End of Life Decision in the Emergency Department: Between Hope and Possibilities

Wayne Triner, DO MPH FACEP, Associate Professor, Department of Emergency Medicine, Albany Medical College

We are heading toward a new demographic era. Presently, there are five million Americans above 85 years of age, by 2050 this number will double. Among those 85 and older, only 5% are fully mobile, and 50% are cognitively intact. We are told that about 1/3 of us can expect to live to 85 years or more. About 2.5 million persons die in the United States each year. Unlike previous decades, trauma and acute infectious diseases are no longer the leading causes of death. We are dying older and because of chronic conditions. Sometimes this leads to confusion as to when death “should” occur. With our skills and interventions we can often sustain life in spite of “fatal” illness. Yet sometimes we worry about the cost of this with respect to the pain and inhumanity imposed upon the very person whose life we are sustaining. Since this will be increasingly played out in emergency departments, how do we as emergency physicians play a role in appropriately guiding patients and families through the dying process?

Previous generations had direct experience with death. Prior to 1950, patients typically died at home, cared for by family members. After all, hospitals had little to offer in meaningfully prolonging life. With the advent of medicine as a science, illness became a “malfunction”. With skillful practitioners and use of advancing technologies, the malfunction could be repaired or circumvented. Confidence was bestowed upon medicine to prolong life. And in so doing, we also assumed responsibility for dying. Between the 1950’s and mid 1980’s most Americans died in hospitals. Under our watch, when death did come, it occurred behind closed doors away from family. The proportion of deaths in hospitals has been decreasing since 1985 (roughly 41% in 2000). However an increasing number of us die in nursing homes (about 23%). So we see, death still occurs outside the view of most people.

Americans therefore have a notion of death that is not shaped by direct experience. Media, television in particular, is instrumental in our view of death. Deim’s entertaining study in 1996, illuminated profound discrepancy between the media’s portrayal of CPR outcomes and reality. On Chicago Hope, ER and Rescue 911, about two thirds of persons who received CPR survived to hospital discharge; all without major neurological impairment. Yet in reality, less than 8% of pre- hospital cardiac arrests survive to hospital discharge; most with moderate to severe neurological disability. Sharon Kaufman in her book “A Time to Die: How Hospitals Shape the End of Life”, observes that Americans see death as a failure of a component within the individual.i We sometimes fail to view dying as a process that involves the entire organism.

People die in a fairly predicable fashion. This is referred to as the trajectory of death. If we are young and seemingly healthy, we are fully functioning until shortly before death. This is generally due to some catastrophic event such as trauma, sudden cardiac death or overwhelming infection. About 20% of us die following an initial diagnosis or recurrence of cancer. In this case, we tend to be fully functional until the disease overcomes us and we die, generally a period of weeks to months. Another 20% have a slowly progressive illness such as heart failure or chronic lung disease, which is marked exacerbations and hospitalization followed by a return to the baseline rate of deterioration. The final 40% of us will have a slowly progressive illness that marches steadily along for years to decades until we die; dementias. The Brown University Center for Gerontology and Healthcare Research followed patients from the time they were diagnosed with a fatal illness until their death. They found that there was a demonstrable loss in ability to carry out activities of daily living (bathing, dressing, feeding, toileting…) in the six to seven months prior to an individual’s death.ii

We have placed faith in advanced directives. Yet these instruments have limitations. It places one in the untenable position of making decisions “for an unspecifiable future confronted with unidentifiable maladies with unpredictable treatments”. Additionally, psychologists tell us that we are not the same person during different stages of our lives. We redefine our values and attitudes every seven to ten years. Not surprisingly then, less than 50% of nursing home patients and 18% of patients on Med-Surg floors have completed advance directives.iii,iv Probably a more meaningful means of exercising control over our healthcare, when we can no longer voice our intentions, is appointment of a healthcare proxy. This allows a trusted surrogate who is familiar with our values to act on our behalf. They are charged to interpret information in the immediate clinical and human context.

The basis of end of life decision making for surrogates rests in one of three ethical models. Substituted Judgment: This concept is best described as; if by some miracle, the patient could express their views and desires, what choices would they make? Of course this cannot happen, so the surrogate is left to infer the choices the patient would make from the choices they made when they were able to act. Someone who shunned medical intervention, say for lung cancer, might not choose to have life sustaining mechanical ventilation. Another, who previously chose ongoing dialysis while permanently wheelchair bound, might choose mechanical ventilation for the same condition. Substituted judgment can place the surrogate in a very difficult position. One is left to question the depth and insight of convictions regarding the patients expressed attitudes and values. Best Interests: This principle allows the surrogate to make choices in the best interest of the patient, regardless of how the patient might have acted. In essence, it places trust in the surrogate to act in a manner that protects the patient from suffering or harm. However, balancing suffering or harm against potential benefit is often difficult and based upon individual values. It is assumed that these values would be shared between the proxy and the surrogate. Pure Objective: There may be cases in which the pain and suffering associated with prolonging life clearly outweigh any benefit to attempts of prolonging life. Generally the scale is shifted by the improbable likelihood of affecting any positive outcome from an invasive intervention. An example might be choosing to forego an attempt of surgical repair of a thoracic dissection in a person with no meaningful chance of survival due to co-morbid conditions. In this case, the choice might be to avoid separation of a patient from loved ones in an OR or ICU with invasive modalities employed while being mechanically ventilated, only to face a certain death.

From an ethical standpoint, it is important to state that nowhere do the above principles consider the value of any given life. Society demands that we, as healthcare providers, consider each life invaluable. The cost to a society that tries to weigh the value of any single life would be unacceptable.v Decision making in this arena must center upon the interests of the patient, not society or another individual.

Not surprisingly, there are often confounding issues. It is reported that as many as 50% of end of life caregivers meet criteria for major depression. Some caregivers have come to shape their lives and sense of purpose around caring for the dying patient. Occasionally, families who cannot reach consensus regarding end of life decisions, leaving the proxy facing significant guilt regardless of course of action chosen. Thus the biases and confounding features can cloud decision-making. Clouding of judgment occurs to the extent that decisional incapacity results.

We correctly assume that persons presenting to EDs do so seeking help. We are trained to intervene in cases of inadequate respiration and perfusion to restore these functions. In these circumstances we “act first and ask questions later”. However, patients near the end of life may present to EDs seeking help of a different nature. A Danish study looking at this phenomenon found that the major reasons for ED presentation of terminal patients were lack of primary physician involvement and lack of symptom control.vi When a patient at the end of life appears in the ED, there may be some discrepancy between the care a patient wishes and the care they receive. Marco in 1997 found that only 78% of emergency physicians would withhold CPR if they were presented with a recognized DNR document. Only 8% would withhold CPR for verbal expression by a family member of a desire to not resuscitate.vii There are indications that patients with pre-existing fatal illness who die in ICUs have not had a discussion regarding DNR prior to their transfer into the ICU.viii In those patients who have had such a discussion, many choose not to be transferred to an ICU.

There are probably several reasons emergency physicians are reluctant entering a discussion centered on allowing a patient to die. We are oriented toward resuscitating patients with limited available data. And we cannot reverse a decision that allowed a patient to die if some new information comes to light. We do not want to appear less than fully committed to caring for a patient or saving a life. Avoiding the emotional fallout that follows a death may play a role. There is also a perception that litigation may follow a death if extensive efforts were not provided. However, a working group of the New York City Hospital Cooperation legal council report no incidents where a hospital or physician was approached, sued or censured for allowing a terminally ill patient to die. Nor did they express concern over such action as long as thoughtful discussion with relatives was carried out.ix

If the decision is made to forego life-sustaining intervention, there are still many needs to be addressed. Families and patients voice concern for failure to achieve pain control, relief from dyspnea and emotional well-being.x There is much we can do in the ED, but it requires a level of commitment that is impossible to sustain. Many primary care providers can collaborate in care. Palliative care is a specialty to which we may turn. It is a recognized subspecialty with it’s own body of literature and specialty boards. (for more information go to http://www.abhpm.org/)

So now, the million dollar question; how does a physician, who has never before seen this patient, know that they are in the ED for reasons other than to have their life prolonged? You know these patients; the frail, nursing home patient with advanced dementia and apparent pneumonia, the cachectic cancer patient who is in severe pain, the tired 60 year old with COPD or CHF, the elderly man with a massive midbrain hemorrhage. Can intubation or ICU transfer be delayed a few minutes to make a phone call or talk to the spouse or offspring to ask a few questions? “I don’t want to assume that I know what you would like me to do. Have you thought about what you would want to have happen in this situation?” One of three responses can occur. “No”, in which case this is probably not the right time to generate life-ending plans of care. “Yes we have” to which it is fruitful to listen. More challenging is “What are our choices?” or “What do you mean?” This is the beginning of a discussion regarding hope (prognosis) and choices. Often, the family has a better view of the prognosis than we as emergency providers do. They know the progression and pain this illness has thrust upon them. There may have been discussions with other physicians. Perhaps this is an acute condition and they need to understand the range and probabilities of various outcomes. Many families can digest this quickly.

Possibly the most useful approach to treating terminal patients in the ED is to start with a discussion of the desired goals. Once the goals are defined, it is our established and comfortable role for us as physicians to guide individuals and families in achieving them. When we begin these discussions with an ala cart menu of intervention choices (antibiotics, pressors, intubation, dialysis, surgeries…), we are providing an illusion of choice. Most families have no experience with these interventions, the discomfort or inconvenience they may have or how they might alter outcomes. Additionally, when studied, we rarely offer the choice of allowing to die. When working toward goals, we can tailor interventions that will be meaningful in reaching them.

Hopelessness is a poor companion. We can offer meaningful hope in working for a comfortable death in the presence of caring and calm family. Surveys of families and dying patients indicate that the biggest concerns regarding death are pain, dyspnea and “emotional”.xi,xii Clearly emergency physicians can help by appropriate use of medications, discussions of expectations and allowing friends and family access to the patient. However, as already mentioned, there will be a need for ongoing care and advisement. Generally, this requires a committed physician willing to take on the task. Hospice services are available in virtually every county. Hospice organizations with medical directors may not require a collaborating physician. It will often be necessary to briefly admit the patient to the hospital to bridge services until hospice involvement can be established. Most hospital or ED social workers and case managers are familiar with accessing hospice services. Medicare and Medicaid reimburse for these services.

Your choice to pursue a career as a physician was probably motivated, in part, by the desire to have a positive impact and be a part of important life events. Nowhere is this played out to a greater degree than helping a patient or family achieve a comfortable end of life. It brings you in intimate proximity with persons most in need. Often these families are the most grateful for the sensitivity and compassion we express through our listening, actions and advice.

References
i “…And a Time to Die; How American Hospitals Shape the End of Life” Sharon Kaufman; 2005. Scribner, New York.

ii Teno JM, Weitzen S, Fennell ML, Mor V. Dying trajectory in the last year of life: does cancer trajectory fit other diseases? Journal of Palliative Medicine. 2001;4(4):457-64.

iii Solloway M, A chart review of seven hundred eighty-two deaths in hospitals, nursing homes, and hospice/home care. J Palliat Med. 2005 Aug;8(4):789-96.

iv Salmond SW Attitudes toward advance directives and advance directive completion rates. Orthop Nurs. 2005 Mar-Apr;24(2):117-27.

v Taking Care: Ethical Caregiving In Our Aging Society. The President’s Council On Bioethics Washington, D.C., September 2005. available at www.bioethics.gov

vi Abom BM Unplanned emergency admission of dying patients. Ugeskr Laeger. 2000 Oct 23;162(43):5768-71.

vii Marco CA Ethical issues of cardiopulmonary resuscitation: current practice among emergency physicians. Acad Emerg Med. 1997 Sep;4(9):898-904

viii Rady MY, Johnson DJ. Admission to intensive care unit at the end-of-life: is it an informed decision? Palliat Med. 2004 Dec;18(8):705-11.

ix Connie Zuckerman. End-of-Life Care and Hospital Legal Counsel Current Involvement and Opportunities for the Future;January 1999.
accessed Feb 20, 2006 at www.milbank.org/end.html

x Teno JM, Family perspectives on end-of-life care at the last place of care. JAMA. 2004 Jan 7;291(1):88-93.

xi Steinhauser KE et al; Factors considered important at the end of life by patients, family, physicians; JAMA Nov 15, 2000;

xii Teno JM, Family perspectives on end-of-life care at the last place of care. JAMA. 2004 Jan 7;291(1):88-93.