End of Life Care

[nwsteve]

CNN has an excellent overview of the challenges with end of life care costs and impact on health care costs. Cutting the high cost of end-of-life care - Dec. 12, 2012

Examples, 25% of all Medicare costs occur in the final year of life.
Nearly 70% of terminal lung and/or lung cancer patients are aware that their Chemo will not cure them.
Only 8% of patients are aware and understand what pallative care provides
Only 33% of Americans have signed end of life directives but 60% claim they do not want end-of-life decisions to be a burdern on their families.
The article also provides some helpful links, including ones for final directives and how to get one with a doctor's signature.

Been through with one parent and about to start with DW's folks--obviously not easy!

Nwsteve

 

[easysurfer]

Thanks for the article. The photo pretty much sums it up.

I've gone through the tough experience with my mom, brother and a dear friend. In my mom's case, she wasn't aware of the situation, so as a family we had to decide. In my brother and dear friend, I think ultimately we honored their wishes.

No matter what, it's not an easy situation.

 

[ERhoosier]

Excellent article. Having gone through these issues more than once with my own family/friends I agree with author that denial is a huge problem. Some families even fight a patient's Living Will, which can put docs & hospitals in very bad position. Families (& docs) also seem to forget that cost is not just in $$ but in added pain & suffering for the patient. IMHO- A key question should be required (perhaps by Medicare?) on any medical consent forms for any major test . "How will the results of this procedure (or test) change my (patient) outcome?".

From a philosophical perspective- A friend dying of cancer once told me that his diagnosis did NOT change his "outcome". Life is a "terminal condition" since everyone will die someday. All his diagnosis did was to change the likely time frame. In that sense, all medical care should be "palliative"- i.e. helping us optimize the quality time we have left in this world.

 

[Brat]

Recently the Oregonian had a two-part spread on tube feeding. Bottom line is that for most elderly it simply extends the dying process. The Cost of Dying: Simple Act of Feeding Poses Painful Choices | Compassion & Choices

 

[bondi688]

We all want control of our lives and I do not understand why we do not want control of our exit, when and how. I was surprised a state as liberal as MA voted down legalizing physician assisted suicides in the last election. I had gone through seeing loved one suffering through prolonged and painful dying process from cancer, I certainly want to preserve my own choice.

 

[Silver]

Life is a "terminal condition" since everyone will die someday. In that sense, all medical care should be "palliative"- i.e. helping us optimize the quality time we have left in this world.

I couldn't agree more. Although it's our very nature to die, the American culture does very little to acknowledge it, and assist us to prepare. I suppose it's because people turn away from what they fear.

I have appreciated several articles on the website called Compassion and Choices. End of Life Choice, Palliative Care and Counseling - Compassion & Choices As a registered nurse I admire and respect my colleagues working in hospice. As a daughter who involved hospice in the end of life care of my parents, I am grateful beyond words.

I make no judgement of people who pursue every medical option as their end of life choice. But that will not be my choice. I have seen what the health care system can and will do if they're allowed, and it's not for me.

 

[MBAustin]

We found out when having our wills reviewed that the rules for medical power of attorney had changed (at least in Texas) and we had to do new ones. It was good timing since both DD and DS are now over 18 so we can make them our alternates. So we'll be having a family discussion while they are both home for Christmas about what we would want.

I may have posted this before, but when my father was in ICU (for 2 days) before dying from a hospital-acquired infection (that's another story), I saw several elderly patients who were basically unresponsive, had few or no visitors, and by the thickness of their charts, they had been there a long time. I view that as both cruel (most important) and wasteful.

So if you don't have a medical power of attorney and advance directive, what a great holiday present to give to your family! Just do it!

 

[Katsmeow]

So if you don't have a medical power of attorney and advance directive, what a great holiday present to give to your family! Just do it!

I'm going to give a partial dissent here. We just redid our medical powers of attorney and looked at the new advance directive form (new since the last one we did some years ago). DH and I talked about it and ending up freely choosing not to do an advance directive. The biggest issue was that if we did an advance directive then the spouse would not be able to use the medical power of attorney for certain decisions. That is on the things controlled by the advance directive it would govern even if, for example, DH with my power of attorney thought otherwise.

I didn't like some of the advance directive wording. It seemed to paint with too broad a brush. I could see situations where the directive might call for X to be done while DH in the situation might think that something other than X should be done. However, he would not be able to decide that as the advance directive would govern in that situation.

If I was single then I could see doing the advance directive but in my actual situation I would prefer to have DH making the decisions. He and I have both talked about what we would want so I feel comfortable with leaving things a bit more fluid so that he could have input. I just don't find a compelling reason to take things out of the hands of the person that I trust the most to put into a 2 page document that really doesn't have much nuance to it.

 

[Nords]

I saw several elderly patients who were basically unresponsive, had few or no visitors, and by the thickness of their charts, they had been there a long time. I view that as both cruel (most important) and wasteful.

Years ago Dear Abby and Ann Landers used to run columns about how elders in nursing homes weren't getting visits on their birthdays, Mother's/Father's Days, and holidays-- and how disappointing it must be to have such thoughtless children.

Then the adult children started writing in to the columnists to explain how dear ol' Mom & Dad were reaping what they sowed.

So, while those patients may only be sucking up healthcare resources with perceived minimal return on investment, there's still two sides to every story.

Usually everyone's in favor of cutting healthcare expenses-- until it's their grandma. Assuming she's not reaping what she sowed...

 

[Sarah in SC]

That feeding tube article reminded me I one of the best albeit grim, book recommendations I've ever gotten on this forum. Loving and Leaving the Good Life, by Helen Nearing about the Ed of her husband's life. He chose to quit eating in order to end his own life. It is very compelling, and what I would choose for myself.

 

[MichaelB]

When I read these articles I get a type of cognitive dissonance because my own experience is totally opposite that of the author. In two situations the doctors were the ones to either hint or openly suggest treatment be withdrawn when there were still treatment options available.

I don't doubt the article at all, and the $$ evidence is compelling, but real life health care is not to easily categorized into needed and unnecessary. In a hospital everyone is trained to treat, improve, cure. If we don't want to spend the money we need to find less costly places to help and treat people.

 

[bondi688]

..... If we don't want to spend the money we need to find less costly places to help and treat people.

To me, it is not the money but the futility and the suffering and prolongation of the dying process. I hope I'll have the option to say when enough is enough, and have the ability to decide the when and how.

 

[MBAustin]

Usually everyone's in favor of cutting healthcare expenses-- until it's their grandma. Assuming she's not reaping what she sowed...

We (my mother, sister, and I) made very deliberate choices at the end of my father's life to discontinue aggressive treatment once it was apparent that the antibiotics were not working against his blood infection and that his heart (weakened from chemo) was unlikely to sustain him through a long illness. The doctors presented options of other things to try with a slim chance of success and we declined all of them, choosing for him to be made as comfortable as possible. While reducing the cost (primarily to Medicare) was not our objective, it was the result, as additional aggressive treatments would not only have been more expensive, they probably would have prolonged his life by at least a couple of (very expensive ICU) days.

I might feel somewhat different if it was my child instead of my elderly parent in the same situation - but then there is more likelihood of a good outcome when the patient is younger.

The important point is that many people who haven't thought about or discussed this with each other and/or their doctor in advance feel like they must do everything possible to prolong life, no matter what the likely outcome. That is a large part of what is driving up healthcare costs, IMHO.

 

[MBAustin]

I'm going to give a partial dissent here. We just redid our medical powers of attorney and looked at the new advance directive form (new since the last one we did some years ago). DH and I talked about it and ending up freely choosing not to do an advance directive. The biggest issue was that if we did an advance directive then the spouse would not be able to use the medical power of attorney for certain decisions. That is on the things controlled by the advance directive it would govern even if, for example, DH with my power of attorney thought otherwise. ...If I was single then I could see doing the advance directive but in my actual situation I would prefer to have DH making the decisions. He and I have both talked about what we would want so I feel comfortable with leaving things a bit more fluid so that he could have input. I just don't find a compelling reason to take things out of the hands of the person that I trust the most to put into a 2 page document that really doesn't have much nuance to it.

Excellent points here. Thanks for the additional perspective.

 

[rodi]

I'm a big fan of advanced directives. It definitely helps family members make the tough decisions. I had the unpleasant experience 5 years ago of dealing with 2 of these. My dad's directive made it clear that there was to be NO life support. He had been caregiver for my mother's last years with terminal ovarian cancer. He did not want to end up on machines, lingering. Literally within 2 days of my dad learning he had multiple myeloma (he died from complications from the chemo), my brother calls from the hospital - he had a very rare, aggressive, neuroendocrine carcinoma. His wishes were the opposite of dad's - do EVERYTHING to extend life. Even though his cancer was more aggressive, his prognosis was far worse. 2 months later my dad's in the hospital with septic pneumonia (because of his weakened immune system) - and we knew exactly what to do - allow antibiotics, etc... but when he slipped into a coma we knew to decline dialysis ports when his kidneys started failing, keep the pressers going just long enough for his sister to arrive and say her goodbyes, then let him go. It was totally on his terms.

My brothers wishes were not what I would have chosen - he went through extreme surgery after extreme surgery, spent his final month in the ICU, on a vent, with pain meds maxed out. I spent that month with him - and he never waivered that he wanted everything possible done - even though he knew he was terminal and imminently so. His directive made it easier to follow his wishes that went against every instinct. (My sister and I both suggested hospice/palliative care.) He was in a teaching hospital with a doctor that could have been House - top doctor with no bedside manner. They used his rare/aggressive cancer as a way to train the residents assigned to his doctor. So some good came of it. He died 2 months after dad.

 

[braumeister]

I was very lucky with my parents. Both had advance directives and me with durable power of attorney. We discussed it from time to time, and they were both adamant that they wanted absolutely no machines, no feeding tubes, nothing.

They felt strongly that quality of life was more important than quantity, and they were completely prepared for the end. I feel exactly the same way, and so does DW. Very lucky.

 

[Nemo2]

Shortly before my late wife died of small cell carcinoma, her doctor asked me if I'd considered putting her on a ventilator, (I think he was 'obliged' to ask since he appeared relieved by my response); I told him that, if it was a step towards a cure, then I'd agree to 'anything', but if it was merely prolonging artificial existence simply for the sake of prolonging it, then 'nothing'.