Dementia is the leading cause of death in England and Wales, but traditionally it has not been considered a terminal or life-limiting condition. As a result, little significance may be placed on advance care planning (ACP) for people with dementia. Evidence suggests that most patients with advanced dementia have often not been given an opportunity to complete an advance care plan and have not had conversations with their families about their wishes and preferences at the end of life. This article reports on a literature review that aimed to explore the evidence on the introduction of ACP in achieving preferred place of care or death for people living with dementia, and reducing carer burden. The literature review found that ACP discussions have several benefits for people with dementia and their family carers, but that various factors can support or hinder such discussions. It concludes that these people and their families need to plan for end of life and suggests that ACP can increase the likelihood of achieving their preferred place of care and death and reducing decisional burden for carers.
BACKGROUND: Home is often deemed to be the preferred place of death for most patients. Knowing the factors related to the actualization of a preferred home death may yield evidence to enhance the organization and delivery of healthcare services.
OBJECTIVE: The objectives of this study were to measure the congruence between a preferred and actualized home death among cancer patients in receipt of home-based palliative care in Canada and explore predictors of actualizing a preferred home death.
METHODS: A longitudinal prospective cohort design was conducted. A total of 290 caregivers were interviewed biweekly over the course of patients' palliative care trajectory between July 2010 and August 2012. Cross-tabulations and multivariate analyses were used in the analysis.
RESULTS: Home was the most preferred place of death, and 68% of patients who had voiced a preference for home death had their wish fulfilled. Care context variables, such as living with others and the intensity of home-based nursing visits and hours of care provided by personal support workers (PSW), contributed to actualizing a preferred home death. The intensity of emergency department visits was associated with a lower likelihood of achieving a preferred home death.
CONCLUSIONS: Higher intensity of home-based nursing visits and hours of PSW care contribute to the actualization of a preferred home death.
IMPLICATIONS FOR PRACTICE: This study has implications for policy decision-makers and healthcare managers. Improving and expanding the provision of home-based PSW and nursing services in palliative home care programs may help patients to actualize a preferred home death.
BACKGROUND: Respect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients' preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of 'relational autonomy' may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.
MAIN BODY: Here, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.
CONCLUSION: This article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices.
Through a systematic review and meta-analyses, we aimed to determine predictors for place of death among children. We searched online databases for studies published between 2008 and 2019 comprising original quantitative data on predictors for place of death among children. Data regarding study design, population characteristics and results were extracted from each study. Meta-analyses were conducted using generic inverse variance method with random effects. Fourteen cohort studies met the inclusion criteria, comprising data on 106,788 decedents. Proportions of home death varied between countries and regions from 7% to 45%. Lower age was associated with higher odds of hospital death in eight studies (meta-analysis was not possible). Children categorised as non-white were less likely to die at home compared to white (pooled OR 0.6; 95% CI 0.5-0.7) as were children of low socio-economic position versus high (pooled OR 0.7; 95% CI 0.6-0.9). Compared to patients with cancer, children with non-cancer diagnoses had lower odds of home death (pooled OR 0.5; 95% CI 0.5-0.5).
Conclusion: Country and region of residence, older age of the child, high socio-economic position, 'white' ethnicity and cancer diagnoses appear to be independent predictors of home death among children.
What is Known: ; Home is often considered an indicator of quality in end-of-life care. ; Most terminally ill children die in hospitals.
What is New: ; Through a systematic review and meta-analyses, this study examined predictors for place of death among children. ; Country and region of residence, older age of the child, high socio-economic position, white ethnicity and having a cancer diagnosis appear to be independent predictors of home death among terminally ill children.
Background: Patients with advanced cancer and their caregivers have substantial misperceptions regarding hospice, which contributes to its underuse.
Methods: The authors conducted a single-site randomized trial of a video educational tool versus a verbal description of hospice in 150 hospitalized patients with advanced cancer and their caregivers. Patients without a caregiver were eligible. Intervention participants (75 patients and 18 caregivers) viewed a 6-minute video depicting hospice. Control participants (75 patients and 26 caregivers) received a verbal description identical to the video narrative. The primary outcome was patient preference for hospice. Secondary outcomes included patient and/or caregiver knowledge and perceptions of hospice, and hospice use.
Results: Between February 2017 and January 2019, approximately 55.7% of eligible patients (150 of 269 eligible patients) and 44 caregivers were enrolled. After the intervention, there was no difference noted with regard to patients' preferences for hospice (86.7% vs 82.7%; P = .651). Patients in the video group reported greater knowledge regarding hospice (9.0 vs 8.4; P = .049) and were less likely to endorse that hospice is only about death (6.7% vs 21.6%; P = .010). Among deceased patients, those assigned to the intervention were more likely to have used hospice (85.2% vs 63.6%; P = .01) and to have had a longer hospice length of stay (median, 12 days vs 3 days; P < .001). After the intervention, caregivers assigned to view the video were more likely to prefer hospice for their loved ones (94.4% vs 65.4%; P = .031), reported greater knowledge concerning hospice (9.7% vs 8.0%; P = .001), and were less likely to endorse that hospice is only about death (0.0% vs 23.1%; P = .066).
Conclusions: A hospice video did not significantly impact patients' preferences for hospice care. Patients with advanced cancer and their caregivers who were assigned to view the video were more informed regarding hospice and reported more favorable perceptions of hospice. Patients were more likely to use hospice and to have a longer hospice length of stay.
Objectives: This study aims to identify factors among British community-based adults associated with advance care planning engagement. Factors are then compared among six domains of wishes: medical care, spiritual and religious needs, privacy and peace, dignified care, place of death and pain relief.
Methods: Cross-sectional data were analysed from a stratified random sample of adults across Great Britain (England, Scotland and Wales) who were interviewed on their attitudes towards death and dying. Weighted multivariable logistic regression tested for associations with expressing any end-of-life wishes and then for each separate domain.
Results: Analysis of 2042 respondents (response rate: 53.5%) revealed those less likely to have discussed their wishes were: male, younger, born in the UK, owned their residence, had no experience working in health or social care, had no chronic conditions or disabilities, had not experienced the death of a close person in the last 5 years and feel neither comfortable nor uncomfortable or uncomfortable talking about death. Additional factors among the six domains associated with having not discussed wishes include: having less and more formal education, no religious beliefs, lower household income and living with at least one other person.
Conclusions: This study is the first to be conducted among a sample of community-dwelling British adults and the first of its kind to compare domains of end-of-life wishes. Our findings provide an understanding of social determinants which can inform a public health approach to end-of-life care that promotes advance care planning among compassionate communities.
This study aimed to examine family members’ attitudes and perceptions regarding their choice of care in the event of terminal illness, based on their experience in a caregiver’s role, while a loved one was terminally ill. All participants (N = 10) had cared for an immediate family member with terminal cancer. Snowball sampling was used. Qualitative data were collected through in-depth, semi-structured interviews. The data were transcribed verbatim and analyzed using thematic analysis. Five themes were identified from the data. These included two themes relating to participants’ experience of care, two themes in relation to participants’ attitudes toward the type of care they experienced and a final theme related to the role of religion and spirituality in dealing with loss. The findings of this study support the integration of multidisciplinary healthcare teams and the introduction of holistic care as early as possible within hospitals for individuals with terminal cancer, using the biopsychosocial–spiritual model.
Deactivation of an implantable cardioverter-defibrillator (ICD) is a critical issue in the advance care planning (ACP) of ICD recipients; however, related perspectives have rarely been explored. Thus, this study aimed to provide an initial investigation of ICD recipients’ perceived susceptibility and barriers/benefits regarding ACP and/or advance directives (ADs), and associations of these modifiable factors with preferences for end-of-life life-sustaining treatments (LSTs) (cardiopulmonary resuscitation (CPR), ventilator support, hemodialysis, and hospice care). Using a descriptive correlational design, 48 ICD recipients (age, 50.1 years; male, 85.4%) completed survey questionnaires. “No burden on family” was the most highly valued (59.1%), followed by “comfortable death” (20.4%), and both (11.4%). LST preference was 43.8% for ventilator support, 45.8% for both hemodialysis and hospice care, and 54.2% for CPR. Perceived susceptibility to having unexpected end-of-life experiences increased the likelihood of preference for aggressive LSTs, with preferences increasing by 15% for CPR, 17% for ventilator support, and 23% for hemodialysis. A non-modifiable factor, older age, was the only predictor of increased preference for hospice care (odds ratio = 1.09, p = 0.016). Among the modifiable factors, a higher perceived susceptibility increased the likelihood of aggressive LST preferences. The findings imply that to facilitate informed decisions for LSTs, early ACP discussion could be helpful and enhance these modifiable factors.
Background: On-line tutorials are being increasingly used in medical education, including in teaching housestaff skills regarding end of life care. Recently an on-line tutorial incorporating interactive clinical vignettes and communication skills was used to prepare housestaff at Johns Hopkins Hospital to use the Maryland Orders for Life Sustaining Treatment (MOLST) form, which documents patient preferences regarding end of life care. 40% of housestaff who viewed the module felt less than comfortable discussing choices on the MOLST with patients. We sought to understand factors beyond knowledge that contributed to housestaff discomfort in MOLST discussions despite successfully completing an on-line tutorial.
Methods: We conducted semi-structured telephone interviews with 18 housestaff who completed the on-line MOLST training module. Housestaff participants demonstrated good knowledge of legal and regulatory issues related to the MOLST compared to their peers, but reported feeling less than comfortable discussing the MOLST with patients. Transcripts of interviews were coded using thematic analysis to describe barriers to using the MOLST and suggestions for improving housestaff education about end of life care discussions.
Results: Qualitative analysis showed three major factors contributing to lack of housestaff comfort completing the MOLST form:  physician barriers to completion of the MOLST,  perceived patient barriers to completion of the MOLST, and  design characteristics of the MOLST form. Housestaff recommended a number of adaptations for improvement, including in-person training to improve their skills conducting conversations regarding end of life preferences with patients.
Conclusions: Some housestaff who scored highly on knowledge tests after completing a formal on-line curriculum on the MOLST form reported barriers to using a mandated form despite receiving training. On-line modules may be insufficient for teaching communication skills to housestaff. Additional training opportunities including in-person training mechanisms should be incorporated into housestaff communication skills training related to end of life care.
Background: Emergency departments routinely offer cardiopulmonary resuscitation and endotracheal intubation to patients in resuscitative states. With increasing longevity and prevalence of chronic conditions in Australia, there has been growing need to uptake and implement advance care directives and resuscitation plans. This study investigates the frequency of the presence of advance care directives and resuscitation plans and its utilisation in cardiopulmonary and endotracheal intubation decision making.
Methods: Retrospective audit of electronic patients’ medical records aged =65 years presenting over a 3-month period. Data collected included demographics, triage categories, advance care directive and/or resuscitation plans/orders status.
Results: A total of 6439 patients were included representing 29% of the total patient population during the study period. Participants were randomly selected (N = 300); mean age was 78.7 (±8.1) years. An advance care directive was present in only 8% and one in three patients (37%) had a previous resuscitation plan/order. Senior consultant was present at the department for consultation by junior doctors for most of the patients (82%). Acknowledgment of either advance care directive or resuscitation plans/orders in clinical notes was only 9.5% (n = 116).
Conclusion: Advance care directive prevalence was low with resuscitation plans/orders being more common. However, clinician acknowledgement was infrequent for both.
Objective: We studied if preferences about end-of-life care of people having an advance directive (AD) stay stable over time and if (in) stability is associated with health status.
Methods: A longitudinal cohort study with a population owning different types of ADs (n = 4638). Respondents repeatedly answered questionnaires between 2005-2010. Using hypothetical scenarios about advanced cancer and dementia we assessed preferences for continuing or forgoing resuscitation, mechanical ventilation, artificial nutrition and antibiotics. Using generalized estimated equations we analysed whether life-events and quality of life influenced changes in preferences.
Results: The proportion of respondents with stable preferences ranged from 67 to 98 %. Preferences were most stable concerning resuscitation and least stable concerning mechanical ventilation. In only a few instances we found life-events or a change in quality of life could both increase or decrease odds to change preferences.
Conclusion: Preferences concerning continuing or forgoing treatment at the end of life are stable for a majority of people with ADs, which supports their validity.
Context: Palliative care consultation before left ventricular assist device (LVAD) surgery (PreVAD) has been recommended, but its impact on goal-concordant care is unknown.
Objectives: To describe the association between patients' unique unacceptable condition articulated during PreVAD with the actual care provided at the end of life.
Methods: Among 308 patients who had PreVAD between 2014 and 2019, 72 patients died before December 31, 2019. Based on the answers to the question, “Is there any condition you would find unacceptable?” patients were divided into ARTICULATE (those who could articulate their unacceptable condition clearly, n = 58) and non-ARTICULATE (those who could not, n = 14). Circumstances at death and end-of-life care were compared between groups.
Results: Mean age at death was 63.2 years (SD ±13.1), 56 patients (77.8%) were males, and median duration of LVAD was 167.5 days (interquartile range 682). ARTICULATE patients died less frequently in the intensive care unit than non-ARTICULATE patients (33 patients, 57.9% vs. 13 patients, 92.9%; P = 0.014) and had ethics consultation less frequently (four patients, 6.9% vs. five patients, 35.7%; P = 0.011). Frequency of LVAD withdrawal was similar in both groups. Among ARTICULATE cohort, the unacceptable condition articulated in PreVAD did not seem to influence decisions at the end of life.
Conclusion: Patients who articulated their unacceptable condition clearly before LVAD surgery had less frequent ethics consultations and received less intensive care at the end of life, but it did not seem to affect the decision of LVAD withdrawal. It may be more important to engage in discussions around their unacceptable conditions, rather than the specific condition articulated. The question of an unacceptable condition should be part of any routine palliative care consultation before LVAD surgery.
Background: The 3 Wishes Project is a semistructured program that improves the quality of care for patients dying in the intensive care unit by eliciting and implementing wishes. This simple intervention honors the legacy of patients and eases family grief, forging human connections between family members and clinicians.
Aim: To examine how the 3 Wishes Project enables collective patterns of compassion between patients, families, clinicians, and managerial leaders in the intensive care unit.
Design: Using a qualitative descriptive approach, interviews and focus groups were used to collect data from family members of dying patients, clinicians, and institutional leaders. Unconstrained directed qualitative content analysis was performed using Organizational Compassion as the analytic framework.
Setting/participants: Four North American intensive care units, participants were 74 family members of dying patients, 72 frontline clinicians, and 20 managerial leaders.
Results: The policies and processes of the 3 Wishes Project exemplify organizational compassion by supporting individuals in the intensive care unit to collectively notice, feel, and respond to suffering. As an intervention that enables and empowers clinicians to engage in acts of kindness to enhance end-of-life care, the 3 Wishes Project is particularly well situated to encourage collective responses to suffering and promote compassion between patients, family members, and clinicians.
Conclusions: Examining the 3 Wishes Project through the lens of organizational compassion reveals the potential of this program to cultivate the capacity for people to collectively notice, feel, and respond to suffering. Our data document multidirectional demonstrations of compassion between clinicians and family members, forging the type of human connections that may foster resilience.
Background: The challenges of supporting the end-of-life preferences of patients and their families have often been attributed to poor understanding of the patient’s condition. Understanding how physicians, as patients, communicate their end-of-life care preferences to their families may inform shared decision making at end of life.
Objectives: The purpose of this study was to understand what matters to families of physicians when decision making with and for a physician who is approaching the end of life.
Design: Cross-sectional qualitative design.
Participants: We conducted interviews with family members of deceased physicians.
Approach: We analyzed the data using the constant comparison method to identify themes.
Key results: Family members (N = 26) rarely were unclear about the treatment preferences of physicians who died. Three overarching themes emerged about what matters most to physicians’ families: (1) honoring preferences for the context of end-of-life care; (2) supporting the patient’s control and dignity in care; and, (3) developing a shared understanding of preferences. Families struggled to make decisions and provide the care needed by the physicians at the end of life, often encountering significant challenges from the healthcare system.
Conclusions: Even when disease and prognosis are well understood as in this group of physicians, families still experienced difficulties in end-of-life decision making. These findings highlight the need to specifically address preferences for caregiver, care setting and symptom management in shared end-of-life decision making conversations with patients and families.
This case raises the difficult question of how to respond to patients who appear to lack decision-making capacity, yet retain limited communication that allows them to state a preference for life-sustaining treatment that conflicts with the choice of their surrogate. I argue that the patient’s preference should be honored, even though the patient lacks decision-making capacity, and the preference contradicts the wishes of the surrogate.
Background: Advance directives towards end of life decisions are seldom used among Arabs.
Aims: This study aimed at investigating advance care preferences among a sample of Arab patients.
Method: This cross-sectional study was undertaken over the period March 2012-March 2013 on a sample of 300 patients with chronic illness in King Fahad National Guard Hospital, Riyadh, a major tertiary care hospital in Saudi Arabia.
Results: Mean age of patients in the study was 48.7 years (standard deviation 16.4). There were 104 patients on haemodialysis, 73 with advanced malignancy, 81 with chronic liver disease and 35 with chronic respiratory disease. More than 80% of the respondents felt that the physician should make the decision about cardiopulmonary resuscitation. Over 60% wished to remain at home when their condition deteriorated to impending death. There were no significant correlations between the patients' end of life decision preferences and religiosity, quality of life, disease duration, or other demographic characteristics.
Conclusion: Despite a significant lack of knowledge among our participants regarding resuscitation, a majority of patients with chronic illness were willing to discuss the options and were capable of making advance directive plans regarding their health status.
OBJECTIVE: To identify and synthesise existing literature exploring the impact of relational and informational continuity of care on preferred place of death, hospital admissions and satisfaction for palliative care patients in qualitative, quantitative and mixed methods literature.
DESIGN: A mixed methods rapid review.
METHODS: PUBMED, PsychINFO, CINAHL were searched from June 2008 to June 2018 in order to identify original peer reviewed, primary qualitative, quantitative or mixed methods research exploring the impact of continuity of care for people receiving palliative care. Synthesis methods as outlined by the Cochrane Qualitative and Implementation Methods Group were applied to qualitative studies while meta-analyses for quantitative data were planned.
OUTCOMES: The impact of interventions designed to promote continuity of care for people receiving palliative care on the following outcomes was explored: achieving preferred place of death, satisfaction with care and avoidable hospital admissions.
RESULTS: 18 eligible papers were identified (11 qualitative, 6 quantitative and 1 mixed methods papers). In all, 1951 patients and 190 family caregivers were recruited across included studies. Meta-analyses were not possible due to heterogeneity in outcome measures and tools used. Two studies described positive impact on facilitating preferred place of death. Four described a reduction in avoidable hospital admissions. No negative impacts of interventions designed to promote continuity were reported. Patient satisfaction was not assessed in quantitative studies. Participants described a significant impact on their experiences as a result of the lack of informational and relational continuity.
CONCLUSIONS: This rapid review highlights the impact that continuity of care can have on the experiences of patients receiving palliative care. The evidence for the impact of continuity on place of death and hospital admissions is limited. Methods for enhancing, and recording continuity should be considered in the design and development of future healthcare interventions to support people receiving palliative care.
Trial tested effect of advance care planning on family/surrogates’ understanding of patients’ end-of-life treatment preferences longitudinally. A multisite, assessor-blinded, intent-to-treat, parallel-group, randomized controlled clinical trial in five hospital-based HIV clinics enrolled 449 participants aged 22 to 77 years during October 2013-March 2017. Patients living with HIV/family dyads were randomized at 2:1 ratio to 2 weekly ~ 60-min sessions either ACP (n = 155 dyads)—(1) ACP facilitated conversation, (2) Advance directive completion; or Control (n = 68 dyads)—(1) Developmental/relationship history, (2) Nutrition/exercise tips. ACP families/surrogates were more likely to accurately report patients’ treatment preferences at Time 1 (T1) and 12 months post-intervention (T2) compared to controls, experiencing high congruence longitudinally (high high transition), [63·6% vs 37·7% (difference = 25·9%, 95% CI: 11·3%, 40·4%, 2 = 11·52, p = 0·01)], even as patients’ preferences changed over time. ACP families/surrogates had eight times the odds of controls of having an excellent understanding of patients’ treatment preferences (Adjusted Odds Ratio 7.91, 95%CI: 3.08, 20.3).
Objectives: Hospital death is comparatively common in people with haematological cancers, but little is known about patient preferences. This study investigated actual and preferred place of death, concurrence between these and characteristics of preferred place discussions.
Methods: Set within a population-based haematological malignancy patient cohort, adults (=18 years) diagnosed 2004–2012 who died 2011–2012 were included (n=963). Data were obtained via routine linkages (date, place and cause of death) and abstraction of hospital records (diagnosis, demographics, preferred place discussions). Logistic regression investigated associations between patient and clinical factors and place of death, and factors associated with the likelihood of having a preferred place discussion.
Results: Of 892 patients (92.6%) alive 2 weeks after diagnosis, 58.0% subsequently died in hospital (home, 20.0%; care home, 11.9%; hospice, 10.2%). A preferred place discussion was documented for 453 patients (50.8%). Discussions were more likely in women (p=0.003), those referred to specialist palliative care (p<0.001), and where cause of death was haematological cancer (p<0.001); and less likely in those living in deprived areas (p=0.005). Patients with a discussion were significantly (p<0.05) less likely to die in hospital. Last recorded preferences were: home (40.6%), hospice (18.1%), hospital (17.7%) and care home (14.1%); two-thirds died in their final preferred place. Multiple discussions occurred for 58.3% of the 453, with preferences varying by proximity to death and participants in the discussion.
Conclusion: Challenges remain in ensuring that patients are supported to have meaningful end-of-life discussions, with healthcare services that are able to respond to changing decisions over time.
Hispanic Americans are among the fastest growing minority groups in the USA, and understanding their preferences for medical decision-making and information sharing is imperative to provide high quality end of life care. Studies exploring these decision control preferences (DCPs) are limited and found inconsistent results. (1) To measure DCPs of Hispanic patients in the Bronx. (2) To measure disclosure of information preferences of Hispanic patients in the Bronx. This is a cross-sectional survey. One hundred nineteen cancer patients who self-identified as Hispanic and were waiting at the oncology clinic at Montefiore Medical Center Cancer Center. Proportions of patients endorsing DCPs and disclosure of information preferences are reported. The relationship between patient characteristics and DCPs was tested using chi-squared tests of homogeneity. The majority (63, 52.9%) preferred shared decision-making with their doctors, families or both, while 46 (38.7%) had an active decision-making style. A minority (9, 7.6%) had a passive decision-making style, deferring to their families, and only 1 (0.8%) deferring to the physician. No demographic characteristics significantly predicted DCPs. The majority of patients agreed or strongly agreed that they wanted to hear all of the information regarding their diagnosis (94%), treatment options (94%), treatment expectations (92%), and treatment risks and benefits (96%). These results confirm our hypothesis that most Hispanic patients prefer either an active or shared decision-making process rather than a passive decision-making process. Most patients prefer disclosure of diagnosis, prognosis, and plan.