Hospice

Istoppedescaping

Hello can someone please explain to me, if the decision to put a LO on hospice is a major decision and should it be discussed with all family members before treatment?

M1

Well, yes and no. It is a major decision, in that it typically means that care will focus on comfort and keeping someone out of the hospital, with no extraordinary measures taken to prolong life. In other illnesses besides dementia (cancer for example), hospice is usually brought in when it's estimated that someone has six months or so to live. The rules with dementia are a lot looser, and there are plenty of posters here whose loved ones have been on and off hospice for a couple of years. You don't need a doctor's order to request a hospice evaluation, you can just call any hospice agency and request an assessment. There's little to lose, as if they think it's too soon, they'll tell you that with no penalty of any sort.

While it might be nice to think you'd get consensus from all family members, the decision is really up to the person who holds medical power of attorney. I personally would be comfortable making the decision without expecting to discuss it with others-but that's me.

Quilting brings calm

It is an acknowledgement that treatment of major illnesses with the goal of a cure is to be discontinued. Because there is no cure. That medications that bring the person comfort or prevent discomfort will continue. That other items needed for comfort will be provided. That there will be no more visits to doctors, ERs, or hospitals while on hospice. Terminal illnesses will continue unchecked.

So yes, it’s a major decision.

Do all family members need to be in on the decision? Well, that depends on the family. We just put my step-dad on hospice. Basically the AL nurse talked to me since I had the medical power of attorney. I agreed and then she presented the idea to my step-dad who 1) wouldn’t willingly give up control of anything and 2) was still competent to sign himself in. Mom (PWD) was aware but didn’t really understand on that day. We didn’t tell anyone else until after hospice had accepted him. None of the rest of the family have been involved in their care.

In our case, he’s had multiple terminal physical conditions for years that really couldn't be cured. He has reached the point where something inside him really can’t continue on. I don’t think putting him on hospice changed the trajectory of his life- it’s just acknowledging the truth about it. If we had waited one more week, he’d have no longer been competent to make the decision, and I’d have signed the papers.

Your family might be different - but you need to do what’s best for him even if a family member hasn’t come to terms with it. Only you know if you have the type of family that needs to be consulted ahead of time or informed after the decision is made.

harshedbuzz

Legally, it only has to be discussed with the person your LO (POA) or the courts (guardian) have chosen to act as their agent.

In a sibling situation, a discussion and consensus would be ideal but this isn't always possible for a host of reasons.

There may be a family member in denial around dementia being a terminal condition who is approaching this with the language of battle-- i.e. "mom's a fighter".

The POA making the decision may find the decision emotionally difficult enough without someone who might not have had boots-on-the-ground playing devil's advocate. I had an uncle who questioned my decisions but didn't visit very often. The afternoon I called to tell him that he would notice a change in dad when he next visited and that he'd be evaluated for hospice the next day he acted as if I'd called in the death squad. FTR, my dad died 5 hours after I made that call.

People sometimes have unrealistic ideas about what hospice is and does. I was trying to discuss an AMD with my mom a few weeks ago; I have the document that defers all decision making to me but I wanted an idea about what she'd want/not want. She wasn't sure about hospice so I asked her what her reservation about it was. Her answer "because they don't feed you once you go on hospice". WTF? My mother is reasonably intelligent and college-educated so this came as a shock to me. My own MIL was on hospice for 5 1/2 years and mom knows this.

Specific to dementia, given that there is no real effective "treatment" of the condition at end-of-life, dementia patients on hospice aren't really giving anything up to add the additional layer of care and support. I regret that hospice wasn't called in before dad died. I think my mom could have benefited greatly from it.

HB

H1235

I think the big thing is that treatment to get better or prolong life stops. Medication for high blood pressure, heart problems… would stop and medications to make the lo comfortable would be the priority. It’s my understanding that even if a bone was broken it would not be treated. Now could you stop hospice and treat the broken bone??? Not sure how that works. I think it’s a big deal. Some family members may have a hard time accepting a lo condition, wishing to keep the lo alive at all costs. You can’t just put a lo on hospice, they have to be near the end. Accepting hospice is accepting the reality of the situation and not all family members are able to do that. In this case I can see why a medical poa may not have a discussion with the rest of the family. It’s hard enough to make this kind of decision, compounding it with family who can’t see reality would be very difficult. But in an ideal situation with rational family I think family should be notified and even involved in the decision.

psg712

In my experience as an oncology (cancer) nurse, medication that is needed for maintenance of chronic health conditions such as diabetes and heart disease is still given to a person under hospice care. Certainly a painful injury such as a fracture would be treated, although the value of surgery might be weighed carefully for its actual benefits if a person is close to death. Yes, hospice care can be stopped if no longer desired.

The difference with hospice is the focus on comfort and a peaceful death, rather than continuing life-extending treatment. Hospice does not attempt to hasten death, but offers much support both to patients and their loved ones as they manage the effects of a terminal illness and approach the end of life.

H1235

https://alzconnected.org/discussion/comment/199592#Comment_199592

So sorry! I did not mean to give incorrect information.

Istoppedescaping

https://alzconnected.org/discussion/comment/199588#Comment_199588

Thanks Chug. My family is very challenging. I need to let go and let God. One is still in denial.

Istoppedescaping

Wow so much information. Where would I be if I didn't come here. I have put it out there for my family who all have equal POA's and I. I would of put my Mom on Hospice two years ago when she didn't recognize me or anyone else. My hands are tied, but I tried again to help my Mom. Who deserves better care. 🫶

psg712

https://alzconnected.org/discussion/comment/199602#Comment_199602

No worries, hospice care is often misunderstood to mean withdrawal of care. My experience with it is limited to cancer care (so far), but I know that others here have found it helpful for their LO with dementia.

Bunnyboo

It is a big decision, and you'll probably get a fight from your family. Before you put them on hospice make sure that they have a d.n.r and d.n.i. order in place. Oh it stands for do not resuscitate and do not intubate. That way you're bases are covered.

asarina

My father was diagnosed with dementia 9.5 years ago. After being on Aricept and Namenda for years it has progressed to late-stage. In November 2023 he was hospitalized with sepsis and we, as a family - my mom, two brothers, one grandchild and I (the only daughter) decided on hospice. He has been in hospice for 16 weeks now at home. While it has been difficult, especially for me because I live seven miles away (and my mother has macular degeneration and hearing loss), every moment has been a gift. I miss my Dad more than I can express. While the essence of who he was has long since gone, the occasional “I love you” from him is worth it. Have the hard discussion with your loved ones and then hang in there. Don’t be too hard on yourself, this disease is out of your control.

Leanna

Wondering about the timing to start hospice? Do not want to give up on mom but also don't want to cause suffering (er visit etc)? She is not eating much anymore but is still walking (though not as steady), feeding self and talking ok? I feel like it is a gray area.

MissElizabeth36

I wish I would have started hospice early

JeriLynn66

@Leanna Hospice will evaluate your Mom to see if she qualifies for the program. If she doesn’t then Palliative Care may be offered. Hospice/Palliative care are an added layer of support for comfort and symptom management. It isn’t “giving up”, .

terei

If someone is resistant to Hospice, IMO they are not informed as to what it really is. It is not ‘giving up’ on someone. Studies have shown that people on Hospice actually live longer at the end of life than people NOT on Hospice.

A legitimate hospice organization with assess your LO as to the suitability of them entering the program. You do not have to ‘decide’ when they are ready.

If you want to have intubation, feeding tube, CPR or other extreme measures to keep you LO alive, you are right, Hospice is not for you. Hospice is so you LO can have as dignified, calm + pain free end as is possible under the circumstances they are in.

Also, read Being Mortal. Death is a part of every life. Living beyond the time you have quality of life is hellish end, IMO

Istoppedescaping

https://alzconnected.org/discussion/comment/200059#Comment_200059

Thanks I am sorry you are going through this as well. But my family is very challenging and I have developed an emotional desiese that I just can handle so much of my family. Thanks

Istoppedescaping

https://alzconnected.org/discussion/comment/200065#Comment_200065

Yes I totally understand but the people here know and have been through it. I just want to help the family and my mom. Hospice is available just to make things more comfortable not a death sentence. I hope the best for you.