My Personal DNR Order
HCR -- End of Life Anecdotes
HCR -- Patient-Centered or Profit-Centered?
A public Facebook group "The Right to Die," focused on medically assisted suicide and euthanasia, is approaching four and a half thousand members at this writing.
I'm recording here for future reference a couple of my own comments there.
This has become quite a long thread of replies/comments. I see virtually all favor the medically assisted dying option. At present seven states allow that option when approved conditions are satisfied and it's under consideration in others. I haven't read the particulars but Wikipedia has a good article on the subject, as well as this link which turned up in a search....
https://euthanasia.procon.org/view.resource.php...
It needs to be known that nearly all good assisted living facilities now offer what they call "memory care" sections, designated parts of the operation where residents with early-onset dementia live under the care of trained employees available around the clock, usually on call but sometimes constantly depending on the facility.
Assistants do everything from simple guidance and companionship to laundry, simple exercise, help with meals, bathing and other personal care (including changing disposables, followup from bladder/bowel incontinence, changing clothes or bed sheets, etc.). It's not a hard job but by no means one that anyone wants to do for free, so assisted living staff only earn a bit more than fast food workers, if that. Nevertheless, many are very dedicated to their jobs and with experience become quite competent in what they do.
During fourteen years as a caregiver I saw the whole spectrum of non-medical care and care-givers. Like with any other job, experience is the best teacher and you can tell when an experienced caregiver is at work. My mother's final years included about two years in a place where someone would help her with bathing, check on her daily to be sure she was safe, guide her to activities and outings, keep her from getting lost (it was a multi-story place with outdoor gardens, swings, etc.) and remind her when it was mealtime to go to the cafeteria.
When she broke her arm and had to go to a nursing home we were fortunate to find a place where care was exceptionally good. She lived there another two years, and her health was good enough she only took one prescription and a daily vitamin until her final months which were mercifully fast. (She was diagnosed with a rapidly growing, inoperable lung tumor and was gone within three or four weeks.)
In her case she clearly had dementia but was ambulatory and conversational (though it was always the same conversations) to the end. I always felt she was a cash cow for the facility since she was so little trouble. She was very meticulous, made her own bed and managed her own toilet needs. But along with everyone else in the place she used a wheelchair to travel, either to visit others or navigate to the dining room where all the tables were on castors an the only chairs were for staff and visitors. We were very blessed to have access to such an excellent place and she was 92 when she died.
I mention all this simply to underscore that the word "dementia" means different things to different people, and the range of possibilities is greater than most people know. In one place I worked the husband (whose wife could no longer manage him) lived in memory care and his wife lived in a different part where she could socialize with others, attend activities (with or without him) and have her meals separately. (Memory care residents often have food prepared specially to be finger-foods and in come cases ground for spoon-feeding. In some cases they also cannot have liquids unless thickened with a tasteless food thickener.) Memory care units are also locked, with access via a keypad for security.
Before making a snap judgement about assisted dying, I would advise doing plenty of study, considering all the available alternatives. That includes, of course, filing an advance directive for medical care and selecting at least three agents who have agreed to bear that responsibility. This document should be updated every three or four years to insure the agents are still alive (and still lucid, and have not changed their minds), how one's medical condition has changed and even possible had a change of mind. Also, in some states designated agents for medical decision-making cannot be the same as whoever has durable power of attorney, avoiding any possible conflict of interest.https://euthanasia.procon.org/view.resource.php...
It needs to be known that nearly all good assisted living facilities now offer what they call "memory care" sections, designated parts of the operation where residents with early-onset dementia live under the care of trained employees available around the clock, usually on call but sometimes constantly depending on the facility.
Assistants do everything from simple guidance and companionship to laundry, simple exercise, help with meals, bathing and other personal care (including changing disposables, followup from bladder/bowel incontinence, changing clothes or bed sheets, etc.). It's not a hard job but by no means one that anyone wants to do for free, so assisted living staff only earn a bit more than fast food workers, if that. Nevertheless, many are very dedicated to their jobs and with experience become quite competent in what they do.
During fourteen years as a caregiver I saw the whole spectrum of non-medical care and care-givers. Like with any other job, experience is the best teacher and you can tell when an experienced caregiver is at work. My mother's final years included about two years in a place where someone would help her with bathing, check on her daily to be sure she was safe, guide her to activities and outings, keep her from getting lost (it was a multi-story place with outdoor gardens, swings, etc.) and remind her when it was mealtime to go to the cafeteria.
When she broke her arm and had to go to a nursing home we were fortunate to find a place where care was exceptionally good. She lived there another two years, and her health was good enough she only took one prescription and a daily vitamin until her final months which were mercifully fast. (She was diagnosed with a rapidly growing, inoperable lung tumor and was gone within three or four weeks.)
In her case she clearly had dementia but was ambulatory and conversational (though it was always the same conversations) to the end. I always felt she was a cash cow for the facility since she was so little trouble. She was very meticulous, made her own bed and managed her own toilet needs. But along with everyone else in the place she used a wheelchair to travel, either to visit others or navigate to the dining room where all the tables were on castors an the only chairs were for staff and visitors. We were very blessed to have access to such an excellent place and she was 92 when she died.
I mention all this simply to underscore that the word "dementia" means different things to different people, and the range of possibilities is greater than most people know. In one place I worked the husband (whose wife could no longer manage him) lived in memory care and his wife lived in a different part where she could socialize with others, attend activities (with or without him) and have her meals separately. (Memory care residents often have food prepared specially to be finger-foods and in come cases ground for spoon-feeding. In some cases they also cannot have liquids unless thickened with a tasteless food thickener.) Memory care units are also locked, with access via a keypad for security.
Before making a snap judgement about assisted dying, I would advise doing plenty of study, considering all the available alternatives. That includes, of course, filing an advance directive for medical care and selecting at least three agents who have agreed to bear that responsibility. This document should be updated every three or four years to insure the agents are still alive (and still lucid, and have not changed their minds), how one's medical condition has changed and even possible had a change of mind. Also, in some states designated agents for medical decision-making cannot be the same as whoever has durable power of attorney, avoiding any possible conflict of interest.In response someone commented "Exactly why I would rather end my life with my dignity intact."
Here is how I responded...
You have my full support. Be sure to plan ahead carefully -- advance directives and all that.
A few weeks ago I heard an interesting conversation on the radio discussing end of life issues, and a man called to say he already knew he was very likely going to have Alzheimer's. Both his parents had it and he already knew from a DNA analysis that he, too, had the marker for Alzheimer's.
He was totally lucid and had obviously done all his homework, but he mentioned a legality which has not yet been discussed to my knowledge. Advance directives all seem to have a provision that anyone who files one can at any time change their mind about any part -- verbally, if no other means is possible -- and that word must be honored by all around him or her.
It's totally possible that anyone with early dementia who is still semi-lucid might change their demented mind and say they don't want to die after all. I don't know how such a situation would be managed by the rest of the family or the medical community, but it's a question worth discussing.
In any case, the caller who brought up the issue was facing that terrible possibility, that he himself might put his wishes into writing but at some later point could say he had changed his mind. I don't recall what the outcome was but it's another angle worth contemplating.
No comments:
Post a Comment