CONTEXT: Most of the 20,000 US children dying of serious illnesses annually die in the hospital. It is unknown if this hospital death predominance reflects family wishes or systemic issues such as lack of hospice access. Hence, we need to better understand location of death preferences for children and their families.
OBJECTIVE: To better understand location of death preferences in North America, we reviewed the literature to examine the evidence for and against home death in seriously ill children (0-18years).
METHODS: We searched English articles in PubMed, PsycINFO, and Embase published 2000-2018 for articles related to parental, child/adolescent, and provider preference for death location and articles that correlated death location with bereavement or quality of life outcomes.
RESULTS: The search results (n=877 articles and n=58 abstracts of interest) were reviewed and 34 relevant articles were identified. Parent, child, and provider preferences, bereavement outcomes, and associated factors all point to some preference for home death. These findings should be interpreted with several caveats: 1) Many studies are small and prone to selection bias, 2) Not all families prefer home death and some that do are not able to achieve home death due to inadequate home support, 3) Studies of bereavement outcomes are lacking.
CONCLUSION: Adequate resources are needed to ensure children can die in their chosen location - be that home, hospital, or free-standing hospice. This review highlights research areas needed to better understand death location preference and programs and policies that will support home death for those that desire it.
BACKGROUND: Achieving the preference of place of care and place of death of patients is a quality marker in palliative care. From a recent study, around 30% of the Hong Kong general population wished to die at home. In our study, residential care home for the elderly (RCHE) was also considered as home. The objective of this study was to investigate the preference of place of care and place of death of terminal cancer patients who received palliative care service in Hong Kong. We would also investigate the facilitating and obstructing factors for home death. Common factors associating with the preference of home death would also be examined.
METHODS: A hospital-based cross-sectional questionnaire survey was conducted in a local palliative care unit from 3 December 2018 to 10 January 2019. Univariate analysis was performed to evaluate factors associated with the preference of home death.
RESULTS: Total 72 patients were recruited. Overall, 22 (30.6%) patients wished to die at home ideally. After concerning reality and different choices, only 13 (18.1%) patients preferred home death. The most common chosen facilitating factor for home death was to provide support to carers (12 patients, 92.3%). Five patients (38.5%) chose it as the most significant facilitating factor for home death. It was inconclusive for the most common chosen and most significant obstructing factor for home death. There were no statistically significant factors found to be associated with the preference of home death.
CONCLUSIONS: The preference of home death of terminal cancer patients in Hong Kong is low. We hope that understanding more of the obstructing and relieving factors for home death can facilitate home death in the future.
Background: The ethical principle of justice demands that resources be distributed equally and based on evidence. Guidelines regarding forgoing of CPR are unavailable and there is large variance in the reported rates of attempted CPR in in-hospital cardiac arrest. The main objective of this work was to study whether local culture and physician preferences may affect spur-of-the-moment decisions in unexpected in-hospital cardiac arrest.
Methods: Cross sectional questionnaire survey conducted among a convenience sample of physicians that likely comprise code team members in their country (Indonesia, Israel and Mexico). The questionnaire included details regarding respondent demographics and training, personal value judgments and preferences as well as professional experience regarding CPR and forgoing of resuscitation.
Results: Of the 675 questionnaires distributed, 617 (91.4%) were completed and returned. Country of practice and level of knowledge about resuscitation were strongly associated with avoiding CPR performance. Mexican physicians were almost twicemore likely to forgo CPR than their Israeli and Indonesian/Malaysian counterparts [OR1.84 (95% CI 1.03, 3.26), p = 0.038]. Mexican responders also placed greater emphasison personal and patient quality of life (p < 0.001). In multivariate analysis, degree of religiosity was most strongly associated with willingness to forgo CPR; orthodox respondents were more than twice more likely to report having forgone CPR for apatient they do not know than secular and observant respondents, regardless of the country of practice [OR 2.12 (95%CI 1.30, 3.46), p = 0.003].
Conclusions: In unexpected in-hospital cardiac arrest the decision to perform or withhold CPR may be affected by physician knowledge and local culture as well as personal preferences. Physician CPR training should include information regarding predictors of patient outcome at as well as emphasis on differentiating between patient and personal preferences in an emergency.
BACKGROUND: Although patients often prefer less rather than more treatment at the end of life, in the absence of contrary instructions, the medical profession's de facto position is to treat aggressively. It is unknown whether a computer-based decision aid can affect treatment choices.
METHODS: Secondary analysis of a single-center, single-blind randomized controlled trial of an advance care planning (ACP) intervention among 200 patients with stage IV cancer. Participants were randomized to intervention (Making Your Wishes Known, a values-neutral, educational, computer-based decision aid) or control (standard living will + brochure). After reading a hypothetical clinical vignette, participants were asked whether they would want 11 medical/surgical treatments in that situation (dialysis, cardiopulmonary resuscitation [CPR], ventilator, feeding tube, etc). The median number of treatments wanted by participants was compared between groups, and logistic regression was used to compare between-group likelihood of not wanting each specific treatment.
RESULTS: The median number of treatments wanted was 1 in the intervention group versus 5 in the control (P < .001). For 6 of 11 treatments, the intervention group was significantly less likely than control to want aggressive treatment. Most notably, compared to control, intervention participants were less likely to want CPR (odds ratio [OR] = 0.31), short-term mechanical ventilation (OR = 0.34), short-term dialysis (OR = 0.38), surgery (OR = 0.37), and transfusion (OR = 0.21).
CONCLUSIONS: Individuals using an educational ACP decision aid were less likely to want aggressive medical treatment than those completing standard living wills. These findings have implications not only for how to respect patient's wishes but also potentially for reducing costs at the end of life.
In the UK, life extending, end-of-life (EoL) treatments are an exception to standard cost-per-quality-adjusted life year (QALY) thresholds. This implies that greater value is placed on gaining these QALYs, than QALYs gained by the majority of other patient groups treated for anything else in the health system, even for other EoL contexts (such as quality of life (QoL) improvements alone). This paper reports a Person Trade-Off (PTO) study to test whether studies that find societal support for prioritising EoL life extensions can be explained by the severity, in terms of prospective QALYs loss, of the non-terminal comparator scenarios. Eight health scenarios were designed depicting i) QoL improvements for non-EoL temporary (T-QoL) and chronic (C-QoL) health problems and ii) QoL improvements and life extensions (LEs) for EoL health problems. Preferences were elicited from a quota sample of 901 Scottish respondents in 2016 using PTO techniques via Computer Assisted Personal Interview (CAPI). Our results indicate that there is little evidence to suggest that the severity of non-EoL comparator scenarios influence preferences for EoL treatments. Respondents do not appear to have a preference for EoL over non-EoL health gains; instead there is some indication that non-EoL health gains are preferred, particularly when compared to EoL-LE health gains. Comparing between QoL and life extending EoL scenarios, our results suggest QoL improvements are preferred to life extensions. Overall, results challenge current UK EoL policy which gives additional weight to EoL health gains, particularly EoL life extensions in the case of the National Institute for Health and Care Excellence (NICE).
OBJECTIVE: To analyse the level of knowledge and attitudes concerning living wills of nurses working in 3 hospitals of Servizo Galego de Saúde (Spain).
METHOD: Descriptive, cross-sectional, multi-centre study. Stratified sampling was carried out with nurses from the University Hospital Complexes of Ourense, Ferrol and Vigo. A sample size of 239 individuals was calculated. The data was collected during the first semester of 2018 using a validated self-administered questionnaire («Cuestionario de conocimientos y actitudes de los profesionales sanitarios en el proceso de declaración de voluntades vitales»).
RESULTS: A total of 262 nurses participated. Fifty percent believe that health professionals are obliged to inform about living wills. Two percent consider that they have enough information on the subject, and this is demonstrated in the knowledge questions, where between 61%-93% fail in the questions related to the documentation, use, and their legal aspects. Eighty-four percent consider that they have the obligation to uphold the values and beliefs of patients, and 89% that patients have the right to receive and decide on the right care. Thirteen percent consider that patients are not well informed about living wills, and 83% would recommend to chronic patients that they complete a living will.
CONCLUSIONS: Nurses have a great lack of knowledge about the legal aspects and the use of living wills, which makes them feel unable to inform their patients about them. Despite of the lack of knowledge, their attitude is positive and most of them state that they would recommend them to their patients.
Aim: To assess factors associated with home deaths in non-cancer elderly patients receiving home medical care by general practitioners.
Methods: A retrospective observational study was carried out in a primary care clinic in Tokyo. Patients who received home medical care and died between January 2010 and September 2017 were included in the analysis. Data from 119 non-cancer patients aged =65 years were collected between September and December 2017 using medical records. Patient characteristics, comorbidities, cognitive impairment, duration of home medical care, number of household members, patient's relationship with their primary caregiver, use of home care nursing services, and patient and family preference on place of death were obtained as independent variables. The main outcome was the place of death.
Results: Among the analyzed patients, 59.7% had impaired cognition and 47.1% expressed a preference for place of death. Patient–family congruence on the preferred place of death was 57.1% (kappa coefficient 0.39). Multivariate analysis showed that family preference for home death (adjusted odds ratio [aOR] 137.0, 95% CI 13.0–1443.8), cognitive impairment (aOR 4.26, 95% CI 1.12–16.2), death by non-infectious diseases (aOR 13.7, 95% CI 2.50–74.7) and living with more than two family members (aOR 4.79, 95%CI 1.38–16.7) were significantly associated with home deaths.
Conclusions: Family preference, rather than patient preference, was a facilitating factor for home death among non-cancer older patients receiving home medical care. As many patients receiving home medical care have impaired cognition, early end-of-life discussions with patients and decision-making support for caregivers should be promoted to realize their preferences on place of death.
BACKGROUND: Asking patients with palliative care needs about their end-of-life (EoL) preferences is widely acknowledged as an important aspect of EoL care. However, the issue of how to ask patients these questions has not been fully explored. Most prior studies in this area do not differentiate between patients' pragmatic preferences and ideal preferences, and between preferences concerning place of care (PoC) and place of death (PoD).
AIM: The aim of this study was to examine possible differences between pragmatic and ideal preferences of terminally ill patients, as well as differences between asking patients about preferences concerning PoC and PoD.
METHODS: Structured interviews were performed with terminally ill cancer patients at inclusion and a follow-up questionnaire was completed 1 month later. Answers were compared using kappa (k) statistics and Pearson's c2-test.
RESULTS: Among 96 cancer patients, agreement between pragmatic and ideal preferences was statistically significantly different (p=<0.001). Agreement between preferences for PoC and PoD was high (k:0.76-0.85).
CONCLUSION: Differences exist between pragmatic and ideal EoL preferences, whereas preferences for PoC and PoD were found to be similar. These findings highlight the importance of the phrasing of questions when uncovering patients' preferences for EoL care.
Me & My Wishes are facilitated, resident-centered video-recorded conversations to communicate current and end-of-life care preferences. We describe the video production process of two prototypes in the long-term care (LTC) setting and discuss lessons learned around developing this type of intervention. Partnering with an LTC community allowed us to create videos on-site, document staff time, handle any barriers with video production, and evaluate the process. In this article, we will describe the process of two residents creating Me & My Wishes videos. Both residents responded positively to viewing their edited video (about 20 min), saying the videos would be "good for family or staff to hear feelings about preferences." Staff members also responded positively to the videos. We discuss two key issues to consider: the possibility that resident preferences may change and the resources to produce and view videos.
This study aimed to determine the preferences of community-dwelling older people about information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available in a situation of serious illness with less than a year to live; and to identify factors associated with a preference for information disclosure regarding poor prognosis. The Brazilian version of the Preferences and Priorities for End of Life Care (PRISMA) questionnaire was administered face-to-face to 400 older people, living in the city of Belo Horizonte, Minas Gerais, Brazil. The main results indicated that 74.0% preferred to be informed that they had limited time left, 89.3% wished to be informed about symptoms and problems, and 96.3% about available care options. The factors associated with preferences for information about poor prognosis were: gender (women: OR = 0.446, 95% CI: 0.269-0.738) and choosing the least preferred place to die (home of a relative or friend: OR = 2.423, 95% CI: 1.130-5.198. These results show that most older people want to be informed in an advanced illness situation with less than a year to live. Health care professionals need to be prepared to anticipate news about poor prognosis and the disease.
BACKGROUND: Palliative Care (PC) is indicated in patients with functional dependency and advanced care needs in addition to those with life-threatening conditions. Older trauma patients have PC needs due to increased risk of mortality and poor long-term outcomes. We hypothesized that older trauma patients discharged alive with poor outcomes are not easily identified nor receive PC interventions.
METHODS: Prospective observational study of trauma patients 55 years or older. Patients with poor functional outcomes defined by discharge Glasgow Outcome Scale Extended (GOSE) 1-4 or death at 6-month follow-up were analyzed for rate and timing of PC interventions including goals of care conversation (GOCC), do-not-resuscitate (DNR) order, do not intubate (DNI) order, and withdrawal of life supporting measures. Logistic regression was performed for having and timing of GOCC.
RESULTS: Three hundred fifteen (54%) of 585 patients had poor outcomes. Of patients who died, 94% had GOCC compared with 31% of patients who were discharged with GOSE 3 or 4. In patients who died, 85% had DNR order, 18% had DNI order, and 56% had withdrawal of ventilator. Only 24% and 9% of patients with GOSE of 3 or 4, respectively, had DNR orders. Fifty percent of the patients who were dead at 6-month follow-up had GOCC during initial hospitalization. The median time to DNR in patients that died was 2 days compared with 5 days and 1 day in GOSE 3 and 4 (p = 0.046). Age, injury severity scale, and preexisting limited physiological reserve were predictive of having a GOCC.
CONCLUSION: The PC utilization was very high for older trauma patients who died in hospital. In contrast, the majority of those who were discharged alive, but with poor outcomes, did not have PC. Development of triggers to identify older trauma patients, who would benefit from PC, could close this gap and improve quality of care and outcomes.
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.
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.
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.
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.