Hospice and the Tough Decisions

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Thank you SO much everyone. Oddly, as soon as I got home from work, I stood in the shower and cried and cried and cried. I just think I needed to let it all out. I decided to stick with the hospice route and just continue to make Dad comfortable.

Every day I see him get weaker and it breaks my heart. My Dad was always a proud guy and though always thin (his nickname is "Skinny Willie"), he was strong and strong willed. He was quite dangerous on a basketball court and smiles when he sees African American professional basketball players -- something that wasn't thought of as a black man in the south in the 40's when he played.

I am going to pick up that book today. I also spoke with Hospice and they are going to see if they can manage all of Dad's medications (that's the only reason I stuck with the VA - for the free meds). They are also getting the social worker more involved to see if we can have Dad's transportation person transport Dad to and from the van to the Adult Day Center in a wheelchair to ease the burden of him trying to walk that short distance and the anxiety of him trying to remember the time schedule. I don't think he should keep going, but it makes him happy.

It looks like this is "the beginning of the end". I didn't think it would be this tough. I pray (hope this doesn't sound mean) that his transition is painless, peaceful and quick. In the meantime, I'm already making preparations because when IT finally does happen, I won't be in the mental state to handle it.

The support here is invaluable.
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99.9% of all doctors are not formally trained to discuss quality of life because of liability.

Your father's doctor is doing what's he's been trained to do: See a medical issue, refer the patient to a specialist. It's up to you/us as caregivers to decide what is best for your/our loved one's quality of life. Many times the treatment is worse than the disease itself for elders who are already suffering from a slew of other serious health issues. Just because you can treat a medical condition doesn't necessarily mean that you should.
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I am forever grateful to my FIL's oncologist who saw that dad was at the end. He didn't offer one more round of chemo, one more drug, one more transfusion. He just said "This is the end. We knew it would happen, "L" fought the good fight." Because I had been dad's primary caregiver for the 6 months prior to his death, I could see how bad he was. Dh and SIL were kind of frantic, having seen him on his "deathbed" a few times before. He'd always rebounded. They both thanked the Doc and said "We think he will rally, he always does." Doc asked if he could give something to FIL to ease his painful breathing--and DH and SIL said Yes. The doctor administered the biggest syringe of morphine I've ever seen. Said he'd hang around for a while--and dad passed within a few minutes.

Now, some people would take umbrage at that doctor. I thanked him profusely. Maybe he hastened dad's death, but if so, it was only by hours, not days or weeks of suffering.

Many drs cannot see past the "do no harm" part of the Hippocratic oath, or they are scared of not doing everything possible to keep someone alive. Sometimes family members are crawling down their necks for a magical cure. It's a tough road.
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No, you are NOT speeding up the process. You are avoiding a prolonged, painful death. You are a good daughter. A good read on the topic of how the medical community fails us on this topic is 'Being Mortal' by Atul Gawande.
Blessings,
Jamie
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Tiny, my grandma had COPD and when her kidneys started to fail, her nephrologist (actually the nephrology resident) recommended dialysis. It was put to us as "Well, it's that or she'll be gone by the end of the week." We agreed in a panic and it was the worst decision. She had a few weeks of being in a lot of pain, the visits to dialysis were awful for both her and my mom, and in the end the blood thinners caused her issues and we spent her last hours with her in the ER and then ICU.  If I could go back and help her choose hospice instead (if that had even been suggested to our family as an option) I would do it in a second. After the fact, I told my friend who's a primary care dr about it, and she was appalled that the doctor recommended dialysis for a person in their late 80s, particularly with her health issues.

My husband 's take on it -- this is my layman's retelling -- was that when my grandma's heart and lungs were not functioning properly, it put a much greater demand on her other organs to compensate. If the demand becomes too much, at some point the other organs start to shut down, and there may be nothing medicine can do to make the person better. They can prolong things, or postpone them, but not improve them.  The above advice from other readers is really good. I wish we had had that input when my grandma was sick.

I know you will make the right decision for you and your dad, but I hope the medical staff is spending time answering your questions, and giving you honest, thoughtful and straightforward explanations about what is happening with your dad so that you are not bearing the weight of this decision all on your own.

Your posts always touch my heart -- your relationship with your dad, his feistiness, your own struggles balancing being a good daughter with maintaining your own well-being, and your sense of humor -- so many of us are rooting for you, and I hope that you find strength and calm during this time.
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I would absolutely do what you're doing (NOT do dialysis or prolong his treatments). When my 91-year old father was diagnosed with lung cancer, his oncologist wanted him to do six weeks of daily radiation treatments (Mon - Fri). I said absolutely not at his age, what was the oncologist thinking? It makes my blood boil just thinking about it now, 9 years later. I asked what we could do to keep him comfortable. So we did two weeks for palliative care (so 10 treatments). Even those left him with a gigantic burn on his chest. I can't imagine what 30 treatments would have done to him. He died a year after his diagnosis and went quickly and without pain. I hope your dad can have a similarly quick and painless end when his time comes. You are doing the right thing. {{{Hugs}}}
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Tinyblu, No Way, You are not giving up if you choose No Dialysis, instead you are opting to instead choose Care, Quality of Life, and Symptom Control. IMO, Now is a good time to bring in Hospice, to aid you in supporting your Dad through the end of his life in the best and most compassionate way possible, unless of course your Father Adamantly chooses to go through the treatment, but it doesn't sound like he would.

Remember, we all die of something, and it sounds as if your Dad has other medical issues, that would make hemodialysis difficult for him and his family, and dialysis does not mean that his life expectancy would be improved, and might even make his life much more difficult than if he did choose dialysis.

Renal failure, to my understanding isn't the worst "way to go", yes, the patient becomes tired, may have increased itching, fluid retention, increased confusion and even some pain, but most of these symptoms can be treated and managed , along with some dietary changes and restrictions.

At 87, is it really fair to put him through 3 arduous treatments per week, only for him to come home feeling poorly, tired, and still needing to manage his diet and the side effects of the treatment?

I think its wise to read up on your options, have an in depth consultation with his Nephrologist, and other Specialists, and see whether or not opting out of Dialysis is the wiser choice, given his age, his co-morbitities, his living situation and how it would affect his day to day, and how it would affect those who care give for him, as treatment sadly, may be futile and even detrimental at this point.

I wish you good luck with your decisions, and Remember, you are a Great and loving daughter who only wants the best for their Father, or else you wouldn't be struggling with the decision on what is best!!!!!
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I always remember when my FIL with dementia was in end stage renal disease and had been taken off of dialysis, a cardiologist entered his room and said brightly " we'll be doing a pacemaker tomorrow".

He was chased from the room by me ex and his three brothers.

Tiny, this must be agonizing for you. Dad's brain is dying, and so are some pretty significant parts of his body. Hospice is there for a reason. To let him down easy and help you through this.

Please don't take this as criticism, but did you ask Hospice if they could get dad whatever medical forms needed certifying for daycare? Does dad still need the added stress of daycare? Something to think about.

I've never known a more devoted daughter, dear. I'm honored to know you.
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Tiny, this goes to the question many of us have - just because we can do a treatment, should we?
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I also suggest reading 'Being Mortal' by Atul Gawande. For end-of-life treatments very often the medical profession is not acting in the best interest of the patient.
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