In Prevention Magazine this month there was a very interesting article about a hospice doctor and what is involved in his end of life care for his patients. Sadly, I threw the magazine away and I can't find the article online, but if you can get your hands on it, it's a good read.
In any event, one of my residents passed away today and it made me think about the article. This resident's family chose to finally just let nature take its course. Unfortunately, in my opinion, they did not put the resident on hospice care. So, for the last three months or so, we have tried to feed this resident when they didn't want to eat, we have cajoled them into taking medications that they probably no longer needed and we did not make any changes to their pain medication routine that were worth mentioning. We just continued on as if they were stable or improving instead of making allowances for the changes they were going through.
Sad.
The thing that really hit home for me was the paragraph where they said that pneumonia is one of the least painful ways to die but, because it's easily treated, we cure the patient. This then forces them to continue to live in pain and subsequently die in a more painful manner.
Did I mention how many times my late resident was on antibiotics over the course of the last year? It makes me wonder how much more pain and suffering we caused them by getting them better as opposed to just letting them go.
I realize that this is a very personal choice. Maybe the resident would have wanted to live for as long as possible. I have seen more than one resident with a DNR change their mind at the last minute and do whatever they could to stay alive, so it's not out of the question. Still, I think the resident's Power of Attorney could have made better arrangements for them. Hospice care with an aggressive pain relief program might have actually extended their life and certainly would have improved the quality of the days they had left.
The list of things I don't understand seems to grow longer by the day.
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8 comments:
VERY Important post!!!!!
Aloha from Waikiki
Comfort Spiral
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K. Tree, so sad. I hope to see more openness and attention to end of life conversations. Articles in Prevention Magazine and blog posts like yours can help people discover and choose a different, more gentle path to the end of life. It's important for those of us who observe death on a regular basis to let those who don't know the options.
Before I worked in a nursing center, I thought that one day you just dropped over dead, unless you had cancer or some other long-term illness. Sadly, that kind of death seems to be the exception. Hospice care can be so important and such a relief for the resident and their family, I'm really starting to wonder why everyone doesn't participate. Like everything else, I'll bet the barriers to entry are mostly financial.
Thanks for stopping by, y'all.
I've been bothered by the same issue recently. Many people believe hospice means giving up. Even more believe palliative is the same as hospice. Depending on the setting you are in, things may be a little different. The bottom line is educating the dying person, family and paid caregivers, as well as medical professionals the benefits of planning ahead. Reimbursement issues aside, a lot of people are referred to palliative care only SEVERAL DAYS before they die.
Here is a book I have recommended to a few people: http://www.amazon.com/End-Life-Handbook-Compassionate-Connecting/dp/1572245115
It is a rather brief overview but it's simple enough for family caregivers not to feel overwhelmed.
When I worked at nursing home/assisted living facilities I watched people with pneumonia die. Almost every one of them ended life by gasping for air, moaning, coughing up huge amounts of blood- along with fevers. Try as they did, nurses could not prevent the coughing and gasping for air for long. Of course pain meds were administered around the clock, but I can't say my experience shows me that pneumonia is a painless way to die. Far from it.
Patti, I haven't ever seen the coughing up of blood, but it sure does sound like they are drowning when they go. Maybe it's less painful than other ways of dying (barring a sudden death). I don't know. They all seem like they suffer to me.
Also, I've noticed that every resident I've had who has passed away slowly (versus a heart attack), has run a fever before they passed. The hospice nurses tell me this is normal.
It's hard to watch them go, no matter how it happens.
Yes it is hard to watch them go. I've seen the fever aspect as well- I wonder if it's a normal thing. I took several Hospice Care classes way back when I first began this work and I don't recall hearing about the fevers- but I do recall hearing that pain meds can hasten death, which might not be bad when we consider the suffering. I think, no matter how death comes, human beings will always suffer somewhat. We feel pain, discomfort. We have thoughts and feelings. We feel fear; we fear death as well.
I am big into hospice. I think people need more education on what palliative care and hospice implies. I'm an advocate of comfort and dignity at the end of life--for the patient!
This is a very insightful post.
Doris
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