What you need to know about palliative care and dying at home
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Question: I have prostate cancer, for which I have been treated a long time. My doctors say that it has now spread to my bones, lungs and liver and that any new treatment isn’t likely to work and will likely make me feel awful. It has taken awhile, but I now accept that I am dying, and I’d like to die at home. My wife is pretty healthy, but is small and not that strong. Both of our kids live in Vancouver. I worry that my wife and I may not get enough support at home to allow me to die there. What kind of support can I get at home when my time comes?
Answer: You may have a fair amount of help available to you – or very little. It all depends on where you live.
Support services are provided by a variety of agencies and groups in Ontario. Some of these services have emerged from grass-roots organizations and are designed to meet the needs of people living in specific areas. Even provincially funded programs vary from one region to the next.
Several recent studies have highlighted the uneven distribution of assistance. In fact, fewer than one in three people with chronic illnesses have access to high-quality end-of-life care, according to a report released in December 2014 by Health Quality Ontario, a provincial health-advisory agency.
Even so, you are smart to be checking into your options while you still have the physical and mental strength to do so. All too often people put off thinking about these issues and then are unable to have their final wishes carried out.
The act of dying ultimately becomes “a 24-hour-a-day process” and patients usually need increasing levels of care as they draw closer to the end, says Blair Henry, an Ethicist at Sunnybrook Health Sciences Centre, who previously worked in hospice care.
Ideally, a multi-disciplinary team of doctors, nurses, personal-care workers and others should be involved in your care. For some patients, their care providers make most of the arrangements for them, once they decide to die at home. However, other patients – or their family members – must play a more active role in the preparations.
Here is what you need to know:
Home visits by a physician
It is essential to have a doctor, or team of doctors, visit you at home on a fairly regular basis to keep tabs on your medical condition. “Someone needs to be providing oversight of your medical care,” says Dr. Jeff Myers, co-chair of Sunnybrook’s Quality Dying Initiative.
That role could be performed by your family doctor or family health team.
There are also palliative-care physicians with specialized training in pain and symptom management. Their expert knowledge comes in handy when trying to anticipate the needs of the terminally ill.
“The difference between providing palliative care at home, compared to in a facility or institution, is that you always need to be thinking what can happen in the next 24 to 48 hours,” explains Dr. Russell Goldman, director of the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital in Toronto.
If a hospital patient takes a turn for the worse in the middle of the night, there is professional help nearby. But that’s not the case for someone at home.
So doctors try to predict what medications and medical supplies might be needed at home based on their assessment of a patient’s evolving medical condition.
The Temmy Latner Centre has two main programs. One treats hospital patients; the other runs one of the largest home-based palliative-care programs in the country. In addition to visiting patients at home, the doctors take turns providing guidance over the phone to patients and their families. “Things can happen at any time of day or night. I feel very strongly that we have to be reachable 24/7 as well,” says Dr. Goldman.
Of course, the Temmy Latner Centre has finite resources. It can provide support only to people living in certain parts of Toronto. Other areas of the city, and the province, may have limited or no access to palliative-care physicians doing home visits.
Nursing care and personal support
Help from nursing staff, personal-support workers, plus certain equipment and supplies are provided through your local Community Care Access Centre (CCAC).
If you haven’t heard of CCAC, you may need a short lesson in health-care funding.
The province is divided into 14 Local Health Integration Networks (LHIN) which are responsible for regional administration of public health-care services.
Each LHIN basically decides how its share of health-care dollars will be divided up between its local hospitals, community-health clinics, long-term care facilities and CCAC among other things.
“Depending on the funding structure of our LHIN – that is the level of care we can provide in the community,” says Enrique Saenz, manager of the palliative program of the Toronto Central CCAC.
In other words, each CCAC sets its own priorities – and some allocate more resources to palliative home care than others. So the level of services varies across the province.
Mr. Saenz believes patients who want to die at home are generally well served by the Toronto Central CCAC because nursing staff receives specific training in palliative care. Toronto Central CCAC also works closely with other health-care providers, including palliative-care doctors at the Temmy Latner Centre and the Dorothy Ley Hospice, to help co-ordinate the patients’ overall needs.
Support may start with a few home visits a week to provide bedside medical care or help with personal needs such as bathing. The service ramps up as the end draws near. “We can usually provide a few nursing visits a day,” says Mr. Saenz. In the final stages of dying, the Toronto Central CCAC offers up to a maximum of 56 hours of personal support per month.
Still, 56 hours for an entire month is not what you would call round-the-clock-care. “We wish we could help more,” says Mr. Saenz. Families usually need to look elsewhere for additional help.
Many community hospices have dedicated volunteers who provide in-home assistance to dying patients and their families.
“There are hospice organizations across Ontario,” says Dena Maule, executive director of Hospice Toronto. “You can go to the website of Hospice Palliative Care Ontario – www.hpco.ca – to locate which community hospice is in your area.”
She says that volunteers of Hospice Toronto work in “four-hour shifts at no charge to clients or their families.”
The volunteers can provide companionship and practical support such as grocery shopping and light-meal preparation – freeing up family members so “they can focus on loved ones or build their resiliency.”And during the time that patients are still mobile enough to leave the home, the volunteers can go with them to medical appointments.
They are also trained to perform palliative-care functions such as bedside care, medication reminders and comfort measures. What’s more, hospices will help with bereavement and give emotional assistance to family members of all ages witnessing the death.
In the final stages of the illness, the hospice volunteers will provide an escalating level of support – so long as the resources are available. Like all organizations, hospice groups have a limited number of volunteers – while the demand for their services continues to grow.
Family and friends
Even with the various forms of support from different groups and agencies, you may still find it’s not enough to meet your needs. You will likely have to tap into your personal network of family and friends for extra help.
You mentioned in your question that your kids live in Vancouver. They may be eligible for a work leave to come home and help you, but the challenge is selecting the best time for that visit. The timing of death can be unpredictable. There is also the option of hiring help – if you can afford it.
Have a plan b
Let’s assume that everything works out and you have enough support to stay at home. You might still change your mind about where you want to be.
“The truth is, your choice can change as your illness progresses, depending on the severity of the symptoms and the measures that can be delivered in the home,” says Ms. Maule.
For instance, “there can be complications that may make it necessary for a person to come into some kind of institution – be it a residential hospice or even an acute-care hospital,” says Dr. Myers.
So it’s a good idea to have a back-up plan, adds Dr. Goodman. He encourages people to apply for a spot in a palliative-care unit of a hospital or a residential hospice just in case it’s needed.
Ms. Maule says that the actual place where you die may be less relevant than how much time you spend at home before going into an institutional setting. “With proper support, a person may be able to have an extra month at home – that, to me, is the quality indicator.”
Tracey DasGupta, co-chair of Sunnybrook’s Quality Dying Initiative, says patients should make sure their families and caregivers are aware of their wishes so that plans can be adjusted should circumstances change. She also points out that family members need to think about how they will be affected by the experience. “It can be a time that is filled with lots of emotion, different kinds of feelings, and different kinds of stresses.”
It can be quite challenging, but very rewarding, too.
A good death
Dr. Shelly Dev, a Sunnybrook critical-care physician, knows first hand what it’s like to have a relative pass away at home.
When her father was first diagnosed with terminal cancer several years ago, he was living in an Ontario community that lacked in-home palliative care services. So Dr. Dev’s father moved into her Toronto home for the final six weeks of his life. Dr. Dev’s mother moved in as well so the entire family could be under one roof. There, he received regular visits from palliative-care doctors and daily nursing care.
Dr. Dev took time off work to be with her father. Although she is a physician, Dr. Dev did not want the responsibility for directing her father’s end of life care. Instead, she preferred to rely upon the expertise of the palliative-care specialists.
Even with the assistance, it was still a lot of effort to care for her father. “We needed somebody there all the time,” says Dr. Dev. “But it was worth it. The experience was certainly sad and heart-wrenching but also so precious and so amazing. All of our time together was uninterrupted quality, intimate time – and that was very valuable,” she adds.
Other relatives and friends were able to see her father in the privacy of her home. He could wear his own clothes rather than being in a hospital gown – and that made a world of difference to him. “They would come by and just hang out with him … and he loved that because, at home, he felt like himself. While he was in hospital, he felt so exposed and undignified that he never wanted anyone to visit him, ” she recalls.
“I know he was content even though he was dying because we were always with him, always together,” she says. “He was where he wanted to be – he was so comfortable and felt so happy being surrounded by his family,” she says.
“That would never have happened in a hospital.” Indeed, a hospital can be a noisy, busy place that offers little in the way of real privacy.
The positive experience of her father’s passing has changed the way Dr. Dev practises medicine. She now puts in extra effort to make sure terminally ill patients are aware they may have the option of leaving the hospital and spending their final days at home.
“It can be a more peaceful and dignified passing at home, really prioritizing the patient’s autonomy and comfort – and we could only achieve this with the strong support of the palliative-care services,” says Dr. Dev.
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Paul Taylor, Sunnybrook’s Patient Navigation Advisor, provides advice and answers questions from patients and their families. His blog, Personal Health Navigator, is reprinted on Healthy Debate with the kind permission of Sunnybrook Health Sciences Centre. Follow Paul on Twitter @epaultaylor.
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Can I choose to die at home? Do I need permission from my doctor?
my wife has been fighting colon cancer for 5 1/2 years she was discharged from her oncologist in December of 2018, it has spread to her liver, lungs, bladder and unitary track. she has been under palliative at home which as been a dismal failure we tried to deal with it until we had to call an ambulance in December 2019 to take her to the hospital and after some test they determined it has spread into her brain and was admitted into the hospital. she does not feel safe at home anymore and we have come to see that they talk a good story about keeping you home but in reality it just doesn’t work for everybody. we now have had the family meeting where to get rid of from the hospital and it seams they have no place for us to go to, we found out they reclassify you so they can start billing you and get the feeling you are really on your own.
thank you. very informative.
needing palliative care for dying father and support for mother
My dad has been diagnosed with hepatocellular carcinoma(liver cancer), 2 days ago. His tumor is large enough that there are no options other then palliative care. I lost my mom 1and1/2 yrs back and he insisted staying in the same house after her passing, he lives alone in India. My older sister lives in India about an hour away from him but he has insisted on living alone after my mom’s passing. We live in Ontario and my husband is a physician. We are willing to bring him here and pay for palliative care at home. What should I expect at the last stages of his cancer, is there a set time for this type of cancer?
Also if there are any organisations that I can contact to get more information? Thank you all and best wishes. Gai
When Mother was diagnosed with terminal cancer, we were told she had perhaps a day, perhaps a few days, perhaps as long as three weeks to live. I was not willing to leave her in a hospital room attached to wires and tubes. with that institutional setting dictating her last hours. I determined to bring her home.
My own doctor spoke to me in ER and told me he fully supported my choice and that if I needed help at any time to call his office and he would arrange it.
Oxygen was laid on for her, and CCAC arranged to have caregivers come in to provide respite for me during the evening and overnight. An ambulance brought her home; the paramedics set up the oxygen flow so she had the best results, then wished us well as they left.
Through the afternoon and early evening of that day she lay in a coma, her cat curled up with her, the dogs lying watchful beside her bed. At six o’clock a favourite PSW arrived to sit with her – we kept talking to her because we knew she heard us (she would react to someone leaving the room and to silence), favourite music on the stereo. I took a short rest as I had been up since seven the morning before ( we had taken her to ER around midnight and been there until mid-afternoon, the whole time I sang to her the songs she loved to hear). The dog and cat stayed with her and Sally, family members kept wandering in to spend time with her, from toddlers to their parents, four generations kept her company.
Around seven someone found a hockey game on the television – not her Leafs, but a hockey game. She had been a fan since early childhood when they listened to Foster Hewitt on the radio and went to the local rink to cheer on the local team. We were a family and close friend watching the game with her, when Sally noticed she had slipped away. The children were not frightened by the experience; their great-grandmother had slept away into her future, as the three-year-old told us,’busy rocking the babies no one had wanted.’
As Canadians we avoid death; we do not think about it, we do not talk about it. We avoid it totally. Time was when death was a part of family life. Elderly family members lived with younger relatives and their children sharing their experiences and knowledge, caring for the younger children while the adults were busy; time was when family meant family. Death was a natural part of life’s events, as it ought to be.
This was a beautiful experience – and I have shared only some of it. It is as I plan mine to be — the grand-daughters with their guitars singing me on my way as I sang to Mother for that long night before she came home…
Thank you for sharing the story of your mother. I am glad to hear her finally time on this Earth was a meaningful experience.
Comfort Life and other sources make the case that a stay in a move to a local retirement home offers a “best of both worlds” solution for seniors facing a terminal diagnosis. Nursing and clinical care is on hand in what is, essentially a home-like environment. Time and time again, this care is shown to extend life and optimize comfort. It’s quieter than most hospitials and much cleaner and safer than most homes. Learn more at http://www.comfortlife.ca/palliative-care.php
This discussion is gaining much attention in Canada at this time. So much that there is an Expo happening this November called “The Natural Death Expo”
I want to leave a positive comment about dying at home. My father is in the final stages of metastic prostrate cancer and we have all along managed, so that he can die at home. It is not easy; there is much work co-ordinating in-home service across all the agencies, but it is not impossible.
My father hates all the ‘assessments’ he has to do (as every agency requires an assessment and he resents talking about his health history over again across five or six different agencies).
However, my dad is in a familiar setting, with his family, and friends can come visit him in his home.
It is intimate (vs clinical) and worth trying to orchestrate if this is your family member’s wish.
Good luck to you all.
Heather (rural eastern ontario)
How did they know it was the final stages as my husband is at home with the same thing and I’m so confused and scared by everything. What are his symptoms in last stages? It would be of great help to me to know. Thx so much and God Bless your family during this time.
I have similar concerns Lisa…I just don’t know what to expect anymore
Thank you (and every one else) who has taken the time to share personal details and opinions about the various scenarios that can be encountered when choosing to assist someone who wishes to die at home. I am contemplating moving a dying relative from a Toronto hospital, where he is alone, to rural eastern ontario for final months of life.
did you find that you had all the necessary resources available to you in your location?
My Mom died recently after a long bout with stomach cancer. Her husband, my sister and I did palliative care in her home. That was anything but a pleasant experience. The levels of paranoia and delirium reached due to starvation and dehydration were beyond our means of care. Nurses came daily and adjusted her medications as needed which kept Mom comfortable but no one expected her to morph into this ” nasty” being she became. I was told to “Shut up ” and get the “f” out of her house because she couldn’t stand my voice and I was weak! She also”gobbed” into a Kleenex and tried to wipe it on my face! Many other memorable moments as well throughout the course of the 3 week live in care I gave. Prior to Moms’ illness we were close and good friends! What a horrible memory to recall now that she has passed. Perhaps the type of illness dealt with makes a difference to the experience shared. I would not recommend in home care to a patient who is not able to eat or drink as it is a slow death with horrible consequences.
My mother is dying of colon cancer. If you don’t recommend in-home care, what do you recommend?