Linda L Emanuel

• MD PhD
• Northwestern University

Background: Patients consider the life review intervention, Dignity Therapy (DT), beneficial to themselves and their families. However, DT has inconsistent effects on symptoms and lacks evidence of effects on spiritual/existential outcomes. Objective: To compare usual outpatient palliative care and chaplain-led or nurse-led DT for effects on a qual...

Objectives: Despite the clinical use of dignity therapy (DT) to enhance end-of-life experiences and promote an increased sense of meaning and purpose, little is known about the cost in practice settings. The aim is to examine the costs of implementing DT, including transcriptions, editing of legacy document, and dignity-therapists' time for interv...

Aim: As a brief psychotherapy for individuals facing mortal threat, Dignity Therapy (DT) effects on spiritual outcomes are unknown, especially as an intervention to support cancer health equity for racial minority patients. Our study aim was to compare usual outpatient palliative care and such care along with nurse-led or chaplain-led DT groups for...

Background: Death anxiety is powerful, potentially contributes to suffering, and yet has to date not been extensively studied in the context of palliative care. Availability of a validated Death Anxiety and Distress Scale (DADDS) opens the opportunity to better assess and redress death anxiety in serious illness. Objective: We explored death anxiet...

Objectives Intervention fidelity is imperative to ensure confidence in study results and intervention replication in research and clinical settings. Like many brief protocol psychotherapies, Dignity Therapy lacks sufficient evidence of intervention fidelity. To overcome this gap, our study purpose was to examine intervention fidelity among therapis...

Palliative care supports referring colleagues in multiples ways. This support to referring colleagues is not often explored in the literature, yet the psychological concept that best describes it is the holding environment. The holding environment is the relational space palliative care offers referring clinicians for processing emotions and inform...

Objective Dignity therapy (DT) is a guided process conducted by a health professional for reviewing one's life to promote dignity through the illness process. Empathic communication has been shown to be important in clinical interactions but has yet to be examined in the DT interview session. The Empathic Communication Coding System (ECCS) is a val...

Palliative care has been shown to help patients live well with serious illness, but the specific psychological factors that contribute to this benefit remain investigational. Although support of patient coping has emerged as a likely factor, it is unclear how palliative care helps patients to cope with serious illness. The therapeutic relationship...

Context : Enhancing quality of life (QoL) is a goal of palliative care. Existential QoL is an important aspect of this. Objectives : This study sought to advance our understanding of existential QoL at the end of life through examining levels of Preparation and Completion, subscales of the QUAL-E, and their associated factors. Methods : We used d...

Background Dignity Therapy (DT) has been implemented over the past 20 years, but a detailed training protocol is not available to facilitate consistency of its implementation. Consistent training positively impacts intervention reproducibility. Objective The objective of this article is to describe a detailed method for DT therapist training. Met...

Context Religion and spirituality (r/s) are important resources in coping with cancer. However, there are aspects of r/s, such as religious and spiritual struggles, found to be associated with poorer outcomes. A new measure has been adapted from the Religious and Spiritual Struggles Scale (RSS) to assess r/s struggles: the RSS-14. This concise meas...

Background Nearly 500,000 older Americans die a cancer-related death annually. Best practices for seriously ill patients include palliative care that aids in promoting personal dignity. Dignity Therapy is an internationally recognized therapeutic intervention designed to enhance dignity for the seriously ill. Theoretically, Dignity Therapy provides...

Background: End-of-life discussions and documentation of preferences are especially important for older cancer patients who are at high risk of morbidity and mortality. Objective: To evaluate influence of demographic factors such as religiosity, education, income, race, and ethnicity on treatment preferences for end-of-life care. Methods: A retro...

A routine threat to palliative care research is participants not completing studies. The purpose of this analysis was to quantify attrition rates mid-way through a palliative care study on Dignity Therapy and describe the reasons cited for attrition. Enrolled in the study were a total of 365 outpatients with cancer who were receiving outpatient spe...

Background: The COVID-19 pandemic has created an environment in which existence is more fragile and existential fears or terror rises in people. Objective: Managing existential terror calls for being mature about mortality, something with which palliative care providers are familiar and in need of greater understanding. Methods: Using a case to i...

Co-morbid Diabetes and Cancer: Differences by Patient Characteristics and Symptom Outcomes More than 32 million Americans have diabetes and 1.8 million new cancer diagnoses are expected in 2020. Epidemiologically, a strong link exists between diabetes and several forms of cancer including pancreatic, colorectal, lung, and liver cancers. As a result...

Purpose: Lack of appreciation of cultural differences may compromise care for seriously ill minority patients, yet culturally appropriate models of palliative care (PC) are not currently available in the United States. Rural patients with life-limiting illness are at high risk of not receiving PC. Developing a PC model that considers the cultural p...

Dignity therapy (DT) provides, for patients with a serious illness, a guided sharable life review through a protocolized interview and the creation of a legacy document. Evidence is mounting in support of the use of DT for patients with a serious illness; however, it is unclear whether DT has effects on family members. The purpose of this article w...

BACKGROUND Our goal is to improve psychosocial and spiritual care outcomes for elderly patients with cancer by optimizing an intervention focused on dignity conservation tasks such as settling relationships, sharing words of love, and preparing a legacy document. These tasks are central needs for elderly patients with cancer. Dignity Therapy (DT) h...

Background: Our goal is to improve psychosocial and spiritual care outcomes for elderly patients with cancer by optimizing an intervention focused on dignity conservation tasks such as settling relationships, sharing words of love, and preparing a legacy document. These tasks are central needs for elderly patients with cancer. Dignity therapy (DT)...

Background: Little is known about how decision-making conversations occur during pediatric intensive care unit (PICU) family conferences (FCs). Objective: Describe the decision-making process and implementation of shared decision making (SDM) during PICU FCs. Design: Observational study. Setting/subjects: University-based tertiary care PICU,...

Background: Feasibility of dignity therapy (DT) is well established in palliative care. Evidence of its efficacy, however, has been inconsistent and may stem from DT's primary effects differing from the outcomes measured in previous studies. We proposed that DT effects were in the spiritual domain and created a new outcome measure, Dignity Impact...

We are interested in the kind of well-being that can occur as a person approaches death; we call it "existential maturity." We describe a conceptual model of this state that we felt was realized in an individual case, illustrating the state by describing the case. Our goal is to articulate a generalizable, working model of existential maturity in c...

While there is a robust literature describing family conferences (FCs) in adult intensive care units (ICUs), less information exists about FCs in pediatric ICUs (PICUs). We conducted a pilot study to describe the focus of discussion, communication patterns of health care team members (HTMs) and parents, and parents' perspectives about clinician com...

Objective: In the ICU, discussions between clinicians and surrogate decision makers are often accompanied by conflict about a patient's prognosis or care plan. Trust plays a role in limiting conflict, but little is known about the determinants of trust in the ICU. We sought to identify the dimensions of trust and clinician behaviors conducive to t...

Chaplaincy care is different for every patient; a growing challenge is to ensure that electronic health records function to support personalized care. While ICU health care teams have advanced clinical practice guidelines to identify and integrate relevant aspects of the patient’s story into whole person care, recommendations for documentation are...

This short report contributes to the expanding body of qualitative research literature about the cognitive processes of newly diagnosed cancer patients as they adjust to a diagnosis of cancer. The study is based on secondary qualitative analysis of audio records collected as part of a larger NIH study (RO1D: An Interdisciplinary Perspective: A Soci...

Dignity Therapy (DT), an intervention for people facing serious illness, focuses on dignity conservation tasks such as settling relationships, sharing words of love, and preparing a legacy document for loved ones. Research on DT began more than a decade ago and has been conducted in 7 countries, but a systematic review of DT research has not been p...

Background: Many of the world's population live in rural areas. However, access and dissemination of the advances taking place in the field of palliative care to patients living in rural areas have been limited. Methods: We searched 2 large databases of the medical literature and found 248 relevant articles; we also identified another 59 article...

Even with growing numbers of fellowship-trained palliative care providers, primary palliative care knowledge and skills are needed to meet the national demands for palliative care. The Education in Palliative and End-of-Life Care (EPEC) Program has been one model of training clinicians in primary palliative care skills. In our second 5 years of dev...

Chaplaincy is a relatively new discipline in medicine that provides for care of the human spirit in healthcare contexts for people of all worldviews. Studies indicate wide appreciation for its importance, yet empirical research is limited. Our purpose is to create a model of human spiritual processes and needs in palliative care situations so that...

Despite recognition of the centrality of professional board-certified chaplains (BCC) in palliative care, the discipline has little research to guide its practices. To help address this limitation, HealthCare Chaplaincy Network funded six proposals in which BCCs worked collaboratively with established researchers. Recognizing the importance of inte...

Palliative care has a foundational commitment to integrate attention to psychological, spiritual, and family issues with biomedical matters. This requires being able to measure them. A limited number of assessment tools have been subjected to validity studies. Many measures are for service assessment, including assessments made as part of quality i...

Truth telling and informed consent are relatively recently established legal and ethical norms in end-of-life health care. This chapter provides an exploratory guide to the evolution of both norms, highlighting some of the benefits, problems, and issues associated with both terms. It also presents a selection of the stepwise protocols and practices...

"Personalized medicine" has become a generic term referring to techniques that evaluate either the host or the disease to enhance the likelihood of beneficial patient outcomes from treatment interventions. There is, however, much more to personalization of care than just identifying the biotherapeutic strategy with the highest likelihood of benefit...

Questions about our potential to commit atrocities like those in the Nazis’ human subjects research may be unwelcome to medical professionals who are comfortable in today’s society. Our reliance on medical professionals’ advocacy for vulnerable people and vulnerable values, and on informed consent and institutional approval for research, may not ne...

Advance care planning (ACP) provides for decisions in the event of decisional incapacity. Determining ahead of time what a person may want is challenging and limits the utility of ACP. We present empirical evidence for a new approach to ACP: the individual's "intervention threshold." The intervention threshold is intuitively understood by clinician...

Background: Data about pediatric intensive care unit (PICU) family conferences (FCs) are needed to enhance our understanding of the role of FCs in patient care and build a foundation for future research on PICU communication and decision making. Objective: The study's objective was to describe the use and content of PICU FCs. Design: The study...

Rising costs and a workforce talent shortage are two of the health care industry’s most pressing challenges. In particular, serious illnesses often impose significant costs on individuals and their families, which can place families at an increased risk for multigenerational economic deprivation or even an illness–poverty trap. At the same time, fa...

Objective: Describe the roles and respective responsibilities of PICU healthcare professionals in end-of-life care decisions faced by PICU parents. Design: Retrospective qualitative study. Setting: University-based tertiary care children's hospital. Participants: Eighteen parents of children who died in the pediatric ICU and 48 PICU healthca...

Introduction In September 2007, Northwestern University's Feinberg School of Medicine received a $21.1 million dollar, 5-year grant from the National Institutes of Health to fund the Oncofertility Consortium (OFC). Over the course of the grant, those engaged with the psychological, legal, social, and ethical issues arising from oncofertility provid...

OBJECTIVES: Many informal caregivers report feeling under-prepared about managing medications for patients near the end-of-life. This pilot study evaluates a novel intervention MedCoach that combines video and written materials to better equip caregivers in effectively managing medications for home hospice patients. METHODS: A convenience sample of...

How to Obtain Contact Hours by Reading This Article Instructions 2.1 contact hours will be awarded for this activity. A contact hour is 60 minutes of instruction. This is a Learner-Paced Program. Vindico Medical Education does not require submission of quiz answers. A contact hour certificate will be awarded 4 to 6 weeks upon receipt of your compl...

This is a commentary on “Attitudes of legal guardians of ventilated ICU patients toward the process of decision making associated with invasive nonlife-saving procedures” by Michael Kuniavsky, Freda DeKeyser Ganz, David M Linton, and Sigal Sviri. Kuniavsky and colleagues report that decision-making for the seriously ill is difficult for the patient...

Background: Medicine has long acknowledged the role of chaplains in healthcare, but there is little research on the relationship between chaplaincy care and health outcomes. The present study examines the association between chaplaincy services and end-of-life care service choices. Methods: HealthCare Chaplaincy purchased the AHA survey database...

Managing and administering medications to relieve pain and symptoms are common, important responsibilities for informal caregivers of patients receiving end-of-life care at home. However, little is known about how hospice providers prepare and support caregivers with medication-related tasks. This qualitative study explores the key approaches that...

Abdul Rahman Hussein (name and case details changed for confidentiality) was a 60-year-old man with advanced colon cancer who received palliative radiation therapy several years ago in a Jerusalem hospital.APalestinianmanfromtheWestBankcity of Ramallah, Mr. Hussein had been hospitalized for management of a bowel obstruction. Although he had a large...

Palliative care was established rapidly in some countries, while in other countries its establishment has taken a different trajectory. This paper identifies core steps in developing a medical specialty and examines those taken by Israel as compared with the US and England for palliative care. It considers the next steps Israel may take. Palliative...

671 Background: Dignity Therapy (DT) is a structured psychotherapeutic interview which allows people to create a permanent document to validate their existence and leave a legacy. It focuses on life review, meaningful relationships, and words of comfort to loved ones. In terminal patients no longer receiving chemotherapy, this intervention improved...

The last communications of a dying person may be valued as the most important in a lifetime. Similarly, the decisions a person makes, including medical care decisions, as he or she negotiates the last chapter of life may be so meaningful that they are remembered for the rest of the lives of the bereaved. On a concrete level, care near the end of li...

The traditional Western understanding of life and death as a strict dichotomy is challenged by a more descriptively accurate model of life's progressive cessation. Dying can be defined by a bounded zone of residual states of life that fits better with moral intuition and more sensitively guides action toward the dying.

To estimate the proportion of community-dwelling older adults with dementia being prescribed a psychotropic and to identify patient and caregiver factors associated with antipsychotic use. Retrospective cohort study of the Aging, Demographics, and Memory Study (ADAMS) from 2002 to 2004 designed to assess dementia severity and service use of communi...

We sought to develop and validate a novel palliative medicine needs assessment tool for patients with cancer in the emergency department. An expert panel trained in palliative medicine and emergency medicine reviewed and adapted a general palliative medicine symptom assessment tool, the Needs at the End-of-Life Screening Tool. From this adaptation...

To examine clinicians' and parents' reflections on pediatric intensive care unit family conferences in the context of discussion about end-of-life care decision making. Retrospective qualitative study. A university-based hospital. Eighteen parents of children who died in the pediatric intensive care unit and 48 pediatric intensive care unit clinici...

Find out all you need to know about providing high-quality care to patients with serious illnesses from the 2nd edition of Palliative Care: Core Skills and Clinical Competencies. Drs. Linda L. Emanuel and S. Lawrence Librach, leaders in the field, address the clinical, physical, psychological, cultural, and spiritual dimensions that are integral to...

The Education in Palliative and End-of-life Care for Emergency Medicine Project (EPEC™-EM) is a comprehensive curriculum in palliative and end-of-life care for emergency providers. We assessed the adaptation of this course to an EM residency program using synchronous and asynchronous learning. Curriculum adaptation followed Kern's standardized six-...

Decision making is a complex process and it is particularly challenging to make decisions with, or for, patients who are near the end of their life. Some of those challenges will not be resolved - due to our human inability to foresee the future precisely and the human proclivity to change stated preferences when faced with reality. Other challenge...

On a fundamental biological level, humans are programmed to reproduce; hormonal and physiological influences are reinforced by social pressures and structures that urge parenthood in most cultures. The inability to reproduce usually causes distress and suffering among men and women alike. The advent of assisted reproductive technologies such as emb...

To gather pilot data on the economic impact of terminal illness on families and on the feasibility of training caregivers as a method of stemming illness-related poverty. Exploratory, descriptive study involving semistructured interviews with patient and caregiver dyads. Pallium India Palliative Care Clinic in Trivandrum, Kerala, India. Eleven pati...

Noncancer pain and cognitive impairment affect many older adults and each is associated with functional disability, but their combined impact has yet to be rigorously studied. This is a cross-sectional analysis of the Canadian Study of Health and Aging. Pain was collapsed from a 5-point to a dichotomous scale (no and very mild vs moderate and great...

The emergency department (ED) visit rate for older patients exceeds that of all age groups other than infants. The aging population will increase elder ED patient utilization to 35% to 60% of all visits. Older patients can have complex clinical presentations and be resource-intensive. Evidence indicates that emergency physicians fail to provide con...

A comprehensive whole-person approach might improve processes and outcomes of care for patients with cancer. To assess the ability of NEST13+ (Needs of a social nature; Existential concerns; Symptoms; and Therapeutic interaction), a screening and assessment tool, to identify social, emotional, physical, and care-system needs and to improve clinical...

To estimate the quantity and economic value of informal care provided to older persons during their final year of life in the community. Retrospective analysis of publicly available nationally representative survey data. This retrospective study used data from the Health and Retirement Study, a nationally representative, longitudinal study of commu...

To propose a theoretical construct of family caregiver skills in effective medication management for home hospice patients. Semistructured face-to-face interviews were conducted with 22 hospice providers (14 nurses, 4 physicians, and 4 social workers) and 23 family caregivers (10 daughters, 4 wives, 2 husbands, and 7 others) of elderly patients (>o...

We articulate an intellectual history and a definition, description and model of patient safety. We define patient safety as a discipline in the health care professions that applies safety science methods toward the goal of achieving a trustworthy system of health care delivery. We also define patient safety as an attribute of health care systems t...

For many, a cancer death in the family is the immediately obvious part of what is actually a double devastation. Overwhelming financial damage also results for many families, from the cost of medical care and from the loss of earning power by the patient and family. For some families, the consequences may be multigenerational and can affect the hea...

Serious illness can cause economic devastation for families. Locally run patient day care programs, or programs for training caregivers for future caregiving employment, could provide a measure of economic resilience. We sought to gather pilot data on the circumstances of informal caregivers and the desirability of such programs. In a convenience s...

Most patients want some control over their medical care, including-or even especially-when they are too sick to participate in decisions. Clinicians who have to make decisions for patients who are unable to participate often would appreciate guidance from patients' wishes. Advance care planning responds to these needs. The process provides for disc...

We articulate an intellectual history and a definition, description, and model of patient safety. We define patient safety as a discipline in the health care professions that applies safety science methods toward the goal of achieving a trustworthy system of health care delivery. We also define patient safety as an attribute of health care systems...

The Patient Safety Education Project (PSEP) aims to advance the shift to patient-centered, systems-based care through high-impact education of health care workers using a superior “train-the-trainer” dissemination mechanism. Employing a core curriculum that includes practice improvement toolkits, PSEP develops “safety trainers,” who teach patient s...

Maintaining safety in the home and community is a national public health concern, especially for older adults who "age in place." In this article, we introduce a multicausal concept called "health-related safety," which is defined as the minimization of the probability of preventable, unintended harm in community-dwelling individuals. Derived from...

We develop an overlapping generations model to examine how illness affects a household's long-term economic condition through its immediate implication on the household's decision to invest in their child's education. A prolonged period of illness or premature death of an earning member reduce household income, which in turn adversely affects a hou...

The processes surrounding psychological adjustment to losses due to advancing and end-stage illness have not been well delineated. While adjustment to losses due to death are often thought of as the bereaved's lot, dying persons experience multiple, accumulating, and profound losses of functions, abilities, roles, and relationships and therefore ha...

Background: Palliative sedation is an important topic of medical and ethical debates. Although nurses often participate in its use, little is known about their attitudes and experiences. Methods: In a qualitative study, we explored nurses' attitudes and experiences with palliative sedation. In semi-structured interviews with 16 nurses, we collected...

The availability of psychometrically sound and clinically relevant screening, diagnosis, and outcome evaluation tools is essential to high-quality palliative care assessment and management. Such data will enable us to improve patient evaluations, prognoses, and treatment selections, and to increase patient satisfaction and quality of life. To accom...

Roles are relevant during the last stage of the life cycle, as at any other stage. Awareness and an understanding of the dying role have the capacity to guide the process. Lack thereof can impede good deaths and may have been in part responsible for the intense and often futile interventions provided to many dying patients in the past. We describe...

This exploratory study examines employer attitudes towards people with disabilities in the labor market. Through in-depth, semi-structured interviews with senior management, human resources staff, directors of diversity, and hiring managers at four corporations, it pinpoints reasons why businesses chose to hire people with disabilities, investigate...

Although clinicians and researchers often rely on family members 'reports of a wide range of dying patients' symptoms and care preferences, available data indicate divergences between the two. We used a national sample to analyze patient-caregiver pairs to explore areas of concordance and nonconcordance about physical symptoms, communication with p...

The Hippocratic Oath and all other known declarations of medical professional commitment bind and adjure us to care for the sick. They do not stop at requiring attempts to cure; they require care for the suffering that results from sickness. No exceptions. So it is startling that, in an era when we are capable of alleviating so much suffering, much...