My first official introduction to Parkinson's was with a neurologist who, as part of his overall neurological assessment, at one point began to check me for rigidity. Being a nurse and knowing what he was doing, I said to him, “So you're assessing me for Parkinson's,” to which he replied, “I'm not assessing you for Parkinson's, you have Parkinson's.”
Suffice it to say his less than warm-and-fuzzy approach was hardly comforting, and resulted in me not going back to him.
A few months later, after starting to see a movement disorder specialist--a sub-specialist within neurology--this well-meaning person offered me what he no doubt considered assurance but was nevertheless equally unhelpful. He said, “Don't worry, Chris, you don't die of it”—Parkinson's, that is.
I replied to him, “So let me get this right. Barring other unforeseen circumstances, I'll die of Parkinson's-related complications, which I wouldn't have had if I'd not had Parkinson's. Would this mean that people with AIDS don't die of AIDS, they die of AIDS-related complications?”
Needless to say, he understood, and agreed with the point I was making.
But being well-meaning doesn't make one competent. This is not to suggest that in other aspects this person lacked competence, but in that circumstance he most definitely was not competent.
What would be the significance of his comment? I mean, what difference would it really make? I, being a palliative care professional, was able to step back and look somewhat objectively at the situation at the time. I knew he didn't mean to be unhelpful, but he was, nevertheless. He, as the professional with knowledge and expertise, had the ability to impart this to me as the patient.
Most patients are not like me. They really don't know what they don't know. The information a neurologist provides can make a huge difference to shaping their understanding of their disease and what their future will look like.
The significance is this. If a doctor can't help me see what I don't yet see, what would I do differently? For example, if ten years from now, when I planned to take the Mediterranean cruise I've always longed to go on, at that point my disease has progressed to the point at which I'm no longer able to, would I have done so sooner? One might transfer this to any number of other situations as well, including compassionate care leave, taking time simply to be with family, etc.
Some people may not want to know what they don't yet know, in which case doctors shouldn't barrage them with information they aren't prepared to hear. But neither, too, should they be the encumbrance to patients receiving information they are prepared to hear.
What does “support” mean to people with Parkinson's? We have a health care system that has historically focused on assessment data that it acquires through any number of objective means—scans, biopsies, bloodwork, and any other variety of tests that can provide very helpful information—but that tell absolutely nothing about the patient's subjective illness experiences, those being what people feel as they live with illness.
I'd like to share a quote from a physician I worked with in Vancouver who did a study many years ago on what dying people want. Although I wouldn't necessarily say that I am dying, per se, the issue transcends beyond so-called dying people to everyone receiving care. He says:
“The way health care providers talked to me caused me more pain than the disease itself.”
This is the theme which came as the greatest surprise. It is one I didn’t want to hear. Initially I dismissed and trivialized the experience of the co-researchers. But it is a theme that could not be ignored for long.
This was a recurrent and resounding theme throughout the entire study, and Dr. Kuhl is currently conducting further research.
Living with illness means living with suffering, whether it's Parkinson's disease or any other illness. But we have a system with health care providers who are being constantly exposed to suffering, day in and day out. Progressively over time, they experience fatigue and find it challenging to know how to respond to it.
This is where hospice palliative care fits in. Hospice palliative care is not just about caring for imminently dying people, and should not be limited to just specialized programs that focus exclusively on this type of care. The definition we work with in Canada is as follows: Care that aims to relieve suffering and improve the quality of living and dying.
This is not mutually exclusive to care that might aim for cure. But this is especially relevant for illnesses that do not have a cure, which includes any number of disease types, including Parkinson's.
In fact, hospice palliative care is really just good health care and provides a model for how to do this. The reason the field of hospice palliative care exists at all is simply because people made the observation that we weren't providing good health care to people who live with progressive life-limiting illness.
It is important to note that 90% of us will die of progressive life-limiting illness of one form or another. Fewer than 10% die suddenly. Societally we must ask how we want to care for those 90% of people who will one day find themselves in these circumstances. What should this look like?
I'll make one additional observation. At this point, we have a system that is grossly inequitable. People who live with chronically progressive disease types receive a much lower standard of care than people living with illnesses that are more acute in their decline, illnesses such as cancer. People with chronically progressive diseases usually, at some point, end up in long-term care. If you ask anyone if that is a place they want to go, they will almost always answer no.
It should be noted that long-term care is not long-term care anymore. It is mostly end-of-life care, such that the average length of stay from admission to discharge--that is, death--is under two years. The long-term care sector has not been equipped to deal with this hugely different demographic.
I'll ad lib here for a couple of minutes. I was speaking to a group last night, a group of people who work exclusively in long-term care. I asked them who there wanted to go to long-term care. Not one hand went up, and there were about 40 or 50 people in the room.
I said, “Wait a second. Who here wants to go to long-term care? You guys work in it.” There was not one hand.
So I ask the question: why have we created a system that nobody wants, and what could be done differently?
You can analogize this to the psychiatric facilities that existed many years ago, where people were warehoused and segregated into big boxes. That's what we're doing with our dying population, as more than 60% or 70% of us die in big-box institutions. It doesn't need to be this way, but we've resigned ourselves to believing that the system we have is the only system we can have.
What could be done differently?
Create smaller boxes. Smaller boxes mean more individualized care. That's what residential hospice is--nothing more, nothing less--and it doesn't need to be limited to people who are imminently dying.
Why is this important? Because the setting matters. If the setting didn't matter, you could take all the same care you would provide to anyone in the most beautiful of settings and provide it to them in a prison cell, but their experience wouldn't be quite so warm and fuzzy.
Why can we not make settings that are more integrated into our communities, and by doing so, allow people to live within our communities in a more integrated way?