PURPOSE: Although some research has been done on end-of-life (EOL) preferences and wishes, our knowledge of racial differences in the EOL wishes of non-Hispanic White and non-Hispanic Black middle-aged and older adults is limited. Previous studies exploring such racial differences have focused mainly on EOL decision-making as reflected in advance healthcare directives concerning life-sustaining medical treatment. In need of examination are aspects of EOL care that are not decision-based and therefore not normally covered by written advance healthcare directives. This study focuses on racial differences in non-decision-based aspects of EOL care, that is, EOL care that incorporates patients' beliefs, culture, or religion.
AIM: To test the combined effects of race, socioeconomic status, health status, spirituality, perceived discrimination and medical mistrust on the EOL non-decision-based desires and wishes of a representative sample of non-Hispanic White and non-Hispanic Black older California adults.
METHODS: This cross-sectional study used data from the Survey of California Adults on Serious Illness and End-of-Life 2019. To perform data analysis, we used multiple logistic regression models.
RESULTS: Non-Hispanic Blacks reported more EOL non-decision-based desires and wishes than non-Hispanic Whites. In addition to gender, age, and education other determinants of EOL non-decision-based medical desires and wishes included perceived and objective health status, spirituality, and medical trust. Poverty level, perceived discrimination did not correlate with EOL medical wishes.
CONCLUSION: Non-Hispanic Blacks desired a closer relationship with their providers as well as a higher level of respect for their cultural beliefs and values from their providers compared with their White counterparts. Awareness, understanding, and respecting the cultural beliefs and values of older non-Hispanic Black patients, that usually are seen by non-Hispanic Black providers, is the first step for meaningful relationship between non-Hispanic Black patients and their providers that directly improve the end-of-life quality of life for this segment of our population.
Le résultat d'une enquête menée pour les Etats généraux de l'écoute auprès des bénévoles de l'association SOS Amitié. Leur cadre d'action, les qualités requises et les méthodes employées, inspirées pour la plupart des préceptes de Carl Rogers, sont exposés. Le rôle de l'écoute humaine dans la société contemporaine est ainsi démontré.
The WHO has included the spiritual dimension in its definition of palliative care since 1990, but this dimension is frequently confused with notions of religion. Yet, the spiritual suffering experienced by palliative care patients is primarily a matter of existential suffering. The objective of this study was to examine the ways in which the existential dimension was manifested in the experiences of those present in a palliative care unit. This anthropological monograph was conducted in a palliative care unit in a French University Hospital. The existential dimension appears to reside in the connections between individuals and the proximity of death appears to shed new light on the meaning of life. The mirror effect of death on life, could serve to encourage greater appreciation of the value of our connections with others, and the desire to take care of others, which offers new insight into forms of solidarity and social organisation.
BACKGROUND: African Americans have low engagement in advance care planning (ACP). This has been attributed to healthcare distrust and skepticism about ACP. A better understanding of these attitudes is needed to address health disparities related to end-of-life care.
OBJECTIVE: To explore the ACP-related values and beliefs of diverse African American communities across the USA and then the perceived value of an inexpensive end-of-life conversational game.
DESIGN: Prospective, convergent, mixed methods cohort study involving fifteen underserved, African American communities across the USA.
PARTICIPANTS: Of the 428 who attended events at purposively sampled sites, 90% consented to the research; 37% participated in one of 15 focus groups (n = 141).
INTERVENTION: An end-of-life conversation game, played in groups of 4-6.
MAIN MEASURES: The validated, 7-item ACP values and beliefs questionnaire (scaled 7 = least skeptical, 49 = most skeptical) was administered pre-game. Post-game focus groups explored perceptions about ACP and the intervention.
KEY RESULTS: Participants had positive attitudes (low skepticism) about ACP with a median score of 12.00 (7.00, 20.00). Values and beliefs did not significantly differ by geographical region; however, rural areas were observed to be slightly more skeptical than urban areas (median score 14.00 vs. 11.00, p = 0.002). Themes from focus groups converged with survey data showing participants valued the ACP process and consider further engagement in ACP to be worthwhile. Subthemes emphasized the need for and value of ACP.
CONCLUSIONS: Skepticism about ACP may contribute to low rates of ACP engagement in underserved African American communities. The positive attitudes uncovered in our study either negate previous findings or suggest reduced skepticism.
BACKGROUND: In ageing Western societies, many older persons live with and die from cancer. Despite that present-day healthcare aims to be patient-centered, scientific literature has little knowledge to offer about how cancer and its treatment impact older persons' various outlooks on life and underlying life values. Therefore, the aims of this paper are to: 1) describe outlooks on life and life values of older people (= 70) living with incurable cancer; 2) elicit how healthcare professionals react and respond to these.
METHODS: Semi-structured qualitative interviews with 12 older persons with advanced cancer and two group interviews with healthcare professionals were held and followed by an analysis with a grounded theory approach.
RESULTS: Several themes and subthemes emerged from the patient interview study: a) handling incurable cancer (the anticipatory outlook on "a reduced life", hope and, coping with an unpredictable disease) b) being supported by others ("being there", leaving a legacy, and having reliable healthcare professionals) and; c) making end-of-life choices (anticipatory fears, and place of death). The group interviews explained how healthcare professionals respond to the abovementioned themes in palliative care practice. Some barriers for (open) communication were expressed too by the latter, e.g., lack of continuity of care and advance care planning, and patients' humble attitudes.
CONCLUSIONS: Older adults living with incurable cancer showed particular outlooks on life and life values regarding advanced cancer and the accompanying last phase of life. This paper could support healthcare professionals and patients in jointly exploring and formulating these outlooks and values in the light of treatment plans.
There is a called-for shift to an upstream provision of palliative care as an overall care approach within a health equity perspective. Our research explored how nurses in psychiatry engage with aging patients and mortality to discern enactment of ethical dimensions of care. Drawing from tenets of interpretative phenomenological analysis, forensic and geriatric psychiatry registered nurses working at a mental health facility in eastern Ontario completed interviews for analysis. Nurses engaged with mortality through a process of recognition and through the affirmation of their values. The affirmed values are aligned with the palliative care approach and within an ethics of finitude lens in that their enactment is partly premised on the recognition of patients’ accumulated losses related to human facticities (social, temporal, mortal). This research underscores preliminary insights on a process identifying care practices aligned with the palliative approach and possibilities for expanding upon an ethics of finitude lens.
Background: Substitute decision-makers (SDMs) make decisions on behalf of patients who do not have capacity, in line with previously expressed wishes, values and beliefs. However, miscommunications and poor awareness of previous wishes often lead to inappropriate care. Increasing public preparedness to communicate on behalf of loved ones may improve care in patients requiring an SDM.
Methods: We conducted an online survey in January 2019 with a representative sample of the Canadian population. The primary outcome was self-reported preparedness to be an SDM. The secondary outcome was support for a high school curriculum on the role of SDMs. The effect of socio-demographics, known enablers and barriers to acting as an SDM, and attitudes towards a high school curriculum were assessed using multivariate analysis.
Results: Of 1,000 participants, 53.1% felt prepared to be an SDM, and 75.4% stated they understood their loved one’s values. However, only 55.6% reported having had a meaningful conversation with their loved one about values and wishes, and only 61.7% reported understanding the SDM role. Engagement in advance care planning for oneself was low (23.1%). Age, experience, training and comfort with communication were associated with preparedness in our multivariate analysis. A high school curriculum was supported by 61.1% of respondents, with 28.3% neutral and 10.6% against it.
Interpretation: There is a gap between perceived and actual preparedness to be an SDM. Many report understanding their loved one’s values yet have not asked them about wishes in illness or end of life. The majority of respondents support high school education to improve preparedness.
Background: Decision making regarding the treatment of neonates with poor prognoses is difficult for healthcare staff working in the neonatal intensive care unit (NICU). This study aimed to investigate the attitudes of physicians and nurses about the value of life and ethical decision making when encountering neonates with poor prognosis in the NICU.
Methods: This cross-sectional study was conducted in five NICUs of five hospitals in Tehran city, Iran. The attitudes of 144 pediatricians, gynecologists and nurses were assessed using the questionnaire of attitude toward the value of life and agreement on intensive care management based on three hypothetical case scenarios of neonates with poor prognosis. Data were analyzed using descriptive and inferential statistics via the SPSS software.
Results: The negative agreement on the no initiation of intensive care measures and the discontinuation of resuscitation in neonates with poor prognosis was more than the positive agreement. Also, various factors influenced the participants' decision making for the provision of care to neonates. Regarding the case scenarios, the participants agreed on the provision of aggressive, conservative, and palliative care with various frequencies. This study confirms the importance of healthcare providers' perspectives and their impacts on ethical decision making. The participants favored the value or sacredness of life and agreed on the use of all therapeutic measures for saving the lives of neonates with poor prognosis.
Conclusion: More studies are required to improve our understandings of factors influencing ethical decision making by healthcare providers when encountering neonates with poor prognosis in NICUs.
This insightful study examines the deeply personal and heart-wrenching tensions among financial considerations, emotional attachments, and moral arguments that motivate end-of-life decisions.
America’s health care system was built on the principle that life should be prolonged whenever possible, regardless of the costs. This commitment has often meant that patients spend their last days suffering from heroic interventions that extend their life by only weeks or months. Increasingly, this approach to end-of-life care is coming under scrutiny, from a moral as well as a financial perspective. Sociologist Roi Livne documents the rise and effectiveness of hospice and palliative care, and growing acceptance of the idea that a life consumed by suffering may not be worth living.
Values at the End of Life combines an in-depth historical analysis with an extensive study conducted in three hospitals, where Livne observed terminally ill patients, their families, and caregivers negotiating treatment. Livne describes the ambivalent, conflicted moments when people articulate and act on their moral intuitions about dying. Interviews with medical staff allowed him to isolate the strategies clinicians use to help families understand their options. As Livne discovered, clinicians are advancing the idea that invasive, expensive hospital procedures often compound a patient’s suffering. Affluent, educated families were more readily persuaded by this moral calculus than those of less means.
Once defiant of death—or even in denial—many American families and professionals in the health care system are beginning to embrace the notion that less treatment in the end may be better treatment.
Background: Patients with advanced cancer for whom standard systemic treatment is no longer available may be offered participation in early phase clinical trials. In the decision making process, both medical-technical information and patient values and preferences are important. Since patients report decisional conflict after deciding on participation in these trials, improving the decision making process is essential. We aim to develop and evaluate an Online Value Clarification Tool (OnVaCT) to assist patients in clarifying their values around this end-of-life decision. This improved sharing of values is hypothesized to support medical oncologists in tailoring their information to individual patients’ needs and, consequently, to support patients in taking decisions in line with their values and reduce decisional conflict.
Methods: In the first part, patients’ values and preferences and medical oncologists’ views hereupon will be explored in interviews and focus groups to build a first prototype OnVaCT using digital communication (serious gaming). Next, we will test feasibility during think aloud sessions, to deliver a ready-to-implement OnVaCT. In the second part, the OnVaCT, with accompanied training module, will be evaluated in a pre-test (12–18 months before implementation) post-test (12–18 months after implementation) study in three major Dutch cancer centres. We will include 276 patients (> 18 years) with advanced cancer for whom standard systemic therapy is no longer available, and who are referred for participation in early phase clinical trials. The first consultation will be recorded to analyse patient-physician communication regarding the discussion of patients’ values and the decision making process. Three weeks afterwards, decisional conflict will be measured.
Discussion: This project aims to support the discussion of patient values when considering participation in early phase clinical trials. By including patients before their first appointment with the medical oncologist and recording that consultation, we are able to link decisional conflict to the decision making process, e.g. the communication during consultation. The study faces challenges such as timely including patients within the short period between referral and first consultation. Furthermore, with new treatments being developed rapidly, molecular stratification may affect the patient populations included in the pre-test and post-test periods.
This article discusses a recent ruling by the German Federal Court concerning medical professional liability due to potentially unlawful clinically assisted nutrition and hydration (CANH) at the end of life. This case raises important ethical and legal questions regarding a third person's right to judge the value of another person's life and the concept of 'wrongful life'. In our brief report, we discuss the concepts of the 'value of life' and wrongful life, which were evoked by the court, and how these concepts apply to the present case. We examine whether and to what extent value-of-life judgements can be avoided in medical decision-making. The wrongful-life concept is crucial to the understanding of this case. It deals with the question whether life, even when suffering is involved, could ever be worse than death. The effects of this ruling on medical and legal practice in Germany are to be seen. It seems likely that it will discourage claims for compensation following life-sustaining treatment (LST). However, it is unclear to what extent physicians' decisions will be affected, especially those concerning withdrawal of CANH. We conclude that there is a risk that LST may come to be seen as the 'safe' option for the physician, and hence, as always appropriate.
Le Colloque Yves Quenneville se tient aux deux ans dans différentes régions du Québec, le plus souvent sous l'égide d'une Maison ou d'une Unité hospitalière de soins palliatifs... Ce XVIIè colloque, organisé conjointement par la Maison Victor Gadbois de Beloeil et la Maison Michel Sarrazin de Québec, se tenait cette année du 25 au 27 septembre 2019.
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BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL).
OBJECTIVE: We piloted values clarification exercises to inform resuscitation decision making and qualitatively assess perceptions of QOL.
METHODS: We conducted a mixed-method study of women with threatened periviable delivery (22 0/7-24 6/7 weeks) and their important others (IOs). Participants engaged in three values clarification activities as part of a semi-structured interview-(a) Card sorting nine conditions as an acceptable/unacceptable QOL for a child; (b) Rating/ranking seven common concerns in periviable decision making (scale 0-10, not at all to extremely important); and (c) "Agreed/disagreed" with six statements regarding end-of-life treatment, disability, and QOL. Participants were also asked to define "QOL" and describe their perceptions of a good and poor QOL for their child. Analysis was conducted using SAS version 9.4 and NVivo 12.
RESULTS: All mild disabilities were an acceptable QOL, while two-thirds of participants considered long-term mechanical ventilation unacceptable. Although pregnant women rated "Impact on Your Physical/Mental Health" (average 5.6) and IOs rated "financial Concerns" the highest (average 6.6), both groups ranked "financial Concerns" as the most important concern (median 5.0 and 6.0, respectively). Most participants agreed that "Any amount of life is better than no life at all" (pregnant women 62.1%; IOs 75.0%) and disagreed that resuscitation would cause "Too much suffering" for their child (pregnant women 71.4%; IOs 80.0%). Half were familiar with the phrase "QOL". Although the majority described a good QOL in terms of emotional well-being (eg "loved", "happy", "supported"), a poor QOL was described in terms of functionality (eg "dependent" and "confined"). Additionally, financial stability emerged as a distinctive theme when IOs discussed poor QOL.
CONCLUSION: Our study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support.
Le philosophe s'attache à définir ce qu'est la vulnérabilité et quels liens elle entretient avec la dignité de chaque homme. Qu'est-ce qui fait la valeur d'un homme : sa vulnérabilité ou sa manière de la surmonter ? Ou alors ce n'est ni l'un, ni l'autre ?
Introduction: Sick persons need doctors who understand their pathology, know how to treat their problem, and accompany them through their illness. This study aimed to synthesize the state of knowledge regarding the concept of value-based medicine (VBM) through an integrative literature review, and establish how VBM can be applied in palliative care. Areas covered: An integrative review was conducted with the keywords 'value-based medicine,' 'patient-centered care,' and 'medicina baseada em valor' (Portuguese for VBM) in PubMed and Virtual Health Library, identifying 17,189 articles in total. Of these, 10 articles met the eligibility criteria. VBM combines the highest level of technical-scientific data with patients' values. It is defined as the combination of evidence-based medicine, patient-centered care, and cost-effectiveness. Patients' values are a set of preferences, concerns, and expectations that contribute toward accommodating their needs in the treatment clinic. Expert opinion: Like VBM, palliative care focuses on patients' values and quality of life, respecting natural limits. The early development of a care plan with active participation of the patient in the face of life-threatening diseases should be encouraged and can bring peace and comfort in a person's final moments.
Proper patient selection for palliative surgery requires a challenging and often complex decision-making process. Optimally, proposed palliative procedures must be undertaken with an intent to provide the greatest possible value to patients at the end of life. This review describes the process of patient selection and identifies psychosocial, biochemical, and functional markers that can complement sound surgical judgment.
Context: Prioritizing amongst potentially conflicting end-of-life values may help patients discriminate amongst treatments and allow clinicians to align treatments with values.
Objectives: To investigate end-of-life values that patients prioritize when facing explicit trade-offs and identify predictors of patients whose values and treatment preferences seem inconsistent.
Methods: Analysis of surveys from a multi-center cluster-randomized trial of patients with serious illness. Respondents prioritized end-of-life values and identified cardiopulmonary resuscitation (CPR) preferences in two health states.
Results: Of 535 patients, 60% prioritized relief of discomfort over extending life, 17% prioritized extending life over relief of discomfort, and 23% were unsure. Patients prioritizing extending life were most likely to prefer CPR, with 93% preferring CPR in current health and 67% preferring CPR if dependent on others, compared to 69% and 21% respectively for patients prioritizing relief of discomfort, and 78% and 33% respectively for patients unsure of their prioritized value (p<0.001 for all comparisons). Among patients prioritizing relief of discomfort, preference for CPR in current health was less likely among older patients (OR 0.958 per year; 95%CI 0.935,0.981) and more likely with better self-perceived health (OR 1.402 per level of health; 95%CI 1.090,1.804).
Conclusion: Clinicians face challenges as they clarify patient values and align treatments with values. Patients' values predicted CPR preferences, but a substantial proportion of patients expressed CPR preferences that appeared potentially inconsistent with their primary value. Clinicians should question assumptions about relationships between values and CPR preferences. Further research is needed to identify ways to use values to guide treatment decisions.
The purpose of this study was to investigate choice of and comfort with health care proxy among older adults (N = 240). Results indicated that choice of proxy follows a hierarchical compensation model. Perceived similarity regarding end-of-life preferences and political views were not associated with comfort with proxy; however, perceived similarity with regards to religious values was associated with comfort with proxy. Attempts to promote advance care planning and advance directives may benefit from emphasizing individuals’ choice and autonomy but also their opportunity to designate a health care proxy who they feel represents their religious values.
BACKGROUND: Conversations with seriously ill patients about their values and goals have been associated with reduced distress, a better quality of life, and goal-concordant care near the end of life. Yet, little is known about how such conversations are conducted.
OBJECTIVE: To characterize the content of serious illness conversations and identify opportunities for improvement.
DESIGN: Qualitative analysis of audio-recorded, serious illness conversations using an evidence-based guide and obtained through a cluster randomized controlled trial in an outpatient oncology setting. Setting/Measurements: Clinicians assigned to the intervention arm received training to use the "Serious Illness Conversation Guide" to have a serious illness conversation about values and goals with advanced cancer patients. Conversations were de-identified, transcribed verbatim, and independently coded by two researchers. Key themes were analyzed.
RESULTS: A total of 25 conversations conducted by 16 clinicians were evaluated. The median conversation duration was 14 minutes (range 4-37), with clinicians speaking half of the time. Thematic analyses demonstrated five key themes: (1) supportive dialogue between patients and clinicians; (2) patients' openness to discuss emotionally challenging topics; (3) patients' willingness to articulate preferences regarding life-sustaining treatments; (4) clinicians' difficulty in responding to emotional or ambiguous patient statements; and (5) challenges in discussing prognosis.
CONCLUSIONS: Data from this exploratory study suggest that seriously ill patients are open to discussing values and goals with their clinician. Yet, clinicians may struggle when disclosing a time-based prognosis and in responding to patients' emotions. Such skills should be a focus for additional training for clinicians caring for seriously ill patients.
OBJECTIVES: To develop and validate a values clarification tool, the Short Graphic Values History Tool (GVHT), designed to support person-centred decision making during serious illness.
METHODS: The development phase included input from experts and laypersons and assessed acceptability with patients/family members. In the validation phase, we recruited additional participants into a before-after study. Our primary validation hypothesis was that the tool would reduce scores on the Decisional Conflict Scale (DCS) at 1-2 weeks of follow-up. Our secondary validation hypotheses were that the tool would improve values clarity (reduce scores) more than other DCS subscales and increase engagement in advance care planning (ACP) processes related to identification and discussion of one's values.
RESULTS: In the development phase, the tool received positive overall ratings from 22 patients/family members in hospital (mean score 4.3; 1=very poor; 5=very good) and family practice (mean score 4.5) settings. In the validation phase, we enrolled 157 patients (mean age 71.8 years) from family practice, cancer clinic and hospital settings. After tool completion, decisional conflict decreased (-6.7 points, 95% CI -11.1 to -2.3, p=0.003; 0–100 scale; N=100), with the most improvement seen in the values clarity subscale (-10.0 points, 95% CI -17.3 to -2.7, p=0.008; N=100), and the ACP-Values process score increased (+0.4 points, 95% CI 0.2 to 0.6, p=0.001; 1–5 scale; N=61).
CONCLUSIONS: The Short GVHT is acceptable to end users and has some measure of validity. Further study to evaluate its impact on decision making during serious illness is warranted.