End of Life Decisions in the Emergency Room

End of Life Decisions in the Emergency Room

In this case study, a 32 year-old lawyer named John had a history of chronic anxiety, heavy alcohol use and intermittent depression related to his worry about possibly developing Huntington Disease, the disease which killed his mother. Huntington Disease is an autosomal dominant neurological disorder, usually manifesting between 30-40 years of age. It results in chorea (abnormal, involuntary movement), depression and psychological disturbances, and inability to control skeletal and facial muscles. Neurological deterioration is progressive, and irreversible, leading to inability to walk or swallow. Quality of life is extremely low, and death results within approximately 13-15 years of diagnosis (Merck, 2013).

John had told many people that he would rather die than live with the deterioration of Huntington Disease. Worry about the disease caused him to seek psychiatric counseling. 3 months prior, John noticed some facial twitching and sought diagnosis separately from two different neurologists. Each confirmed a diagnosis of Huntington’s. When he told his psychiatrist about the situation he requested help killing himself, which his psychiatrist refused to do. John then reassured him that he had no plans to kill himself in the near future. However, upon returning home he pinned a note to his shirt explaining the situation and refusing any medical help that might be offered, and then ingested his entire supply of antidepressants.

When his wife returned home and found him, she was unaware of the situation and did not see the note. Instead she transported him directly to the Emergency Room and requested treatment. There the ER staff found the note pinned to his shirt. The question is, what action should the ER staff take? (UWSM, 2013).

The question of how much the ER staff knows is a bit of a distractor in this case. We may assume that they do not know any of his back story except the few lines he scribbled on his note in which he may or may not have described his Huntington diagnosis. However, for the purpose of the ethical conundrum of the ER staff, the Huntington diagnosis is a non-issue. Whether or not the patient has a terminal diagnosis is irrelevant to the treatment of the immediate life-threatening condition of anti-depressant overdose. All patients who come into the ER have a terminal diagnosis. Whether or not the ER is successful in saving their lives, they will all die in some unknown time frame in the future. In this case the outer limit of that time frame is known. However, this does not lessen the value of the patient’s life.

Instead, this ethical conundrum revolves around the patient’s right to refuse treatment (UWSM, 2013). The patient’s wife, either not reading the note or not caring, brought him to the ER to seek treatment. In the case of an obtunded patient, consent of a family member is usually considered sufficient. A close family member usually takes on the role of a competent, authorized decision maker known as a surrogate decision maker. Their role is to determine what the family member would have wanted if they had been able to make decisions (Andrews, 2011) (Purtilo & Doherty, 2011, Pg. 263).

However, in this case the wife’s choice of requesting treatment is known to be in contradiction to the patient’s last specified wishes. Based on the note, at a minimum the staff knows that he attempted to commit suicide, and at the time that he swallowed the pills he did not want to be resuscitated. Three specific issues present themselves:

1)    How legally binding is a post-it note pinned to a shirt?

2)    If the note is legally binding, can the decision to refuse care be waived in the case of suicide?

3)    How competent was the patient to make this decision?

In the case of a patient who is dying from unknown cause, the ER uses its full resources to save the patient’s life. They do this based on the assumption that the patient, if able to make the decision, would want to live. This may not, in fact be the case, but in the absence of indications to the contrary ER staff act upon that assumption.

However, in John’s case, the patient has made a statement of his wishes, albeit not a verbal one. Thus the ER, in attempting to save his life is acting in clear contradiction to the patient’s last stated wishes. There are arguments both for and against an evaluation of the note as legally binding. Some physicians say that the note should not be equated with the legal status of a Do Not Resuscitate (DNR) order (Cohen, 2013). The DNR is an advance directive written while the patient is competent. It is verified by a witness and/or legal counsel and in conjunction with a living will describes the patient’s wishes to be followed when they are incapacitated (Andrews, 2011) (Purtilo & Doherty, 2011, Pg. 263). Some professionals regard a suicide note as part of the suicide itself, that is, having been written under the same depression or other mental disorder that prompted the suicide in the first place (Cohen, 2013). Thus, under this view the note lacks the most critical feature of a DNR, i.e. that it was written during a period of known mental capacity to do so.

However, other ER physicians maintain that such a note does constitute a valid refusal of treatment. In fact, addressing exactly this type of scenario, some physicians consider attempts to resuscitate as presenting the risk of subsequent civil action for assault and battery (Cohen, 2013). If the note is regarded as a legally binding refusal of treatment, some ethicists would consider any resuscitation efforts as a breach of patient autonomy and a case of paternalism (Geppert, 2010). Others would argue that to the contrary, a note as a statement of intent is no different from the act itself as a statement of intent. As one internist stated, “There should not be much misinterpretation… of what it means for someone to put a gun to his or her head and pull the trigger” (Cohen, 2013). When the patient has attempted suicide and this is abundantly clear based on the mechanism of injury, witness statement or note, the intent to die can be assumed, and most ERs would continue to provide treatment.

Even allowing the legal validity of the note as a statement of the patient’s wishes, or assuming the patient had a valid DNR, some physicians would act to save the patient’s life, arguing that the DNR does not apply to self-inflicted injuries (Cohen, 2013). This argument has come under heavy criticism in recent years, due to its breach of patient autonomy. The provisions of case law clearly and unequivocally support the patient’s right to refuse treatment (Geppert, 2010).

The argument has been posed as a conflict between the ethical principle of beneficence and the principle of patient autonomy (Geppert, 2010). However, a critical component of informed consent or informed refusal of treatment is mental competence (Purtilo & Doherty, 2011, Pg. 254). Mental competence is often called into question in the case of suicides. In standard practice the ER acts to save the patient’s life based on the assumption that the patient is suffering from a mental illness and the suicide decision is the result of that mental illness, which, if treated, would lessen or remove the suicidal ideation (Geppert, 2010). In fact, this is often found to be the case. According to Guy and Stern, (2006) “Overall, there is strong evidence that psychological and social factors (e.g., comorbid depression, hopelessness, loss of dignity, and the impact of spiritual beliefs), rather than the physical ones (e.g., functional status and the level of pain control), are the chief determinants of the desire to hasten death.”

This is where the patient’s clinical history does have some bearing on the case. If the wife described to the ER staff the patient’s longstanding history of anxiety, depression and alcohol use, this might give them reason to suspect the existence of a treatable mental disorder. If the note described his recent diagnosis of Huntington disease, this would provide a history of a significant precipitating event (Bagge, Glenn, & Lee, 2013). Cumulatively the argument could be made that this supports a suspicion of the suicide as a result of clinical depression, further calling into question the patient’s mental competence to make a decision to refuse treatment.

My position on this case is that the ER staff should treat the patient for anti-depressant toxicity. The treatment is relatively straightforward, primarily cardiac monitoring, administration of sodium bicarbonate for symptomatic ventricular tachycardia with QRS widening, and supportive care for hypotension and seizures. Activated charcoal may also be used, but must be weighed against the risk of aspiration, and the patient’s airway should be protected (Jacob, 2014). These are not extraordinary measures by any means.

The patient’s wishes, as stated in the note pinned to his shirt, are in my view not binding. In fact, given his history of depression, even if the patient came awake during treatment sufficiently to murmur, “No, I want to die,” I would still consider him to be in no mental condition to be competent to make that decision.  I would continue treatment unless he became sufficiently alert and oriented to make his case, cogently and coherently and sign a legal Against Medical Authority (AMA) form. Short of such explicit refusal of treatment I would not feel any legal or ethical responsibility to cease care. I would resuscitate the patient, and then attempt to assess and address his underlying mental condition when he was sufficiently recovered.

Patient autonomy is an important principle of medicine, but is it an ironclad principle? Dr. Atul Gawande discusses medical paternalism and patient autonomy extensively in his book “Complications: A Surgeon’s Notes on an Imperfect Science.” He examines the now sacrosanct concept of complete patient autonomy and gently challenges it by questioning whether, when seeing patients making a terrible mistake, should doctors simply do whatever the patient wants? He proposes that sometimes true kindness consists in gently steering the patient in the right direction in accord with the patient’s best good (Gawande, 2003).

Is this paternalism? The question is a great deal too complex to answer definitively here, but it is nevertheless a question that each medical care provider must wrestle with and personally answer. However, I would propose that the issue is not one that can be settled either on legal or economic grounds, but is instead concerned with the very meaning of life and who we are as individuals and as a society. Our current cultural climate, which values convenience over greatness, and seeks to escape adversity rather than courageously to endure it (Brooks, 2014), finds a morbid and final expression in current debates underway on the value of life (Hensley & Hensley, 2004). These debates extend far beyond this case study, and include discussions of suicide in general, euthanasia, and physician assisted suicide. When the highest value of life is simply the avoidance of pain, then opting out of terminal illness and pain by killing the patient does indeed make sense, even if the patient is a minor, as is currently legal in Belgium (Crawford, 2014).

However, if there is more to life than simply avoiding pain, if, in fact, there is value to be found in suffering met with courage, then do we not do a disservice by denying patients that opportunity, rather than at least pointing out the possibility to them? As psychotherapist and Auschwitz survivor, Viktor Frankl said, “Those who have a 'why' to live, can bear with almost any 'how',” (Frankl, 1984).

What if there is an opportunity for psychological, emotional, and even spiritual growth precisely through and in suffering? What if there is a desperate need in society for the witness of suffering courageously endured and compassionately shared with others? (Brooks, 2014). What if the opportunity for the patient to grow in his relationships, in his understanding of what is truly valuable, and in his service to others is the best medicine for him? (Hensley & Hensley, 2004).

We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms--to choose one's attitude in any given set of circumstances, to choose one's own way (Frankl, 1984).

This discussion admittedly goes far beyond the original question of what the ER staff should do in the case of John. However, I believe that it is not merely enough to decide on a legally justifiable course of action, but rather to search for the most moral course of action and to understand the reasons for it. Therefore, I would challenge those who ask and answer questions such as these to question whether pain and disability are the problem, or whether the real problem is not hopelessness and the feeling of not being valued. There is, of course, no way to force a patient to take the undeniably hard road of searching for meaning in suffering. Such a concept is a contradiction in terms. Nor is intimidation, shaming, belittlement or any other coercive psychological tactic rightly to be used in promoting such a view. This philosophy must be offered to patients with compassion or not at all. It must exist with compassion or not at all. Even with compassion, those who offer it may still find themselves accused of paternalism. However, if Dr. Gawande is right, and true kindness does sometimes require a physician to steer the patient gently in the right direction (Gawande, 2003) then perhaps we should at least hold out the option?

Reference:

Andrews, M (2011) Making End-of-Life Decisions is Hard on Family Members. Kaiser Health News. Retrieved April 9, 2014, from http://www.kaiserhealthnews.org/features/insuring-your-health/michelle-andrews-on-end-of-life-care.aspx

Bagge, C. L., Glenn, C. R., & Lee, H. (2013). Quantifying the impact of recent negative life events on suicide attempts. Journal Of Abnormal Psychology, 122(2), 359-368. doi:10.1037/a0030371

Brooks, D. (April 8, 2014) What Suffering Does. The New York Times. Retrieved April 10, 2014 from http://www.nytimes.com/2014/04/08/opinion/brooks-what-suffering-does.html?_r=0

Cohen, B. (2013) Should you Resuscitate a Suicide Patient? Medscape Article. Retrieved from http://www.medscape.com/viewarticle/812112

Crawford, D (February 13, 2014) Belgium's Parliament Votes Through Child Euthanasia. BBC.com. Retrieved April 9, 2014 from http://www.bbc.co.uk/news/world-europe-26181615

Frankl, V. E. (1984). Man's search for meaning: An introduction to logotherapy. New York: Simon & Schuster.

Gawande, A. (2003) Complications: A Surgeon’s Notes on an Imperfect Science. New York, New York: Metropolitan Books/Henry Holt. ISBN-10: 0312421702.

Geppert, C. M. A. (2010) Saving Life or Respecting Autonomy: The Ethical Dilemmas of DNR Orders in Patients who Attempted Suicide. Internet Journal of Law, Healthcare and Ethics, 7(1) Retrieved from http://ispub.com/IJLHE/7/1/11437

Guy, M. & Stern, T. A. (2006) The Desire for Death in the Setting of Terminal Illness: A Case Discussion. The Primary Care Companion to the Journal of Clinical Psychiatry. 2006; 8(5): 299–305. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1764532/

Hensley, E. & Hensley, S. D. (2004) Depression in the Elderly with Emphasis on Terminal Illness. The Center for Bioethics and Human Dignity. Retrieved from http://cbhd.org/content/depression-elderly-emphasis-terminal-illness

Jacob, J. (2014) Antidepressant Toxicity. Medscape Article. Retrieved from http://emedicine.medscape.com/article/812727-overview

Merck Manual Staff (2013) Huntington Disease. The Merck Manual for Health Care Professionals. Retrieved from http://www.merckmanuals.com/professional/neurologic_disorders/movement_and_cerebellar_disorders/huntington_disease.html

Purtilo, R. B. & Doherty, R. F. (2011) Ethical Dimensions in the Health Professions, 5^th Edition. St. Louis, Missouri. ISBN 978-1-4377-0896-7

University of Washington School of Medicine (UWSM) (2013) Sample Case Study. Ethics in Medicine. Retrieved from http://depts.washington.edu/bioethx/tools/cecase.html

A Sufficient Why

We had talked about why the Army simply fails to satisfy, and what was to be done about it. In other words, we had unearthed the fundamental lack of meaning which is at the heart of our, and millions of other peoples' discontent. It was a step in the right direction, but it left something wanting. What good is it, knowing how hungry you are, if you cannot find food?

For this, I turn to Viktor Frankl again, for he says it much more authentically than I can.

We stumbled on in the darkness, over big stones and through large puddles, along the one road leading from the camp. The accompanying guards kept shouting at us and driving us with the butts of their rifles. Anyone with very sore feet supported himself on his neighbor's arm. Hardly a word was spoken; the icy wind did not encourage talk. Hiding his mouth behind his upturned collar, the man marching next to me whispered suddenly: "If our wives could see us now! I do hope they are better off in their camps and don't know what is happening to us." 

That brought thoughts of my own wife to mind. And as we stumbled on for miles, slipping on icy spots, supporting each other time and again, dragging one another up and onward, nothing was said, but we both knew: each of us was thinking of his wife. Occasionally I looked at the sky, where the stars were fading and the pink light of the morning was beginning to spread behind a dark bank of clouds. But my mind clung to my wife's image, imagining it with an uncanny acuteness. I heard her answering me, saw her smile, her frank and encouraging look. Real or not, her look was then more luminous than the sun which was beginning to rise.

A thought transfixed me: for the first time in my life I saw the truth as it is set into song by so many poets, proclaimed as the final wisdom by so many thinkers. The truth – that love is the ultimate and the highest goal to which Man can aspire. Then I grasped the meaning of the greatest secret that human poetry and human thought and belief have to impart: The salvation of Man is through love and in love. I understood how a man who has nothing left in this world still may know bliss, be it only for a brief moment, in the contemplation of his beloved. In a position of utter desolation, when Man cannot express himself in positive action, when his only achievement may consist in enduring his sufferings in the right way—an honorable way—in such a position Man can, through loving contemplation of the image he carries of his beloved, achieve fulfillment. For the first time in my life I was able to understand the meaning of the words, "The angels are lost in perpetual contemplation of an infinite glory."
Viktor Frankl, "Man's Search for Meaning.

A Step in the Right Direction

A buddy of mine and I were having a conversation about the lack of meaning we had both experienced in the military life. After I had told him about Viktor Frankl he said, "That is very interesting. So you are saying that everyone is really trying to find meaning in life."

"Yes."

"Now some people would say that simply searching for that meaning is what really matters," he went on. "That whether or not you find that meaning doesn't make a difference as long as you are searching for it. That is reason enough in itself. What would you say about that?"

I thought for a bit. "I don't think that can be right," I answered.

"I don't necessarily agree with these people. I am just pointing out that some people believe that and asking what you think."

"I think that that is partially true. It is a falsehood based on a partial grasp of something that really is going on. They are grasping that they need to search for some meaning in life, but to say that it doesn't matter whether they find it or not is nonsense. The only reason for searching for something is in order to find it. If it is unfindable, or if it simply does not exist, then what on earth is the point of searching for it?

You see, this meaning is not something arbitrary and personal. You cannot simply decide, 'Well, I am just going to say that stamp collecting is the meaning of life,' and be satisfied with that. Meaning is not something we create, it is something we discover, or fail to discover.

The people who hold to that belief are not completely wrong. In fact, they are on the right track, so far as they have gone. They have half the truth. They have grasped the fact that we are missing something, and the awareness of this loss is a step in the right direction..."

At this point we side-tracked to a short discussion of semantics. He submitted that "lack" was a better word than "loss," since "loss" implies possession at some point in the past, whereas it seems pretty clear that the person has never possessed this "objective meaning." I accepted his correction since I realized that I had unconsciously been drifting towards a collective loss, the Original Sin of Catholic theology, which was not really our topic.

"All right then, so they have come to feel this sense of something lacking, which is a step in the right direction. But that is not enough. Being aware of a lack all day long will not bring you one whit closer to filling it. Remember, it isn't an illusion, it is an actual objective lack of something that we really, desperately need.

Think about it like this. Suppose there is someone who is anorexic. For whatever reason she simply does not eat, and she is wasting away. For her to feel hungry is a good thing, even though it may be less comfortable than simply not having an appetite. It means she is becoming aware that she is missing calories. However, no amount of hunger will do anything towards putting actual calories into her stomach. For that she will need to act upon her hunger and find some real food and eat it."

He nodded. "Hmmm. Interesting. Well, you have a good weekend."

"You too," I answered. 

An Insufficient Why, Part II

The funny thing about conversation is that it has a way of bringing to the fore and making articulate ideas that were perhaps there, in your mind somewhere, but which were hidden. Perhaps they were active as motivations of actions, as half understood feelings or prejudices, or just as a gut reaction to something, but when you talk about them with someone else, and answer someone else' question, they have a tendency to take shape in quite surprising ways.

The conversation with P was somewhat like this. I have been pondering Viktor Frankl's book, "Man's Search for Meaning," for several years now, especially his dictum, borrowed from Frederick Nietzche, "A man can endure almost any 'how', so long as he has a sufficient 'why'." It seemed self-evident to me at the time, since I was going through the Special Forces 'Q' course. It was not easy, but I endured it because I had a sufficient 'why.' At least it seemed to me that I had a sufficient 'why.'

Perhaps I was a bit naive, but I more or less thought that the Special Forces motto, "De Opresso Liber" (To Liberate the Oppressed) was a serious job description. I envisioned them as being sent off to other countries to battle evil warlords, topple ruthless dictatorships, and rescue refugees. Perhaps at certain times and in certain places they have done these things. Afghanistan is a good example from recent history. However, after getting to know a number of Special Forces guys as instructors in the course I realized that most of them (not all, but most) regarded it as an opportunity to travel to exotic places, sleep with exotic women, and kill exotic people with no repercussions.

After that my sufficient why was pure cussedness. I decided God had put me there for a reason and I was learning a lot, so I was going to hang in there simply for the sake of hanging in there. I decided God had a plan, and I was just going to hang out and see what it was.

There was something that both P and I saw about the job, once we got here. It is fun. There are a lot of fun things that we do. We get to travel, we get to see strange places. I got to jump off the highest canyon swing platform in the world in Nepal, drink fresh chilled coconut milk out of a coconut on a beach in Thailand, ski for free at Mammoth Ski resort in California, learn to climb rocks at Red Rocks in Colorado. We have fun times. I get to shoot thousands of rounds, workout in world class gyms, and learn medicine for free. I get paid for it all.

The problem is that there is a corollary to Frankl's statement. It is true that you can endure any circumstances, no matter how awful, if you have a sufficient reason. I have found that it is also true that if you do not have such a sufficient reason, the circumstances, no matter how fun, simply do not matter. This is why the richest people in the world, with the most leisure and recreation opportunities, cannot enjoy them. They do not have a reason.

There is an insufficient why in this job. No matter how cool some of the things I get to do are, they do not matter unless there is a reason for them. The older I get the more my priorities shift, and the more my priorities shift the more the army, the government, the whole question of politics and economy, nationalism, (dare I say it) Americanism, etc. all begin to seem too small. They feel claustrophobic, as it were. It isn't that they are bad things. They are not, and the world is a better place for those who give themselves unselfishly to any of these goals, and the ends for which they rightfully exist (except, perhaps, nationalism.)

I, on the other hand, have seen that there is more in life. There is something worthier of time and effort and sacrifice. You see, America, the government, the nations of the world, programs, conflicts, all of these things are temporary. All of them are no more than dust in the wind. With the shifting of political and economic climates all of them will simply vanish and no more trace of them will be left.

Sometimes we get sidetracked by the fact that they are more visible than we are. We can see them stretching out for centuries, so there is a sense of history and heritage in them, but from the point of view of eternity that a thousand years are a blink of the eye.

The older I get, the more I figure, "Why bother?" There must be something more.

An Insufficient Why

A few weeks ago I was at work, packing my bags to leave for the day. Another guy named "P" came down into the locker room, also packing to leave. The difference was that he was packing to leave for good. He just came back from a combat deployment, his time in the army is over after one enlistment, and he is done.

P has kind of an interesting life story. He speaks Chinese fluently, having studied it in college. He traveled and worked in China for a year or so. He is a bar registered lawyer who practiced with a law firm for several years. He also spent two years in Africa working for the peace corps teaching at a school, where he taught himself French, which he also speaks fluently. To top it all off, in his thirties he decided to join the Army and go Special Forces.

One time, a little over a year ago, he asked me, "Does your faith give you meaning in your life?"

I answered that, yes, it does, but that is not necessarily why I believed it. I believe because I have come to see that the Faith is True. It is that truth that gives meaning.

He nodded thoughtfully, and said, "I ask because I joined the Army hoping that it would provide me with a sense of meaning, and I was disappointed to find that it really didn't."

With this background, and knowing that I also plan to get out  of the Army about this time next year, it was not surprising that he should ask while he was packing, "So, what are you going to do after you get out of the army?"

I answered, "Try to do something meaningful with my life." It was a rather non-specific answer, since I actually do have a fairly detailed plan (for me). But he wasn't really asking what job I was going to do, or what college I was planning on attending.

"Something meaningful. Well, there is the big question, isn't it? What really is meaningful in life?"

"That is the question, isn't it?" I replied. "That really is the biggest reason why I am getting out. Do you know who Victor Frankl was?"

He shook his head.

Viktor Frankl was an Austrian psychoanalyst in the early 1930's. Since he was Jewish he was deported by the Nazis some time after their takeover of Austria. He survived throughout the war, and out of his experiences he wrote, "Man's Search for Meaning," a book examining the psychological phenomena he encountered in what was arguably one of the most abnormal experiences for a human being to endure. In fact, it was Frankl who coined the phrase, "An abnormal response to an abnormal situation is normal behavior."

The burden of his book was the role of purpose in Auschwitz and other such places. He observed that those people who survived were the ones who had some purpose, some meaning, something worth enduring for. Those who did not have this transcendent sense of purpose either simply gave up and died, or they survived by doing incalculable damage to their own psyches. Only those who believed in something made it through with anything like their mental health intact.

Not all such purposeful people survived, of course, for no amount of  purpose will stop a bullet or make you immune to poison gas. Indeed, some with the deepest sense of faith and purpose did not live. At one point in the book he makes a point of separating himself from the martyrs by saying, "We who have come back, we know- the best of us did not return.” There were those who had such a deep and powerful purpose that it gave them the peace and strength to die well. 

Since I read that book, some three or four years ago, I have been pondering it very deeply. There is something haunting, almost accusing, in the strong, patient insistence on meaning. He coined a phrase by Neitzche of all people, "A man can endure almost any 'how', so long as he has a sufficient 'why'." It is this that P was searching for in his varied and rather remarkable like thus far. He is trying to find a sufficient why.