This special issue contents : a report of physicians’ beliefs about physician-assisted suicide: a national study ; respecting autonomy and promoting the patient’s good in the setting of serious terminal and concurrent mental illness ; after-death functions of cell death; selective neuronal death in neurodegenerative diseases: the ongoing mystery ; practice variability in determination of death by neurologic criteria for adult patients ; mortal responsibilities: bioethics and medical-assisted dying ; anticipation, accompaniment, and a good death in perinatal care ; pros and cons of physician aid in dying ; brain death criteria: medical dogma and outliers ; dying well-informed: the need for better clinical education surrounding facilitating end-of-life conversations ; looking back at withdrawal of life-support law and policy to see what lies ahead for medical aid-in-dying.
OBJECTIVES: End-of-life (EOL) situations are common in the intensive care unit (ICU). Poor communication in respective situations may result in conflict and/or post-traumatic stress disorder in patients' next of kin. Thus, training for EOL communication seems pivotal. Primary objective of the current report was to identify approaches for educational programs in the ICU with regard to EOL communication as well as to conclude on implications for future curricula.
MATERIALS AND METHOD: A literature review in MEDLINE, EMBASE, and PsychINFO was performed. A total of 3484 articles published between 2000 until 2016 were assessed for eligibility. Nine articles reporting on education in EOL communication in the ICU were identified and analyzed further.
RESULTS: The duration of EOL workshops ranged from 3 hours to 3 days, with several different educational methods being applied. Mounting data suggest improved comfort, preparedness, and communication performance in EOL providers following specific EOL training. Due to missing data, the effect of EOL training programs on respective patients' next of kin remains unclear.
CONCLUSION: Few scientific investigations focus on EOL communication in intensive care medicine. The available evidence points to increased comfort and EOL communication performance following specific individual EOL training. Given the general importance of EOL communication, we suggest implementation of educational EOL programs. When developing future educational programs, educators should consider previous experience of participants, clearly defined objectives based on institutional needs, and critical care society recommendations to ensure best benefit of all involved parties.
BACKGROUND: 52% of all deaths in Norway occur in nursing homes. Still advance care planning (ACP) is scarce and heterogeneous. To improve the implementation and practice of ACP in nursing homes, knowledge about health care professionals' views on ACP is vital. The objective of this study is to explore nurses and physicians' aims and experiences with carrying out ACP in nursing homes.
METHODS: Semi-structured group interviews were conducted with 20 health care professionals, recruited from nursing homes where ACP was performed regularly. Qualitative content analysis was used to analyse the data.
RESULTS: The primary aim of the nursing home professionals when doing ACP in nursing homes were to build alliances with next of kin to avoid misunderstandings and future conflicts. Two main experiences with ACP were described: i) due to the sensitivity of ACP issues, it was important to balance directness with being sensitive, and ii) when the physicians raised questions concerning future medical treatment, the answers from residents as well as next of kin were often hesitant and unclear.
CONCLUSION: Our study add insights into how ACP is practiced in nursing homes and the professionals' agenda. A focus on medical issues and achieving consensus with next of kin may result in lack of involvement of the residents and limited awareness of the residents' needs. Interdisciplinary approaches, ACP-training and tailored guidelines may improve the implementation and practice of ACP.
Scenario: Mrs. Murphy, a 78-year-old woman has a history of heartdisease. In the last 2 years, she has been hospitalized 3 times for a series of small heart attacks. Last night, she was rushed to the intensive care unit with a massive heart attack, disoriented, weak and confused. She had no advance directives (ADs) in her possession and there were none in her medical record. The admitting intensivist, worried that her heart may stop due to the extensive damage over the years, wrote an order for full resuscitation.
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The need for improved clinical education surrounding the way difficult news is delivered and how to initiate end-of-life (EOL) discussions with seriously ill patients and their families is essential. Physicians and medical students often report feeling unprepared or uncomfortable with broaching the topic of death with their patients and families. Early and honest conversations with patients concerning diagnoses and advance directives help patients and their families make well-informed decisions regarding future medical care, minimize pain and fears, and allow patients to experience a "peaceful death." Moreover, end-of-life conversations frequently focus on resuscitation plans (advance directives), but should be broadened to include patients' psychosocial, physical, and economic concerns. Transparent, realistic, and sensitive end-of-life conversations can help patients maintain autonomy and dignity in the dying process and increase their quality of life as they near death. Additionally, initiating these conversations can alleviate emotional stress and physical symptoms, prevent invasive, costly, unnecessary, and unwanted care, aid grieving families through the bereavement process, and increase patients' satisfaction with end-of-life care provisions. Overall, more attention and training must be delivered to physicians so that they are better prepared to initiate end-of-life discussions in a patient-centered way, focusing on patients' values and priorities. Requiring a more in depth, developmentally appropriate, and standardized training in EOL and palliative care for physicians-in-training in all disciplines in medical education is necessary. Redesigning medical school EOL curriculum will ensure physicians are better prepared to discuss death and dying and to ensure that seriously ill patients are dying well-informed.
Objectives: A randomized control trial (RCT) to estimate the effect of an interventional video on improving palliative care knowledge, acceptability and attendance to outpatient services in gynecologic oncology patients.
Methods: Women receiving treatment for gynecologic malignancy recruited at an academic tertiary care center were randomized to: palliative care educational video or non-directive cancer center video. The primary outcome was referral to palliative care. Function and knowledge were assessed using the Functional Assessment of Cancer Therapy and the Palliative Care Knowledge Scale. Data analyses were performed using t-tests, Wilcoxon rank sum or Fisher's exact tests with significance level of a = 0.05.
Results: 111 women were enrolled. Demographic characteristics were equally distributed between groups with respect to age, race, cancer, and stage. There was no statistical difference in knowledge scores or in referral to palliative care between the patients that watched the educational versus control video (29% vs. 27%; p = .79). Secondary analysis showed a statistically significant increase in utilization of palliative care services compared to historic institutional data (8.8% to 31.5%; p =.001). Further, those referred had significantly worse baseline functional scores.
Conclusions: Use of a palliative care educational video did not increase knowledge or acceptability of palliative services within this RCT. However, the rate of patients referred to palliative care tripled compared to historic rates. Further studies should investigate whether discussion regarding palliative care services alone may increase desire for referral, and if use of Fact-G scores may identify patients in greatest need of services.
Background: As of 2019, ten jurisdictions in the United States have authorized physicians to prescribe a lethal dose of medication to a terminally ill patient for the purpose of hastening death. Relatively little bioethics scholarship has addressed the question of whether physicians have an obligation to inform qualifying patients about aid-in-dying (AID) in permissive jurisdictions and little is known about providers' actual communication practices with respect to this issue.
Methods: One hundred and forty-four in-depth, semi-structured interviews were conducted and analyzed using an inductive analytic approach as part of the Vermont Study on Aid-in-Dying.
Results: Seventeen respondents, 14 physicians and 3 nurse practitioners, met the inclusion criteria for this sub-study. Eleven respondents indicated that they at least sometimes inform patients about AID. Respondents described multiple factors that influence whether or not they might initiate discussions of AID, including the importance of informing patients of their options for end-of-life care, worries about undue influence, and worries about the potential effects on the patient-provider relationship. For those providers who do initiate discussion of AID at least some of the time, attention to the particulars of each individual patient's situation and the context of the discussion appear to play a role in shaping communication about AID.
Conclusions: While initiating a clinical discussion of AID is undoubtedly challenging, our study provides compelling descriptive evidence that some medical providers who support AID do not unilaterally follow the conventional bioethics wisdom holding that they ought to wait for patients to introduce the topic of AID. Future research should investigate how to approach these discussions so as to minimize ethical worries about undue influence or potential negative consequences.
OBJECTIVE: Serious illness conversations are complex clinical narratives that remain poorly understood. Natural Language Processing (NLP) offers new approaches for identifying hidden patterns within the lexicon of stories that may reveal insights about the taxonomy of serious illness conversations.
METHODS: We analyzed verbatim transcripts from 354 consultations involving 231 patients and 45 palliative care clinicians from the Palliative Care Communication Research Initiative. We stratified each conversation into deciles of "narrative time" based on word counts. We used standard NLP analyses to examine the frequency and distribution of words and phrases indicating temporal reference, illness terminology, sentiment and modal verbs (indicating possibility/desirability).
RESULTS: Temporal references shifted steadily from talking about the past to talking about the future over deciles of narrative time. Conversations progressed incrementally from "sadder" to "happier" lexicon; reduction in illness terminology accounted substantially for this pattern. We observed the following sequence in peak frequency over narrative time: symptom terms, treatment terms, prognosis terms and modal verbs indicating possibility.
CONCLUSIONS: NLP methods can identify narrative arcs in serious illness conversations.
PRACTICE IMPLICATIONS: Fully automating NLP methods will allow for efficient, large scale and real time measurement of serious illness conversations for research, education and system re-design.
BACKGROUND: Advance care planning (ACP) is not well implemented in hospital. Implementation theory stresses the importance of knowing what hospitalised palliative patients and their families experience as barriers or as facilitators in the uptake of ACP with their treating physician.
AIMS: This study aimed to gain an in-depth understanding of what hospitalised palliative patients and their families experienced as barriers or facilitators for having ACP conversations.
METHODS: We used a tape-assisted recall procedure to conduct 29 videotaped interviews with hospitalised patients and their families. We used content analysis based on grounded theory principles.
RESULTS: Four major fields of tension were discovered: not knowing what to expect from the treating physician; not being sure the treating physician can be a trusted partner; daring to speak about ACP; and staying loyal to one's own wishes.
CONCLUSIONS: Patients and families need physicians who are accessible and can be trusted ACP partners throughout the disease process.
Background: The signing of do-not-resuscitate (DNR) consent is mandatory in providing a palliative approach in the end-of-life care for the terminally ill patients and requires an effective communication between the physician and the patients or their family members. This study aimed to investigate the association between the communication skills of physicians who participated in the SHARE (supportive environment, how to deliver the bad news, additional information, reassurance, and emotional support) model course on the patient notification and the signing of do-not-resuscitate (DNR) consent by the terminally ill patients at emergency rooms.
Methods: Between May 1, 2017 and April 30, 2018, a total of 109 terminally ill patients were enrolled in this study, of which 70 had signed a DNR and 39 had not. Data regarding the patients' medical records, a questionnaire survey completed by family members, and patient observation forms were used for the assessment of physicians' communication skills during patient notification. The observation form was designed based on the SHARE model. A multivariate logistic regression model was applied to identify the independent significant factors of the patient and family member variables as well as the four main components of the observation form.
Results: The results revealed that knowing how to convey bad news and providing reassurance and emotional support were significantly correlated with a higher rate of signing DNR consent. Additionally, physician-initiated discussion with family members and a predicted limited life expectancy were negative independent significant factors for signing DNR consent.
Conclusion: This study revealed that good communication skills help to increase the signing of DNR consent. The learning of such skills from attendance of the SHARE model course is encouraged for the physicians in the palliative care of terminally ill patients in an emergency room.
BACKGROUND: Despite evidence that referral to pediatric palliative care reduces suffering and improves quality of life for patients and families, many clinicians delay referral until the end of life. The purpose of this article is to provide a conceptual model for why clinical teams delay discussing palliative care with parents.
DISCUSSION: Building on a prior model of parent regoaling and relevant research literature, we argue for a conceptual model of the challenges and facilitators a clinical team might face in shifting from a restorative-focused treatment plan to a plan that includes palliative aspects, resulting in a subspecialty palliative care referral. Like patients and families, clinicians and clinical teams may recognize that a seriously ill patient would benefit from palliative care and shift from a restorative mindset to a palliative approach. We call this transition "clinician regoaling". Clinicians may experience inhibitors and facilitators to this transition at both the individual and team level which influence the clinicians' willingness to consult subspecialty palliative care. The 8 inhibitors to team level regoaling include: 1) team challenges due to hierarchy, 2) avoidance of criticizing colleagues, 3) structural communication challenges, 4) group norms in favor of restorative goals, 5) diffusion of responsibility, 6) inhibited expression of sorrow, 7) lack of social support, 8) reinforcement of labeling and conflict. The 6 facilitators of team regoaling include: 1) processes to build a shared mental model, 2) mutual trust to encourage dissent, 3) anticipating conflict and team problem solving, 4) processes for reevaluation of goals, 5) sharing serious news as a team, 6) team flexibility.
CONCLUSIONS: Recognizing potential team level inhibitors to transitioning to palliative care can help clinicians develop strategies for making the transition more effectively when appropriate.
CONTEXT: Palliative care aligns treatments with patients' values and improves quality of life, yet whether receipt of recommended elements of palliative care is associated with end-of-life outcomes is under-studied.
OBJECTIVE: To assess whether recommended elements of palliative care (pain and symptom management, goals of care, spiritual care) precede in-hospital death and hospice referral, and whether delivery by specialty palliative care affects that relationship.
METHODS: We conducted structured chart reviews for decedents with late-stage cancer, dementia, and chronic kidney disease with a hospital admission during the six months preceding death. Measures included receipt of recommended elements of palliative care delivered by any clinician and specialty palliative care consult. We assessed associations between recommended elements of palliative care and (1) in-hospital death and (2) hospice referral using multivariable Poisson regression models.
RESULTS: Of 402 decedents, 67 (16.7%) died in-hospital and 168 (41.8%) had hospice referral. Among elements of palliative care, only goals-of-care discussion was associated with in-hospital death (Incidence Rate Ratio [IRR]:1.37; Confidence Interval (CI):1.01-1.84) and hospice referral (IRR:1.85; CI:1.31-2.61). Specialty palliative care consult was associated with a lower likelihood of in-hospital death (IRR:0.57; CI: 0.44-0.73) and a higher likelihood of hospice referral (IRR:1.45; CI: 1.12-1.89) compared to no consult.
CONCLUSION: Goals-of-care discussions by different types of clinicians commonly precede end-of-life care in hospital or hospice. However, engagement with specialty palliative care reduced in-hospital death and increased hospice referral. Understanding the causal pathways of goals-of-care discussions may help build primary palliative care interventions to support patients near the end of life.
OBJECTIVE: Interventions are needed to improve mental health (i.e., depression, anxiety) and palliative care (i.e., symptoms, goals of care, and advance care planning) outcomes in Latino/as with advanced cancer.
METHODS: An interprofessional study team used the Ecological Validity Model and a participatory approach to adapt an evidence-based counseling intervention for Latino/as and integrate the counseling intervention with an evidence-based patient navigator intervention. Next, a small pilot study was conducted to understand and improve the feasibility of the integrated Puente para Cuidar intervention.
RESULTS: Adaptations were made to language, literacy, and content of the counseling intervention, and video vignettes of the counseling case studies were produced on the recommendation of Latino/a stakeholders. Bicultural, bilingual patient navigators were used as "cultural brokers" between Latino/a patients and the counselor. The pilot study of Puente para Cuidar demonstrated feasibility based on participant perception of helpfulness and acceptability and nearing goal visit completion rates.
CONCLUSIONS: A culturally adapted intervention to address mental health and palliative care needs in Latino/as with advanced cancer was developed from prior evidenced-based interventions using a cultural adaptation model and a participatory approach. The intervention is ready for effectiveness testing.
BACKGROUND: Effective communication is integral to the delivery of goal-concordant care for older adults and their family caregivers, and yet, it is uncommon in people with serious illness. This study explores the challenges of integrating end-of-life communication into heart failure management from the perspectives of older adults and family caregivers.
METHODS: In a qualitative study of older adults with heart failure and their family caregivers, fourteen semi-structured interviews were conducted with 19 participants in Ontario, Canada. The interviews were transcribed verbatim and thematic analysis was applied to analyze the data.
RESULTS: Four themes were identified in the context of participants' understanding of illness: 1) trivializing illness-related challenges, 2) positivity in late life, 3) discomfort in having end-of-life conversations, and 4) reluctant to engage despite need. These challenges often intertwine with one another. Most participants had not engaged in end-of-life discussions with their clinicians or family members.
CONCLUSION: The findings provide insights that can inform approaches to integrate end-of-life communication for older adults with serious illness and caregivers. The identified challenges highlight a need for end-of-life communication to occur earlier in illness to be able to support individuals throughout the period of decline. In addition, end-of-life communication should be introduced iteratively for those who may not be ready to engage. Alternative approaches to communication are needed to elicit the challenges that patients and caregivers experience throughout the progression of illness to improve care for people nearing the end of life.
BACKGROUND: End-of-life discussions often are not initiated until close to death, even in the presence of life-limiting illness or frailty. Previous research shows that doctors may not explicitly verbalize approaching end-of-life in the foreseeable future, despite shifting their focus to comfort care. This may limit patients' opportunity to receive information and plan for the future. General Practitioners (GPs) have a key role in caring for increasing numbers of patients approaching end-of-life.
OBJECTIVE: To explore GPs' thought processes when deciding whether to initiate end-of-life discussions.
METHODS: A qualitative approach was used. We purposively recruited 15 GPs or GP trainees from South-East Queensland, Australia, and each participated in a semi-structured interview. Transcripts were analyzed using inductive thematic analysis.
RESULTS: Australian GPs believe they have a responsibility to initiate end-of-life conversations, and identify several triggers to do so. Some also describe caution in raising this sensitive topic, related to patient, family, cultural and personal factors.
CONCLUSIONS: These findings enable the development of approaches to support GPs to initiate end-of-life discussions that are cognizant both of GPs' sense of responsibility for these discussions, and factors that may contribute to caution initiating them, such as anticipated patient response, cultural considerations, societal taboos, family dynamics and personal challenges to doctors.
La notion de vie accomplie est purement subjective, la réalité se présente en continuum de propositions successives qui, chacune, fait rebondir la vie. En la formulant, la personne se transforme en observateur d'elle-même, se débouble et génére une représentation d'elle-même qu'elle peut à tout temps modifier. C'est là que l'écoute d'un autre trouve toute sa place : décider que sa vie est accomplie ne saurait donc être une réflexion solitaire, mais délibérée sous le regard et à l'abri de la présence de l'autre.
Background: Patients with advanced chronic obstructive pulmonary disease have difficulty reporting their holistic support needs to health care professionals, undermining delivery of person-centred care. We lack tools that directly support patients with this.
Aim: To develop an evidence-based, designed-for-purpose, tool to enable patients to directly identify and express support needs to health care professionals.
Design: Two-stage qualitative study. Stage 1: domains of support need were identified through a systematic review, analysis of an established qualitative dataset and patient/carer focus groups. Stage 2: draft tool developed using the identified domains of need and then refined through feedback from patients, carers and health care professionals, ensuring acceptability and suitability.
Setting/participants: Stage 1 patients/carers recruited via four primary care practices and two patient support groups (East of England). Stage 2 health care professionals recruited via the Clinical Research Network and local community trust and patients/carers through two further practices and two additional support groups (East of England). In total, 57 patients, carers and health care professionals participated.
Results: A comprehensive set of evidence-based support domains (for example: overcoming boredom or loneliness, knowing what to expect in the future) was identified and formulated into questions. The resulting tool asks patients to consider whether they need more support in 15 broad areas. Patients, carers and clinical stakeholders broadly endorsed the tool’s content and wording.
Conclusion: The Support Needs Approach for Patients (SNAP) tool is a concise evidence-based tool designed to help patients with advanced chronic obstructive pulmonary disease identify and express their support needs to enable delivery of person-centred care.
BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the unique circumstances of paediatric palliative care.
AIM: To develop a prompt list suitable for paediatric palliative care.
DESIGN: Underpinned by Delphi methodology, a six-phase procedure was adopted: (1) drafting items based on the findings of a literature review, (2) condensing the list of items based on group discussion, (3) refining items based on a survey of expert healthcare professionals, (4) additional refining of items based on another survey of professionals, (5) further refining of items based on cognitive interviews with family members, and (6) final review by healthcare professional and family member groups.
PARTICIPANTS: Three participant groups were involved during various phases: (1) members of an Australasian paediatric palliative care national reference group, (2) healthcare professionals associated with a local paediatric palliative care service, and (3) family members who were users of the same local service.
RESULTS: Through multi-phase consultation across participant groups, the draft question prompt list was refined progressively to 28 items, split across two booklets to allow end-of-life items to be provided separately, and reconceptualised as a discussion prompt list rather than a question prompt list.
CONCLUSION: By involving representatives of major stakeholder groups, this study has facilitated the design of a prompt list suited to the circumstances of paediatric palliative care. Future research should trial the effectiveness of this resource.
With the growing number of individuals with Autism Spectrum Disorder (ASD) reaching the age of consent, health-care providers must be prepared to bridge gaps in their knowledge of ASD. This is especially true for clinicians who may have to determine if a person with ASD has the capacity to engage in end-of-life decision making, complete advance directives, or act as a surrogate decision maker for someone else. This paper provides an overview of the unique characteristics of autism as related to the communication, cognitive processing, and the capability to participate in advance care planning and, when acting as a surrogate decision maker, to consider the values and preferences of others. In addition, we examine the roles and responsibilities of clinician as facilitator of shared health-care decision making communication with the individual who has autism. Consideration is given to determining capacity, planning for atypical responses, the impact or lack of influence of the framing effect, and strategies for presenting information. Finally, we will offer health-care providers information and examples for adapting their existing end-of-life decision-making tools and conversation guides to meet the communication needs of persons with ASD.
Patients with limited English proficiency (LEP) experience disparities in end-of-life decision making and advance care planning. Our objective was to conduct a systematic review to assess the literature about interventions addressing these issues. Our search strategy was built around end-of-life (EOL), LEP, ACP, and goals of care. The databases included Ovid MEDLINE(R), and Epub Ahead of Print, In-Process & Other Non-Indexed Citations and Daily from 1946 to November 9, 2018, Ovid EMBASE. Eight studies from the US and Australia were included (seven studies in Spanish and one study in Greek and Italian). Interventions used trained personnel, video images, web-based programs, and written materials. Interventions were associated with increased advance directive completion and decreased preferences for some life-prolonging treatments. Interventions were deemed to be feasible and acceptable. Few interventions exist to improve end-of-life care for patients with LEP. Data are limited regarding intervention effectiveness.