Talking about palliative care can feel like an intimidating task, but starting the conversation now can result in a higher quality of life for years to come.
When most of us hear the term “palliative care,” we tend to think of people with terminal illnesses moving into hospice as they prepare to die, ideally as comfortable as possible and in a state of peace. But the term “palliative” takes on a different meaning when individuals are faced with the diagnosis of an untreatable progressive disease like Alzheimer’s that will ultimately take them to the end of their life, even if that end is more than a decade away.
By Merriam-Webster dictionary definition, palliative care refers to support for a terminal or life-threatening illness that is “not intended to provide curative treatment but rather to manage symptoms, relieve pain and discomfort, improve quality of life, and meet the emotional, social, and spiritual needs of the patient.”
Since there is no known cure for dementia, this means a significant portion of dementia-related care is technically palliative — the goal isn’t to eradicate the disease, but simply to improve and enhance the time that an individual has left.
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For Dr. Kelli Stajduhar, a nurse and current professor at the University of Victoria’s Institute on Aging & Lifelong Health and School of Nursing, palliative care is an approach that informs caregiving rather than an add-on, especially as it pertains to people living with dementia.
“When I think of palliative care for people with dementia, palliative care really is a philosophy of care, not a place you go or a service,” Stajduhar says. “When you think about it that way, the question that you ask is, ‘What is it that we can do to enhance the quality of living up until the time a person dies?’”
It’s no small question. Improving the quality of living for a person with dementia means drastically different things at different points along progression.
In the early days of a diagnosis, palliative care might involve making sure that one sticks to familiar routines and gets plenty of rest. As dementia progresses, it could mean finding ways to access the activities that bring joy to life, such as spending time outdoors or regularly connecting with friends.
Towards the end of life, a palliative approach may result in foregoing a transfer to an acute care hospital for life-saving treatment in favour of the comfort and familiarity of home or being in long-term care.
The philosophy also means palliative care plans are going to be personalized for every person, since no two people will have the same definition of “quality of life.”
One of the challenges for care partners is how to respect the wishes of a person with dementia, even as their cognition declines to a point where they’re unable to advocate for themselves. Ideally, a palliative care approach should begin as soon as a person receives a dementia diagnosis. This could involve a conversation with a family doctor about what the person would like to experience throughout the course of progression or an ongoing dialogue with family care partners.
Knowing what kinds of interventions a person would be comfortable with, where they’d like to live if they need full-time care and what is most important to a person if they do enter a long-term care facility is the cornerstone of a palliative approach.
“Quality palliative care is really person-centred care on steroids,” Stajduhar says. “Quality of life is about living your life in the way that you want. For caregivers, [it’s about] knowing what people want for their physical health as they decline, as well as what they want for their mental health and spiritual health.”
Skill and Art in Conversation
These conversations can be difficult to have, especially when people are new to their dementia diagnosis and perhaps not ready to think about the stage where they may be in long-term care or not able to speak or feed themselves, let alone able to contemplate their own death.
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Family care partners and doctors need to approach the topic of end-of-life care carefully (Stajduhar calls productive conversations about death “a skill and an art”) since words like “palliative” and “dying” can evoke significant fear in people who are already likely anxious about their diagnosis.
Katherine Murray is a certified hospice palliative care nurse with a master’s degree in thanatology (the study of death, dying and bereavement) and the founder of Life and Death Matters, a company that develops and delivers palliative care education and resources. She says it’s important to start these conversations early, as uncomfortable as they may be.
“We encourage patients and families to have conversations about the seriousness of their illness and to help the person talk about and clarify what is important to them,” Murray says. “With advanced care planning, you can say what is important to you and have some of these conversations with your family and your loved ones and medical providers. And then you can get on with living.”
No Time Like the Present
Michelle Pante is a licensed funeral director in British Columbia and the co-founder of Willow End of Life Education and Planning, an online-based company that helps people come to terms with their own mortality in a way that helps them clarify who and what matters most today.
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While death and end-of-life education and planning comprises Pante’s work, she’s also experiencing the issue of palliative dementia care first-hand, as both of her parents are currently at different stages of dementia progression.
Pante’s father lives in the family home with caregivers providing support 24/7 and her mother has been in a long-term care facility for more than seven years. Pante wishes that someone had advised her to have a frank discussion with her mom about what she wanted her end-of-life care to look like early on. She feels like that conversation would have given her the power to make different choices as a family care partner.
“We didn’t have enough advance care planning conversations because we didn’t grasp or accept the expected progression of the disease and the fact that Mom would not be able to talk about her wishes as her disease advanced. Yes, the Alzheimer’s caregiver’s support group did provide a lot of insight but even there, people did not talk about their experiences with end-of-life planning, death and dying,” Pante says. “No one said, ‘Mom, your capacity is going to change such that you will need help. Do you want to get help in the house and stay in the house or do you want to go somewhere else?’ We didn’t have that conversation. And that’s partly because that’s a really hard conversation to have. But you have to acknowledge it.”
Naturally, the concerns surrounding palliative approaches to care become more urgent as people with dementia move to long-term care facilities or bring in full-time home care workers. If the person with dementia is unable to self-advocate at that point, Stajduhar suggests that families are very clear with care providers about what the person they care for would want.
For example, suppose they’d rather not be put on a feeding tube or be given life-prolonging medication to treat other medical conditions as their dementia progresses. In that case, that should be made clear immediately.
Thinking about end-of-life is difficult, but since it is a certainty for all of us, acknowledging the palliative aspects of dementia care can make both those living with dementia and their care partners feel a sense of empowerment that can enrich the remainder of their lives.
“There’s lots of research to support the fact that when we do that kind of planning, upstream and advance with people, the outcomes at the end of life are dramatically better,” Stajduhar says. “You see more family involvement in care. You see fewer treatments that are not beneficial for people. You see better management of pain and other symptoms. You see a whole shift in orientation to care and to comfort.”
4 ESSENTIAL TOOLS FOR END-OF-LIFE CARE
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Dr. Kelli Stajduhar says that even health-care workers can be nervous about taking a palliative approach to care, which means that people with dementia and their care partners often have to advocate for a palliative philosophy themselves.
These resources can help put people on the right path when it comes to end-of-life care:
Advance Care Planning. This website is full of resources to help individuals plan and record their wishes for care as their condition progresses.
Life and Death Matters. Katherine Murray’s website offers educational resources, including her books Integrating a Palliative Approach: Essentials for Personal Support Workers and Essentials in Hospice and Palliative Care: A Practical Resource for Every Nurse.
Dignity in Care’s Patient Dignity Question. The question of “What do I need to know about you as a person to give you the best care possible?” can help both caregivers and patients reframe the purpose and direction of their care.
Willow EOL 5-Minute Legacy Love Letter. This free tool includes a set of prompts to help individuals write letters to people they care about. There will be a time when you can no longer communicate in the same way with each other. Willow’s Love Letter can help both those with dementia and family care partners express and share their love now, or it can be a keepsake for yourself or future generations.