September/October 2016

Discussing a "Good Death" With Patients
By Emily A. Meier, PhD; Ellen Lee, MD; Lori P. Montross Thomas, PhD; and Dilip V. Jeste, MD
Today's Geriatric Medicine
Vol. 9 No. 5 P. 8

Over the years, the concept of a "good death" has been considered by numerous disciplines including psychology, anthropology, sociology, and theology.1-8 Yet in recent times, death has become increasingly medicalized, with about 70% of individuals in the United States dying in hospitals, nursing homes, or long term care facilities, suggesting a need to consider what constitutes a "good death" in medical practice.9 The Institute of Medicine defines a good death as being "free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients' and families' wishes; and reasonably consistent with clinical, cultural, and ethical standards."10

The authors11 conducted a literature review examining qualitative and quantitative definitions of a "good death" and compared the perspectives of three groups of stakeholders: patients, family members, and health care providers. Thirty-six articles published between 1996 and 2015 met inclusion criteria. The sample sizes ranged from three to 2,548, and included participants ranging in age from 14 to 93, with a majority being over the age of 60. The studies had been conducted in the United States, United Kingdom, Canada, Iran, Japan, Netherlands, Thailand, and Turkey.

Our review suggested 11 core themes regarding the elements of a "good death." Across the stakeholders, the three most frequent themes were preferences for the dying process (94%), pain-free status (81%), and emotional well-being (64%). Other themes included family, dignity, life completion, religiosity/spirituality, treatment preferences, quality of life, relationship with the health care provider, and other. Figure 1 shows the frequency of each of these themes,11 by stakeholder group, and illustrates both similarities and differences in the concept of a "good death," depending on whether patients, family members, or health care providers were sampled. Notably, 100% of patients noted the importance of their preferences for the dying process, highlighting the importance of end-of-life conversations in medical practice.

Understanding Patient Preferences
Discussing the topic of death and patients' preferences for a "good death" can be difficult for several reasons, particularly when limited time is available. Tulsky and colleagues found that when discussing end-of-life care with patients, the conversations lasted, on average, less than six minutes, with physicians (vs patients) talking during four of those six minutes.12 Understandably, many physicians feel uncomfortable asking about patients' end-of-life choices, and may not feel well equipped to handle the questions that arise. Yet having the conversations is likely to yield positive outcomes, particularly as the discussions may yield a treatment plan that is more directly aligned with patients' preferences for care.

When to Start the Conversation
End-of-life conversations require considerable preparation in order to best counsel patients and families regarding various treatment options. Clinical practice guidelines developed by Clayton et al offer evidence-based recommendations from an expert advisory panel regarding structured end-of-life discussions.13

The timing and setting of such conversations are important, as patients may have difficulty processing information at the time of diagnosis, or become distressed if they do not personally initiate the conversation.14 (See Table 1.) Yet it is often challenging to decide when to start such conversations because prognostication for patients with multiple complex diseases may be unclear and there may not be a sentinel event to trigger an end-of-life conversation with the patient and the family.15

A collaborative approach, in which the provider organizes an appropriately timed family meeting to discuss the patient's progress and expectations, may be beneficial.15 Ideally, the conversations will be led by a senior member of the treatment team who can answer the patient's and family's questions.13 The optimal setting for these patient conversations and/or family meetings is a private, quiet place with plenty of time allowed for discussion and questions.13

Starting the Conversation
There are several aspects to consider regarding the conversation itself, with specific communication skills necessary to facilitate better engagement and rapport among the physician, the patient, and the family (See Table 1). For example, physicians should first assess the patient's understanding about his or her medical situation by asking questions such as, "What have you been told about your illness?" or "What is your understanding of your health situation and what is likely to happen?" Physicians can also identify the amount of information and level of detail the patient would prefer as well as the family's needs, because patients vary in their personal expectations and cultural beliefs: "What would you like to know about your illness at this time?"13

Throughout the conversation, a physician can continually assess the patient's level of understanding with simple questions such as, "Does this make sense to you?" or "Does that seem clear?" Physicians should admit the uncertainty of prognostic predictions while reassuring patients and providing hope with statements such as: "Our team will do our best to support you throughout this illness," "I cannot give you any specific treatment to make this illness go away, but there is a lot we can offer to help you cope with it," and, "We will do everything we can to ensure you are as comfortable as possible."13

Before End-of-Life Care
Before end-of-life care conversations become imminent, physicians can begin to elicit patient preferences with regard to general advance care planning, particularly because this type of planning can be done when patients are not acutely in crisis or incapacitated. Three different approaches to learning about patient preferences in this area include the "Go Wish" cards, formalized Physician Orders for Life-Sustaining Treatment (POLST), and the Patient Dignity Question (PDQ).

Go Wish
In 2004 a coalition for end-of-life care, Coda Alliance,16 developed an advance care planning tool, Go Wish, to assist with end-of-life conversations among patients, family members, and health care providers. The Go Wish cards include 36 cards (in English and Spanish) with a single value or goal written on each, as well as one wild card to allow for open-ended options. Individuals are asked to sort the cards into three piles: very important, important, and not important. Discussions can then be focused around the top 10 very important values and goals near the end of life, as well as cards chosen as least important. The Go Wish cards contain items such as "not being short of breath," "free from anxiety," and "maintaining my dignity."

Additionally, the Go Wish cards allow for individuals to further discuss and personalize specific values or goals. A professional, trainee, or family member can deliver the Go Wish intervention with minimal instruction. Case examples of using the Go Wish cards demonstrate enhanced communication and discussion of important conversations among family members as well as health care providers, helpfulness in resolving unfinished business, and assistance with surrogate end-of-life decision-making.17

POLST
Developed in Oregon in the 1990s, the POLST form was developed to improve consistency of medical treatment with a patient's wishes.18-20 The POLST lists specific interventions, allows for detailed preferences, and can be applied to any care setting.21,22 During these conversations it is best to use simple language to assess a patient's understanding of designating health care proxies or completing POLST forms (See Table 1). Hypothetical scenarios can help to clarify a patient's goals of care. Transcribing the patient's wishes to advance directives or POLST forms can provide transparency of a patient's wishes in all care settings.

Challenges with POLST's implementation include having incomplete or unsigned forms, not bringing the form to different care settings, providers being unaware of the legal protections for following the POLST in certain states, providers not reading the forms, or the providers not discussing decisions with patients with intact decision-making capability or available surrogates.23 Additionally, the POLST forms do not include several interventions such as calling an ambulance, transferring patients to the emergency department or hospital, and use of all of the treatments available to hospitalized patients.21 Despite these challenges, POLST forms have been shown to improve the coordination of end-of-life care with patients' stated wishes, compared with advance directives.21

Since January 1, 2016, critical end-of-life conversations and POLST/advance directive completion are reimbursed by Medicare, allowing providers to counsel patients and families and bill appropriately for their time.24 Two new CPT codes allow physicians and nonphysician practitioners to bill for advance care planning under Medicare Part B. These changes have been supported by palliative care groups as well as an Institute of Medicine report that highlighted the critical importance of advance care planning.25-27 However, this measure should be considered as merely a first step in improving end-of-life care.28

PDQ
One general question for assessing patients' needs and preferences is the PDQ.29 This question can be applied across various care settings by directly and compassionately asking patients, "What do I need to know about you as a person to provide the best care possible?" In a recent study where the PDQ was provided to 66 inpatients (85% of whom had end-stage cancer), the dialogue was found to last approximately 10 to 20 minutes and yielded a written summary that could then be placed in the medical chart, if desired. This allowed physicians to more fully understand any personal aspects the patients deemed important as part of their health care landscape. In fact, it was found that 96% of patients in the study gave permission to place the written summaries of their responses in the medical charts, and 90% of clinicians who read the responses stated they learned something new from the PDQ.

Summary
As individuals have varying definitions of a "good death," it is necessary to understand the personal preferences of each patient. Having end-of-life conversations can be challenging, but certain strategies and key phrases can improve the experience for the patient, the clinician, and the patient's family. Interventions such as Go Wish cards, POLST, and PDQ can guide and enrich advance care planning. With recent shifts in Medicare billing to reimburse for end-of-life discussions, these important conversations may now be feasible even for busy clinicians. Prioritizing advance care planning may ultimately allow more patients to experience a "good death." "Successful dying" should be an appropriate ending for successful aging and living.30 "Good death" should become a norm rather than a dream.

— Emily A. Meier, PhD, is an assistant professor in the department of psychiatry and a licensed psychologist specializing in end-of-life care at the University of California, San Diego Moores Cancer Center. Her clinical activities include providing both inpatient and outpatient services to cancer patients and those with advanced, life-limiting illness. Her research interests include dignity, successful dying, and training for psychologists in hospice and palliative care.

— Ellen Lee, MD, is an NIH-funded research fellow in geriatric mental health at the University of California, San Diego. Her research interests include palliative care in adults with psychiatric disorders and successful aging in people with serious mental illnesses.

— Lori P. Montross Thomas, PhD, is a licensed psychologist specializing in end-of-life care and a quantitative and qualitative (mixed-methods) researcher with interest in dignity, hospice care, multiculturalism, resilience, and wisdom. An assistant professor at the University of California, San Diego, she is funded by the American Cancer Society and the International Alzheimer's Association to assess positive outcomes of psychotherapy interventions for palliative care populations.

— Dilip V. Jeste, MD, is senior associate dean for healthy aging, Estelle and Edgar Levi Chair in aging, and a distinguished professor of psychiatry and neurosciences at the University of California, San Diego. With research focuses on serious mental illnesses and on healthy or successful aging, he is leading both community-based and clinical studies of adults across the lifespan, examining positive traits such as resilience, optimism, and wisdom, along with biomarkers of aging.

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