Susan M. Parks

The State of Advance Care Planning: One Decade After SUPPORT:

The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) was a landmark study regarding end-of-life decision making and advance care planning. Phase I of the study looked at the state of end of life in various hospitals, and phase II implemented a nurse-facilitated intervention designed to improve advance care planning, patient-physician communication, and the dying process. The observational phase found poor quality of care at the end of life and the intervention failed to improve the targeted outcomes. The negative findings brought public attention to the need to improve care for the dying and spawned a wealth of additional research on decision-making at the end of life. In the decade since SUPPORT, researchers have defined the attributes of a “good death,” addressed the role of advance directives in advance care planning, and studied the use of surrogate decision-making at the end of life. This rekindled the discussion on advance care planning and challenged health care providers to design more flexible approaches to end of life care.

Multidisciplinary Family Meetings in the ICU Facilitate End-of-Life Decision Making

Objective: The aim of this study was to assess the feasibility of establishing a multi-disciplinary family meeting (MDFM) program and the impact of such a program on the end-of-life decision making in the setting of an ICU. Methods: During the study period MDFMs were scheduled for patients requiring mechanical ventilation for 5 or more days. The meeting followed a structured format. The pertinent details of the meeting as well as the treatment goals were recorded. Results: Twenty-nine patients were enrolled in this study. Thirty-five MDFM’s were held on 24 patients. A meeting could not be arranged for four patients. All meetings addressed patient’s diagnosis, prognosis and goals of care. Fifteen (52%) patients (9 of whom had metastatic malignancy) had life support withdrawal and died a mean of 4.8 + 4.2 days after the first family meeting. In the remaining 9 patients (3 with localized cancer and 6 with non-cancer diagnoses), the plan following the family meeting was to continue supportive care; all of these patients survived to hospital discharge. Conclusions: Proactive MDFM’s improve communication and understanding between patients’ family and the treating team and facilitates end-of-life decision making.

Family Discord and Proxy Decision Makers' End-of-Life Treatment Decisions

BACKGROUND Because many Americans are decisionally incapacitated at the end of life, the last treatment decisions are often made by family proxies. Family discord concerning end-of-life (EOL) care may not only exacerbate a family crisis but also influence treatment decisions. We tested the extent to which family discord would be associated with preferences for types of end-of-life care, predicting that greater discord would be associated with weaker preferences for palliative care and stronger preferences for life-prolonging care. SETTING/SUBJECTS Sixty-eight proxy decision makers for elderly relatives were interviewed in their homes over the telephone. MEASUREMENTS The 35-minute telephone interview assessed preferences for four life-prolonging treatments and for palliative care and included a family discord measure, an EOL values scale, and questions about sociodemographic characteristics. RESULTS Repeated-measures analyses of covariance and regression analyses showed that greater family discord was associated with stronger preferences for life-prolonging treatments and weaker preferences for palliative care, independently of EOL values and sociodemographic characteristics. CONCLUSIONS In counseling patients with life-limiting illnesses and their families, clinicians should explore possible family discord surroundings EOL care. Counseling protocols should be developed and clinicians should be trained in counseling to minimize family conflict.

Family Factors in End-of-Life Decision-Making: Family Conflict and Proxy Relationship

BACKGROUND Few studies have examined proxy decision-making regarding end-of-life treatment decisions. Proxy accuracy is defined as whether proxy treatment choices are consistent with the expressed wishes of their index elder. The purpose of this study was to examine proxy accuracy in relation to two family factors that may influence proxy accuracy: perceived family conflict and type of elder-proxy relationship. METHODS Telephone interviews with 202 community-dwelling elders and their proxy decision makers were conducted including the Life-Support Preferences Questionnaire (LSPQ), and a measure of family conflict, and sociodemographic characteristics, including type of relationship. RESULTS Elder-proxy accuracy was associated with the type of elder-proxy relationship. Adult children demonstrated the lowest elder-proxy accuracy and spousal proxies the highest elder-proxy accuracy. Elder-proxy accuracy was associated with family conflict. Proxies reporting higher family conflict had lower elder-proxy accuracy. No interaction between family conflict and relationship type was revealed. CONCLUSIONS Spousal proxies were more accurate in their substituted judgment than adult children, and proxies who perceive higher degree of family conflict tended to be less accurate than those with lower family conflict. Health care providers should be aware of these family factors when discussing advance care planning.

Ask a Different Question, Get a Different Answer: Why Living Wills are Poor Guides to Care Preferences at the End of Life

CONTEXT Living wills have a poor record of directing care at the end of life, as a copious literature attests. Some speculation centers on the questionable correspondence between the scenario described in living wills versus the real-life circumstances that typically arise at the end of life. OBJECTIVE To assess the strength of association between responses to a standard living will question and preferences for treatments in six end-of-life scenarios. DESIGN Cross-sectional. SETTING Telephone interviews. PARTICIPANTS Two hundred two community-dwelling men and women 70 years of age or older in the greater Philadelphia area. MAIN OUTCOME MEASURES Strength of preferences for four life-sustaining treatments in each of six poor-health scenarios. RESULTS Associations between responses to the standard living will question and preferences for treatment (means across the four) in six specific scenarios were statistically significant but modest in size, accounting for 23% of variance at most. The association for the worse-case scenario (severe stroke with coma) was significantly stronger than for any other association. CONCLUSIONS The modest correspondence between living will responses and wishes for life-sustaining treatment in specific scenarios helps to elucidate the living wills poor performance. Presentation of more realistic end-of-life scenarios should improve the living wills ability to guide care, as well as preparing patients and families better for the end of life.

What Is a Geriatrician? American Geriatrics Society and Association of Directors of Geriatric Academic Programs End-of-Training Entrustable Professional Activities for Geriatric Medicine

Entrustable professional activities (EPAs) describe the core work that constitutes a disciplines specific expertise and provide the framework for faculty to perform meaningful assessment of geriatric fellows. This article describes the collaborative process of developing the end‐of‐training American Geriatrics Society (AGS) and Association of Directors of Geriatric Academic Programs (ADGAP) EPAs for Geriatric Medicine (AGS/ADGAP EPAs). The geriatrics EPAs describes a geriatricians fundamental expertise and how geriatricians differ from general internists and family practitioners who care for older adults.

End of Life Decision-Making for Cancer Patients

This article reviews research on end-of-life (EOL) decision-making in general and published guidelines on communicating with patients about EOL treatment options. The literature on EOL decision-making, most of which concerns advance care planning decisions, has identified several factors that influence treatment choices including race, religiosity, current health, and family conflict. This literature also documents widespread lack of understanding about dying and palliative care and fears of abandonment by health care providers. This article reviews guidelines for communicating with patients, stresses the role of prognostication in good decision-making, and provides numerous suggestions for initiating and structuring conversations with patients and families about EOL care.

American Geriatrics Society/Association of Directors of Geriatric Academic Programs curricular milestones for graduating geriatric fellows.

This article describes the curricular milestones for geriatric fellows and the process used to develop them. The curricular milestones were developed to determine what every graduating geriatric fellow should be able to demonstrate to ensure that they will be able to practice effectively and safely in all care settings and with different older adult populations. Three major domains were identified: Caring for the Elderly Patient, Systems‐Based Care for Elder Patients, and Geriatric Syndromes. Six hundred thirty‐five geriatricians each reviewed and commented on one domain. These geriatricians represented important stakeholder groups: geriatric fellowship program directors; Association of Directors of Geriatric Academic Programs (ADGAP) members, who are primarily geriatric program and fellowship directors; the American Geriatrics Society (AGS) and ADGAP Education Committee; the AGS Teachers Section; Geriatric Academic Career Award awardees; and through the American Board of Internal Medicine and the American Board of Family Medicine, board‐certified geriatricians who spend more than 50% of their time in clinical practice. The AGS and ADGAP boards approved the final set of 76 Geriatric Curricular Milestones, which were posted on the Portal of Geriatric Online Education in December 2012. These curricular milestones are intended to assist geriatric fellowship directors as they develop curricula and assessments to inform program director reporting to the Accreditation Council for Graduate Medical Education in the Next Accreditation System, which begins in July 2014.

The Reluctance to Burden Others as a Value in End-of-life Decision Making: A Source of Inaccuracy in Substituted Judgment

Most patients are decisionally incapacitated at the end of life, leaving final treatment decisions to proxies, whose substituted judgment is often inaccurate. We investigated the reluctance to burden others (RBO), a commonly cited patient value, as a possible source of proxy inaccuracy. In a sample of 202 elders and their proxies, elders responded to three burden-related questions and the Life-prolonging Treatment Preferences Questionnaire. Proxies used substituted judgment to respond to the same questions. Although RBO predicted treatment preferences for both elders and proxies, elders rated RBO significantly more important than did proxies. In addition, larger elder–proxy differences in RBO were associated with more inaccurate substituted judgment.

Intracerebral hemorrhage for the palliative care provider: what you need to know.

Intracerebral hemorrhage (ICH) makes up 10%-30% of all strokes. Palliative care providers are often asked to get involved with ICH cases to aid with development of short-term and long-term goals. Prognosis can be calculated using the ICH score (based on Glasgow Coma Score score, ICH volume, presence of intraventricular hemorrhage, age, and location of origin) or the Essen score (based on age, NIH Stroke Scale [NIHSS], and level of consciousness). Do-not-resuscitate (DNR) status is important to discuss with families. Expert consensus states DNR is appropriate if the patient has two of the following: severe stroke, life-threatening brain damage, or significant comorbidities. The process of withdrawing ventilatory support can differ greatly from that of a medical intensive care unit (ICU) patient. Most ICH patients die within 24 hours following extubation. Symptoms of dyspnea and pain warrant use of opioids before and after terminal extubation. In addition, treating death rattle and postextubation stridor are important interventions. Family meetings are a vital intervention to help explain prognosis, establish a plan of care, and to get all family members on the same page. Family meetings can have a rapid effect, with 66% of families opting for withdrawal of life support to decide within 24 hours of such a meeting.