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We need more resources for palliative care patients at home

As a hospital-based palliative care physician, I often receive requests to see patients who are in hospital that read something like “85-year-old with metastatic colorectal cancer. Please see for symptom management and possible admission to the palliative care unit.”

When I get those requests, I find myself hoping that the patients have such advanced cancer that they are likely to die in the next days to weeks, or that their symptoms are so mild that they can easily manage at home. Anything in between is often a nightmare for me, and I suspect the patients, their families, and the other people caring for them, because the system is not well designed or appropriately funded for these “in-between” patients.

I found myself in this situation recently. I saw a *woman in her 80s who had a newly diagnosed cancer that had spread to partially block her kidneys. This new diagnosis was likely to lead to her death in the next while, but right now wasn’t causing her many symptoms. She had multiple sclerosis which was progressively getting worse as well as mild dementia. After discussion with the medical team, my patient and her husband decided that the harms of treating the newly diagnosed cancer and kidney failure outweighed the benefits.

Because the patient no longer needed to be in an acute care medical bed, I was asked whether I would transfer her to our palliative care unit. Prior to admission, she had assistance for an hour each morning at home, which the government paid for, to help her get dressed and into her wheelchair. Her husband cared for her the rest of the day, helping her with eating, using a commode, and getting to bed in the evening. Although he was relatively healthy, he was in his early 90s and was finding it increasingly difficult to care for her at home. And that was before the new diagnosis of cancer and kidney failure!

My assessment was that although I wouldn’t be surprised if she died within three months, it was more likely that she would live for six to 12 months.

We have a 10-bed palliative care unit in my hospital. Most of our patients come from the medical and surgical wards with symptoms such as shortness of breath from heart failure, or pain and vomiting from cancer. Their underlying disease is no longer curable and they wish to focus on alleviating their symptoms. Because of our experienced staff, we are usually able to do this better than on the medical and surgical wards.

However, we only accept patients who we think are likely to die within the next three months, and most die within a couple of weeks. If we didn’t have these strict admission criteria, our 10 beds would soon be filled with patients like the woman I just described, and we would not have beds available to meet the needs of the many dying patients admitted to our hospital.

Most palliative care units in the city have similar admission criteria, which means that patients in hospital who are likely to die within three to 12 months but require considerable help to manage at home are often faced with unattractive and limited care options, as a recent Healthy Debate article reported.

A palliative care unit or hospice would be an excellent place for my patient to go—she needed quite a bit of care now, was almost certainly going to get weaker over the next couple of months, and might well develop pain and shortness of breath in the future from her newly diagnosed cancer and kidney failure.

However, because of our three-month time restriction, I said I wouldn’t admit her to our unit.

She could go home, but it was unlikely that the government would pay for much more home care than she was already getting (she lives in a region of Ontario where palliative home care support is not as readily available as in other areas). At home, her husband would struggle to care for her and would almost certainly suffer burnout. If they reached the point where they couldn’t manage at home, an attempt could be made to admit her directly to a palliative care bed from home. Most likely, no such bed would be available, and she would go to the emergency department and be admitted to the same ward she left. Maybe at that point I would decide that she was sick enough to come to our palliative care unit.

Another option would be to send her to a nursing home or long-term care institution, but the wait times for long-term care beds are long and many institutions struggle to provide the dedicated and intensive palliative care that people like her require at the end of their lives.

In the meantime she would remain on the medical floor and not get the care that is best for her. And other patients who need a medical bed would lie on their stretchers in the emergency department for longer than necessary.

Health care worker burnout is talked about a lot these days. This is an example of why. Even though I intellectually believed I was doing the right thing by reserving our scarce beds for people who had more symptoms than she did, I felt like a cold-hearted jerk.

I was providing rational care, given the system I was working in. But I wasn’t providing good care. And not providing good care on a regular basis wears you down.

Currently, people who are wealthy enough can afford to pay for the privately funded home care they need. I know. I recently arranged for a private company to provide a personal support worker to visit my mom for two hours a day while I was on vacation. Thirty-eight dollars an hour, plus HST. Most people can’t afford that for an extended period of time.

It seems clear that we need to spend considerably more public resources on better home care. We also need to fund and adequately staff the right number of long-term care beds for those who can’t be cared for at home.

This won’t be cheap and finding the money won’t be easy. But we need to try.

*To protect confidentiality, this patient is a composite of patients I have seen recently.

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