Background: Diverse cultures and social contexts can exhibit different values, religious meaning systems, social norms concerned with social responsibility and interpersonal and family relations. These factors play an essential role in individuals’ decisions and preferences for end-of-life care.
Aims: To explore Taiwanese adults’ perspectives on the influences of cultural, social and contextual factors on preferences for end-of-life care.
Methods: A semi-structured face-to-face interview approach and content analysis were used. A total of 16 adults were recruited.
Findings: Major themes identified as influencing factors included social, cultural and religious aspects, professional and community resources, perceptions about end-of-life services and attitudes toward death and dying.
Discussion: This suggests that people’s end-of-life preferences can be influenced by social and cultural norms, the adequacy of systems for advance care planning, knowledge about advance directives and palliative care, and emotional reactions toward death and dying.
Conclusions: Findings provided insight into adults’ perspectives on how cultural, social norms and religious values and professional support shape individuals’ beliefs and attitudes toward death and dying as well as in end-of-life decision making. These findings contribute to our understanding of adults’ end-of-life preferences and provide guidance for health professionals and communities in assisting Taiwanese people plan for the end of life.
Objectives: Pre-emptive conversations (PCs) about end-of-life (EOL) preferences are beneficial for both elderly people and their families to understand and share the preferences. However, the factors which promote/inhibit PCs have yet to be clarified. We therefore aimed to determine the factors related to having PCs with hypothesis that age, subjective economic status and subjective health status are associated with having PC experience.
Design: A cross-sectional study administering a questionnaire and using stratified random sampling by gender and region.
Setting: Residents aged 65 years or older who were not receiving nursing care as of 1 November 2016, were extracted from the Japanese long-term care insurance system registry in Koriyama City, Fukushima Prefecture, Japan.
Participants: 1575 participants (717 males and 858 females).
Outcome: Presence or absence of PC experience with family or friends (yes/no).
Results: The mean age of the participants was 74.0 years. A multivariable logistic-regression analysis revealed that having PC experience was significantly associated with gender (OR=1.907; 95% CI=1.556 to 2.337; p<0.001), subjective economic status (OR=0.832; 95% CI=0.716 to 0.966; p=0.016) and subjective happiness (OR=0.926; 95% CI=0.880 to 0.973; p=0.003).
Conclusions: Poor subjective economic status of elderly people may result in the absence of EOL conversation experience with their families and friends, hindering the elderly from sharing and understanding the EOL preferences. To promote PCs about EOL, gerontology and public health professionals should give special consideration to the subjective economic status of elderly people.
Significant criticisms have been raised regarding the ethical and psychological basis of living wills. Various solutions to address these criticisms have been advanced, such as the use of surrogate decision makers alone or data science-driven algorithms. These proposals share a fundamental weakness: they focus on resolving the problems of living wills, and, in the process, lose sight of the underlying ethical principle of advance care planning, autonomy. By suggesting that the same sweeping solutions, without opportunities for choice, be applied to all, individual patients are treated as population-level groups-as a theoretical patient who represents a population, not the specific patient crafting his or her individualized future care plans. Instead, advance care planning can be improved through a multimodal approach that both mitigates cognitive biases and allows for customization of the decision-making process by allowing for the incorporation of a variety of methods of advance care planning.
Objective: This study aimed to clarify visiting nurses' perspectives on critical practices to ensure they could advocate for patients who prefer to die at home.
Methods: Sixteen nurses, working at home-visit nursing agencies in Japan, participated in this study. Data were generated by interviews with the nurses and participant observations from nursing home-visits for six end-of-life cancer patients and were analyzed using content analysis.
Results: Five themes emerged: (1) nursing assessment, (2) support for comfortable daily life of the patient and their family, (3) advocating for the patient's views about continuing homecare until death, (4) supporting the patient's preparedness for death, and (5) coordination with other health professionals and related facilities for a comfortable environment for the patient. In addition, the nurses sometimes used humorous responses to death-related work to change the patient's melancholy thoughts.
Conclusion: The present study found that the participants advocated for the patient's views about continuing homecare until death while coordinating views between the patient and their family; they further supported the patient's daily life while helping them prepare for death to achieve their wish for death at home. In addition, our study uncovered the visiting nurses' unconscious practical wisdom of using humorous responses to death-related work to alleviate the patients' feelings of hopelessness. To develop practical wisdom for using humor effectively in end-of-life care, nurses need to verbalize unconscious practices, and accumulate empirical knowledge about nursing interventions using humor, including cultural attitudes, through case study analysis.
OBJECTIVES: Many older adult patients want to be treated aggressively for reversible conditions, even when their current quality of life is limited; however, most standard living wills focus on the very end of life and provide little guidance to acute care providers (ACPs) should their older adult patient be admitted with a potentially treatable acute condition and temporarily lose capacity. We developed what we believe is a more informational and directive living will for this population. We sought to determine whether ACPs would find our pilot living will more helpful when caring for their older adult patients.
METHODS: Convenience sample of members of the Society of Hospital Medicine (SHM). Respondents were asked to compare the pilot living will with their state form and then answer five attitudinal questions.
RESULTS: In total, 125 providers from 39 states completed the survey: 86% indicated that the pilot living will better helped them understand their patients' general end-of-life preferences, 87.5% indicated the pilot living will would be more helpful in making specific treatment decisions for their patients, and 85% indicated the pilot living will would better facilitate end-of-life discussions with surrogates.
CONCLUSIONS: Our results suggest that it is possible to design a functional advanced directive that better reflects the wishes of the older adult patient who wants to be treated aggressively in selected clinical situations. By more clearly defining these wishes, acute providers (eg, hospitalists, intensivists) can make more informed, patient-centered recommendations to surrogates.
BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and end-of-life decision-making preferences.
AIM: (1) To examine adolescent/young adult decision-making involvement specific to heart transplant listing, and (2) to characterize their preferences specific to medical and end-of-life decision making.
DESIGN: This cross-sectional research study utilized survey methods. Data were collected from October 2016 to March 2018.
SETTING/PARTICIPANTS: Twelve adolescent and young adult patients listed for heart transplant (ages = 12-19 years) and one parent for each were enrolled at a single-center, US children's hospital.
RESULTS: Consistent with their preferences, the majority of adolescent/young adult participants (82%) perceived a high level of involvement in the decision to be listed for transplant. Patient involvement in this decision was primarily by way of seeking advice or information from their parents and being asked to express their opinion from parents. Despite a preference among patients to discuss their prognosis and be involved in end-of-life decision making if seriously ill, only 42% of patients had discussed their end-of-life wishes with anyone. Few parents recounted having such discussions. Preferences regarding the timing and nature of end-of-life decision-making discussions varied.
CONCLUSIONS: Although young people are involved in the decision to pursue heart transplantation, little attention is paid to involving them in discussions regarding end-of-life decision making in a manner that is consistent with individual preferences.
OBJECTIVES: The aim of this study was to investigate factors predictive for 'death at home' for patients admitted to an advanced medical home care unit in Stockholm, Sweden, with a focus on possible gender differences. In addition, place of death in relation to the patient's wishes was studied.
METHOD: A retrospective review of medical records of all 456 deceased patients, 233 men and 223 women, admitted to the unit during 2017 was performed. Data on age, diagnosis, living conditions, Swedish language skills, desired place of death (if stated) and place of death were retrieved from the patients' charts.
RESULTS: A total of 114 of 456 patients died at home (25%). The probability of 'death at home' was independent of gender, age, diagnosis, living conditions and Swedish language skills. In a binary logistic regression model, the only factor significantly associated with death at home was 'the wish to die at home' (p<0.001). In the study population, 154 patients (34%) had expressed a preferred place of death, 116 (75%) wanted to die at home and 38 (25%) wanted to die in hospice. Of all patients who expressed a preferred place of death, 80% (n=123) had their wishes fulfilled and there were no differences between the sexes.
CONCLUSION: This study indicates equal opportunities regarding the possibility to die at home for patients admitted to advanced medical home care. It emphasises the importance of asking patients where they want to be at the end of life, as it was the foremost prognostic factor for place of death.
Context: Older and seriously ill Australians are often admitted to hospital in the last year of their life. The extent to which these individuals have considered important aspects of end-of-life (EOL) care, including location in which care is provided, goals of care, and involvement of others in decision making, is unclear.
Objectives: To determine, in a sample of older and seriously ill Australian inpatients, preferences regarding location in which they receive EOL care and reasons for their choice; who is involved in EOL decisions; disclosure of life expectancy; goals of care; and voluntary-assisted dying.
Methods: Cross-sectional face-to-face survey interviews conducted with 186 (80% consent) inpatients in a tertiary referral center aged 80 years and older; or aged 55 years and older with progressive chronic disease(s); or with physician-estimated life expectancy of less than 12 months.
Results: Home care was preferred (69%), given the perceived availability of family/friends, familiarity of environment, and likelihood of having wishes respected. If unable to make decisions themselves, inpatients wanted family to decide care alone (31%) or with a doctor (49%). Of those who had not discussed life expectancy, 23% wished to. Most (76%) preferred care that maintained quality of life and relieved symptoms. There was some agreement for being sedated at the EOL (63%) and able to access medication to end life (43%).
Conclusion: Most inpatients would prefer EOL care that maintains quality and relieves suffering compared with life extension and to receive this care at home. Family involvement in resolution and documentation of EOL decisions should be prioritized.
Patients at end of life often express a desire to travel, and many have requests that go unfulfilled. Studies show that a majority of patients have a desire to return to their place of birth to die when presented with the option, yet goals-of-care conversations do not routinely include travel desires for numerous reasons. Patients faced with a life-limiting illness are at greater risk of depression, withdrawal, denial, anger, and feelings of helplessness. When palliative care teams assist patients with end-of-life travel, they empower them with a greater sense of control over the dying process. Improving goals-of-care conversations regarding medical travel begins with well-developed communication skills and a knowledge of available options. This article primarily focuses on the recommendation of medical travel as a goals-of-care comfort measure for the palliative care patient.
When a patient lacks decision-making capacity, then according to standard clinical ethics practice in the United States, the health care team should seek guidance from a surrogate decision-maker, either previously selected by the patient or appointed by the courts. If there are no surrogates willing or able to exercise substituted judgment, then the team is to choose interventions that promote a patient's best interests. We argue that, even when there is input from a surrogate, patient preferences should be an additional source of guidance for decisions about patients who lack decision-making capacity. Our proposal builds on other efforts to help patients who lack decision-making capacity provide input into decisions about their care. For example, "supported," "assisted," or "guided" decision-making models reflect a commitment to humanistic patient engagement and create a more supportive process for patients, families, and health care teams. But often, they are supportive processes for guiding a patient toward a decision that the surrogate or team believes to be in the patient's medical best interests. Another approach holds that taking seriously the preferences of such a patient can help surrogates develop a better account of what the patient's treatment choices would have been if the patient had retained decision-making capacity; the surrogate then must try to integrate features of the patient's formerly rational self with the preferences of the patient's currently compromised self. Patients who lack decision-making capacity are well served by these efforts to solicit and use their preferences to promote best interests or to craft would-be autonomous patient images for use by surrogates. However, we go further: the moral reasons for valuing the preferences of patients without decision-making capacity are not reducible to either best-interests or (surrogate) autonomy considerations but can be grounded in the values of liberty and respect for persons. This has important consequences for treatment decisions involving these vulnerable patients.
PURPOSE: Patients make treatment decisions based not only on what they want, but what they think their families want. Discordance in such perceived preferences may therefore pose challenges for advance care planning. This study examines discordance in preference for life-extending care versus comfort-focused care and its association with do-not-resuscitate (DNR) order placement.
METHODS: One hundred eighty-nine patients with advanced cancers refractory to at least one chemotherapy regimen were enrolled in a multisite observational study. In structured interviews, patients reported their preference for treatment maximizing either life extension or comfort; patients also indicated their perception of their families' preference. DNR placement was reported by patients and verified using medical records.
RESULTS: Approximately 23% of patients (n = 43) perceived discordance between their preference and their families’ preference. Patients who perceived discordance were less likely to have completed a DNR compared with those who perceived concordance, even after controlling for relevant confounds (odds ratio = .35; P = .02). Subgroups of discordance and concordance showed varying DNR placement rates ( 2, 19.95; P < .001). DNR placement rate was lowest among discordant subgroups, where there was either a personal (26.7%; four of 15) or family preference for comfort care (28.6%; eight of 28), followed by patients who perceived concordance for wanting life-extending care (34.5%; 29 of 84) and by patients who perceived concordance in wanting comfort-focused care (66.1%; 41 of 62).
CONCLUSION: Many patients may perceive discordance between personal and family treatment preferences, posing impediments to advance care planning. Such patients may benefit from additional decision support.
BACKGROUND: Patient-centered care for older adults with CKD requires communication about patient's values, goals of care, and treatment preferences. Eliciting this information requires tools that patients understand and that enable effective communication about their care preferences.
METHODS: Nephrology clinic patients age = 60 years with stage 4 or 5 nondialysis-dependent CKD selected one of four responses to the question, "If you had a serious illness, what would be important to you?" Condensed versions of the options were, "Live as long as possible;" "Try treatments, but do not suffer;" "Focus on comfort;" or "Unsure." Patients also completed a validated health outcome prioritization tool and an instrument determining the acceptability of end-of-life scenarios. Patient responses to the three tools were compared.
RESULTS: Of the 382 participants, 35% (n=134) selected "Try treatments, but do not suffer;" 33% (n=126) chose "Focus on comfort;" 20% (n=75) opted for "Live as long as possible;" and 12% (n=47) selected "Unsure." Answers were associated with patients' first health outcome priority and acceptability of end-of-life scenarios. One third of patients with a preference to "Focus on comfort" reported that a life on dialysis would not be worth living compared with 5% of those who chose "Live as long as possible" (P<0.001). About 90% of patients agreed to share their preferences with their providers.
CONCLUSIONS: Older adults with advanced CKD have diverse treatment preferences and want to share them. A single treatment preference question correlated well with longer, validated health preference tools and may provide a point of entry for discussions about patient's treatment goals.
INTRODUCTION: The proportion of hospitals with specialist palliative care services in the USA has increased substantially over the past decade. Severe acute brain injury presents with unique challenges, especially regarding quality of life. The growth and increased recognition of neurocritical care as a subspecialty has not been paralleled by studies regarding how best to integrate palliative care for this unique patient population. Thus, we surveyed members of the Neurocritical Care Society (NCS) to explore current practice patterns, perceptions, and preferences regarding integration of palliative care in the neurological intensive care unit (Neuro-ICU).
METHODS: We created a 19-item survey using SurveyMonkey to assess practice patterns, perceptions, and preferences of neurointensivists regarding integration of palliative care in the Neuro-ICU. The survey, approved by the NCS research committee, was distributed to all active members of the NCS.
RESULTS: A total of 424 NCS members representing 19% of the 2200 list serve members completed the survey. The majority (58%) of respondents were attending physicians, who worked primarily in a dedicated Neuro-ICU (67%), at university affiliated academic medical centers (65%). Palliative care consultations are utilized infrequently (< 11%) by the majority of the respondents (59%). The most common indication for a palliative consultation was to discuss goals of care and make treatment decisions (73%). A large majority (77%) either agreed or strongly agreed that palliative care services were utilized in the management of difficult cases apart from discussions regarding withdrawal of life sustaining therapy. Palliative care needs of Neuro-ICU patients were considered different from patients in other ICUs by the majority of respondents (66%).
CONCLUSION: Our study provides insights into the current perceptions, practice patterns, and preferences of neurointensivists as it relates to palliative care consultation in the Neuro-ICU.
Inadequate communication about serious illness care preferences affects patients, families, health care providers, and health care systems. Many patient and system barriers prevent comprehensive serious illness communication. The purpose of this evidence-based practice project was to provide a structure within a primary care clinic to facilitate conversations with seriously ill individuals about their care preferences that (a) was adaptable to clinic workflow, (b) improved providers’ perception of the care conversation experience, (c) improved documentation of care preferences, and (d) provided a comfortable and helpful experience. The Johns Hopkins Nursing Evidence-Based Practice model and Serious Illness Care Program were used to address provider and system barriers to conversations about care preferences. Program interventions included training providers and staff; identifying patients at risk for high symptom burden and mortality; integrating system interventions; and evaluating outcomes. Providers completed training, after which a 5-week pilot practice change was conducted. Provider perceptions of conversations after implementation were positive. During the pilot, 3 serious illness care conversations were initiated with additional patients prepared for future conversations using an information sheet and introduction to the conversation.
This qualitative study asked 70 mothers and 26 fathers 3 open-ended questions on what they wish they had and had not done and on coping 2, 4, 6, and 13 months after their infant’s/child’s neonatal intensive care unit/pediatric intensive care unit/emergency department death. Mothers wished they spent more time with the child, chosen different treatments, advocated for care changes, and allowed the child his or her wishes. Fathers wished they had spent more time with the child and gotten care earlier. Mothers wished they had not agreed to child’s surgery/treatment, taken her own actions (self-blame), and left the hospital before the death. Fathers wished they had not been so hard on the child, agreed with doctors/treatment, and taken own actions (self-blame). Religious activities, caring for herself, and talking about/with the deceased child were the most frequent mothers’ coping strategies; those of the fathers were caring for self and religious activities. Both mothers and fathers wished they had spent more time with their child and had not agreed to surgery/treatments. The most frequent coping was caring for themselves, likely to care for the family and retain employment. Nurses must be sensitive to parents’ need for time with their infant/child before and after death and to receive information on child’s treatments at levels and in languages they understand.
Background: Patients with heart failure (HF) have not been considered as major beneficiaries of advance directives (ADs). We analyzed factors affecting the preferences for the adoption of ADs by patients with HF and their caregivers.
Methods and Results: Seventy-one patient (mean age: 68 years)–caregiver (mean age: 55 years) dyads were enrolled during clinic visits for routine care at a single institution and completed questionnaires during in-person visits. Cohen's kappa coefficients and generalized estimating equation models were used to analyze the data. The agreement on dyadic perspectives for aggressive treatments was poor or fair, whereas agreement relative to hospice care was moderate (k = 0.42, 95% confidence interval = 0.087–0.754). Both patients and caregivers demonstrated poor knowledge of ADs and similar levels of perceived benefits and barriers to advance care planning. However, the caregivers had more positive attitudes toward ADs than patients. Patients and caregivers who were older and/or males had greater odds of preferring aggressive treatments and/or hospice care. Further, those with depressive symptoms had lower odds of preferring hospice care.
Conclusion: The dyadic agreement was moderately high only for hospice care preferences. Both patients and caregivers demonstrated knowledge of shortfalls regarding ADs. Timely AD discussions could increase dyadic agreement and enhance informed and shared decision-making regarding medical care.
OBJECTIVE: This is an observational study on well-being and end-of-life preferences in patients with amyotrophic lateral sclerosis (ALS) in the locked-in state (LIS) in a Polish sample within the EU Joint Programme-Neurodegenerative Disease Research study NEEDSinALS (NEEDSinALS.com).
METHODS: In this cross-sectional study, patients with ALS in LIS (n = 19) were interviewed on well-being (quality of life, depression) as a measure of psychosocial adaptation, coping mechanisms, and preferences towards life-sustaining treatments (ventilation, percutaneous endoscopic gastroscopy) and hastened death. Also, clinical data were recorded (ALS Functional Rating Scale-revised version). Standardized questionnaires (Anamnestic Comparative Self-Assessment [ACSA], Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), ALS Depression Inventory-12 items [ADI-12], schedule of attitudes toward hastened death [SAHD], Motor Neuron Disease Coping Scale) were used, which were digitally transcribed; answers were provided via eye-tracking control. In addition, caregivers were asked to judge patients' well-being.
RESULTS: The majority of patients had an ACSA score >0 and a SEIQoL score >50% (indicating positive quality of life) and ADI-12 <29 (indicating no clinically relevant depression). Physical function did not reflect subjective well-being; even more, those with no residual physical function had a positive well-being. All patients would again choose the life-sustaining techniques they currently used and their wish for hastened death was low (SAHD <10). Caregivers significantly underestimated patient's well-being.
INTERPRETATION: Some patients with ALS in LIS maintain a high sense of well-being despite severe physical restrictions. They are content with their life-sustaining treatments and have a strong will to live, which both may be underestimated by their families and public opinion.
GPs should do more to help patients plan for their care and treatment because of a lack of awareness about advance decisions, says a report from the charity Compassion in Dying.
Advance decisions are documents that allow people to state in what circumstances they would want to refuse future treatment if they become seriously ill and cannot make or convey such decisions. Formerly known as “living wills,” advance decisions gained legal status in 2005.
Aim: Patients with cancer have varied preferences for involvement in decision-making. We sought older adults' preferred and perceived roles in decision-making about palliative chemotherapy; priorities; and information received and desired.
Methods: Patients =65y who had made a decision about palliative chemotherapy with an oncologist completed a written questionnaire. Preferred and perceived decision-making roles were assessed by the Control Preferences Scale. Wilcoxon rank-sum tests evaluated associations with preferred role. Factors important in decision-making were rated and ranked, and receipt of, and desire for information was described.
Results: Characteristics of the 179 respondents: median age 74y, male (64%), having chemotherapy (83%), vulnerable (Vulnerable Elders Survey-13 score = 3) (52%). Preferred decision-making roles (n = 173) were active in 39%, collaborative in 27%, and passive in 35%. Perceived decision-making roles (n = 172) were active in 42%, collaborative in 22%, and passive in 36% and matched the preferred role for 63% of patients. Associated with preference for an active role: being single/widowed (p = .004, OR = 1.49), having declined chemotherapy (p = .02, OR = 2.00). Ranked most important (n = 159) were “doing everything possible” (30%), “my doctor's recommendation” (26%), “my quality of life” (20%), and “living longer” (15%). A minority expected chemotherapy to cure their cancer (14%). Most had discussed expectations of cure (70%), side effects (88%) and benefits (82%) of chemotherapy. Fewer had received quantitative prognostic information (49%) than desired this information (67%).
Conclusion: Older adults exhibited a range of preferences for involvement in decision-making about palliative chemotherapy. Oncologists should seek patients' decision-making preferences, priorities, and information needs when discussing palliative chemotherapy.
Although recognized as best practice, regular integration of shared decision-making (SDM) approaches between patients and oncologists remains an elusive goal. It is clear that usable, feasible, and practical tools are needed to drive increased SDM in oncology. To address this goal, we convened a multidisciplinary collaborative inclusive of experts across the health-care delivery ecosystem to identify key principles in designing and testing processes to promote SDM in routine oncology practice. In this commentary, we describe 3 best practices for addressing challenges associated with implementing SDM that emerged from a multidisciplinary collaborative: (1) engagement of diverse stakeholders who have interest in SDM, (2) development of the necessary roadmap and consideration of the infrastructure needed for engendring patient engagement in decision-making. We believe these 3 principles are critical to the success of creating SDM tools to be utilized both within and outside of clinical practice. We are optimistic that shared use across settings will support adoption of this tool and overcome barriers to implementing SDM within busy clinical workflows. Ultimately, we hope that this work will offer new perspectives on what is important to patients and provide an important impetus for leveraging patient preferences and values in decision-making.