Clinical Scenario: You are taking care of a middle-aged female who was brought to the emergency department by her family for altered mental status. She has stage IV ovarian cancer and is undergoing chemotherapy which has caused persistent nausea, vomiting, and diarrhea. According to her husband, she was conversant and fully oriented this morning. During the day, she suddenly became very confused. Per the patient’s husband, the patient has had multiple episodes like this in the past, usually associated with electrolyte abnormalities in the context of her persistent poor PO intake. You review the patient's electronic chart and note that she has been admitted approximately every two weeks for electrolyte replacement over the course of the last several months. You call the patient's oncologist, who states that they had been trying to manage her as an outpatient, but agrees that she needs admission again. You inform the husband of this plan, and he notes, reluctantly, that he is "used to the routine.
It takes a while to get the bed upstairs. In the meantime, you correct the patient's electrolytes and her mentation improves. When you go in to check on her, you assess the patient's understanding of her disease. The patient and her husband are aware of her poor prognosis from cancer, but they are considering another round of chemotherapy and seem resigned to continued aggressive medical interventions.
Despite the busy ED around you, you take time to talk to them about their life. The patient says that what she actually wants to do is spend as much time at home as possible. The patient and her husband are not familiar with hospice care and state that she is not ready to "just give up and die."
After your conversation, you walk away and wonder what is (and what should be) the role of emergency providers in initiating end of life conversations with patients and families? What are the harms of avoiding these difficult subjects and what benefits can be gained by doing so?
"End-of-life" is not a rarity in emergency medicine. Before starting in this field, many of us may have assumed naively that our experience with end-of-life situations would come acutely in the form of sudden cardiac arrests, terrible car accidents, or gun shot wounds to the chest. The reality, however, is that emergency medicine also encompasses oncology, geriatrics, end-stage organ failure, debilitating co-morbidities, and social work nightmares. We take care of the chronically (and newly chronically) ill, and it is our duty as physicians to discuss their medical options with them in a way that they can understand.
The majority of people would prefer to die at home [1,2]. Despite this, over 75% of Americans die in an institution . One in five Americans dies in or soon after a stay in the ICU. In a study done by Teno et al. looking at over 1500 patients who were at the end of life, 67% ended up in a nursing home or hospital . Even for those who go to hospice, the option may be offered late, as many patients die within days (not months) of starting hospice.
Aggressive care for the dying is more than an issue of monetary cost in an already-strapped healthcare system. When studied in two separate populations of patients with metastatic cancer, aggressive care for the dying was associated with reduced quality of life at its end, and worse bereavement adjustment in caregivers [7,8]. End-of-life discussions have been shown to reduce both the incidence of aggressive intervention and the subsequent psychological stress amongst surviving family members.
In addition, good end-of-life care has been shown to benefit both quality and quantity of life in the terminally ill. The goals of hospice care are to alleviate suffering and promote the best quality of life for patients and families facing a prognosis of six months (not days) or less. Of those admitted to hospice, family members perceived a significant increase of emotional support and respect for their dying loved one. (96% compared to 68%) . Family members were more satisfied with the overall quality of care with hospice services, rating hospice services “excellent” 70% of the time compared to those admitted to the institution setting (less than 50% “excellent” ratings). According to a 2007 retrospective chart review of Medicare records, patients with CHF, lung cancer, and pancreatic cancer who received hospice care had an increased length of survival (29 days for hospice patients with) when compared with patients who did not .
Perhaps most importantly, we should consider what constitutes a “good death.” Zhang et al performed a prospective, longitudinal cohort study of 396 advanced cancer patients and their caregivers to try and assess what constitutes quality of life at the end of life. They found the factors that were associated with the highest quality of life were fewer hospitalizations, fewer ICU stays, meditation, and therapeutic alliance with their physicians .
Good end-of-life decisions require honest discussion of goals, but this can be difficult. Multiple studies have shown that physicians often avoid these conversations , and patients may be overly optimistic about their family members understanding of their wishes . Advanced care planning and better communication surrounding end-of-life has the potential to improve patient care. For example, Detering et. al. carried out a prospective randomized controlled study of 309 adults over the age of 80 looking at the effect of advance care planning support versus standard care . Of the 56 patients who died within the 6 month study period, those in the advance care planning support group were much more likely to have end of life wishes known (86% vs 30%). in addition, both patients and family of the intervention group had significantly less stress, anxiety, and depression than control group.
Most studies looking at end-of-life communication have been based in the outpatient or ICU setting. However, we as emergency providers must ask ourselves what role we should play in this process. End of life discussions in the ED, especially for the chronically ill, can be challenging, but like it or not, they occur. It can be frustrating to talk to a patient with an advanced cancer diagnosis who seems unaware of her prognosis. How does one get the medical story, communicate with the primary care provider and oncologist, and then talk with the patient and family, all while adhering to the demanding ED timetable? In the busy ED, it is often easier to avoid such problems than to address them. However, an abundance of research has demonstrated that an honest and compassionate conversation about goals of care, even if brief, may be the most beneficial thing that we as an emergency physician can provide to these patients.
According to the Choosing Wisely campaign "Top Ten" for Emergency Medicine, we should not delay palliative or hospice services for patients who are likely to benefit:
In many cases, for patients whose goal is to be comfortable and avoid hospitalization, hospice care at home can be arranged directly from the emergency department. For patients who require more care than they can receive at home, an admission may be warranted, but starting a conversation about goals in the ED can smooth the transition. According to 2012 statistics from the Center to Advance Palliative Care, almost 2/3 of hospitals in the US with more than 50 beds have inpatient palliative care services, and there were over 3500 hospice agencies throughout the US [https://www.capc.org] . Emergency physicians should be aware of the resources available in their area. For our own hospital, BJH in St. Louis, information about hospice and home care services can be found at the BJC Hospice website.
Take home points: While many people express a desire to die at home, the majority of Americans die in acute or extended care facilities. The US has a robust system for helping people access aggressive medical care in emergency situations. This is a tremendous asset for many Americans, but for those dying of serious illness, it may not be the best pathway. When aggressive care is seen as the default option for dying patients, it may confer significant harm in the form of decreased quality of life and increased long term psychological stress on caregivers. Despite the pressures of working in the ED, emergency physicians are well-positioned to help patients, families, and our colleagues in other areas of healthcare begin conversations addressing end-of-life care.
Submitted by Melissa Kroll (@misskrll) PGY-2
Edited by Maia Dorsett (@maiadorsett)
Faculty reviewed by Maria Dans (Palliative Care) and Douglas Char and Ryan Schneider (Emergency Medicine)
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Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T., ... & Prigerson, H. G. (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. Jama, 300(14), 1665-1673.
Wright, A. A., Keating, N. L., Balboni, T. A., Matulonis, U. A., Block, S. D., & Prigerson, H. G. (2010). Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health. Journal of Clinical Oncology, JCO-2009.
 Connor, S. R., Pyenson, B., Fitch, K., Spence, C., & Iwasaki, K. (2007). Comparing hospice and nonhospice patient survival among patients who die within a three-year window. Journal of pain and symptom management, 33(3), 238-246.
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 Detering KM, Hancock AD, Reade MC, et al. The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. BMJ. 2010;340:c1345.
The Hippocratic Medicine series is modeled after the Do No Harm project pioneered at the University of Colorado, the aim of this (hopefully) monthly installment will be on the avoidance of avoidable care i.e. raising awareness for how medical overuse has the potential to do patient harm. Because every test or intervention we do has the potential for not just benefit but also harm, we should seek that our patients do better because of the care we provide instead of despite it. The WUSM Hippocratic Medicine Series is supported by a grant provided by the Foundation for Barnes Jewish Hospital.