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?
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