existential suffering.

I think I finally feel compelled to just go ahead and expose and explore the next level of this topic that I am interested in discussing. My disclaimer is that this is an opinion-in-progress for me... A controversial one, and it is not fully developed. Furthermore, by sharing this, I fully recognize that I am opening a topic to a potential audience of every kind of difference in belief systems surrounding this topic, experiences, ideas about what it means, and so forth.. However, that is part of what makes this topic so fascinating to me. Palliative care is fascinating precisely because of that variety of beliefs and opinions.

I went to a lecture tonight hosted by a medical association composed of women physicians in Utah. I would argue that this is a very specific and self-selected group.. Still, it was startling to observe the differences in interpretation and opinion that surfaced during the discussion.

The lecture was essentially about the topic of palliative sedation in cases of refractory pain and suffering for the purpose of "respite breaks." In other words, you can knock them unconscious temporarily with the goal of relieving the suffering inherent and inescapable in their current state of existence... One big debate in this topic in our country is whether it may inadvertently "shorten" or "lengthen" this person's life.. which may be beside the point all together if it achieves the goal of relief of suffering.. but it always surfaces and ignites discussion nonetheless...

I am always fascinated that while discussing the topic of palliative care, there is always a discussion about whether we may accidentally "shorten" a person's life. When I say fascinated, I think I mean that on a very innate level of what I believe, I think it is an irrelevant question. I believe this for the following reasons: we cannot know or predict when a person may die. And we have no idea if our comfort-driven interventions had any effect on when that moment would happen. And we will never know if making someone more comfortable temporarily shortens or prolongs one's life, and it is very likely different for each individual case anyway. Finally, and most importantly, it does not matter.

What we do know is that when someone cannot oxygenate their blood, we can force it to happen with mechanical ventilation. We also know that when blood pressure drops to a certain low level, we can use medications to raise that pressure and perfuse organs better. These things will make someone live longer. No doubt about it.

The discussion starts: What is "humane"?

Specifically, my question is: Is it possible that a planned suicide may exist on a very humane and sane level?

I can propose some persuasive and thought-provoking arguments that may make you believe that yes, it is possible. Starting with my own first hand experience of shadowing a physician certified to administer Physician Assisted Suicide in Portland, Oregon at OHSU. This was my first consultation experience in this realm, and at that time, there was no debate or unrest in my mind about this topic. Simply stated, I believed it was wrong for a physician to participate in such a thing. Why? Only because I believed it was wrong, and that is all.

This patient was presenting with her husband in consultation with a physician offering this service after having been diagnosed with ALS, a disease known to follow a progressively worsening and debilitating course and has no cure. In a Western Medicine sense, we sort of throw our hands up at these cases. Oh well, sorry!

In these cases, there are always some specialists in academia doing research off in the distance hoping to "find a cure." You may be able to enroll these patients in a study. Now, as people are better educated about the manner in which we run our health care system in this country, more often we may remember to enroll them or at least educate them about hospice. But essentially, these patients are screwed. And believe me, more often than not, they know it.

Most of what I do and what we all do in medicine, including in palliative care, is done with the ultimate goal of either making a person live longer or improving their quality of life (for example, plastic surgery, ophtho, psychiatry, etc)...

Similar to the patient I referred to above with ALS, someone in this meeting reflected on another patient who had recently been diagnosed with dementia.. And they were requesting to know about a "way out" before their mental abilities got too incapacitated, before they no longer had any idea about what was going on or happening.. This patient specifically wanted to know about assisted suicide... because they acknowledged that continuing life in a state of the inability to think was counter to what they believe is a quality of life worth living... and you cannot cure dementia, only slow the progression.. So, should that decision be a personal choice? Are they wrong for believing that? If so, why? Is it a "sin"? Or is it mere counter to our current societal norm..? Does it just make us uncomfortable? And if so, why? Especially considering the lengths we go to save lives..

I can remember taking care of a patient on MICU in residency who was transferred from prison.. He was incarcerated because of raping multiple women. He developed an upper GI bleed after living his life as an alcoholic. There was no question about our role in this scenario, we were supposed to and did stop the bleeding... I am not saying that I or anyone else should have the authority to decide whether this person should continue living or not, but I do find it intriguing that we do feel some grand moral authority to condemn a person who does not want to continue living... while know with absolute certainty that we should save someone's life who we as a society have incarcerated to a life in prison for a terrible crime...

Here is another. A patient whose career was in social work was diagnosed with HIV before the advent of anti-retrovirals, and he decided to take it into his own hands to end his life when he started developing complications from the infection.. He did this so that his resources could go toward his community rather than toward extending his life and prolonging his suffering.

I will take it one step further down this muddy slope.. Existential suffering. "Severe suffering from grief, shame, guilt, or loss of control." I personally know a patient very well by now who is dying from anorexia nervosa. She is 30kg and looks like she was peeled out of a pile of dead people in a concentration camp, with ribs and clavicles jutting out of her wasted carcass. .She has been dying and suffering with this disease since she was 17 years old, and she is now in her 60s by virtue of the medical care we have provided with a goal of prolonging her life via modern technologies. Anyone who is vulnerable, psychiatrically ill, and suicidal because of a disease they cannot conquer is deemed "not competent" to make the decision about whether or not they would like to prolong their life.. This definition was created by the ethical latticework of our society that we created ourselves.. Our ethical notion is that these people are mentally sick and we should cure them of this psychiatric illness. Because of that notion, this person has suffered through 50+ years of life with a disease that apparently neither she nor we can conquer, and has been in and out of treatment programs and hospitals and psychiatric wards her entire life.. It is excruciating to be a part of participating in the care of this person with a goal to extend her life.. She has reached such a level of debility that finally, she could qualify for hospice... and she may finally find some peace..

Can I take it just one more? A perinatologist brought up the topic of the intrapartum diagnosis of a known postpartum death sentence of the fetus. This particular physician is involved with these mothers who carry pregnancies to term and through delivery with the knowledge that the infant will not survive after birth... and also with the knowledge that with modern technology, we may be able to keep the infant alive for a year or more in who knows what state of existence... and suddenly now we are discussing the ethics of abortion..

I find it to be very striking that as a society, we have decided that it is ethically sound to prolong life as long as possible despite the loss of all "quality" and in a state of great and prolonged suffering, but it is ethically wrong to perhaps hasten the arrival of death by virtue of assisting with the relief of the suffering associated with an acknowledged anticipation of a known and predictable fact that you will die. In many cases, the only unknown is when you will die, and how long and to what extent you will suffer before that death..

I have written about this slippery slope before, and here it is again. I do not mean to support, condone, or condemn Physician Assisted Suicide for the terminally ill or those whom I call the "rationally suicidal" - by that, I mean those who do not want to continue living under current circumstances for reasons that are out of the hands of human control. But instead, what I mean to convey is that it is such an individual discussion. I just believe that some blanketed, generalized and imposed "moral compass" for all of society is impossible to create in this particular topic. That is partially why I believe it should be available and open for discussion, while hopefully avoiding the blind eyes and firm grasp of over-regulation and condemnation as a general rule.. especially if this means an Ethos created by whomever happens to be sitting in a legislative or religious body making these rules at any given moment..

Not to belabor the point too painfully, but the fear of palliative care and even physician-assisted suicide reminds me of this debate about allowing openly gay men and women to serve in the military. It seems that some people fear that the military will become one giant and uncomfortable orgy by allowing this.. and that is absurd. Men and women, gay and straight, sick and healthy, dying and living are all co-existing in this world. And whether we care to admit it or deny it, it is undeniably true that this is the case.. There is a great fear of allowing physicians and patients to have more control over death, like we might start running around the hospital shooting patients up with huge doses of Morphine.. I just don't think that by not putting a fence up before a cliff, that we will all suddenly be inclined to jump off of it..

Because I have a personal computer and a protected area to write what I think about all this down, I will say what I think is the right thing, and you can agree or disagree or not know and think about it...

I think the KEY here is the Integrative Palliative Care Model. Having a real discussion about aligning goals of care, using multiple resources to achieve it, and everyone on that team educating each other with goal of treating the "whole person." This can mean almost anything you can imagine depending on the discussion it provokes with an individual patient.

This ideal of treating "the whole person" is a large part of why I originally decided to do Family Medicine, although it is unfortunately sadly lacking from the profession in the sense I intended... My job is much more about blindly following "standards of care" as defined by "evidence-based medicine," following protocols, protecting myself legally, completing endless stacks of paperwork and inboxes, having rushed discussions and plans thrusted at patients with never enough time, etc.. but that is a whole other discussion.

Anyway, One last thing.. The first obvious counter-argument to mine is this: One does not need the assistance of a physician to commit suicide if that is what they intend to do..

My response is that may not be what the patient "intends to do" when the topic presents itself. They may be communicating to us what they fear about the manner in which they will die.. They may be asking for a sense of control.. They are telling us that they need our help, that they don't want to lose the ability to think or talk or eat... they don't want to exist in a state of endless suffering at the hands of ruthless life-prolonging technology. We are pretending that death is out of our control, and it isn't any more.. We have a lot of control. After all, in many of these cases, the really ironic thing about this discussion is that many of these patients would not still be alive if it weren't for our interventions in the first place. I think perhaps that they need our help to avoid succumbing to the reality of these deep fears while enjoying the gift of being able to continue living now, and the reason they need us is to build a foundation of trust that, in the end, we may help them to have a good and peaceful death... if, that is, we know what their own personal definition of a "good and peaceful death" is..

check it out.. http://www.pbs.org/wgbh/pages/frontline/suicidetourist/

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To die proudly when it is no longer possible to live proudly. Death of one's own free choice, death at the proper time, with a clear head and with joyfulness, consummated in the midst of children and witnesses: so that an actual leave-taking is possible while he who is leaving is still there.

~Friedrich Nietzsche, Expeditions of an Untimely Man

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"While I thought I was learning how to live, I have been learning how to die."

~Lenoardo da Vinci