When is hospice the right choice?

passingfancy, I know we rarely want to be the one to make any choices for our love ones when they are no longer able to make their own choices. There are so many "what ifs". We have to do what our parents had requested for situations like this. I realize not everyone is able to have "that talk" with a parent.

For both of my parents, the doctors recommended Hospice to which I learned as much as I could about this time in a person's life, what happens to the body and the organs, etc. I didn't want my parents to be in terrible pain, so I was thankful Hospice was there.

Hope you can make a decision that you are comfortable with. And even then you will be second guessing yourself, which is quite normal for us to do.

Based upon the information you have given, I'd say it is the right call.
They will manage his pain.

Fancy, you're not letting him starve to death. You're making perhaps the toughest decision of your life, on behalf of your father, and thus also probably the most important decision you would ever make for him.

I think the guilt would really be overwhelming if you didn't involve hospice, as he would continue to deteriorate.

Comfort yourself and know that you are doing the best thing you can by bringing hospice into the situation so that he can pass without further distress.

And take whatever time you can to relax and prepare to be available for him during his last days.

Hospice is the right choice. I'm with you on the how emotionally hard the feeding tube issue is. I'm fortunate my mother made me her medical POA over a decade before she began having any problems. I had an opportunity to ask her whether she would want a feeding tube or not. A ventilator or not. For my mother the decision point was the remaining quality of life. She told me that if she was still living a good quality of life with the expectation of some more good days then she would want a _temporary_ vent or feeding tube. She didn't want either if it was expected to be permanent or if her future quality of life didn't include at least sitting up in bed enjoying a visit with family or friends. When she expressed these choices she had experienced a father with a DNR dying of a sudden heart attack during a congested heart failure decline; a mother who died slowly from kidney failure caused by end stage congested heart failure; and the death of a younger brother in hospice with cancer. She told me she didn't want to linger in pain, particularly if death was certain or nearly certain anyway. My mom has always been a fighter too. She takes daily walks to keep her strength up and hopes to see some of her great-grandchildren graduate from high school, but when the final decline comes she doesn't want it extended artificially. Your father signed a DNR so he likely has a similar point of view.

God bless and comfort you during this very difficult time in your life.

they will give you medicine like morphine to keep his pain level down you will have to give it to him if he is at home ..we fed my mom yogurt for a while then she could not have the strength to eat it & a little later she did not have the strength to take water anymore .so that is a good time to start hospice my mom was on hospice from 3-16 to 4-9 this yr .a year ago she weighd 149 pds then drop fairly fast that to is a time to think of hospice she was down to 1-7 in september or so also ask if they can give you a asthme inhaler i had one & used it 2 times a day or when her breathing was not right ..they call it rattling so she did not do much of that it is mucus caught in the lungs & they do not have the strength to take care of it ..it does work but i never told them .so also there was a time i thought to not use it & she passed over night .like she wanted so i would say to study your father & what he goes thru & help him make him confortable so he does not suffer ..good luck

Our situation is similar to TNtechie's story. Only the decision is for my husband's end of life care. We had discussed this much in advance, had the papers ready and signed, etc. I know what I have to do but am not sure I am strong enough. My goal is to make this time of his life as easy and comfortable as possible. It will be my last gift to him.

ShakingDustOff—Many of us are NOT CATHOLIC. I’m the furthest thing from Catholicism as a person can possibly get. So please stop telling people to talk to their priest.

Can you do hospice from home. Sounds like your getting close to the end. Take two weeks FMLA. No feeding tube.. Be there with him. You’l feel better in the end that you did what you could. I know it seems like a long time caring for them, but once they're gone, they're gone. 4.5 years here, and I can’t believe how much I miss them.

" Pain medication stopped working for him and he was in severe pain most of the time." " severely weakened to the point where doctors say he will never physically recover or move again." Bedridden --combined with narcotic dependency-- both means high risk for pneumonia, blood clots and stroke, further hospitalization, skin breakdown...and it will be a severe challenge managing his bowels. Impaction can happen in days.  This will require digital disimpaction (a medical professional digging it out with their finger)..with routine laxatives. Remember these things and decide. I apologize for being blunt but that's the way it is. But you also have the option of PALLIATIVE CARE. Assuming he can't swallow without aspiration, and there is a feeding tube, but with the understanding he won't get better.  Feeding tube is palliative care. Without one you will need hospice care. If he's still in the hospital, ask for a hospital chaplain and discuss your options. Hospital chaplains are more knowledgeable than nurses and doctors when it comes to palliative care vs. hospice. DO NOT ever assume doctors and nurses know about these things.   The hospice facility must be medicare approved to provide palliative care. If you don't want to discuss it with a hospital chaplain talk to a social worker--but you have to ASK about your options..otherwise they will just follow what the doctor says. But a chaplain is your best bet palliative vs. hospice care options information.  Now they may last a long time with feeding tubes and bowel management--but a person won't last very long without fluids. 

I'm so sorry passingfancy

No to the feeding tube. It really is just a money maker for the doctor and hospital, plus many may not know, but it can be a way to contact sepsis. You (and he) will know when it is time to say goodbye.

Wouldn't it be absolutely wonderful if there were always a flow diagram we could follow which would leave us in no possible doubt about the right decision to take.

But perhaps what defines a difficult decision is that it is one without clear correct choices.

In the OP's case, I privately feel that the doctors' suggesting a feeding tube was deeply unhelpful. It would probably make it possible to prolong the gentleman's life significantly. But my - again, private and personal - view is that in his state of health, and in the light of his having previously signed a DNR which indicates that heroic measures were not something he was prepared to undergo, if there is one thing that is definitely NOT the right option for him, it's a feeding tube.

It would be comforting for the OP, perhaps, if her father is still able to swallow without aspirating, to remember that hospice will not prevent her offering her father treats. If he is hungry and able to eat, no one will force her to starve him.

Hospice is the right choice. Quality of life is important, not length of life. Would you choose to be kept alive in pain, with a feeding tube and unable to move about? Yes, you have a difficult decision to make but in your heart you know what the right choice is.

My father had a DNR but the hospital he was in inserted a feeding tube without consulting my mother. She had them remove it.

If your father can still eat anything, let him eat. I would not recommend the feeding tube myself if there is no real quality of life to be had. From what I understand, as awful as it sounds, there is no real suffering in 'starving to death.' However I can understand your qualms about this. I recently had to let a cat be put down because he was no longer eating or able to urinate and I hated to see him suffer! It was not an easy decision but we had tried everything we could and he was not responding. Although all signs were that he was very unwell, I still question my decision, but all his signs were that he was not going to get better, only worse. I still miss him...

Please don't be hard on yourself over this. Whatever decisions we make are based on what evidence we have and what the prognosis is. You can't beat yourself up for making hard decisions like this.

Ah, the question of a feeding tube. (sigh). Having worked in the ICU, in Hospice, and in the Dementia-care unit, I've seen several episodes of 'to put in a feeding tube, or not.'

Let me say first that feeding tubes can be an actual life-saver for people who need them, especially when they're temporary and/or especially when the person is otherwise cognitively intact and fairly functional. The film critic Roger Ebert had one for several years following cancer surgery that took away both eating-by-mouth and speech -- and during those years he continued to work and write.

But over and over again I saw the folly of putting a feeding tube in someone who has dementia. People imagine that a feeding tube will prevent aspiration-pneumonia, for example, but a belch can still bring the liquid feeding material up the esophagus and into the airway to the lungs.

Urosepsis is pretty serious, especially in the elderly, alas. If he's truly unable to do more than open his eyes, I wonder how much he is aware of anything? Do his eyes follow you? Can you ask him Yes/No questions with 'blink once for No' or something?

Your description sounds like Hospice would be good. He's already said he doesn't want chest compressions, which tells me that 'life at any cost' would not be his choice. The goal of Hospice is to give each patient the best day they can have at that time, which would include pain relief as good as possible, prevention of such symptoms as nausea, constipation, bedsores and so on. Hospice would also provide some support to you, which sounds like it would be needed. Hospice chaplains are generally trained to help you talk about your feelings and consider your options, helping you integrate any religious teachings or opinions you already have with whatever is going on now, but not imposing their own religious views. Hospice social workers have similar expertise in a more secular realm.

By all means have a serious talk with one or both of those people.

And please do bear in mind an important fact, obvious but surprisingly often overlooked: Nobody can prevent him from dying; the best we can do is postpone it. All we can do, as the families of the patient, is try to choose the best circumstances and to support life as long as it is meaningful. And let life go when its meaning and usefulness to the patient has gone.

My heart goes out to you in this tough time.

My husband passed in hospice care. They manage the pain really well, I doubt your dad is feeling anything. Usually what happens is the body slowly shuts down, it's hard I think to wrap our minds around passing like this, but our bodies do have a way of methodically shutting down naturally, pain medication helps along the way just in case. Passing slowly isn't like being injured in an accident. My husband started to shut down before the sleeping phase, for a couple of weeks, and he felt nothing. He quit eating, and went into the sleeping phase after that. As caregivers we also have additional grieving, and it starts before a loved one passes, that grieving starts when we see the decline in our loved ones health and we know it's coming. You're grieving now. You've done the right thing.

Don’t feel guilty! Feel proud that you are helping your dad! In hospice care you are giving him a better more peaceful life. He will be pain free. 20 years of having Parkinsons was no easy task! Let him be pain free for the remainder of his life...you are doing the right thing for him! You are giving him dignity, only a loved one of Parkinson person can understand.

With both my parents, their doctors told us when it was time.

We used hospice for my dad and am I'm so glad we did. He had been hospitalized for pneumonia and flu but was already in probably last stages of dementia. The doctors at the hospital suggested it. I think they knew more of what he was facing than we did at the time. We called in hospice and they helped him and us transition. He already really didn't want to eat and his organs were shutting down. I don't really think he was in a lot of pain, but the medications helped with his agitation and restlessness. I think the hospice chaplain really helped my mom understand the transition and to give him permission to leave. Everyone from hospice was compassionate and caring. The hospice chaplain has called my mom and sent articles every month since his passing and honestly, that's a been a big factor for our healing. Hospice is more than end of life transition for the patient, for us it was transition and support for the family too. The relationship my dad had with hospice was 10 days and he really wasn't awake for it. The relationship we've had with hospice has been 14 months. Don't feel guilty at all. They will be a gift to your family.

I would suggest you do hospice at home. Why introduce your dad to an unfamiliar place with strangers; unless he already resides in a nursing home.

Whatever decision you make, is the right decision.

My husband was 75 when he died unexpectedly two days ago. For the past 8 months I watched him go from being a vibrant person. To bring wheelchair bound and unble to transfer from his wheelchair in and out of bed.
The stress of seeing him like that was terrible.
He also had a DNR and before I called 911 I had it in my hand.
Your dad would not want to live this way, would you?
Hospice will keep him comfortable and provide you with support. Don't keep your dad alive when his quality of life is so poor.
You have to ask yourself how will I feel in a year.
I know in my heart that my husband did not the quality of life he endured these past months.
I would never wish him back.
It sounds like your father can not get better you need to honor his DNR wishes. God unless you whatever decision you make is the right one for you.

my dad had continuing uti's for years til they began happening every month - we would take him to ER - they would admit him for a couple of days, with iv antibiotic and send him home, good as new, until the next one hit. This past month (May) he had two uti's and one of the doctors decided - it's time for hospice.
Not really sure why? Then thought am I just in denial about this, but my dad is perfectly fine in every other way - no high blood pressure, no high cholestrol, never smoked in his life, a very healthy 98 year old! Doesn't get around much but he's content. Why did this doctor decide it's end of life care for him?

Please let your Dad go. The feeding tube is no way to live and he would have no quality of life.
My brother had throat cancer and needed a feeding tube for several months. It saved his life because he could not eat . But he is now cancer free and is strong and healthy. So there was definitely a positive result with the feeding tube. But it sounds as if your Dad would only receive nutrition but may not even be aware that he is still living. I don’t think he would want to live on and require full time care . He could live with the feeding tube for 1-2 more years. I doubt that would be his wish.
Don’t feel guilty even though I know it’s a hard decision. My husband is in the late stages of Alzheimer’s but I will not prolong his life with a feeding tube when that time comes. He has signed a DNR about 3 years ago and I know he has accepted the fact that he is ready to go.
It sounds as if your dad has accepted it also.

Feeding tubes can be life saving but like everything else the body has the final choice and the body will go into it's final shut down phase when the feeding is no longer processed and causes discomfort.

From the way your father sounds it would not seem a good idea to burden him with a feeding tube so let hospice do it's job and keep him comfortable for whatever time he has left and don't torture yourself wondering if it the right decision.

Dina; A doctor can recommend Hospice but can't make Dad be on it. That's Dad's choice. Is that what Dad wants?

Hospice care can be done at home or at an appointed "hospice facility." If your father already signed a DNR, that seems like a pretty clear indication that he did not want his life prolonged artificially when the time came.

With a 20-year-history of Parkinson's disease, plus the dementia - his days on planet earth are already numbered. He will "waste away," whether or not you put him on Hospice care. The least you can do is to make him comfortable in his last days.

I would like to encourage you to reach out to the hospice team that is caring for your father. They are also there to support family members. The team not only consists of medical personnel but also a chaplain, a social worker, and a bereavement specialist.
This team is available to answer questions that you may have and offer spiritual/grief support - now and after the passing of your loved one.

My prayers are with you and your family!

Having been the primary care provider to my client for 3-1/2 years, I regret that client (along with input from her sister) said NO to hospice a month or longer before client actually got it. Client was with Hospice only for 3-1/2 days before she passed away.
Hospice was exceptionally helpful to both my client - and me - being the primary care provider with no support from family -
MY UNDERSTANDING IS THAT HOSPICE wants to keep the person COMFORTABLE.
Morphine helped my client immensely for those last 3-1/2 days. They helped me with all kinds of needs-too numerous to mention here.
As a family member, I encourage you to get this support for you - and your dad.
In the long run, as was mentioned, he might get off Hospice care if no longer needed accordingly to their criteria to get it initially, or he may transition peacefully with whatever care he does get. The in-between 'keeping him alive' with drugs or feeding tubes is a very personal decision. What is key to me is that you let go of the burden of responsibility-let go of the emotional and psychological load you've been handling and let Hospice support YOU as much as possible. From my point of view, Hospice was a Godsend to me - and my client - and I would think the same for family members making these decisions - although I am projecting here based on my own experience.
Gena

What should you do if you don't attend church?

cak2135, I remember back when both of my parents were on Hospice. My parents were very strict Catholics, but I had left the church decades ago. On my Mom's final days, it was a Sunday and there was a Baptist minister having a service at the facility.

One of the nurses wanted to know if it would be ok if the minister came in to say a prayer for my Mom. Dad and I were more than happy to have his presence. The minister and his wife had some wonderful words to say that were so very comforting.

The next year my Dad was on Hospice, it was a very quick transition for Dad. The facility tried to get a local Priest to give last rites but they were unable to schedule it. An Aide heard about this and asked my Dad if it was ok for her to pray with him. Dad said yes.

So it doesn't matter if one attends church or not. It depends on what the patient wishes to do and what they felt comfortable with. The patient could always say "no". If I was a patient, any religion that came through the door to pray would be fine :)

passingfancy, what do you think your dad was thinking about when he did the DNR order? I believe that not being tube fed is a very common thing to think about before initiating a DNR order. It's good that he has a DNR and it's wonderful that you are there for him.