Nearing end of life

Every life story has a beginning, middle and end. Beginnings we most often celebrate, endings we more likely fear. Even if we feel comfortable thinking and talking about dying, death and end of life, living at or near the final stages of life, profoundly changes the way we think about many things. The meanings we attach to everyday life events and common objects may deepen. Who and what we most value may shift. Importantly, our everyday tasks may change; the ones we do, want to do, need to do, expect or hope to do. This module is about living near the end of life, about the process of dying and about the supports that can be used to enable this final transition. Making sense of our life, leaving a legacy, managing discomfort, tapping into spiritual resources, doing things that matter and engaging with those who matter all become important tasks during this final life course transition. 

Statistics Canada estimates that approximately 247,000 deaths occur nationwide each year. It is believed that every death could affect the wellbeing of five other people. This means that every year, death and dying can potentially affect over 1.4 million Canadians. Knowing what to expect, and who to turn to for help, can ease our worries as we navigate this emotionally difficult, though potentially intensely spiritually meaningful transition.

In Western countries like Canada, death remains something of a social taboo. Just thinking about it can be highly uncomfortable, never mind having to cope with our own eventual death or the passing of someone we feel close to. For us as senior citizens, the end-of-life transition marks the completion of a lifetime filled with both personal and world history, the conclusion of diverse and treasured relationships, and the celebration of a unique life lived.

The totality of our life’s experiences form the backdrop of this transition into the great unknown. It is understandably a sensitive time for all involved, making it difficult to address the many challenges and needs that we have at this time. Yet it is essential that we maintain our sense of dignity and quality of life as we go through this last life journey. To die well and to live fully at the end of our life requires support, love, compassion and knowledgeable guides by our side.

What is end-of-life care and palliative care?

In an already stressful time, navigating the healthcare system can seem like an additional burden. We may encounter terms like ‘palliative care’ or ‘end-of-life care’ which may be alien to us.

Palliative care is treatment, care, and support for those living with a life-threatening or terminal illness. The goal of palliative care is to reduce suffering and improve quality of life – to allow the dying person to be as well and active as possible during the time they have left.

In medical settings, end-of-life care most often refers to the part of palliative care that involves treating those who are expected to pass very soon. Just like palliative care in general, end-of-life care focuses on pain management and dealing with the heavy emotions, only more intensely since the time is approaching. In other settings, end-of-life may also refer to a stage when people feel they are in the last phase of their life, nearing the end of their life, even for those not living with a terminal illness.

While death and planning for it may be difficult topics, it is in our best interests to engage with it. ‘Advanced care planning’ is when we talk about the possible scenarios with any chronic or terminal condition, health, and personal care. Our wishes about our health and personal care are then used to create a written plan. This is usually detailed in a formal will or a medical record. The plan will help  care providers and family feel more comfortable about making decisions on our behalf if we become unable to do so. Read the 2019 Pan-Canadian Framework to learn more about Advance Care Planning. 

When does end of life begin?

Each person’s end-of-life experience is unique. No one can really predict what may happen at the end of life, how long the final stage will last, or when the exact moment of death will actually happen. The process is influenced by factors like the specific illness, medications being taken, and the person’s overall health.

We may feel we are near the end of our life if given a terminal illness diagnosis.  However, many people die without a diagnosis of a terminal illness. Many seniors especially those living with debilitating chronic illnesses may feel in their own minds that they are coming to the end of their life. For others, the death of a partner may initiate a shift in their perspective. Moving to a long-term care setting, for some, may also focus our thoughts on own mortality.

What might we be occupied with at the end of our life?

Next year, I will turn 90 years old. I never believed that I would live for so long. I no longer have the power I used to. Some days are terrible, and I don’t want to live anymore, but other days are okay.
– Vlasis (story gathered by Andrew Hodes)

Sadly, for many of us, while we might feel that we are living near the end of our life, the services we receive may not consider how this perspective changes our sense of time, future goal setting, and the relative importance of everyday tasks. Service providers may not respond appropriately to our desire to talk about our own death and dying at a time when we may be asking big questions like “what is the meaning and purpose of my life.” As best selling author and physician Atal Gawande illustrated in his book, Being Mortal, the need to be free of pain, to feel connected and cared for and to feel part of something bigger than ourselves may become paramount.  There may be many end-of-life tasks that we feel the need to undertake. Tasks such as healing broken relationships, saying good-by to loved ones, making sense of our own lives through telling our life story, reconnecting with spiritual and religious practices, coping with end of life anxieties and loss of hope, leaving important legacies, stories, memories, and well wishes for family members, friends or even long valued charities or causes. While we might feel the need to undertake these tasks, our changing bodies and decreased energy levels may prevent us from engaging in them fully. This is where an occupational therapist can help.

How can an occupational therapist support me and my loved one at the end-of-life?

Occupational therapists are members of a diverse team of service providers who provide end of life and palliative care. They play an important role in supporting clients, families, and caregivers in maintaining a sense of togetherness, participation, and living – even in the midst of dying.

Occupational therapists ask the question, “What is important to you as you enter this new phase of life and how can we help you do the things you need to do and continue to be the person you want to be?”

More specifically, occupational therapists may help us to:

• manage pain and remain physically comfortable
• optimize our sense of control over our remaining life choices
• maintain optimal levels of physical functioning through use of special equipment, assistive technologies or modifying our home environments
• overcome obstacles to maintaining our valued social relationships and to continue to connect with family, friends and others in our communities.
• manage our fears and anxieties
• link with other needed professional health services
• make sense out of our life and to find purpose in our remaining days
• support our efforts to reconcile with friends or family, and to say good-bye
• leave a legacy through sharing our life story or special gifts

I’m currently working with a client who has end-stage dementia and Parkinson’s. We recently transitioned her to a residential hospice. My role here is to talk to her about what I could do to make her comfortable and help her stay safe – it’s a case of targeting moments and building that sense of comfort and rapport when I can. Her husband and I have difficult conversations about her thoughts, wishes, and values. We revisit old conversations they had had as a couple on the topic of dying. My client long made it clear to her husband that she didn’t want to die at home. As much as he was on board with this, we encountered some resistance with him accepting the finality of things. I’ve had to carefully help him understand that the transition to hospice isn’t negative despite what it seems.

 

– Laura, occupational therapist

To find an occupational therapist to support your end-of-life journey, ask your family doctor, another primary care provider or try this online search tool.

If you can’t find an occupational therapist in your area, consider sending a message to your local care provider or talking to your MPP.