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

Old People Are More...

My two favorite patient populations to work with have always been old people and children. Of course I have always loved interacting with kids, even when I was one myself. In some respects I still am one. It keeps me sane.

I was surprised when I started working with old people in my medical rotations to find that I really liked them. Perhaps they appeal to me because of their extreme vulnerability, which in America is often pretty great and is getting worse. Children are almost never left unprotected in the healthcare system. Old people very often are. If I can interact with an old person who feels abandoned, unvalued and unloved, and just for a few minutes or an hour or so I can listen to their story and let them know that they are still worth my time and patience, I like to think that I am fighting back against the hatred that society has for the ones who no longer make money.

But vulnerability is not the only reason they appeal to me. Underneath the vulnerability I see something else, which I am not sure how to describe. The only word I can think of is "rootedness." They are not less than the young patients, they are more. Old people have already become. I am explaining this very badly.

My fiancee and I agree that in general there are two kinds of old patients. There are terrible old patients and there are awesome old patients. There are no average old patients. (This is not including patients with dementia or Alzheimers or some other primary mind altering condition. They are a different story altogether.)

Once in the ER, on the exact same day on opposite sides of the hall I had two patients, both older gentleman, one in his late 60's the other in his early 80's. One had come in for a fall in his garage, and spent his whole visit complaining about how much pain he was in, and how terrible the service was, and how he had to tell his story so many times, all the while explaining how tough he was and what a high pain tolerance he had. I was examining him and he winced and screamed like I was stabbing him every time he saw me come near where the injuries were.

The other gentleman, the older one, had cut his leg with a chain saw a week prior and had calmly driven in to the hospital and gotten it stitched up (bad call on the part of whoever stitched it). Now it was closed, but there was a huge, angry, red abscess cooking in the wound pocket which had not been allowed to heal from the bottom up as it should. His whole front thigh was in pain, but he was sitting upright, quiet, patient, chatting and telling stories of his exploits and the strange things he saw back in the War. We squeezed every drop of pus out of that wound by force and then mashed on it until there was not one little pocket left undisturbed. He turned a few shades paler (he was a black gentleman) but then he looked at the huge glob of pus and clot we had expressed and jokingly asked whether he should give it a name.

Old patients are not less of anything than their younger counterparts. They are always more. They are either courageous beyond belief, or whiny beyond belief. They are either interesting in ways that no younger person could ever be, or incredibly dull. They are either utterly loving and self-giving, or they are exasperatingly selfish. The elderly gentleman with no teeth, rheumy eyes and unsteady feet is still more courteous and gentlemanly (and charming, my fiancee would say) than any suave, cultured man of the world. The dirty old man is more lecherous than any horny teenager would ever dare to be. That peaceful old lady with the curly white perm is more completely unselfish in her every thought than I have ever been at my most heroic. That other lady in room three is more vocally and rudely inconsiderate than I have been since I was a baby.

Perhaps my fiancee and I have this perspective because we see them under stress. The stress may reveal traits that do not show in day-to-day life. However, I think there is another reason. I think that old people live in extremes like that because they have spent their whole lives becoming that thing or the other. They have either been practicing strength and courage and courtesy and become very good at it, or they have been practicing weakness, manipulation and whining their whole lives and have gotten very good at that.

Whichever the case, it does not change how I treat them. If anything, I have to put more effort into the whiny patients. I don't know their whole life story (although I probably will if I don't watch out) and I don't know what they have been through. I don't know what they are afraid of. They probably don't know what they are afraid of, and if they have not faced up to it in the last 70 years or so, odds are they won't do it in the time they have left. I pray that they do, though. Even at the end of our lives, all of us are still becoming. Right up until the very end, change is still possible.

At any rate, it makes me take a good hard look at my life. I ask myself, what kind of old person am I becoming? Am I becoming a holy terror? Or am I becoming that awesome old dude who can crack jokes while getting an abscess drained without anesthetic? It is worth thinking about.