Linda Emanuel | Northwestern University (original) (raw)

Papers by Linda Emanuel

Journal of Clinical Oncology, Apr 20, 2012

Abdul Rahman Hussein (name and case details changed for confidentiality) was a 60-year-old man wi... more 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 family, his visitors were limited to an adult daughter and son, who were the family members best able to navigate the complex system of checkpoints to cross the wall dividing Ramallah from Jerusalem. At the time of Mr. Hussein’s hospitalization, a student chaplain (R.E.) was participating in a new program at the Jerusalem hospital in which all oncology patients were offered chaplaincy visits. She had been assigned to visit another English-speaking patient in the same hospital room as Mr. Hussein, but as she approached the other patient’s bed, Mr. Husseincaughthereyeandsmiled.Shegreetedhim, and he motioned her over to his bedside. When she sat down, he informed her that she, a young American Jew, reminded him of a student from a class in hisyouth.Hebegandescribinghowhespentpartof his childhood in the United States. He talked about how their once-thriving family business had failed and how he had built his own business, and he recounted his family’s journeys back and forth between continents. After a few minutes of conversation, Mr. Hussein’s son, who had been sitting next to him reading abook,rosetogetacupofcoffee.Assoonashisson

BMC Palliative Care, Jan 11, 2022

Palliative & Supportive Care, May 26, 2021

BackgroundDignity Therapy (DT) has been implemented over the past 20 years, but a detailed traini... more BackgroundDignity 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.ObjectiveThe objective of this article is to describe a detailed method for DT therapist training.MethodChochinov's DT training seminars included preparatory reading of the DT textbook, in-person training, and practice interview sessions. Building on this training plan, we added feedback on practice and actual interview sessions, a tracking form to guide the process, a written training manual with an annotated model DT transcript, and quarterly support sessions. Using this training method, 18 DT therapists were trained across 6 sites.ResultsThe DT experts’ verbal and written feedback on the practice and actual sessions encouraged the trainees to provide additional attention to eight components: (1) initial framing (i.e., clarifying and organizing of the patient's own goals for creating the legacy document), (2) verifying the patient's understanding of DT, (3) gathering the patient's biographical information, (4) using probing questions, (5) exploring the patient's story thread, (6) refocusing toward the legacy document creation, (7) inviting the patient's expression of meaningful messages, and (8) general DT processes. Evident from the ongoing individual trainee mentoring was achievement and maintenance of adherence to the DT protocol.DiscussionThe DT training protocol is a process to enable consistency in the training process, across waves of trainees, toward the goal of maintaining DT implementation consistency. This training protocol will enable future DT researchers and clinicians to consistently train therapists across various disciplines and locales. Furthermore, we anticipate that this training protocol could be generalizable as a roadmap for implementers of other life review and palliative care interview-based interventions.

Preface Foreword by Ian McDonald Introduction by Adam Zeman and Linda Emanuel 1. What are ethics?... more Preface Foreword by Ian McDonald Introduction by Adam Zeman and Linda Emanuel 1. What are ethics? By Anthony Grayling Diagnosis and communication 2. To tell or not to tell?: the problem of medically unexplained symptoms by Simon Wessely 3. Should the diagnosis of Alzheimers disease always be disclosed? by Robert Howard 4. When, if ever, should confidentiality be set aside? By Jessica Wilen Berg 5. Should consent be required for an HIV test? By Rebecca Dresser 6. Should we offer predictive tests for fatal inherited diseases and, if so, how? by Susan M Wolf and Thomas C Horejsi Therapy 7. Why, and how should trials be conducted? By Richard I Lindley and Charles P Warlow 8. How should we test and improve neurosurgical care? By Grant Gillett 9. Embryos and animals: can we justify their use in research and treatment? By Peter Singer 10. Who should receive and who dispense expensive treatments? By David Bates 11. Why and when may treatment be enforced? By Anthony Hope Funding and conflicts of interest 12. Does private practice threaten public service or enhance it? By Ian R Williams 13. The Gulf War Syndrome and the military medic: whose agent is the physician? By Edmund G Howe Last things 14. Is the concept of brain stem death secure? By Calixto Machado 15. When-- if ever-- should treatment be withdrawn? By Christopher D Ward 16. Must we always use advance directives? By Linda Emanuel 17. When-if ever-should we expedite death? By Diane E Meier, Hattie Myers and Philip R Muskin

Hastings Center Report, Nov 1, 1994

... various The Green Eggs and Ham Phenomena by Lachlan Forrow "scenarios ... Boston, Mass. ... more ... various The Green Eggs and Ham Phenomena by Lachlan Forrow "scenarios ... Boston, Mass. Lachlan Forrow, "The Green Eggs and Ham Phe-nomena," Special Supplement, Hastings Center Report 24, no. 6 (1994): S29-S32. S29

Journal of Palliative Medicine, Feb 1, 2021

Background: The COVID-19 pandemic has created an environment in which existence is more fragile a... more 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 illustrate, we describe existential terror, terror management, and existential maturity and go on to outline how existential maturity is important for not only the dying and the grieving but for also those facing risk of acquiring COVID-19. Results: Next, we describe how essential components in attaining existential maturity come together. (1) Because people experience absent attachment to important people as very similar to dying, attending to those experiences of relationship is essential. (2) That entails an internal working through of important relationships, knowing their incompleteness, until able to “hold them inside,” and invest in these and other connections. (3) And what allows that is making a meaningful connection with someone around the experience of absence or death. (4) We also describe the crucial nature of a holding environment in which all of these can wobble into place.Discussion: Finally, we consider how fostering existential maturity would help populations face up to the diverse challenges that the pandemic brings up for people everywhere.

Journal of the American Geriatrics Society, Dec 1, 2002

Families, Systems, & Health, 2017

When patients are incapacitated and face serious illness, family members must make medical decisi... more When patients are incapacitated and face serious illness, family members must make medical decisions for the patient. Medical decision sciences give only modest attention to the relationships among patients and their family members, including impact that these relationships have on the decision-making process. A review of the literature reveals little effort to systematically apply a theoretical framework to the role of family interactions in proxy decision making. A family systems perspective can provide a useful lens through which to understand the dynamics of proxy decision making. This article considers the mutual impact of family systems on the processes and outcomes of proxy decision making. The article first reviews medical decision science's evolution and focus on proxy decision making and then reviews a family systems approach, giving particular attention to Rolland's Family Systems Illness Model. A case illustrates how clinical practice and how research would benefit from bringing family systems thinking to proxy decisions. We recommend including a family systems approach in medical decision science research and clinical practices around proxy decisions making. We propose that clinical decisions could be less conflicted and less emotionally troubling for families and clinicians if family systems approaches were included. This perspective opens new directions for research and novel approaches to clinical care. (PsycINFO Database Record

Hastings Center Report, Jul 1, 2000

... AMA on war crimes committed by physicians.11 Respond-ing to Ivy's report, the House ... more ... AMA on war crimes committed by physicians.11 Respond-ing to Ivy's report, the House of Del-egates adopted three principles to protect experimental subjects' "human rights," including the re-quirement of informed consent.12 July-August 2000/HASTINGS CENTER REPORT ...

Health Affairs, Nov 1, 1997

Archives of internal medicine, Dec 12, 2005

American Journal of Hospice and Palliative Medicine, Apr 29, 2021

Background:Nearly 500,000 older Americans die a cancer-related death annually. Best practices for... more 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 opportunity for patients to make meaning by contextualizing their illness within their larger life story. The extent to which Dignity Therapy actually elicits meaning-making from patients, however, has not been tested.Aim:The current study examines (i) extent of patient meaning-making during Dignity Therapy, and (ii) whether baseline psychospiritual distress relates to subsequent meaning-making during Dignity Therapy.Design:Participants completed baseline self-report measures of psychospiritual distress (i.e., dignity-related distress, spiritual distress, quality of life), before participating in Dignity Therapy. Narrative analysis identified the extent of meaning-making during Dignity Therapy sessions.Participants:Twenty-five outpatients (M age = 63, SD = 5.72) with late-stage cancer and moderate cancer-related symptoms were recruited.Results:Narrative analysis revealed all patients made meaning during Dignity Therapy but there was wide variation (i.e., 1—12 occurrences). Patients who made greater meaning were those who, at baseline, reported significantly higher psychospiritual distress, including greater dignity-related distress (r = .46), greater spiritual distress (r = .44), and lower quality of life (r = −.56).Conclusion:Meaning-making was found to be a central component of Dignity Therapy. Particularly, patients experiencing greater distress in facing their illness use the Dignity Therapy session to express how they have made meaning in their lives.

Journal of Palliative Medicine, Jun 1, 2008

Cancer Epidemiology, Biomarkers & Prevention, 2023

Pediatric Critical Care Medicine, 2013

Objective-Describe the roles and respective responsibilities of pediatric intensive care unit (PI... more Objective-Describe the roles and respective responsibilities of pediatric intensive care unit (PICU) health care professionals (HCPs) 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 PICU and 48 PICU HCPs (physicians, nurses, social workers, child-life specialists, chaplains, and case managers). Interventions-In depth, semi-structured focus groups and one-on-one interviews designed to explore experiences in end-of-life care decision making. Measurements and Main Results-We identified end-of-life care decisions that parents face based on descriptions by parents and HCPs. Participants described medical and non-medical decisions addressed toward the end of a child's life. From the descriptions, we identified seven roles HCPs play in end-of-life care decisions. The family supporter addresses emotional, spiritual, environmental, relational and informational family needs in a nondirective way. The family advocate helps families articulate their views and needs to HCPs. The information giver provides parents with medical information, identifies decisions or describes available options, and clarifies parents' understanding. The general care coordinator helps facilitate interactions among HCPs in the PICU, among HCPs from different subspecialty teams, and between HCPs and parents. The decision maker makes or directly influences the defined plan of action. The end-of-life care

Journal of Clinical Oncology, Apr 20, 2012

Abdul Rahman Hussein (name and case details changed for confidentiality) was a 60-year-old man wi... more 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 family, his visitors were limited to an adult daughter and son, who were the family members best able to navigate the complex system of checkpoints to cross the wall dividing Ramallah from Jerusalem. At the time of Mr. Hussein’s hospitalization, a student chaplain (R.E.) was participating in a new program at the Jerusalem hospital in which all oncology patients were offered chaplaincy visits. She had been assigned to visit another English-speaking patient in the same hospital room as Mr. Hussein, but as she approached the other patient’s bed, Mr. Husseincaughthereyeandsmiled.Shegreetedhim, and he motioned her over to his bedside. When she sat down, he informed her that she, a young American Jew, reminded him of a student from a class in hisyouth.Hebegandescribinghowhespentpartof his childhood in the United States. He talked about how their once-thriving family business had failed and how he had built his own business, and he recounted his family’s journeys back and forth between continents. After a few minutes of conversation, Mr. Hussein’s son, who had been sitting next to him reading abook,rosetogetacupofcoffee.Assoonashisson

BMC Palliative Care, Jan 11, 2022

Palliative & Supportive Care, May 26, 2021

BackgroundDignity Therapy (DT) has been implemented over the past 20 years, but a detailed traini... more BackgroundDignity 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.ObjectiveThe objective of this article is to describe a detailed method for DT therapist training.MethodChochinov's DT training seminars included preparatory reading of the DT textbook, in-person training, and practice interview sessions. Building on this training plan, we added feedback on practice and actual interview sessions, a tracking form to guide the process, a written training manual with an annotated model DT transcript, and quarterly support sessions. Using this training method, 18 DT therapists were trained across 6 sites.ResultsThe DT experts’ verbal and written feedback on the practice and actual sessions encouraged the trainees to provide additional attention to eight components: (1) initial framing (i.e., clarifying and organizing of the patient's own goals for creating the legacy document), (2) verifying the patient's understanding of DT, (3) gathering the patient's biographical information, (4) using probing questions, (5) exploring the patient's story thread, (6) refocusing toward the legacy document creation, (7) inviting the patient's expression of meaningful messages, and (8) general DT processes. Evident from the ongoing individual trainee mentoring was achievement and maintenance of adherence to the DT protocol.DiscussionThe DT training protocol is a process to enable consistency in the training process, across waves of trainees, toward the goal of maintaining DT implementation consistency. This training protocol will enable future DT researchers and clinicians to consistently train therapists across various disciplines and locales. Furthermore, we anticipate that this training protocol could be generalizable as a roadmap for implementers of other life review and palliative care interview-based interventions.

Preface Foreword by Ian McDonald Introduction by Adam Zeman and Linda Emanuel 1. What are ethics?... more Preface Foreword by Ian McDonald Introduction by Adam Zeman and Linda Emanuel 1. What are ethics? By Anthony Grayling Diagnosis and communication 2. To tell or not to tell?: the problem of medically unexplained symptoms by Simon Wessely 3. Should the diagnosis of Alzheimers disease always be disclosed? by Robert Howard 4. When, if ever, should confidentiality be set aside? By Jessica Wilen Berg 5. Should consent be required for an HIV test? By Rebecca Dresser 6. Should we offer predictive tests for fatal inherited diseases and, if so, how? by Susan M Wolf and Thomas C Horejsi Therapy 7. Why, and how should trials be conducted? By Richard I Lindley and Charles P Warlow 8. How should we test and improve neurosurgical care? By Grant Gillett 9. Embryos and animals: can we justify their use in research and treatment? By Peter Singer 10. Who should receive and who dispense expensive treatments? By David Bates 11. Why and when may treatment be enforced? By Anthony Hope Funding and conflicts of interest 12. Does private practice threaten public service or enhance it? By Ian R Williams 13. The Gulf War Syndrome and the military medic: whose agent is the physician? By Edmund G Howe Last things 14. Is the concept of brain stem death secure? By Calixto Machado 15. When-- if ever-- should treatment be withdrawn? By Christopher D Ward 16. Must we always use advance directives? By Linda Emanuel 17. When-if ever-should we expedite death? By Diane E Meier, Hattie Myers and Philip R Muskin

Hastings Center Report, Nov 1, 1994

... various The Green Eggs and Ham Phenomena by Lachlan Forrow "scenarios ... Boston, Mass. ... more ... various The Green Eggs and Ham Phenomena by Lachlan Forrow "scenarios ... Boston, Mass. Lachlan Forrow, "The Green Eggs and Ham Phe-nomena," Special Supplement, Hastings Center Report 24, no. 6 (1994): S29-S32. S29

Journal of Palliative Medicine, Feb 1, 2021

Background: The COVID-19 pandemic has created an environment in which existence is more fragile a... more 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 illustrate, we describe existential terror, terror management, and existential maturity and go on to outline how existential maturity is important for not only the dying and the grieving but for also those facing risk of acquiring COVID-19. Results: Next, we describe how essential components in attaining existential maturity come together. (1) Because people experience absent attachment to important people as very similar to dying, attending to those experiences of relationship is essential. (2) That entails an internal working through of important relationships, knowing their incompleteness, until able to “hold them inside,” and invest in these and other connections. (3) And what allows that is making a meaningful connection with someone around the experience of absence or death. (4) We also describe the crucial nature of a holding environment in which all of these can wobble into place.Discussion: Finally, we consider how fostering existential maturity would help populations face up to the diverse challenges that the pandemic brings up for people everywhere.

Journal of the American Geriatrics Society, Dec 1, 2002

Families, Systems, & Health, 2017

When patients are incapacitated and face serious illness, family members must make medical decisi... more When patients are incapacitated and face serious illness, family members must make medical decisions for the patient. Medical decision sciences give only modest attention to the relationships among patients and their family members, including impact that these relationships have on the decision-making process. A review of the literature reveals little effort to systematically apply a theoretical framework to the role of family interactions in proxy decision making. A family systems perspective can provide a useful lens through which to understand the dynamics of proxy decision making. This article considers the mutual impact of family systems on the processes and outcomes of proxy decision making. The article first reviews medical decision science's evolution and focus on proxy decision making and then reviews a family systems approach, giving particular attention to Rolland's Family Systems Illness Model. A case illustrates how clinical practice and how research would benefit from bringing family systems thinking to proxy decisions. We recommend including a family systems approach in medical decision science research and clinical practices around proxy decisions making. We propose that clinical decisions could be less conflicted and less emotionally troubling for families and clinicians if family systems approaches were included. This perspective opens new directions for research and novel approaches to clinical care. (PsycINFO Database Record

Hastings Center Report, Jul 1, 2000

... AMA on war crimes committed by physicians.11 Respond-ing to Ivy's report, the House ... more ... AMA on war crimes committed by physicians.11 Respond-ing to Ivy's report, the House of Del-egates adopted three principles to protect experimental subjects' "human rights," including the re-quirement of informed consent.12 July-August 2000/HASTINGS CENTER REPORT ...

Health Affairs, Nov 1, 1997

Archives of internal medicine, Dec 12, 2005

American Journal of Hospice and Palliative Medicine, Apr 29, 2021

Background:Nearly 500,000 older Americans die a cancer-related death annually. Best practices for... more 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 opportunity for patients to make meaning by contextualizing their illness within their larger life story. The extent to which Dignity Therapy actually elicits meaning-making from patients, however, has not been tested.Aim:The current study examines (i) extent of patient meaning-making during Dignity Therapy, and (ii) whether baseline psychospiritual distress relates to subsequent meaning-making during Dignity Therapy.Design:Participants completed baseline self-report measures of psychospiritual distress (i.e., dignity-related distress, spiritual distress, quality of life), before participating in Dignity Therapy. Narrative analysis identified the extent of meaning-making during Dignity Therapy sessions.Participants:Twenty-five outpatients (M age = 63, SD = 5.72) with late-stage cancer and moderate cancer-related symptoms were recruited.Results:Narrative analysis revealed all patients made meaning during Dignity Therapy but there was wide variation (i.e., 1—12 occurrences). Patients who made greater meaning were those who, at baseline, reported significantly higher psychospiritual distress, including greater dignity-related distress (r = .46), greater spiritual distress (r = .44), and lower quality of life (r = −.56).Conclusion:Meaning-making was found to be a central component of Dignity Therapy. Particularly, patients experiencing greater distress in facing their illness use the Dignity Therapy session to express how they have made meaning in their lives.

Journal of Palliative Medicine, Jun 1, 2008

Cancer Epidemiology, Biomarkers & Prevention, 2023

Pediatric Critical Care Medicine, 2013

Objective-Describe the roles and respective responsibilities of pediatric intensive care unit (PI... more Objective-Describe the roles and respective responsibilities of pediatric intensive care unit (PICU) health care professionals (HCPs) 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 PICU and 48 PICU HCPs (physicians, nurses, social workers, child-life specialists, chaplains, and case managers). Interventions-In depth, semi-structured focus groups and one-on-one interviews designed to explore experiences in end-of-life care decision making. Measurements and Main Results-We identified end-of-life care decisions that parents face based on descriptions by parents and HCPs. Participants described medical and non-medical decisions addressed toward the end of a child's life. From the descriptions, we identified seven roles HCPs play in end-of-life care decisions. The family supporter addresses emotional, spiritual, environmental, relational and informational family needs in a nondirective way. The family advocate helps families articulate their views and needs to HCPs. The information giver provides parents with medical information, identifies decisions or describes available options, and clarifies parents' understanding. The general care coordinator helps facilitate interactions among HCPs in the PICU, among HCPs from different subspecialty teams, and between HCPs and parents. The decision maker makes or directly influences the defined plan of action. The end-of-life care