Improving Family End-of-Life Discussions Part 1

(Kevin Bradley is taking a sabbatical from editorship of The Good Death Society blog. Jay Niver, FEN magazine editor, will serve as acting blog editor.

Following is the first of a three-part series by Dr. David Gruenewald, medical director of the Palliative Care and Hospice Service at VA Puget Sound Health Care System and associate director of the Palliative Medicine Fellowship and associate professor of medicine in the Division of Gerontology and Geriatric Medicine at the University of Washington. – Jay Niver, Editor)

Introduction

Timely, well-conducted conversations about goals of care in serious illness are associated with improved outcomes, including care aligned with the ill person’s values, less unwanted (and often expensive) care, improved satisfaction with care, and fewer mental health consequences for patients and families.

Ideally, conversations about care goals in serious illness occur in the outpatient setting prior to the onset of a crisis. However, in many cases, these conversations do not occur until a crisis develops, sometimes when patients are within hours or days of death and unable to participate in medical decision-making. Even when these discussions take place early in serious illnesses, follow-up is needed at major turning points, e.g., when cure is no longer possible or when death is near.

Surrogate Decision-Making

Patients should be included in meetings about care goals and planning whenever possible. However, when patients are critically ill or otherwise unable to participate in medical decision-making, healthcare teams look to family members and other surrogates to be the patient’s voice in care planning. Different jurisdictions have differing hierarchies for determining the priority for surrogate decision-making, usually prioritizing guardians and/or durable powers of attorney for healthcare followed by family relatives in a defined order.

When seriously ill patients wish to designate a surrogate other than their next-of-kin, it is imperative to designate a durable power of attorney for healthcare. Failure to do so can be catastrophic when the desired surrogate is not prioritized in the decision-making hierarchy recognized in the patient’s jurisdiction. If a patient becomes incapacitated and has designated a healthcare surrogate, the patient’s choice must be honored by the care team. Importantly, some patients retain the ability to choose a surrogate for more complex decisions even when incapacitated, and these preferences should be elicited and honored whenever possible.

The role of the surrogate medical decision-maker is to speak on behalf of the patient’s values, and for the care they believe the patient would want under the circumstances. Surrogates must use “substituted judgment,” i.e., state what they believe patients would choose if able to speak for themselves. In the absence of information about the patient’s preferences, surrogates must use a “best interest” standard to guide care.

Healthcare practitioners must support surrogates and patients through a shared decision-making process. This process requires the practitioner to assess the patient and/or surrogate’s preferences and capacity for medical decision-making across a continuum, from highly autonomous to partnership to physician-driven decision-making. In all cases, the goal of shared decision-making is to make decisions consistent with the patient’s wishes.

Key Functions of Family Meetings Near End of Life

Some clinicians view family meetings mainly as a venue to convey information to family members. While important, family meetings serve other essential functions.

• First, care teams must create space for families to express emotional distress through empathic listening (to be discussed in Part 2 of this blog post). Strong emotions interfere with cognitive processing. Until families feel their emotions are heard and understood by the care team, they may be unable to process medical information and participate in decision-making.
• Second, care teams must develop rapport with families, offer support, and explore families’ hopes and concerns.
• Third, healthcare workers must understand as much as possible about patients’ values and beliefs to ensure they receive care consistent with what matters most.
• Finally, clinicians must discern whether the patient and family’s understanding of the medical situation and prognosis is aligned with the care team’s understanding. When there are substantial differences, clinicians must communicate compassionately yet clearly to develop a shared understanding. In complex cases, ensuring that the healthcare team conveys a unified message to the patient and family is essential to minimize misunderstandings and conflicts.

What Makes Family Meetings Difficult?

A variety of barriers may delay or prevent timely, effective conversations about serious illness. Patients and families may have unrealistic expectations of cure or return to their previous level of functioning. They may be ill-prepared to accept an unfavorable prognosis, or there may be cultural prohibitions against explicitly discussing death.

Physicians and other healthcare professionals may be uncomfortable sharing serious news; lack necessary communications skills; view death as an enemy to be defeated; or be unaware of cultural issues affecting communication and medical decision-making.

Healthcare system barriers include inadequate reimbursement for advance care planning and goals of care conversations; insufficient time for these conversations; and care fragmentation among multiple specialists and care venues.

When serious illness conversations occur in outpatient settings, it may be possible to improve goals of care conversations by preparing clinicians and patients for these discussions in advance. In a randomized trial of seriously ill outpatients immediately before an outpatient visit, patients received tips for communicating about their care goals based on their responses to a goals-of-care readiness survey, while clinicians received a patient-specific tip sheet of strategies to discuss goals of care. This approach increased both patient- and clinician-reported goals-of-care discussions, and some patients experienced an increase in goal-concordant care. Thus, by providing personalized, actionable information at the point of care, communication about goals of care may be more likely to happen before a crisis develops.

When patients are critically ill in an intensive care unit (ICU), families often struggle to integrate hope and realism and may be conflicted about receiving prognostic information. In this turbulent environment, clinicians must optimize the family’s ability to hear, absorb, integrate, and use medical information including prognosis and expected outcomes.

For ICU patients, discordance about prognosis between surrogate decision-makers and physicians is extremely common. Many family members are overly optimistic about prognosis, which may result in them choosing burdensome treatments with low likelihood of benefit. When prognostic discordance between families and clinicians is apparent, clinicians must prioritize careful listening to identify the reasons for discordance and offer psychological and other support for person-centered decision-making.

Audio recordings of family meetings in ICUs show that discussions of patient values and preferences occur in fewer than half of family meetings and are often limited to discussion of patient attitudes toward dying or prolonged life support. Additionally, potential outcomes of intensive care, such as physical and cognitive impairment, are rarely discussed.

In the ICU setting where life-limiting scenarios are no longer future and hypothetical, the optimal communication approach may be to focus on developing a shared understanding of the decision to be made, not only on values and care goals.

Patients and surrogates often make medical decisions based on what treatments are likely to do for (or to) them, in terms of outcomes meaningful to them. They need to know not only the likelihood of survival, but also the likely prognosis for functional and cognitive disability, a return to independent living, the need for ongoing care, and persistently distressing symptoms.

It is helpful for clinicians to frame decisions about potentially life-sustaining treatments in terms of best-case / worst-case, and most-likely medical scenarios. This approach, paired with a discussion of relevant outcomes, may enable surrogates to use information about relevant outcomes to choose treatments that best fit their understanding of patient preferences and values.

DISCLAIMER

This work was supported in part by the Department of Veterans Affairs. The views expressed herein are those of the author and do not necessarily reflect the views of the Department of Veterans Affairs or the U.S. Government.