End of Life Care

[KBecks2]

Human life is more valuable than animal life.  I am pro life and do not support euthanasia.  It can be abused too easily.  I am ok with people choosing to kill an animal, but NOT a person!!

Home care can be very, very difficult if dementia is involved.  I think we should look for solutions that give quality of life and a great deal of. I passion for the elderly and their caregivers and family.

[KBecks2]

Isn't this basically the idea behind Hospice?  We don't spend a ton of money, we keep someone comfortable, but we don't treat the underlying disease and allow them to succumb to it?  I'm all in favor of that, but I don't think I'd be in much favor of allowing others to hurry the process along.  Doctor-assisted suicide is fine by me if someone wants it, but doctor-prescribed "homicide"?  No thanks.

Good post.

[Mississippi Mudstache]

My grandmother passed away just last week of congestive heart failure and basically starved without the feeding tube; she was in Hospice and on morphine.  My understanding is that it sounds cruel ("OMG, starved to death?!") but in reality she was essentially higher than a kite on painkillers and didn't feel a thing.

First off: my condolences.

I should also add: that isn't how it works for Alzheimer's.  It's awful.  They are essentially in Hospice for a couple of years.   And for these patients Hospice isn't the serene place you are thinking about.

It may be different depending on the disease, sure.  The three people I know who passed in Hospice were from congestive heart failure (2) and brain cancer (1).  All three passed quietly at home with Hospice people present.  My wife's grandma has been "in Hospice" in her home with a DNR but has clung to life (with a fair amount of activity, walking around, etc) for the last 14 months or so.

My mother was diagnosed with Alzheimer's when she was 50. By the time she was 54, my dad could no longer provide the care she needed and admitted her to an assisted living facility, where she stayed for 5 years until this past winter. By that point, she was practically bedridden, and the assisted living facility was going to increase his payments to the point where it made more sense to bring her home and hire 3 full-time nurses to care for her around the clock. She will turn 59 this month, and she has been overseen by hospice for about 10 months. No telling how much longer it could go on. Her mind is gone, but she will hang on for as long as she can eat and drink, which she is doing with increasing difficulty. Meanwhile, it's costing my father $7,000/month to pay for her care, but worse than that, he's been in a difficult emotional state for years on end without closure. Everything that made my mom who she is is gone. All that my Dad has left is a living body and half a million in medical bills. I know good and well that she would never have wanted to go this way, and we all know that everyone will be better off when she passes, but nobody wants to talk about it. If there were some way to humanely end her life, I would be favor of it. But even so, I can't say that it would necessarily be a good thing if such a way were legal. There is no distinct line where it becomes ethical, but I know that wherever the line exists, my mom is way past it.

[Cassie]

I don't think anyone thinks that an animals life is as important as a person. MIS M: Sorry to hear about the suffering for your Mom & and the whole family. My Mom took care of my Dad for 14 years so I know what you are talking about.

[justajane]

Hi Diane.

Thanks for your words. I didn't mean for my story to be taken as a referendum on hospice in any way, shape, or form. Those that cared for my relative were very compassionate and definitely did their job, at least inasmuch as they were able. The reality is that my BIL wanted to take on the lionshare of care himself. Hospice only came in a two or three times a week and stayed only an hour or so. From what I recall (and this may be somewhat warped given the time and my lack of firsthand exposure), they took vitals and adjusted meds. My BIL did all the bathing, diapers, etc. Even at the end, I don't believe she was ever on IV pain meds. It was all pills. It is possible that she didn't have enough pain relief at the end. I kind of recall that she was refusing it, which was her right.

This was a very painful time, so much is a little foggy. But I am certain she did not go quietly. The dying process lasted for hours.

I have certain regrets about that time when she retreated to the bed. She went upstairs around Labor Day of that year and did not leave the bed again until she died in December. They had (have) young kids, so life went on somewhat as usual around her. We would visit every other day, and each time we came to the house, we would go upstairs to see her. But it was very hard to be in that room. When we went in, she would usually turn her body the opposite direction. Some had different experiences, but I know in my case, she definitely shut me out. I don't take it personally at all. She was in deep emotional and physical pain. She did what was best for her and she engaged with those who made her more comfortable. What I regret is that I didn't stay and sit with her longer. I took her turning away as a sign that she wanted me to leave. But maybe I should have stayed. She must have felt terribly alone all those hours, days and months. Basically waiting to die in a body that didn't resemble the vibrant body she used to have.

She died of melanoma that had metastasized to her brain. Having watched her die so painfully, I think you can guess my thoughts on the young woman who chose assisted suicide last year in the face of a terminal brain tumor. Terminal individuals should absolutely have the choice to go before the agonizing decline begins.

[FIRE me]

Its a very sad situation, and I wonder why we are not more tolerant of euthanizing a person who has gotten to that point? When an animal is suffering and clearly not enjoying life anymore, we send them off painlessly into whatever awaits. Why is the same not done for people? I certainly would want someone to end my life if I ever got to that point, and when I talk to other people, I would say 75% agree and ask for the same for themselves.

But we do not do that, instead we spend tens of thousands of dollars prolonging the suffering of both the patient and their family. I just do not get it. Why do we do this to people we love?

Pretty well discussed in this NYT article:
“How Doctors Die: Showing Others the Way”

http://www.nytimes.com/2013/11/20/your-money/how-doctors-die.html?_r=0

What it amounts to is when your situation is untenable, why make your last days miserable with the side affects of an almost certainly ineffective treatment? Or be warehoused in a nursing home?

It is how I hope to die eventually – in my own home, not a hospital or nursing home. I'm fine with hospitals as a place to get better and then leave. But when I can no longer care for myself, and have no reasonable expectation of returning to being able to care for myself, then as far as I am concerned, my time is up.

My father had the bravery to die that way, and I intend to follow in his footsteps.

As for euthanizing human beings, I am against that. I think a better solution is the Living Will, also known as advance medical directive.

[deborah]

It's sad that you want what 90% of Americans want, but that less than 30% get - to die in their own home. As soon as you enter an institution, the doctors feel compelled to try everything to stop you from dying, whereas at home you can gently go - whether you call it euthanasia or not.

Although 30% of Americans have living wills, very few give copies to their doctor, so the doctor will still go against the living will.

This is all from the book I am currently reading - Never Say Die. Very depressing reading.

[geekette]

I used to think I wanted to die at home, but I've since changed my mind.  My dad and FIL both died in medical facilities, with professionals taking care of pain management, necessary care, and keeping us informed about what was to come.  It took a lot of the fear and uncertainty out of the process, and let us concentrate on family.  In neither case was futile life prolonging care given.

[okits]

But we do not do that, instead we spend tens of thousands of dollars prolonging the suffering of both the patient and their family. I just do not get it. Why do we do this to people we love?

I have limited, anecdotal experience, but have seen that even when people are sick and dependent they don't necessarily stop wanting things.  They want enjoyable food, drink (or other, habitual vices), to go out and do or see things, company and attention and human interaction.  They still want to live and have the life and health they used to have, or at least experience enjoyment. 

When a sick loved one is saying "I want this, I want to do that" you still feel there's something of themselves there (however small), and you love them so you still want them to experience happiness and enjoyment.

It seems clear-cut for someone who is vegetative, or asking for euthanasia (even if they aren't competent to make the decision they're not actively expressing a will to live.)  Without legally-enforceable end-of-life instructions left in advance, other scenarios are much more fraught.  And there remains the question, "you said X in case the worst-case scenario happened.  Now that it has, if your current wishes are different do we take them as your true feelings or do we decide you aren't competent to speak for yourself?" I can certainly see someone's wishes being different when a situation is theoretical.

I do think there should be options for people who don't want to put themselves and their loved ones through the experience of an incurable, degenerative disease.  For myself, I guess the current best option if I were diagnosed with that would be a lethal dose of something while I still had the judgment and ability to take it (so, foregoing some healthy-enough days in order to ensure I didn't linger.) Foregoing the unknown number of good days left is regrettable, as in those circumstances they are extra-precious.

[okits]

FLA - your posts have been very informative, thank you.

[FLA]

I used to think I wanted to die at home, but I've since changed my mind.  My dad and FIL both died in medical facilities, with professionals taking care of pain management, necessary care, and keeping us informed about what was to come.  It took a lot of the fear and uncertainty out of the process, and let us concentrate on family.  In neither case was futile life prolonging care given.

some hospitals have either a number of beds on a wing designated for hospice patients or their own floor.  We have our own floor at one hospital, it's amazing because it does not  look like a hospital at all, more like a friendly hotel.  But even if hospitals have neither of these things, they still take hospice patients.  It's totally understandable to not want to die at home, often chosen by patients so their family won't constantly associate the room they were in with their death. Or to end that feeling of being a burden. Not dying at home, let's family be family, not hands on 24/7 caregivers.