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.