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.

  61. Sharon Ciebin

    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

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

      My very best wishes for the weeks to come.

  62. Barbara Lambert

    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.

    • Paul Adams

      I agree. Thanks for taking the trouble to add your voice.

  63. Sharon Anderson

    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

      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.

  64. Pam Williams

    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

      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.

  65. Jamie

    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

      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.

  66. Elizabeth

    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!

  67. Alison McArthur

    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

  68. Siobhan Toomey. Ireland

    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.

  69. Miriam Mann, Emerg Med

    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.

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