When someone you care for wants to die now

I have been trying to do a sort of linear structure with my blogging here, starting with early preparations and working my way through end of life care. But issues come up and catch my notice that I want to address while they are fresh. This is one of them. From a linear perspective, this can come up at any time, really. No matter what your background or perspective is on suicide, having someone ask for your assistance or express a desire to kill themselves needs to be the start of a very focused and respectful discussion right now.

I will share a really good interview that brought this to mind. Please either listen or read the transcript.   https://www.geripal.org/2018/04/Is-Suicide-Ever-Rational.html This is discussing otherwise healthy elders expressing a desire to end their lives, and how a geriatric psychiatrist deals with it and her thoughts on it.

In my practice, suicide was nearly always rational, but it was not legal and is officially NOT a part of hospice care. The mantra is that hospice neither speeds death nor delays it. Of course I still have fielded many, many requests from patients to help them end their lives.

The first person to ever ask me was not a patient, she was my friend and I was her caregiver. I was married to her son, and I was not yet a nurse. She was dying of cancer, and asked me one day to help her commit suicide. I have always been a proponent of a person’s right to choose, including the right to choose to die. But having your mother-in-law ask for your help in killing herself is definitely having your bluff called. Of course this lady was also having intermittent psychotic episodes when she was terrified because she thought people (including us) were trying to kill her. My response to her was that this was NOT my place. She needed to talk to her boys about this, not to me. Because while she would be gone, my husband would be having to wake up every morning with the woman who killed his mom. It felt unfair of her to ask me. So that was my first out! She died naturally with no help from any of us.

Later after becoming a hospice nurse, I frequently would get a patient asking me “can you please just get this over with?”, or some other variation on asking me to assist them in speeding their death. What I discovered was to use this as the start of a conversation about what their quality of life was like and WHY they felt death sooner was better. None of them wanted to die, but they were in distress. In some cases the distress was undertreated pain or other physical symptoms. More often the distress was psychological or spiritual distress – feeling helpless, feeling like a burden, the cumulative grief of the constant losses and indignities of a dying body. This is harder than adding a medication or shifting some pillows. But addressing these things is really important. The biggest issue is the complete loss of control, over pretty much everything including your body. Choosing when your life ends feels like taking back a bit of that control.

Talking with folks about their losses, getting some help for their grief, and also addressing the feeling of being a burden. Reminding patients that we all start our lives helpless and require care and assistance in everything – and if they were parents then they did that for their kids. If not, someone did that for them. It is how it works, and the act of caring is a gift that we give to others – they become people who take care of others, and that is integrated into their sense of self. If there are grandkids in the home, they are helping teach them how we take care of others so that they can someday do the same. And that ultimately they are teaching those around them how to die. And that is a big responsibility, because it helps determine how they will face it when their own time comes.

Side story on assisted suicide. Was called to see a patient who was referred by their doctor.  Gentleman was NOT happy to see me. He was very solidly in the death denying camp, and had lost his wife the year previously and had not yet dealt with her death. His was going to be somewhat drawn out with a gradual loss of strength and the ability to continue to live alone and care for himself. In the course of our initial interview he made it clear he found home visits an unwelcome reminder of his illness and wanted to see me as little as possible. I agreed that as long as he let me in once every two weeks he was welcome to forget I existed in between. Then, towards the end of the meeting, he mentioned that he intended to take his own life at some point when he could no longer live alone. He was watching me closely when he said this (I discovered later he had brought it up previously with others who apparently flunked the test). So I asked him what his plan was. He said he had done a lot of research and described his plan to me. It was a good plan – not foolproof, but very likely to do the trick. So I told him so. Then I asked him a question. I asked him if I could come back with an even better plan, would he give me time to find out if it was possible? He agreed.

My plan was something I had just read about a week previously, called terminal sedation (or palliative sedation). This has been used for patients whose pain or suffering was not responding to any medications and involves essentially anesthetizing them. They sleep in a drugged coma and pass away while still asleep. Because the death is caused by the patient being unable to eat or drink, it has skated the line of assisted suicide. And at the time I was working for a faith-based medical system. And my patient’s suffering was not physical, it was a psychological unwillingness to go through the dying process. I will add here that this person had no other family so that was not an issue.

I went to the ethics committee and asked if they would consider offering terminal sedation to my patient, as an alternative to him taking his own life at home. And they actually agreed! So I went back to my gentleman and described the process and how we would carry it out and he agreed to my plan. He would go into our hospice facility when he could no longer stay at home, and would tell the doctor when he was ready to be hooked  up to the machine that would put him to sleep. And when the day finally came, we moved him into his room and got him settled and we visited a bit in the garden. I went back and saw him a couple of times after that over the next few weeks, just checking in as came through. I got a call from the facility when he finally died. He never did ask for that pump. Just knowing that he was in control of the process was all he really needed.

Experiences like this have colored my view on all of this. I think it is important when someone says they want to die that we center ourselves first, and then try to find out why. Because for elders like the podcast above is describing, it is far more than fear of a nursing home – or as one of my patients called hers “God’s waiting room”. It is all the cumulative griefs and losses that pile up, the loss of bodily autonomy that is ongoing, and the real concern of becoming a burden to their loved ones. Folks need to feel useful, no matter how old or bunged up.

I now live in a state where physician assisted suicide is legal, and I strongly support it – because I think having the right to take control over your own death is important. But I think it is also important to be sure that we are having these conversations, and that we have some good viable alternatives for someone who doesn’t want to die, they just want the suffering to stop.

 

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