Saturday, March 7, 2009

Road Trip Euthanasia

Here's a link to an article about a British couple, both with terminal cancer, who traveled to Switzerland to die together at an assisted suicide clinic. The topic of euthanasia will always incite vigorous debate and as we move into this era where our ability to provide expensive, life sustaining care in cases of terminal cancer or the elderly patient in the ICU with multiple organ failure starts to overlap and conflict with our ability as a society to pay for such care, it is an issue that ought to be brought to the forefront of the entire health care debate rather than being shunted off into the realm of "provocative dinner party discussion topic amongst well to do people who have no stake in it either way".

I'll get my stance on euthanasia out of the way right now: It strikes me as absurd and almost fascist that the State holds the right to determine the terms of how an individual chooses to die in cases where death has become inevitable. Too often we see the poor, broken-down, emaciated, pellucid-skinned, dry mouthed, cracked lipped, hollow-eyed skeletal figures in the hospital, admitted for "dehydration" or "ileus" or "nausea/vomiting" or "abdominal pain" but what their real problem is is terminal cancer and they're dying and they look at you with weary beaten eyes when you walk into the room, hi I'm Dr Buckeye, a surgeon, and there's a slight shake of the head, shoulders sagging and whispering, you can barely hear them, have to lean in close, they say no surgery, I don't want any surgery I want to die, they say. It happens all the time. It's sad and horrifying and you can't imagine how helpless they feel, in a hospital again but they know the score, better than anyone else, but they're too tired, too worn out to fight it anymore as a son or a husband drags them into the ER yet again in the middle of the night.

Some may say--Hey what about Palliative Care/Hospice? And that's certainly an option. But there's something inherently ghoulish about hospice if you think about it. And this isn't necessarily a criticism; the very nature of palliative care and hospice is based on a certain element of ghoulishness, no matter how much we'd like to think otherwise. It's like funeral parlors; no matter how nice they are or how well run or how expertly they apply the make-up to your loved one's face or how personable the owner of the parlor seems to be, you never want to spend a lot of time in one and you don't get all nostalgic about the previous parlors you've visited in the past. It's an industry based on death and dying. Our culture unfortunately is simply not ready to treat death as a normal aspect of the life cycle. That's the way it is.

The set-up for hospice is this--you have a condition whereby your life expectancy is less than six months. You get admitted to a lovely "facility" away from it all, often in the woods somewhere, often described in pamphlets as "rustic" or "pastoral". The floors are often lacquered wood and there's soothing music in the background and every room is spacious and clean and confortable and there's a wide window that's looks out into nature, pine trees, squirrels, tortuous creeks etc etc. It's all quite fine. But what if you're suffering from Stage IV colon cancer and your liver bulges with gnarled, fist-sized metastatic deposits and you're either in too much pain or too doped up on pain medications, too sedated to really care one way or the other about the pastorality of of your chosen stage for dying and really, as long as someone keeps pumping the morphine or dilaudid into you, it wouldn't matter to you if you were here or stranded in a shabby room in some Motel 6 on a barren stretch of Southwestern USA highway. It's sounds awful but I have to believe that a large percentage of the benefit of hospice care is not for the dying, but rather the living who will remain when the loved one passes on. You don't want to have to visit your dying grandma in some soul-withering nursing home or in an ICU with a million tubes sticking out of her; instead, think how soothing it would be to see her in a beautiful private room, with family pictures set up everywhere and the nurses are attentive and never make her wait for pain meds and she just seems so comfortable and driving home, a part of you thinks, well, maybe dying isn't that bad. And you go to sleep that night thinking "at least she's in a good place", an actual place not some euphemism for heaven, and it's powerfully comforting for some reason.

But what about those people who don't want it all dragged out in sedated tranquility and blissful narcotized beatitude? What about the man who's been through 3 rounds of experimental chemotherapy and he's made his peace and come to terms with his own mortality and he's tired and broken and just wants to exert a last bit of control over a life that has already careened so far out of his control compared to the existence he knew prior to being diagnosed with cancer? Why is this even a moral issue? Why is his best option to enter a "facility" that functions solely as final depot on his journey toward death, where everything exists and functions in such a way to make that process more comfortable, soothing, almost stream-lined? And every day waking up he knows it's all a thin veneer, perfume sprayed over a rotting corpse, the day of reckoning creeping ever closer but he doesn't know when, he just has to keep going, day after day, passively slogging through the rest of his existence with a docile resignation.

It's time to start having a legitimate conversation about euthanasia. Modern medicine now has the power to drag patients past previous lines of demarcation between life and death and sustain them artificially for a time. There's always another chemo regimen. Admit to the hospital for dehydration. Place a feeding tube. There's always something we can do to attenuate the long slow decline. But what about when we've exhausted all the weapons in our arsenal and the futility of the situation becomes undeniable? There are unforeseen consequences to modern medicine. Swept under the rug for far too long has been this effect of creating a population of patients who, in previous generations, would have died quietly at home, but now are re-animated so to speak, just enough to allow discharge, just enough to get them through another few months. We have a responsibility to these people. They've trusted us to bring them to this point of utter defeat. The "moral" thing, to me, would be to at least give them the option of quickly and painlessly ending it on their own terms.....

13 comments:

Resident Anesthesiologist Guy (RAG) said...

Sooner than later our society has to come to grips that people die. "Do everything" should be met with what we're actually comfortable doing, not just our own uncomfortableness with death. So often I see the exact faces you described - with families thinking they've seen some change and want us to continue pounding away at them. It infuriates me when we continue to do so, without ever discussing the reality of the situation or the inhumane nature the patient is being treated. People die. It's time we accepted that fact.

Bianca Castafiore said...

My experience with hospice care is mostly with home-based programs, which I think are marvelous, mostly because the nursing and doctor care was unobtrusive, calming, and tailored entirely to the patient's desires for a good death among family and friends. The only person I know who died in a hospice facility was a homeless man who lived only a few days after we placed him there -- he was transfixed by the clean sheets, the pain meds, the food. It about broke my heart to see how those things that I rarely thought of were sources of such joy to him. Still, even though it was a fancy-schmancy place, he died essentially *alone* -- and no one wants that. Anyway, when I think of American Hospice, I think in terms of pain-relief and companionship. When I think of what I want for my own death? I worry that what is "slogging" through a hopeless life, for me, will not meet my doctor's, not to mention my government's, standards.

Cathy said...

You paint a pretty bleak picture of hospice, which is unlike what myself and my family have experienced. I'm not saying what you say isn't so, I'm certain when people enter a hospice facility, you have probably described it well.

For a lot of people, my family included, hospice means being able to keep the person at home, not in some facility some where. It means making sure they stay comfortable and as pain free as possible. It means having someone to help so that you aren't making trips to the ER. It is in lieu of hospital admissions. It is allowing your loved one to die in their own home with their family taking care of them.

Personally I think hospice is great and they do control pain and ensure comfort while keeping your loved ones at home.

Assisted suicide I can't get my brain around. I feel it is just morally wrong. There is also the flip side to everything you have said. What about the family members who get tired of dealing with an ill person? Maybe "they" just want it all to hurry up and end? If that's the case is it still called assisted suicide or murder?

radinc said...

I have a solution that addresses this and also solves the healthcare crisis.

Every year, we all should have to go to a place where we line up and go one by one into a small room with a big red button.

You get 10 minutes to push the button. If you don't push it, you die.

There will have to be some modifications of course for people who have no use of their arms etc. we'll work on that.

This plan is totally fair and would eliminate a lot of the wasted "medicine" we do every year on unsalvageable cases.

rlbates said...

I like the thought of "allow natural death" which we don't do often enough. I have seen some great examples of hospice care. Currently my BIL (57) is in the local VA hospital and needs a heart transplant. They've talked to my sister about all the care options they have, making arrangements to fly him to Richmond, VA, but no one has spoke to her about possibly having to decide when to quit (except me). Tough decisions/ choices.

OHN said...

This certainly is a hot button topic. I have very strong opinions about how I want to die. If I am terminal, I want to go on MY terms.

In my work, I have the opportunity to read about patients last stages, many times each day. So many times I think about all the invasive techniques that are being used to extend a life that has absolutely no quality. That is not my opinion, it is typically the opinion of the patients, they just need a advocate. Too often, the families are so consumed with despair and grief, that they are the ones keeping the patient alive by requesting or demanding that more needs to be done.

I have relatives that live on a farm. Their perspective of the cycle of life seems so much more practical than those that are not around birth and death as often.

I have a 90 year old aunt that is in extremely declining health, and significantly, though pleasantly demented. The last time she was close to dying, another family member rushed her to the hospital, wanting everything done. I went to the ER to sit with aunty and she wanted nothing to do with any of it. Unfortunately, this other relative had already started the ball rolling and protocol stated that that ball had to keep rolling unless there was written documentation to stop it. This relative was reacting from her heart, not her head. Aunty has had a long and terrific life and she was ready to go, and wasn't allowed that dignity.

When I get old (ha, some say I am there) I hope I have the capacity to make my own decisions and decide for myself when enough is enough. If not, I may have to get a big DNR-CC tattooed on my chest.

platensimycin said...

Striving to make them comfortable and preserve their dignities.

"The Hospice" by M. of Bristol, UK.

Brian and Jennifer said...

being an ED physician, I see way too much of the "do everything" mentality when it comes to someone actively dying.

when you have stage 4 lung cancer and are found obtunded and in respiratory distress, no amount of intubation or pressors will help the situation. yet, far too many families choose that route. I wish that people could see the suffering that goes into tracheostomy and PEG tubes and being hooked to machines and realize that it's far worse than the painless hypercarbic state that comes with obtundation.

MissFifi said...

I volunteer my massage therapy services to at-home hospice care. I enjoy my work, so I guess I am ghoulish, but I have had some patients and families who still rush their dying loved on to the er or to try another therapy even though you can see the end is near. We need to talk about death more. It is all about who is left behind and during distressing moments, they make choices that can actually hurt the dying loved one. I am all for someone choosing euthanasia, I am just not sure how we can get it approved in this country.

Sharkdiver said...

An excellent treatise on the subject Buckeye! Just because modern medicine can do something doesn't mean they should - it's the question of what is possible versus what is right. As RAG said, people die, it's time we accept that.

I too, believe that terminal patients should have the option of physician assisted death when the time comes. On the bright side, the people of Oregon, and now Washington have figured it out - hopefully other states will soon do so as well.

In the interim, there are some things people can to do to make their wishes known, the first and foremost of which is executing an advanced directive or living will, which are legal in almost all states. The second, and equally as important, is to talk to their family members and tell them clearly what your wishes are and that you expect them to be honored. Another step, if it exists in your state, is to get a POLST (which contrary to popular belief, you don't have to be terminally ill to get).

Frank Drackman said...

So...why can't they use a gun, rope, Economy-Size bottle of Extra Strength tylenol, Cyanide(they keep it in the lab for some reason)?? Or any of the other million ways to kill yourself? Peoples always gotta have someone do the dirty work for em...

Kelley said...

I have to agree with Frank Drackman. If dying individuals want to kill themselves, there are a myriad of ways that don't involve others. I understand what you're saying, and I agree that sometimes, to do something is to do harm, and to do nothing, is to offer compassion, and true care, but there's a large jump (in my opinion) from a DNR order, to a prescription for a lethal dose of morphine, which the physician or nurse then has to administer. While I agree, that sometimes we should do nothing, I don't agree that we should take an action that actively ends a life. If the individual chooses to take his own life, that is a completely different issue. But allowing doctors to participate in this, is a slippery slope. What happens when a patient with end stage cancer is determined to live until God calls him home (assuming this patient is religious), but has a bad, painful day, and asks to end his life, and the physician obliges, although if the patient had to do it on his own, he might wait, and eventually reconcile with his beliefs, and decide to "wait it out." What happens when the patient has not stated the desire to die, but the physicians have decided of their own accord that care is no longer warranted, and death should be required, as was the case with the little boy in Texas. The truth is while there are many compassionate, talented physicians out there, there are also many who already spend too much time playing God, and would relish in the opportunity to get to accomplish the ultimate God-like act, in literally choosing who lives or dies. I don't know, while I understand where you're coming from, I feel this is a slippery slope that could lead to some very dark places.

Sharkdiver said...

Kelly,

I think you missed the whole point. No one is advocating that physicians choose who lives or dies, or that they or any other health care worker actively administer medication to end someone's life. What I believe is this:

1. Any patient should have the absolute right to say "enough - no more" and have their wishes honored. This should include the right to mandate not only DNR, but DNI and no nutrition and/or hydration as well. In most jurisdictions patients already have this right, the problem is getting the health care providers to honor it as they should.

2. Patients with a terminal illness, once they meet specified criteria, should have the option to choose to end their life in a peaceful and pain free manner, without the associated stigma society typically places on suicide.

Oregon's Death with Dignity law (which Washington's new law is also modeled after) is an excellent example of how this can be safely and effectively implemented. It has more than adequate safeguards, and it works. The terminal patient must meet specific criteria and they must follow a specific process to request the prescription from the physician. Once they have the prescription, they must choose to get it filled. Only the patient chooses when and if they actually take the prescribed medications.