Hippocratic medicine No. 3: A Prescription for Honesty, Conversation and Compassion
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?
Literature
Review:
"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 [3]. One in five Americans dies in or soon after a stay
in the ICU[4]. 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 [5]. 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[7].
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%)
[5]. 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 [9].
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 [10].
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 [6], and patients
may be overly optimistic about their family members understanding of their
wishes [2]. 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 [11]. 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)
References:
[1] Field, M. J., & Cassel, C.
K. (2010). Approaching death: improving care at the end of life. Palliative Care: Transforming the Care of
Serious Illness, 79.
[2] Halpern, S. D. (2012, August).
Shaping end-of-life care: behavioral economics and advance directives. In Seminars in respiratory and critical care
medicine (No. 33, pp. 393-400).
[3] Health, United States. 2010. With
special features on death and dying. National Center for Health Statistics
[on-line]. Available at www.cdc.gov/nchs/data/hus/hus10.pdf Accessed February
13, 2014.
[4] Angus, D. C., Barnato, A. E.,
Linde-Zwirble, W. T., Weissfeld, L. A., Watson, R. S., Rickert, T., ...
& Robert Wood Johnson Foundation ICU End-Of-Life Peer Group. (2004).
Use of intensive care at the end of life in the United States: An epidemiologic
study*. Critical care medicine, 32(3), 638-643.
[5]Teno JM, Clarridge BR, Casey V, et
al. Family perspectives on end-of-life care at the last place of care. JAMA.
2004;291:88–93.
[6] The Dartmouth Atlas of Health Care.
The Dartmouth Institute for Health Policy and Clinical Practice [on-line].
Available at http://www.dartmouthatlas.org/
Accessed February 13, 2014.
[7]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.
[8]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.
[9] 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.
[10] Zhang B, Nilsson ME, Prigerson HG.
Factors important to patients' quality of life at the end of life. Arch Intern
Med. 2012 Aug;172(15):1133-42.
[11] 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.