The past few days have been quiet for us at the hospital. We each try to be there once a day - either together or separately. Food services are still a problem. The people who drop off the food must not be aware that the patient is both blind and unable to move much in the bed - they continue to leave her trays on the table at the foot of the bed. Sometimes a nurse or LPN notices and moves things within reach, and sometimes they do not - and food services takes the stuff away again, untouched. Cans of Pulmocare and bottles of Ensure continue to arrive - along with jello and pudding and soup (the soup accompanied by an envelope of protein powder which we mix in - the envelope is small and has fine print, so even if Marie knew it was there she might not know what she's supposed to do with it.) We convince Marie to sip some of the Ensure (we bring the cold ones from the patient fridge, because the ones that are dropped off are room temperature and unpalatable). The Pulmocare must be what is going into the tube - but I'm not sure why there is a growing stockpile.
Yesterday I found her in the dark at 1 pm. Of the two lights she can control from her call button, the lower fluorescent tube has burnt out (we reported it last week) and she can't reach the switch for the overhead lights - and no-one else had thought to do it.
Seven weeks. Even if we are only there an hour a day, calculate an extra 30 minutes each way to drive there or take transit. Three days a week I can just pop over from work. For Candas it adds up to a minimum of 14 hours a week; for me about 12. Some days we stay a lot more - but an hour is pretty much the minimum. And as the previous posts illustrate, we do have to go. That's more than 182 hours so far.
Marie's generation remembers what it was like before universal health care. In some ways, our generation has not yet processed what end-of-life care ought to be - both personally and societally. The boomers are getting older and, no matter how healthy they manage to keep themselves, we are going to have to figure out what part should be played by our hospitals when that huge demographic approaches the end of life. There is no room in hospitals now, and there are not enough palliative or longterm care facilities. At the same time, it would be foolish to build facilities to accommodate the boomers unless there is a sensible plan for what to do with those facilities when demand stabilizes (assuming the post-boomer society will have lower numbers of aging for a couple of decades until population growth brings us back up to regular demand).
Robert Clinton was telling me a week ago about how his family brought their dad home for the final 7 weeks of his life. He needed round-the-clock care, but the hospital was not a good place to die. So they hired private nurses for those times when family could not be available. It was expensive, and it drained his savings.
What IS our social contract about dying and universal health care? Hospitals - full of strangers and noise and tension - are not places where anyone wants to die, but relatively few of us in this younger generation have had the experience of enduring a relative's final illness and death at home. Of course, I am not talking about sudden strokes and heart attacks, but those prolonged deaths where multiple systems are gradually declining into chaos. We haven't given much thought to palliative care facilities, but we will have to. The field of medicine is more interested in keeping people alive than in providing a good death, so universal health services are usually geared toward systems that keep us going. We are busy addressing disease, trauma, genetic disorders - but we are still unclear about the degree to which our tax-funded system should be managing death.
Marie's condition is not fatal. The botox injection - which we are told will have to be repeated - has worked to some degree. The job now is to restore mobility in someone who is fearful and who has challenges in terms of her sight, her weight, and her arthritis.
Many of the patients in the hospital have a strong yearning for home. I don't hear that from Marie - perhaps because most of her life was spent in a succession of rented houses. According to a researcher I met last week, we now have more people living alone in Canada than ever before. Who will take care of them? What is home? Where do people want to die?
Our house is not Marie's home - she's only been here maybe 20 times. If we were to undertake the palliative role, it would have to be a commitment to her last days - because the stairs to the outside mean we can not accommodate her mobility issues. She's too heavy for us to move her. Once she's in, she's in. The primary benefit to her would be that she'd be with people who know her name, and there wouldn't be the illness of hundreds of others to contend with. Her current roomie is a wanderer with impaired brain function, so there is a security guard in the hallway just outside the door. The constant in and out is hardly restful.
My colleague Stewart has spoken of his family's decision to take care of his grandmother at home - they felt it was the right thing to do. Stewart's a nurse, so he had the skills. Is it wrong of me to say I don't want that job? Shouldn't we all be willing to help our family members die in comfort and dignity?
Right now, there is no doubt that comfort and dignity might be better provided at home than in the hospital. It's not a guarantee - but we're also seeing that it is not a guarantee in the institutions. I don't mind the thought that we, as a society, have agreed to find ways to ease end-of-life care; I find it more congruent with my beliefs than spending pots of money on treatment for disease and injury that are easily preventable (such as extreme sports, diseases related to smoking, obesity and unprotected sex).
So when are we going to have a serious discussion about how we, as a society, proceed? We can't have that discussion when our politicians are busy doing the quarter-by-quarter bean counting because they're hoping by being tough on the economy they can be reelected. During the recession, they should have been buying property to turn into palliative care facilities which can be operated much more cheaply on a per bed basis than regular hospitals. Instead, we're seeing debate over new medical facilities aimed at winning votes in communities because people think we need more full-service hospitals. If our full-service hospitals weren't clogged with longterm care patients, maybe the system would be flowing more smoothly.
We're not only talking about geriatric care here. Intensive Care Units are seeing more and more longterm cases as we make advances in procedures and prolonging life - prolonging it with machine intervention. We're not having that dialogue either. At what point will we recognize that prolongation of life is not always the ethical response for the individual or for society at large?
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