Palliative care, hospice and the last weeks

Before we start, a note. This lecture is about the end of life: palliative care, hospice, the last weeks and, briefly, medical assistance in dying. Go at your own pace.

Kathleen O'Brien is fifty-eight, a real estate agent in Peterborough, from an Irish family that argues about hockey. Her father, Michael, is eighty-six, with a cancer that won't be cured. He wants to be at home, in the chair where he can see the lake, with the radio on. Kathleen wants that too, and doesn't know how.

So here's the question. What is palliative care, what does it cost, and what should Kathleen expect in the weeks ahead? I'm not a doctor. This is general information, not medical advice; take your own questions to the care team.

Palliative care is comfort-focused care: easing pain and symptoms and supporting the family, whether or not treatment continues. Ontario's own government page says there is no cost to patients for medically necessary palliative care at home, in hospice or in hospital. Long-term care residents pay only their usual room co-payment. You reach it through the family doctor or nurse practitioner, Ontario Health atHome, or the hospital.

Ontario's Compassionate Care Act of 2020 requires a provincial framework for fair access to palliative care. To find a hospice, Hospice Palliative Care Ontario, a charity, runs a directory and an information line, both on the course page.

The last weeks. The Canadian Virtual Hospice, a respected source, describes them. More sleep, sometimes suddenly. Less appetite and thirst, and pushing food can do harm as swallowing weakens. Breathing that changes rhythm, with pauses. Some confusion or restlessness, where reassurance helps more than correcting. What family can do: be there, hold a hand, play his music, keep talking to him even when he seems asleep.

For Kathleen's job: Ontario's family medical leave protects it for up to twenty-eight weeks when a family member is at significant risk of dying within twenty-six weeks. It's unpaid. Employment Insurance compassionate care benefits can pay for up to twenty-six weeks, at fifty-five percent of earnings, if she qualifies.

Briefly, medical assistance in dying. Legal in Canada since 2016. A person must qualify for Canadian public health care, be eighteen or over and capable, have a serious, incurable illness, disease or disability with advanced, irreversible decline and suffering they find unbearable, and ask voluntarily, with informed consent. A terminal diagnosis isn't required. It takes two independent assessments, and the person can withdraw at any time. Ask the care team, or Health Canada.

Now, their side. Michael has told everyone what he wants: the chair, the lake, the radio. It's fair to guess that what matters most to him now is comfort, company and being home. Ask him, and let that guide the plan. Try: Dad, what matters most to you in the next few weeks?

Let's change one fact. Michael has been in long-term care. Palliative care happens there too: the home's staff and a palliative team can care for him where he is, and he pays only his usual co-payment. The lake becomes a photo by the bed, and the radio still plays.

The mistake families make is waiting for the right moment to ask about palliative care, as if asking gives up hope. It doesn't. Palliative care can start alongside treatment, so starting early puts the pain plan and the night-time number in place before the hard week.

Here's the rule, in one breath. Palliative care is comfort, it's free where medically needed, and the sooner you ask, the more choices your parent has.

This week, ask the care team two questions: what should we expect in the coming weeks, and who do we call at three in the morning?

Next time, the last lecture: grief, the first practical tasks after a death, and where to find help from here.