Tim’s wife, Liz, is my sister. Tim is 65 and has been in assisted memory care for months. Liz lives independently in the same CCC. Liz has her own medical challenges. When Tim was diagnosed about two years ago we knew this day would come. But, Liz said no when hospice was recommended. Her contact with Tim has been limited by Covid. How do I change her mind?
- His doctor and the director of the memory care/assisted living unit all agree that he is ready for Hospice and would be better off with the additional care that Hospice can provide.
- No one says he is 6 months from passing. That is not a hospice requirement if the patient has an Alzheimer's diagnosis.
- You are missing the fact that Liz has a variety of medical and cognitive issues. She is managing independent living, but only because I and other family members help out a lot. On your advice I will ask her medical team if she should be making this kind of decision.
- I only want to change Liz's mind because the evidence I have is that Tim and she would both be better off if I do.
I like the idea of having an interview with Hospice. Do you think I / other family should be present for the interview? My sense is we should.
Liz has a variety of medical and cognitive issues. I will ask her medical team if they think she is capable of making this decision (I think they will say no), and how I/we should approach changing her mind.
What I would do is find out is why the doctor is recommending Hospice. Does he feel BIL is actively dying? If not, then what is the benefit of calling Hospice in. I would talk to the head nurse at the MC and see what she thinks. Then I would take that info and go from there.
If you want to change her mind - please bear in mind we can't possibly know whether that's even a good idea - you will have to listen to her reasons and set her mind at rest. So start by listening. Not by deciding she's wrong.
Liz has a variety of medical and cognitive issues. I am going to ask her medical team for their advice in this situation, then listen to Liz.
My LO, who has end stage dementia, has been on hospice for 2 years. Not everyone on hospice dies quickly. Doctors told me she was a candidate for a year prior to that. Even though, she was in MC, she gained quite a bit from hospice care in the MC, such as a whole team of people to look after her, in addition to the MC staff. Another set of eyes is good, imo.
They immediately got her a hospital bed, new high back wheelchair, and other supplies, a bath aid several times a week, weekly nurse visit, social worker for her and the family, and chaplain. They are there 24/7 to help with anything the patient or the family needs, including assessment for pain and pain medication if needed. And, one other benefit is that they are available around the clock, so that you can call them anytime instead of taking your LO to an ER in the middle of the night by ambulance. They assess the matter and that avoids outside doctor visits and ER visits. This is particularly beneficial for families who don't want their LO going to an ER, by themselves, having painful procedures, etc. . Also, no more screening tests and maintenance drugs can be discontinued. And, one of the biggest positives for me, was that we were not attempting to extend life, but, provide comfort and quality to what days were left.
Of course, none of this may matter to your sister. Sometimes, it's just the way they are.
Tim recently went through a traumatic (for him and Liz) visit to an ER that I wish could have been avoided. I don't think Liz knows the additional care Tim will receive with Hospice or that being part of Hospice does not mean he is actively dyeing.
Liz has a variety of medical and cognitive issues. I am going to ask her medical team for their advice in this situation, then listen to Liz, then arrange an interview with hospice, then see what she thinks.
'I was on a morphine drip myself, in hospital the night after abdominal surgery. It certainly wasn’t lethal, as you can tell. Its effect depends on the quantity of morphine and the basic health issues of the patient. The quantity of morphine is intended to be in line with the level of pain. If the patient is dying and their body is in the process of closing down, the sedative effect of narcotics would make it quicker. I get the impression that hospice sometimes is a bit heavy handed with the morphine, and death comes more quickly than expected. This can be a shock to the family, and lead people to believe that hospice is a quick death sentence (which certainly isn’t its purpose).
I am fairly sure that the locum doctor overdid the morphine for my mother, which contributed to her death in 24 hours. My mother would have died in a day or two anyway, and I’m glad she had no cancer pain, which came on quite suddenly at the end. Faced with this again, I would question hospice about how much pain and so how much morphine is appropriate. If the patient is not in pain, I would not be happy about heaps of morphine. But I would not argue if they say they really can’t tell.'
I hope that Liz can think the whole issue through, with your help. It does not seem that a lot of morphine is an issue in Tim's case.