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My dad had a severely debilitating stroke over 3 years ago that left him paralyzed on one side of his body. He literally went over night from being an extremely active 86 year old to needing 24 hour care. Over the past several months he has gotten weaker and dementia has set in. My sisters and I live in different states then he does, but come to see him on a monthly basis and have been called by his aides to come down immediately a few times in the past few months, thinking the end was near- but he always bounces back. He now has had black stools for the last couple of weeks, but we not want any invasive testing done on him or have him put in the hospital due to Covid. I am his medical POA, so ultimately it is my decision? My sister and step mother (who we do not have a great relationship with) want to call in hospice because his quality of life is zero. I understand what they are saying but personally have a difficult time “playing God” with my dad’s life- especially since he has never told us that he is ready to die. Has anyone been in this situation?

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Lnisse: I saw your update, saying that you signed up for Hospice for your dad yesterday. Good luck. Prayers sent.
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Reply to Llamalover47
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Why would you be the one to decide? Your parents doctor knows when the time has come to go that.
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Reply to artistwifey
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I was in a very similar situation very
recently. Same issues with family,distance,POA.
When my dad who had been in the hospital for more than 2 weeks due to flu,Pneumonia, renal failure and we knew he no longer have any kind of life quality I spoke to the family and we agreed he would not want to be in this state. I called hospice and they came and did an evaluation
and spoke to me at length. They were wonderful. They assured me that they would make sure all of his needs were met, he would be comfortable and that when he was in pain they would receive it.
He wanted to be home so I took time off from my job and let hospice know that o wanted to take him home and I would be there.
They made all of the arrangements for him to come home-bed, supplies,
nurse to check on him daily,
some one to come and bathe him and tend to his grooming needs.
It was hard and I knew in my mind that it was best for him. My dad was an active 88 year old man.
but his health was failing,and if I know anything about my dad it was that he would have hated being confined to a bed or having to have dialysis.
He was home for 5 days before he passed, but I will tell you that up until the 4th day we were never closer it was quality time for both of us. He was getting weaker and more and more uncomfortable I told him how much we all loved him
and if he wanted to be at peace it was ok. On that 6th day he was gone. It was one of the hardest decisions I have ever had to make
but I know it was the right one.
and I know my dad agreed.
i hope this helps a little
hospice is a wonderful organization
they still keep in touch and they did a wonderful job helping to take care of my dads wants and needs.
some people have hospice for a long time as was the case with my sister
(one year)
My point is they are a great resource
I will keep you and your family in my prayers
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Reply to Marion923
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I just signed my dad up for hospice last week. He is in a NH and is non-ambulatory due to blood clots in both legs. Too much of a risk for anything invasive (he already has an IVC filter) and he cannot use blood thinners. He is confused most days and recently fell out of his bed. The hospice staff that I have talked to have been very kind and not pushy at all. For example he is still full code and no one is pressuring me to change it to DNR. He will still receive his normal medications and care from the NH but will have a hospice aide dedicated to him for as long as he needs one. The hospice nurse also invited me to be on the scheduled conference call regarding his care. And even though he's in a good NH I feel very relieved for the extra set of eyes on him. At this point in my life if a helping hand is available I grab it. As for perscription cost, his secondary insurance covers that.
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Reply to EmeraldKitty
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I just put my mom hospice. After being called by her visiting doctor about a sharp decline in both her physical and cognitive state, we reviewed options. My mom has been in and an out of the hospital twice in the last six months. They can’t “fix” her. They run her through the same battery of tests with the same conclusion and recommendations. She is declining due to age. As was already pointed out in this forum, your dad has to meet specific criteria for hospice. The doctor has to write an order for evaluation and the hospice staff will come out and examine him and look through his medical files to insure he meets criteria. My mother is able to continue her regular medications. And I have the peace of mind that she will not have to go out to the hospital again to have a bunch of tests once more that show she declining due to poor health. These hospital visits were upsetting to her and disruptive to her state of mind. Since I am unable to visit my mother due to Covid 19, it gives me peace of mind knowing there is extra help at her facility, and she is being kept comfortable. Hospice also provides social work support for anticipatory grief, chaplain support for spiritual support and I have ongoing and regular communication with the hospice nurse about her condition.
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Reply to Mepowers
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I saw were you said you called Hospice a month ago but were weary of stopping all meds. My mom still receives all her meds. Blood pressure, Thyroid, blood thinners. Hospice supplies all. They wanted to change the Synthroid to the generic brand and change her blood thinner from Eliquist. So those two I use her secondary insurance for. Eliquist has a program card you can get. 90 day supply is $30
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Reply to KaleyBug
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Lnisse Jul 22, 2020
Thanks for your response. The first hospice we contacted a month ago said no “curative” meds only pain killers. That is why we were hesitant. We signed up with a hospice yesterday who said he can take his meds and would be covered. He also has secondary insurance- so are you saying the secondary insurance should cover what hospice won’t?
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My 92 yo father with Alzheimers was just accepted to hospice. Mom and I were not aware that Hospice doesn't mean he is at deaths' door. It means he is failing and won't improve. So I would highly recommend calling them in. Someone will come to the house for an evaluation and if is not the time they will tell you. My father failed the evaluation initially because his Alzheimer's was not advanced enough. But a week later he was accepted because he was losing weight and strength. Physically he is in pretty good shape, not on any meds, no heart disease, diabetes, even arthritis! But he is failing. Some people are on hospice for years!
Signing up for Hospice has nothing to do with "playing God". I suggest you contact a local chapter and find out just what services are available. I suspect they can give you a great deal of peace of mind concerning your loved one, especially since you cannot be near.
Black stool is indicative of some very serious conditions. Why have you opted to wait on testing or going to the hospital? Yes, covid is a big risk but internal bleeding is more serious. In my opinion, not testing is taking an action very much in keeping with hospice: no attempt to cure, great effort to keep comfortable. It is not my place to say what you should do. Believe me I am not saying you should take him in for extensive testing. Would knowing what's going on make his life better? At his age and condition would major surgery really be an option? This sounds like a Hospice patient to me.
BEST of luck to you, whatever you decide.
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Reply to swanalaka
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Lnisse Jul 22, 2020
Thank you for your response. We are aware that black stool usually indicates something bad internally, however, at his age and his condition, we feel that doing any extensive testing would be cruel to do to him. Additionally, with Covid raging in Florida, we feel he will be in more danger being in a hospital then being cared for at home — especially since no one would be able to be in the hospital with him. As of yesterday, his stool sample came back negative for blood and blood work was normal, so we are comfortable with our decision not to put him in the hospital.
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Calling hospice is not playing God. He is bleeding internally and should be evaluated for hospice. Did he ever tell you he wanted to be kept alive by tubes? None of us would ever want that.

Hospice is actually not your decision. It is a doctor and hospice decision. Not everyone is accepted. There are qualifiers. Take it easy on yourself and get him evaluated.
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Reply to gladimhere
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Only God can play God. And just because you have your dad put under hospice care, doesn't mean that he will be dying any time soon. My husband who also had a massive stroke many years ago, and now has vascular dementia, along with other health issues, has been under hospice care for the last 19 months. I as his POA made the decision to bring him home under their care when he almost died from aspiration pneumonia. Hospice can be a lot of help, but now with Covid, they have cut back on a lot of their services, including their aides coming out to bathe, their volunteers, and massage therapist. None are allowed at this time.(although I got word that in my area, they are slowly starting to bring the aides back). The nurses too who usually came once a week, now only come every 21 days and do televisits instead. So just be aware that things will probably look different with hospice until this Covid crap is over, but it surely sounds like your dad would qualify for their care at this time, so you might as well take advantage of their services. It can't hurt and it will give you some peace of mind, especially since you live out of state. Again, just because your dad goes under hospice care, doesn't mean that he will die soon, Only God knows when He will call him home. Let God be God and you just be a loving daughter and do what's best for your dad. Best wishes.
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Reply to funkygrandma59
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Lnisse Jul 19, 2020
Thank you for your response. It was very helpful. We did have a hospice evaluation about a month ago- and he qualified then- but was nervous about stopping all meds at that point. I will call tomorrow and see what services would be effected potentially because of Covid- didn’t even think about that.
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Ywe, as medical POA it ultimately is your decision. However, that doesn't preclude you from asking for family input. Hospice is indicated when a person is declining, the prognosis is poor, and no aggressive treatment is desired. Hospice care must be ordered and certified by a physician. I would suggest contacting his physician to discuss the issue. Maybe have a family teleconference or meeting with the physician so everyone hears the conversation first hand.
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Reply to Peanuts56
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Lnisse Jul 19, 2020
Thank you for your input.
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Call the Hospice of your choice and they will evaluate him to see if he is eligible for Hospice. (my guess is he would be)
they will come in and help care for him. They will keep you and the rest of the family informed as to how he is doing. Some Hospice also have a method of communicating via an APP (the Hospice I used had TapCloud)
Hospice will not "play God" They will keep him comfortable. They will actually provide more care, a Nurse will come see him at least 1 time a week, a CNA will come at least 2 times a week and they will order supplies and equipment that will make caring for your dad easier.
Hospice does not, let me repeat that Hospice does NOT hasten death.
Why not try this....Contact Hospice let them care for your dad for a period of time, let's say 1 month. If you are not pleased with the care that he gets you can discontinue Hospice and your dad can return to using the same medical services that he has been using.
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Reply to Grandma1954
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Lnisse Jul 19, 2020
Thanks for your input. We did have a hospice evaluation a month ago and he qualified then.
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I guess you realize that black stools may mean he is bleeding internally. If he is on blood thinners he needs to be taken off them. You don't want invasive testing but you don't feel comfortable with Hospice coming in? A little contradictory there I think.

Your sister and StepMom are there. They care for him on a daily basis. I would allow Hospice to come evaluate. He will get comfort care and an aide. Stepmom will have some support. But "in home" Hospice is not there 24/7 so SM will still be responsible for most of the care. Think of your SM. Daily caring for someone is very stressful.
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Reply to JoAnn29
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Lnisse Jul 19, 2020
Thanks for your feedback. He had had 24 hour aides in his home for the last 3 plus years. They have truly been amazing. My sister and I both live out of state and have been flying down at the minimum of once a month this whole time. SM is really not capable of being in charge. It has been an emotional roller coaster and we are exhausted. Just trying to do the right thing for my dad.
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