A plea to PALS!

[Kim4Steve]

Love and prayers to everyone who finds themselves dealing with this awful disease!

My brother was diagnosed with bulbar onset in January, 2023. We lost him to this cruel disease on March 5th, 2024. Some days I can still hardly believe he's gone. He was only 62 years old.

Unfortunately, he lived in Idaho and I live in Florida, so I only got to see him a few times between his diagnosis and death. I really wanted to go and stay for an extended period to help with his care, but he protested, and his wife wouldn't allow it anyway. My last visit was of course near his death. Our sister, who also lives in Florida was there as well because we knew he didn't have long.

PALS, here is my desperate to plea to you. Please legally document your wishes regarding for end of life medication for anxiety and comfort. And please give a copy to someone you trust in addition to your care giver.

My sister-in-law is very anti-medication in general. During Steve's last two days, she resisted giving him anti-anxiety and pain medications on the schedule Hospice prescribed. She did have a concern about choking if she gave him the drops orally and I can understand that. But he had a feeding tube. During his last 15 or so hours she really didn't want to give him any medication. My sister and I were beside ourselves watching our brother suffer needlessly. Honestly I considered calling the police because I felt she was abusing my brother. I called the Hospice nurse for advice and she explained that my s-i-l could not be forced to give my brother his medication. The nurse also told me withholding those medications after he had been taking them could cause withdrawal symptoms. I was sure after my s-i-l learned that she would give him the medicine, but she still didn't. I asked if she would please just call the nurse and talk to her, but she was very angry that her sisters-in-law were trying to be in control said no. I went into the bedroom crying and praying for divine help.

My s-i-l finally relented on calling the nurse, who is truly an angel on earth, and the nurse came over. She gave my brother his Ativan and morphine, and got him comfortably into his hospital bed so he could rest better. I asked my s-i-l to talk to the nurse about her choking concerns, S-i-l was still very angry and told me she'd already done that. Then she told the nurse there was "strife" between her and us. I told my s-i-l we just wanted our brother to receive his medication on the Hospice schedule. At that point she shouted at us to pack our things and get out of her house. Because my brother was unable communicate, we had no recourse and had to leave. Before the next sunrise, my brother was gone.

My brother was not at all against taking medication. My s-i-l even complained about how he would run to the drugstore if he even felt a cold coming on. I found out after his death that he wanted to take depression medication at some point during his illness, but she either talked him out of it or maybe she refused to pick it up from the drugstore. I really don't know.

So back to my plea to PALS. PLEASE get a legal document expressing your specific wishes concerning not just this aspect of you care, but all aspects of your care. And share with it trusted family members and/or friends. Your CAL will be grieving, frightened, and completely exhausted. They may be unable to make rational decisions in your last days/hours. Your care decisions should be your decisions.

May God bless us all with a cure!

Kim

 

[KimT]

This is good advice for EVERYONE. You never know when you will be incapacitated. If you had a severe car accident or sudden illness, it could be you or anyone.

Sadly, failure to comply by spouses is hard to enforce if they are there 24/7 and hospice is not.

 

[lgelb]

I'm sorry for your loss, Kim. I would encourage you to seek counseling for what sounds like a traumatic sequence of events, or talking it out with someone you trust.

It sounds like your SIL and brother were not aligned on his care from the start. So I would say this to PALS instead:

If you and your CALS don't align on meds or any other issues up front, such as quality vs. quantity of life, try to change their minds and failing that, designate a different health care power of attorney and install them early on so the CALS understands and the two interact in their respective roles.

I say this because someone holding a piece of paper and waving it at the CALS who likely has power of health care attorney if only by default given a spousal or closest-family relationship, will not change what, for example, a hospice nurse does. Stating wishes in advance to someone who does not have legal authority when the time comes will not change anything. Even if your brother, Kim, had indicated his wishes in advance, they were your SIL's to carry out, as Kim T points out.

As regards P/CALS delegating dosing authority to a hospice nurse, not all hospices and nurses are created equal. So that is a reason to either find a hospice that will be on board with the PALS' mindset or not do hospice.

Many CALS here have disagreed with some aspect of their PALS' decisions, but supported them fully nonetheless, out of love. So I am not saying that if there are disagreements, CALS should always be supplanted legally. But the "big-ticket issue" agreement that sustains most committed relationships may not hold up in terminal illness, especially one as traumatic as ALS. It is only in such cases that I would recommend third-party, legally-binding decision support, to avoid what happened in your brother's case, Kim.

That said, with careful planning and discussion, no CALS has to be in the position of speaking "without a net" for a PALS regarding end-of-life issues. The combination of a legal advance care directive (as you mentioned), designation of a health care PoA that is committed to carrying out the PALS' wishes, a POLST if applicable in your state, and above all, frank conversations well in advance, should be sufficient to avoid that situation.