Nancy Berlinger

The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life: Revised and Expanded Second Edition

Preface to the Second Edition Contributors How These Guidelines Are Organized Introduction The Function and Sources of These Ethics Guidelines Legal and Ethical Consensus Informing These Guidelines: Rights, Protections, and Key Philosophical Distinctions Part One: Framework and Context Section 1: Ethics Goals for Good Care When Patients Face Decisions about Life-Sustaining Treatment or Approach the End of Life Section 2: Ethics Education Competencies for Health Care Professionals Caring for Patients Facing Decisions about Life-Sustaining Treatment and Patients Approaching the End of Life Section 3: Organizational Systems Supporting Good Care and Ethical Practice Section 4: Social, Economic, and Legal Contexts A. Social Context B. Economic Context C. State and Federal Context Part Two: Guidelines on Care Planning and Decision-Making Section 1: Guidelines for Advance Care Planning and Advance Directives: Using Patient Preferences to Establish Goals of Care and Develop the Care Plan Section 2: Guidelines for the Decision-Making Process A. Evaluating the Patient B. Determining Decision-Making Capacity C. Identifying the Key Decision-Maker D. Surrogate Decision-Making E. Making the Decision at Hand F. Documenting the Decision G. Implementing the Decision H. Changing Treatment Decisions I. Conflict and Challenges Related to Treatment Decision-Making Section 3: Guidelines Concerning Neonates, Infants, Children, and Adolescents A. General Guidelines for Pediatric Decision-Making Concerning the Use of Life-Sustaining Treatments B. Guidelines for Decision-Making and Care Involving Nonviable Neonates and Neonates at the Threshold of Viability C. Guidelines for Decision-Making about Life-Sustaining Treatment for Viable Neonates D. Guidelines for Decision-Making about Life-Sustaining Treatment for Young Children E. Guidelines for Decision-Making with Older Children F. Guidelines for Decision-Making with Adolescents G. Guidelines for Decision-Making by Mature Minors and Emancipated Minors Section 4: Guidelines for Care Transitions A. General Guidelines for Hand-Offs between Professionals and Transfers across Care Settings B. Guidelines on Care Transitions for Nursing Home Residents C. Guidelines on Portable Medical Orders D. Guidelines on Discharge Planning and Collaboration with Nursing Homes, Home Care, Hospice, and Outpatient Care E. Guidelines on Care Transitions for Patients Who Will Die in the Hospital Section 5: Guidelines for the Determination of Death A. Procedural Guidelines for Making a Determination of Death and for Making a Declaration of Death B. The Determination of Death: Continuing Ethical Debates Section 6: Guidelines for Institutional Policy A. Guidelines on Ethics Services in Institutions Providing Care for Patients Facing Decisions about Life-Sustaining Treatment or Approaching the End of Life B. Guidelines on Palliative Care Services C. Guidelines Supporting Advance Care Planning D. Guidelines Supporting Portable Medical Orders E. Guidelines Supporting Care Transitions F. Guidelines on the Role of Institutional Legal Counsel and Risk Management in Supporting Good Care G. Guidelines on Conflict Resolution Part Three: Communication Supporting Decision-Making and Care Section 1: Communication with Patients, Surrogates, and Loved Ones A. Conducting a Family Conference When a Patients Condition Is Deteriorating B. Supporting the Decision-Maker When Loved Ones Disagree C. Discussing Values Concerning Nutrition and Hydration D. Using Electronic and Telephone Communications with Seriously Ill Patients or with Surrogates and Loved Ones Section 2: Communication and Collaboration with Patients with Disabilities A. Life-Sustaining Treatments and Accommodation of Stable or Progressive Disabilities B. Communication When a Patients Disability Affects Speech C. Communication When a Patients Disability Affects Cognition D. Communication and Collaboration with Recently Disabled Patients Concerning Life-Sustaining Treatments Section 3: Psychological Dimensions of Decision-Making about Life-Sustaining Treatment and Care Near the End of Life A. Coping as a Factor in Treatment Decision-Making B. Hope as a Factor in Treatment Decision-Making C. Ambivalence, Denial, and Grief as Factors in Treatment Decision-Making D. Existential Suffering as a Factor in Treatment Decision-Making E. Spirituality and Religion as Factors in Treatment Decision-Making F. Religious Objections during Treatment Decision-Making G. Moral Distress as a Factor in Treatment Decision-Making H. Integrating Bereavement Care for Loved Ones and Professionals into Care Near the End of Life Section 4: Decision-Making Concerning Specific Treatments and Technologies A. Forgoing Life-Sustaining Treatments: Ethical and Practical Considerations for Clinicians B. Brain Injuries and Neurological States C. Mechanical Ventilation D. Cardiopulmonary Resuscitation and Cardiac Treatments E. Dialysis F. Nutrition and Hydration G. Chemotherapy and Other Cancer Treatments H. Routine Medications, Antibiotics, and Invasive Procedures I. Blood Transfusion and Blood Products J. Palliative Sedation Section 5: Institutional Discussion Guide on Resource Allocation and the Cost of Care A. Developing a Practice of Discussing Resource Allocation and the Cost of Care: Six Strategies B. Discussing Uncompensated Care for Patients without Insurance Glossary Cited Legal Authorities Selected Bibliography Index

Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association

The mission of the American Heart Association/American Stroke Association includes increasing access to high-quality, evidence-based care that improves patient outcomes such as health-related quality of life and is consistent with the patients’ values, preferences, and goals. Awareness of and access to palliative care interventions align with the American Heart Association/American Stroke Association mission. The purposes of this policy statement are to provide background on the importance of palliative care as it pertains to patients with advanced cardiovascular disease and stroke and their families and to make recommendations for policy decisions. Palliative care, defined as patient- and family-centered care that optimizes health-related quality of life by anticipating, preventing, and treating suffering, should be integrated into the care of all patients with advanced cardiovascular disease and stroke early in the disease trajectory. Palliative care focuses on communication, shared decision making about treatment options, advance care planning, and attention to physical, emotional, spiritual, and psychological distress with inclusion of the patient’s family and care system. Our policy recommendations address the following: reimbursement for comprehensive delivery of palliative care services for patients with advanced cardiovascular disease and stroke; strong payer-provider relationships that involve data sharing to identify patients in need of palliative care, identification of better care and payment models, and establishment of quality standards and outcome measurements; healthcare system policies for the provision of comprehensive palliative care services during hospitalization, including goals of care, treatment decisions, needs of family caregivers, and transition to other care settings; and health professional education in palliative care as part of licensure requirements.

The Illness Experience of Undocumented Immigrants With End-stage Renal Disease

Importance The exclusion of undocumented immigrants from Medicare coverage for hemodialysis based on a diagnosis of end-stage renal disease (ESRD) requires physicians in some states to manage chronic illness in this population using emergent-only hemodialysis. Emergent-only dialysis is expensive and burdensome for patients. Objective To understand the illness experience of undocumented immigrants with ESRD who lack access to scheduled hemodialysis. Design, Setting, and Participants A qualitative, semistructured, interview study was conducted in a Colorado safety-net hospital from July 1 to December 31, 2015, with 20 undocumented immigrants (hereinafter referred to as undocumented patients) with ESRD and no access to scheduled hemodialysis. Demographic information was collected from the participants’ medical records. The interviews were audiorecorded, translated, and then transcribed verbatim. The interviews were analyzed using inductive qualitative theme analysis by 4 research team members from March 1 to June 30, 2016. Main Outcomes and Measures Themes and subthemes from semistructured interviews. Results All 20 undocumented patients included in the study (10 men and 10 women; mean [SD] age, 51.4 [13.8] years) had been in the United States for at least 5 years preceding their diagnosis with ESRD. They described the following 4 main themes: (1) a distressing symptom burden and unpredictable access to emergent-only hemodialysis, (2) death anxiety associated with weekly episodes of life-threatening illness, (3) family and social consequences of accommodating emergent-only hemodialysis, and (4) perceptions of the health care system. Conclusions and Relevance Undocumented patients with ESRD experience debilitating, potentially life-threatening physical symptoms and psychosocial distress resulting from emergent-only hemodialysis. States excluding undocumented immigrants with ESRD from scheduled dialysis should reconsider their policies.

Facing Persistent Challenges in Pediatric Decision-Making: New Hastings Center Guidelines

Approximately 50 000 deaths occur among pediatric patients (neonates, infants, children, and adolescents) in the United States each year. These deaths are a small fraction of the 2.5 million annual deaths in the United States, but they have an immense impact on the families and clinicians who care for these patients. Persistent challenges in providing care to seriously ill pediatric patients continue, despite evidence-based approaches to treatment decision-making, the emergence of pediatric palliative care as an interdisciplinary subspecialty, and the growing number of children’s hospitals. Clinicians report significant lack of knowledge about ethical and legal issues that have been addressed and seemingly resolved by consensus groups and major pediatric organizations.1 They voice concerns of conscience about providing end-of-life care. Most agree that we sometimes save the life of a child without sufficient regard for the profound consequences of our interventions on a child’s subsequent quality of life. These knowledge gaps and professional concerns may lead to tension within teams and confusion about how to provide good care. This article is written to introduce pediatric clinicians to several relevant aspects of a set of ethics guidelines recently published by the Hastings Center, an independent, nonprofit bioethics research institution that since 1969 has been a major source of interdisciplinary research on ethical challenges in clinical medicine.2 The new guidelines update the first edition (1987) and include a major new section on pediatric decision-making, with other material relevant to the care of children, building on research and practice insights from pediatric subspecialties, pediatric palliative care, and interdisciplinary bioethics. We will address key challenges and their implications for all professionals who aim to understand, respect, and provide good care to children and families, throughout treatment and at the end of life. Serving as a surrogate decision-maker for any patient can be psychologically difficult. … Address correspondence to Nancy Berlinger, PhD, Research Department, The Hastings Center, 21 Malcolm Gordon Road, Garrison, NY 10524. E-mail: berlingern{at}thehastingscenter.org

The Ethics of Advocacy for Undocumented Patients

Approximately 11.2 million undocumented immigrants have settled in the United States. Providing health care to these residents is an everyday concern for the clinicians and health care organizations who serve them. Uncertain how to proceed in the face of severe financial constraints, clinicians may improvise remedies–a strategy that allows our society to avoid confronting the clinical and organizational implications of public policy gaps. There is no simple solution-no quick fix-that will work across organizations (in particular, hospitals with emergency departments) in states with different concentrations of undocumented immigrants, varying public and private resources for safety-net health care, and differing approaches to law and policy concerning the rights of immigrants. However, every hospital can help its clinicians by addressing access to health care for undocumented immigrants as an ethical issue. We offer some recommendations for doing this in a structured, fair, and transparent way. We also describe the problems that may result when clinicians are forced to grapple with this issue on their own.

Cancer chronicity: new research and policy challenges.

Cancer centers are organized to serve the needs of patients who can benefit from medical and surgical interventions aimed at curing cancer and preventing recurrence. However, comprehensive cancer care must also encompass the needs of patients with incurable but treatable cancers, some of which can potentially be managed as chronic diseases through outpatient care and self-management. Treating cancer as a chronic disease, and helping patients to live with cancer as a chronic disease, calls for health care that complements services that exist for patients with curable disease, for patients who have completed treatment, and for patients whose disease no longer responds to treatment. Research should focus on the chronic cancer patients to understand how cancer treatment can better serve this growing patient population.

Cueing “The Conversation”

In “Avoiding a ‘Death Panel Redux,” Nicole M. Piemonte describes how she tried to fire palliative care after first refusing to let it—and any mention of death, from any source—into her dying mothers room. One way to read this is as a familiar human story about the profound difficulty of facing death, a story that, too often, is reduced to the word “denial.” But Piemonte and Hermer suggest that there is another way to read this story, in terms of the structure that was absent from the earliest conversations and relationship-building among this patient, her daughter, and the doctors. If advance care planning had been part of the structure all along, if everyone—oncologists, patients, loved ones—talked about prognosis, preferences, benefits, burdens, and goals from the time a life-threatening disease was diagnosed, as a normal part of good care, would Piemonte have understood her own role as caregiver and advocate differently? If, early on, her fifty-year-old mother had been asked, “what do you want to do with the rest of your life?” and had been assured that this question mattered and encouraged to talk about her hopes (such as attending her daughters wedding), might her treatment and care have been organized in a different way?

Pandemic Flu Planning in the Community: What Can Clinical Ethicists Bring to the Public Health Table?

It is still remarkably difficult for public health officials charged with developing and implementing pandemic influenza preparedness plans at the community level—where care is delivered— to obtain clear, concrete, and consistent guidance on how to construct plans that are both ethical and actionable. As of mid-2007, most of the federal and state pandemic plans filed with the Centers for Disease Control and Prevention, describing how public health officials will coordinate public agencies and private entities in the event of an outbreak, failed to include ethical guidance for first responders responsible for providing essential services and making fair decisions during a public health emergency. A survey of these plans, published in the American Journal of Public Health in June 2007, noted that planners were following a federal template that did not require them to be specific about how their plans met the test of public health ethics during a disaster: preparing first responders to act fairly when forced to think differently about their duties and priorities within their communities. Some planners, in state departments of public health, in the nation’s 3066 counties, and in private entities such as state hospital associations, are becoming aware that there is a moral and practical gap in the plans they are charged with carrying out. If these plans are not candid about the ethical challenges first responders will face, and if these plans do not provide clear rules and tools for first responders to use once a state of emergency is declared, the burden on these frontline workers will be increased, and poor, crisis-driven decisionmaking may result. But where can planners—specifically, public health officers responsible for coordinating health and safety services and public health educators responsible for providing community members with information about how to use these services—turn to ensure that their plans are both ethically sound and will work in practice? How can they avoid the tendency to lean on abstractions (‘‘rationing,’’ ‘‘justice’’), or to shift hard yet foreseeable decisions onto the shoulders of frontline workers? How can they learn how to anticipate and discuss foreseeable ethical challenges and to prepare first responders to make ethical decisions when, inevitably, unanticipated dilemmas arise? And how, when discussing pandemic planning scenarios in public forums, can they acknowledge and overcome the mistrust created by what has been described as a ‘‘post-Katrina consciousness’’ of health and healthcare disparities among Americans? The short answer would seem to be ‘‘bioethicists.’’ Recruiting the chair of

Promoting Patient Safety: Implications for Pastoral Care

This article provides an overview of current issues in patient safety, the subject of recently-implemented JCAHO standards, with attention to issues of special interest to pastoral care professionals and Clinical Pastoral Education (CPE) students. Case studies of patient safety initiatives in two health care systems are used to illustrate the relationship between institutional core values and the just treatment of injured patients and their families, and to suggest opportunities for chaplains to contribute to patient safety efforts in their institutions. A list of suggested readings and online resources is included.

Reflections on Moral Distress and Moral Success

This final chapter captures the voices of several leaders in health care and bioethics who responded to one or both of the following questions: 1. What do you think is the most significant or important reason that healthcare professionals might feel trapped and unable to do what they think is right (and hence experience moral distress)? 2. What does moral success look like to you? Can you give an example of moral success from your perspective with regard to healthcare?