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Ending life - inexorable decline, manipulation, autonomy. Who decides?

More than a year ago, I made the decision to stop my Dad's medical treatments. He was 89 years old, with 3 types of metastatic cancer. He was receiving multiple transfusions, in the hospital more than out. He was in and out of delerium. Multiple minfections, any one of which would have killed him if left untreated. When he could express himself, he stated he did not want further intervention.

I spoke with his doctors, asking whether his treatments were extending life, or reducing suffering, or benefiting him. His oncologist, urologist, and family medicine doctor all stated that these treatments did not have benefit, and in fact might me making him more ill. I should add that I am a doctor as well, and I already knew this. The only rationale that any of them could give was, "But we have to do SOMETHING! Hospice is so extreme!".

But we did decide to go with hospice, at my suggestion. Hospice requirements are for life expectancy of less than 6 months. No medications to extend life, no antibiotics, no blood tests, no hospital visits. Comfort care is emphasized, pain control, avoidance of interventions that serve only to prolong life.

The interesting effect, here, was that he rebounded. The chemotherapy was not only suppressing the cancers, it was suppressing his bone marrow. When the chemotherapy was stopped, apparently he started making blood cells again, his clotting mechanism started working again so he stopped bleeding all of the time, his white blood cells started working again so he stopped getting infections. Being in a very pleasant, cheerful, attentive, clean nursing home, he was less lonely, started eating more, gained weight, and started walking again. For the next 9 months or so, he improved. Then the cancers started to take their toll, and he declined again. Now, this 6ft 2 robust man is about 100 pounds, he looks like a concentration camp victim, with sunken eyes, skin that tears with a bare touch, too weak to get out of bed, starting to develop bed sores.

Then they took him off hospice, because he failed to die fast enough. Interesting timing. Last week he developed an infection, high fever, delerium, low oxygen levels. I am sure death was imminent. They called and asked if he could be given oxygen, I said yes, that is for comfort. What they didn't tell me is that he was given an antibiotic - not allowed with the hospice agreement, but he is no longer on hospice.

So the infection improved, my Dad woke up, the fever passed. They tested his blood - again not allowed on hospice, and again, he's no longer on hospice. No surprise, he's profoundly anemic, and now back to the hospital for a transfusion. He's an agreeable guy, and if the people around him tell him he'll feel better, he'll go along with whatever they say. He's fairly easily manipulated. Since he's alert and oriented to the situation, there is nothing I can do.

I've accepted this is something I can't do anything about. In the "culture of life", suffering is considered good. Indignity is considered good. There is no question that he would have died last week without intervention, and no question that his life now is that of 100% dependency, 100% debility, more indignity, more hospital intervention, depression, and misery.

Why? I suspect it's partly greed - those interventions are expensive. The hospice program is much less costly for government and insurance companies. The people involved are also infused with Christian ethics, never say "enough is enough". For whatever reason, god want's us to go against what god is doing. In other words, god wants us to try to delay the death that god has planned. That's god's will, for us to do that.

Not sure what there is to discuss here. I suspect that most nontheists are on the same page here. Also, my hands are tied here, unless / until he is delerious again. Then I'll feel guilty, but since it's mup to me then, I'll tell them not to intervene. When he was healthier, and for all of his life, that is what he said he wanted.

Tags: culture of life, death, hospice

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Permalink Reply by Sentient Biped on July 30, 2010 at 9:42pm

The living will issue is a good question. His does not allow for intubation or CPR. Im not sure if it is specific about antibiotic - they did not tell me it was given, I tricked them over the phone into admitting it b y asking which one was used (as opposed to whether one was used).

In this case also, I ask myself if I am projecting my values onto my parents. It may well be that my Dad wants it this way, and Im fooling myself to think otherwise. In addition, it's reasonable to ask whether I am placing my desire for closure, after this very long emotional ordeal, above his wishes. I don't know the answer to that, I hope not but there may be some truth to that. How do I know what he really wants right now? He has always been private about his inner thoughts and in his current state is kind of passive-aggressive to boot.

There is also a cultural issue. In my parents' small midwestern town, people seem to think their way is the one way, and outsiders (such as me) don't count, don't have a say, and don't need to know the truth. It's part of why I left, happy to see the town shrinking in the rear-view mirror of my Ford Maverick, so long ago.

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Permalink Reply by Little Name Atheist on July 31, 2010 at 6:22am

I take it your father is being "cared" for in your parent's small midwestern town?

How long did it take for you to become an outsider? I was considered an outsider in my small midwestern US town, even having family on one side going back six or seven generations, and even having grown up there. I may also be an outsider in Vermont. I've pretty much resigned myself to being an outsider most places except for Atheist Nexus.

It's very hard to know if one is projecting one's values on one's parents in situations like this. When my mom was dying from cancer, she was only 51, At 29, I was suddenly thrust into the role of decisionmaker. By the time I got back to take care of her, the cancer was too far gone. She'd been seeing a chiropractor who just kept taking her money instead of suggesting she get a second opinion.

Anyhow, it's incredibly hard to deal with passive-aggressive people in situations like this. My mom wasn't, but her mom was. You have my empathy.

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Permalink Reply by Sentient Biped on July 31, 2010 at 8:52am

I was an outsider as early as I can remember. People used to joke that I was a hospital mixup at birth - behaved too differently from other people. When they played baseball, I read books. When they fished, I gardened. I devoured books on science when other people were watching sitcoms on the 2 television stations that reached the town. When they pretended to read the Bible, I did read it and became an atheist as a result. Not to mention the gay thing, which the locals detected years before I had a word for it or understood what it meant. Strangely enough, only on joining the Army in my late teens did I feel at home - and that was among people who came from places far different from mine, and who looked much more different from me than the people who I grew up with.

Regardless, when I return, I start to feel like Im returning to the scene of the crime. As soon as I cross the county line, I start to regret the trip. It's like a form of PTSD. But I do it regularly because it's my duty to remain involved in my parents' care, and I don't want to be someone who abandons their parent in a nursing home. I don't want them to feel like Im not a grateful son.

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Permalink Reply by Ann Sawyer on August 8, 2010 at 2:30pm

Readers of this thread might be interested in this article by the well-known doctor/author Atul Gawande:
http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande
The value of hospice care has been definitively established; it is not only cheaper, but may actually extend life as well!
I'm volunteering with a hospice organization, and my boss happened to bring up the "rebound effect" that Daniel mentioned, saying that it's a common phenomenon.

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Permalink Reply by Sentient Biped on August 8, 2010 at 8:23pm

Im sure with my Dad that hospice extended his life significanty, and Im grateful for that. Current update, he's back on hospice now, and Im glad for that. The staff at his facility are in agreement now that he's declined to the point where more interventions with tests and medicines are useless and probably harmful. I'm releived that they are in agreement.

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Permalink Reply by Sentient Biped on August 8, 2010 at 8:32pm

Being able to discuss this here has been very helpful for me. It makes a big difference to discuss without having religious prejudices rear their ugly heads.

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Permalink Reply by Sentient Biped on August 15, 2010 at 12:26am

An update - My dad is now no longer taking nutrition. He is back on hospice. Discussing with the hospice nurse today, she said he can't swallow without taking food into the airways, and has no desire to eat. No artificial nutrition will be given. No way to know - he's rallied before, but this seems like an irreversable decline. The doctors, nursing home staff, and other people involved are still on board this time.

It's a matter of - hours? days? couple of weeks? Strange, I seem to already have done my grieving anticipatory and on loss of the person, even while his body lingers on. This is more like "closure" that people tell me is cliché. And mercy.

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Permalink Reply by Sentient Biped on August 17, 2010 at 10:03am

Writing now from airport, on the way back to "the town that time forgot". Dad passed away last night peacefully and without pain, in caring hands of the hospice staff. With this, the final chapter of his life was written. He had a good life, and if ever reflected on that, Im sure he know it. I was fortunate to have him in my life for so long.

As for the topic of this thread, what I have learned is that when someone has directions regarding their end of life care, they also need for people to be assertive and somewhat intrusive with caregiving staff, to be understanding but also to emphasize what the patient wants, what is consistent with their values. This extends even to the "afterdeath", what is done with the body. For myself, I've made clear that I want no embalming (toxic chemicals), no crypt (such a waste of money and materials), no coffin (ditto), no cremation (toxic fumes and greenhouse gases) - these are a poor heritage for those who follow. In my area there are green burials, involving wrapping the unembalmed body in cloth and burial in a semi-wilderness area for in-ground composting, which enriches the soil and uses little energy. An alternative is burial at sea, but more difficult to finds someone to do it. As for my Dad, I'm not the only one in this discussion, his town does not have green burials, he's already bought the crypt and coffin, and I don't know about the laws regarding embalming there. So he will have a conventional internment.

Thanks for the comments here, it's been very helpful to me.