The ethics of perinatal care, and the experiences of families who receive such care, remains a nascent area of inquiry. It can be hard to see how existing "good death" constructs apply to the experiences of fetal patients and their families. In this paper, we explore two themes raised by a case at our fetal health center: anticipation and accompaniment. In this case, a mother presented to our fetal health center; her unborn son, our fetal patient, was diagnosed with life-threatening hypoplastic left heart syndrome and endocardial fibroelastosis. The parents were told that their son's life expectancy, upon birth, was short. For us, this case raised important questions around what sorts of things we might, together with the family, anticipate with respect to their son's birth and death, and what it meant to really accompany this family on their journey. Alongside conventional lessons in the philosophical literature and palliative care practice, the process of anticipating together and of mutual accompaniment helped us to guide this family to what they ultimately determined to be a good death for their son.
Au travers de six futurs fictionnels, construits par sous-détermination, des spécialistes de diverses disciplines s'interrogent sur le champ des possibles dans le domaine de la santé, par-delà les seuls aspects technologiques et organisationnels, ainsi que sur les enjeux éthiques que soulèvent ces perspectives.
BACKGROUND: People who engage in advance care planning (ACP) are more likely to receive health care that is concordant with their goals at the end of life. Little discussion of ACP occurs in primary care.
OBJECTIVE: The objective of this study was to describe primary care clinicians' perspectives on having ACP conversations with their patients.
METHODS: We conducted a survey of family physicians and non-physician clinicians in primary care in 2014-2015. We compared family physicians and non-physician clinicians on willingness, confidence, participation and acceptability for other clinicians to engage in six aspects of ACP (initiating, exchanging information, decision coaching, finalizing plans, helping communicate plans with family members and other health professionals) on scales from 0 = not at all/extremely unacceptable to 6 = very/all the time/extremely acceptable.
RESULTS: The response rate was 72% (n = 117) among family physicians and 69% (n = 64) among non-physician clinicians. Mean ratings (standard deviation [SD]) of willingness were high (4.5 [1.4] to 5.0 [1.2] for physicians; 3.4 [1.8] to 4.6 [1.6] non-physician clinicians). There was little participation (mean ratings 2.4 [1.7] to 2.7 [1.6] for physicians, 1.0 [1.5] to 1.4 [1.7] for non-physician clinicians). Non-physician clinicians rated confidence statistically significantly lower than physicians for all ACP aspects. Acceptability for non-physician clinician involvement was high in both groups (mean acceptability ratings greater than 4).
CONCLUSION: Current engagement of primary care clinicians in ACP is low. Given the high willingness and acceptability for non-physician clinician involvement, increasing the capacity of non-physician clinicians could enable uptake of ACP in primary care.
OBJECTIVES: Patients with indicators for palliative care, such as those with advanced life-limiting conditions, are at risk of futile cardiopulmonary resuscitation (CPR) if they suffer out-of-hospital cardiac arrest (OHCA). Patients at risk of futile CPR could benefit from anticipatory care planning (ACP); however, the proportion of OHCA patients with indicators for palliative care is unknown. This study quantifies the extent of palliative care indicators and risk of CPR futility in OHCA patients.
METHODS: A retrospective medical record review was performed on all OHCA patients presenting to an emergency department (ED) in Edinburgh, Scotland in 2015. The risk of CPR futility was stratified using the Supportive and Palliative Care Indicators Tool. Patients with 0-2 indicators had a 'low risk' of futile CPR; 3-4 indicators had an 'intermediate risk'; 5+ indicators had a 'high risk'.
RESULTS: Of the 283 OHCA patients, 12.4% (35) had a high risk of futile CPR, while 16.3% (46) had an intermediate risk and 71.4% (202) had a low risk. 84.0% (68) of intermediate-to-high risk patients were pronounced dead in the ED or ED step-down ward; only 2.5% (2) of these patients survived to discharge.
CONCLUSIONS: Up to 30% of OHCA patients are being subjected to advanced resuscitation despite having at least three indicators for palliative care. More than 80% of patients with an intermediate-to-high risk of CPR futility are dying soon after conveyance to hospital, suggesting that ACP can benefit some OHCA patients. This study recommends optimising emergency treatment planning to help reduce inappropriate CPR attempts.
OBJECTIVES: To determine the effectiveness of advance care planning (ACP) in frail older adults.
DESIGN: Cluster randomized controlled trial.
SETTING: Residential care homes in the Netherlands (N=16).
PARTICIPANTS: Care home residents and community-dwelling adults receiving home care (N=201; n=101 intervention; n=100 control). Participants were 75 years and older, frail, and capable of consenting to participation.
INTERVENTION: Adjusted Respecting Choices ACP program.
MEASUREMENTS: The primary outcome was change in patient activation (Patient Activation Measure, PAM-13) between baseline and 12-month follow-up. Secondary outcomes included change in quality of life (SF-12), advance directive (AD) completion, and surrogate decision-maker appointment. Use of medical care in the 12 months after inclusion was also assessed. Multilevel analyses were performed, controlling for clustering effects and differences in demographics.
RESULTS: Seventy-seven intervention participants and 83 controls completed the follow-up assessment. There were no statistically significant differences between the intervention (-0.26±11.2) and control group (-1.43±10.6) in change scores of the PAM (p=.43) or the SF-12. Of intervention group participants, 93% completed an AD, and 94% appointed a decision-maker. Of control participants, 34% completed an AD, and 67% appointed a decision-maker (p<.001). No differences in the use of medical care were found.
CONCLUSIONS: ACP did not increase levels of patient activation or quality of life but did increase completion of ADs and appointment of surrogate decision-makers. It did not affect use of medical care.
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.
While terminal palliative care focuses primarily on the management of symptoms of immediate dying, early palliative care provides an opportunity for the patient and his loved ones to understand the trajectory of the illness, to receive support for coping with the diagnosis, increase the quality of decision-making to match the patients values and preferences. The emphasis is on realistic expectations of the outcome of treatment and timely anticipation of further disease course. The paper focuses on an overview of the evidence of palliative and supportive interventions, comparing the different trigger mechanisms for palliative intervention and presents the content of the intervention of the palliative team. The establishment and integration of the consultative palliative team in the tertiary hospital is described. An illustrative care report describes the goals of care conversation and its impact on advance care planning. Palliative care is widely accepted and recommended standard of high quality care for seriously ill patients. In the Czech Republic, it is necessary to extend its availability for patients hospitalized in acute care setting.
INTRODUCTION: Two-thirds of chronically ill patients do not have an advance directive. The primary aim of this study was to develop an intervention to increase the documentation of advance directives in elderly adults in an internal medicine resident primary care clinic. The secondary aims were to improve resident confidence in discussing advance care planning and increase the number of discussions.
METHODS: The study was a pre- and postintervention study. The study intervention was a 30-minute educational session on advance care planning. Study participants were patients aged 65 years and older who were seen in an internal medicine residency primary care clinic over a 6-month period and internal medicine residents. Clinic encounters were reviewed for the presence of advance care planning discussions before and after the intervention. Resident confidence was measured on a Likert scale.
RESULTS: Two hundred ninety-five eligible patients were seen in the clinic from January 1, 2017, to June 30, 2017, and included in the analysis performed between 2017 and 2018. The mean number of documented advance care planning discussions increased from 2.24 (95% confidence interval [CI]: 1.0-4.9) during the preintervention period to 8.94 (95% CI: 5.94-13.24]) during the postintervention period (P = .0011). Following the intervention, residents overall reported increased confidence in discussing advance care planning.
CONCLUSION: A relatively modest intervention to increase advance care planning discussions is feasible in an internal medicine primary care clinic and can improve the confidence of residents with end-of-life discussion.
OBJECTIVES: Advance care planning (ACP) is essential for patient-centred care in the last phase of life. There is little evidence available on the safety of ACP. This study characterises and explores patient safety incidents arising from ACP processes in the last phase of life.
METHODS: The National Reporting and Learning System collates patient safety incident reports across England and Wales. We performed a keyword search and manual review to identify relevant reports, April 2005-December 2015. Mixed-methods, combining structured data coding, exploratory and thematic analyses were undertaken to describe incidents, underlying causes and outcomes, and identify areas for improvement.
RESULTS: We identified 70 reports in which ACP caused a patient safety incident across three error categories: (1) ACP not completed despite being appropriate (23%, n=16). (2) ACP completed but not accessible or miscommunicated between professionals (40%, n=28). (3) ACP completed and accessible but not followed (37%, n=26). Themes included staff lacking the knowledge, confidence, competence or belief in trustworthiness of prior documentation to create or enact ACP. Adverse outcomes included cardiopulmonary resuscitation attempts contrary to ACP, other inappropriate treatment and/or transfer or admission.
CONCLUSION: This national analysis identifies priority concerns and questions whether it is possible to develop strong system interventions to ensure safety and quality in ACP without significant improvement in human-dependent issues in social programmes such as ACP. Human-dependent issues (ie, varying patient, carer and professional understanding, and confidence in enacting prior ACP when required) should be explored in local contexts alongside systems development for ACP documentation.
It is recommended that advance care planning take place across the lifespan. Rural populations have a heightened risk for poor quality and high cost of end-of-life care. A doctoral project was completed to assess rural nurses’ knowledge, attitudes, and experiences with advance directives using the Knowledge, Attitudinal, and Experimental Surveys on Advance Directives. Descriptive statistics were used for analysis. Participants were nurses who practice in rural settings (N = 22). The average age was 46.4 years; all were white (n = 22), and the majority were baccalaureate prepared (n = 12). Practice settings were primarily in home care and hospice. Knowledge scores on advance directives were low (57%). Nurses felt confident in counseling and initiating discussions with patients and families. Less than one-half of the nurses reported they feel part of the advance care planning team. The majority reported advance directive resources and mentorship of younger nurses would be beneficial and indicated the need for additional education, training, knowledge, time, and support to better assist with advance care planning. Project results and recommendations were presented to the participating health care organization. Recommendations included workplace education, support, mentorship, resources, and education on cultural sensitivity using the rural nursing theory.
BACKGROUND: The concept of advance care planning is largely derived from Western countries. However, the decision-making process and drivers for choosing palliative care in non-Western cultures have received little attention.
AIM: To explore the decision-making processes and drivers of receiving palliative care in advance care planning discussions from perspectives of advanced cancer patients, families and healthcare professionals in northern Taiwan.
METHOD: Semi-structured qualitative interviews with advanced cancer patients, their families and healthcare professionals independently from inpatient oncology and hospice units. Thematic analysis with analytical rigour enhanced by dual coding and exploration of divergent views.
RESULTS: Forty-five participants were interviewed (n = 15 from each group). Three main decision-making trajectories were identified: (1) 'choose palliative care' was associated with patients' desire to reduce physical suffering from treatments, avoid being a burden to families and society, reduce futile treatments and donate organs to help others; (2) 'decline palliative care' was associated with patients weighing up perceived benefits to others as more important than benefits for themselves; and (3) 'no opportunity to choose palliative care' was associated with lack of opportunities to discuss potential benefits of palliative care, lack of staff skill in end-of-life communication, and cultural factors, notably filial piety.
CONCLUSION: Choice for palliative care among advanced cancer patients in Taiwan is influenced by three decision-making trajectories. Opinions from families are highly influential, and patients often lack information on palliative care options. Strategies to facilitate decision-making require staff confidence in end-of-life discussions, working with the patients and their family while respecting the influence of filial piety.
Background: Despite the importance of persons with dementia (PWDs) engaging in advance care planning (ACP) at a time when they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions, studies of ACP in PWDs are rare.
Objective: We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (sharing patient's illness representations to increase trust), for PWDs in early stages (recent Montreal Cognitive Assessment [MoCA] score =13) and their surrogates and assess whether SPIRIT could help PWDs engage in ACP.
Design: A formative expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews, was conducted. Patient–surrogate dyads were randomized to SPIRIT in person (in a private room in a memory clinic) or SPIRIT remote (via videoconferencing from home).
Setting/Subjects: Twenty-three dyads of PWDs and their surrogates were recruited from an outpatient brain health center. Participants completed preparedness outcome measures (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) at baseline and two to three days post-intervention, plus a semistructured interview. Levels of articulation of end-of-life wishes of PWDs during SPIRIT sessions were rated (3 = expressed wishes very coherently, 2 = somewhat coherently, and 1 = unable to express coherently).
Results: All 23 were able to articulate their end-of-life wishes very or somewhat coherently during the SPIRIT session; of those, 14 PWDs had moderate dementia. While decision-making capacity was higher in PWDs who articulated their wishes very coherently, MoCA scores did not differ by articulation levels. PWDs and surrogates perceived SPIRIT as beneficial, but the preparedness outcomes did not change pre–post.
Conclusions: SPIRIT engaged PWDs and surrogates in meaningful ACP discussions, but requires testing of efficacy and long-term outcomes.
Background and Objectives: To address the unique characteristics of Alzheimer's disease and related dementias (ADRD) that complicate end-of-life (EOL), we created, refined, and validated a dementia-focused EOL planning instrument for use by healthy adults, those with early-stage dementia, family caregivers, and clinicians to document EOL care preferences and values within the current or future context of cognitive impairment.
Research Design and Methods: A mixed-method design with four phases guided the development and refinement of the instrument: (1) focus groups with early-stage ADRD and family caregivers developed and confirmed the tool content and comprehensiveness; (2) evaluation by content experts verified its utility in clinical practice; (3) a sample of healthy older adults (n = 153) and adults with early-stage ADRD (n = 38) completed the tool, whose quantitative data were used to describe the psychometrics of the instrument; and (4) focus groups with healthy older adults, family caregivers, and adults with early-stage ADRD informed how the guide should be used by families and in clinical practice.
Results: Qualitative data supported the utility and feasibility of a dementia-focused EOL planning tool; the six scales have high internal consistency (a = 0.66–0.89) and high test–rest reliability (r = .60–.90). On average, both participant groups reported relatively high concern for being a burden to their families, a greater preference for quality over length of life, a desire for collaborative decision-making process, limited interest in pursuing life-prolonging measures, and were mixed in their preference to control the timing of their death. Across disease progression, preferences for location of care changed, whereas preferences for prolonging life remained stable.
Discussion and Implications: The LEAD Guide (Life-Planning in Early Alzheimer's and Dementia) has the potential to facilitate discussion and documentation of EOL values and care preferences prior to loss of decisional capacity, and has utility for healthy adults, patients, families, providers, and researchers.
Primary care physicians are increasingly incorporating screening tools for substance use disorders (SUDs) and referral to treatment into their practice. Despite efforts to provide access to treatment, patients with SUDs remain at an increased risk of mortality, both from overdose and from general medical conditions. Advance care planning (ACP) is recommended for patients with chronic, progressive medical conditions such as malignancies or heart failure. Though SUDs are widely acknowledged to be chronic diseases associated with an increased risk of mortality, there has been little discussion on ACP in this population. ACP is a discussion regarding future care, often including selection of a surrogate decision-maker and completion of an advanced directive. ACP has been associated with better quality of end-of-life and care more consistent with patient preferences. Studies in other vulnerable populations have shown that marginalized and high-risk individuals may be less likely to receive ACP. Similarly, patients with SUDs may employ different decision-makers than that defined by law (i.e., friend vs. family member), increasing the importance of discussing patient values and social structure. Physicians should routinely conduct ACP conversations with patients with SUDs, especially those with chronic, progressive medical conditions and/or severe, uncontrolled substance use disorders.
CONTEXT: Few randomized controlled trials of advance care planning with a decision aid (DA) show an effect on patient preferences for end-of-life (EOL) care over time, especially in racial/ethnic settings outside the United States.
OBJECTIVES: The objective of this study was to examine the effect of a decision aid consisting of a video and an advance care planning (ACP) booklet for end-of-life (EOL) care preferences among patients with advanced cancer.
METHODS: Using a computer-generated sequence, we randomly assigned (1:1) advanced cancer patients to a group that received a video and workbook that both discussed either ACP (intervention group) or cancer pain control (control group). At baseline, immediately post-intervention, and at 7 weeks, we evaluated the subjects' preferences. The primary outcome was preference for EOL care (active treatment, life-prolonging treatment, or hospice care) on the assumption of a fatal disease diagnosis and the expectation of death 1) within 1 year, 2) within several months, and 3) within a few weeks. We used Bonferroni correction methods for multiple comparisons with an adjusted p level of 0.005.
RESULTS: From August 2017 to February 2018, we screened 287 eligible patients, of whom 204 were enrolled to the intervention (104 patients) or the control (100 patients). At post-intervention, the intervention group showed a significant increase in preference for active treatment, life-prolonging treatment, and hospice care on the assumption of a fatal disease diagnosis and the expectation of death within 1 year (p<0.005). Assuming a life expectancy of several months, the change in preferences was significant for active treatment and hospice care (p<0.005) but not for life-prolonging treatment. The intervention group showed a significant increase in preference for active treatment, life-prolonging treatment, and hospice care on the assumption of a fatal disease diagnosis and the expectation of death within a few weeks (p<0.005). From baseline to 7 weeks, the decrease in preference in the intervention group was not significant for active treatment, for life-prolonging treatment, and for hospice care in the intervention group in the subset expecting to die within 1 year, compared with the control group. Assuming a life expectancy of several months and a few weeks, the change in preferences was not significant for active treatment and for life-prolonging treatment, but was significantly greater for hospice care in the intervention group (p<0.005).
CONCLUSION: ACP interventions that included a video and an accompanying book improved preferences for EOL care.
BACKGROUND: Advance care planning (ACP) is the process of discussing and documenting wishes and preferences for future care. Research about ACP for people with intellectual disabilities (ID) is limited. This study describes what is important for ACP in the palliative phase of people with intellectual disabilities.
METHOD: In-depth interviews were conducted with people with intellectual disabilities (n = 5), relatives (n = 7) and professional caregivers (n = 8). Qualitative data were analysed inductively, using the principles of thematic analysis.
RESULTS: Important themes in ACP were as follows: tailoring care, working as a team and taking and giving time. The perceived role of people with intellectual disabilities in ACP was to express their wishes. Relatives had a signalling, representing and contributing role. Professionals felt their role was to inform, collaborate and coordinate.
CONCLUSIONS: A staff training programme about ACP should cover how to build and maintain close relationships, provide a safe environment and address ACP as an integral part of care.
Background: Advance care planning (ACP) is a critical component of end-of-life (EoL) care, yet infrequently taught in medical training.
Objective: We designed a novel curriculum that affords third-year medical students (MS3s) the opportunity to practice EoL care discussions with a trained older adult in the patient's home.
Design: Volunteers were instructed as trained patients (TPs) to evaluate MS3s interviewing and communication skills. The MS3s received a didactic lecture and supplemental material about ACP. Pairs of MS3s conducted ACP interviews with TPs who gave verbal and written feedback to students. Student evaluations included reflective essays and pre/postsurveys in ACP skills.
Settings and Participants: A total of 223 US MS3s participated in the curriculum.
Results: Qualitative analysis of reflective essays revealed 4 themes: (1) students' personal feelings, attitudes, and observations about conducting ACP interviews; (2) observations about the process of relationship building; (3) learning about and respecting patients' values and choices; and (4) the importance of practicing the ACP skills in medical school. Students' confidence in skills significantly improved in all 7 domains (P < .001): (1) introduce subject of EoL; (2) define advance directives; (3) assess values, goals, and priorities; (4) discuss prior experience with death; (5) assess expectations about treatment and hospitalization; (6) explain cardiopulmonary resuscitation and outcomes; and (7) deal with own feelings about EoL and providers' limitations.
Conclusions: The use of older adults as TPs in an ACP curriculum provides students an opportunity to practice skills and receive feedback in the nonmedical setting, thereby improving comfort and confidence in approaching these conversations for future patients.
Education of health and social care professionals is essential in preparation to confidently and effectively support families affected by dementia to undertake advance care planning. This article describes a training needs analysis of Admiral Nurses, dementia specialists, in facilitating advance care planning for future care.
Methods: A questionnaire survey was completed by Admiral Nurses attending end-of-life care masterclasses in 2017 and 2018. Both quantitative (years registered as a nurse, years as an Admiral Nurse and subjective level of confidence in completing advance care plannings) and qualitative data (interventions perceived to increase confidence) were collected.
Findings: There were 75 completed responses (two incomplete returns). There was no correlation between levels of confidence and years registered as a nurse. However, there was a small positive correlation between confidence and number of years as an Admiral Nurse (r = 0.23; p < 0.05). Themes identified qualitatively to enhance practice were advanced communication skills, supervised practice, resources to frame conversations and a guide and template for advance care planning.
Conclusion: Although Admiral Nurses are specialists in dementia, several educational initiatives could be employed to better enable them to support advance care planning for families affected by dementia. This training needs analysis is contributed towards developing an educational intervention for Admiral Nurses to improve advance care planning support.
Objectives: As the homeless population ages, it is imperative to improve access to advance care planning (ACP) and document preferences in case medical decision-making capacity is lost.
Methods: We implemented an ACP Project to discuss and document advance care plans with all patients aged 45 and older who received primary care at our adult Homeless Program clinics.
Results: Over 14 months, ACP was discussed with 48% (n = 138) of the population and health care proxy (HCP) appointment with 91% (n = 125) of these patients. Most (62%; n = 77) appointed a HCP from personal relationships, though a significant minority (38%; n = 48) could not and were considered "surrogateless." End-of-life preferences varied. Approximately 20% of patients wanted to defer to a surrogate for each decision.
Discussion: ACP is feasible in primary care for adults who have experienced homelessness and should be incorporated into routine care.
Introduction: Advance care planning (ACP) is a process in which patients, families, and providers discuss and plan for desired treatment goals. American Indian and Alaska Native people (AI/AN) have higher prevalence of many serious, life-limiting illnesses compared with the general population; yet AI/ANs use ACP considerably less than the overall population.
Method: We conducted a qualitative study to culturally adapt an existing ACP intervention for AI/ANs in two primary care settings.
Results: We found that it is important to incorporate patients' cultural values and priorities into ACP, determine who the patient wants involved in ACP conversations, and consider the culturally and locally relevant barriers and facilitators when developing an ACP intervention with AI/AN communities. Discussion: At the core, ACP interventions should be clear and understandable across populations and tailored to facilitate culturally appropriate and meaningful patient-provider communication. Our results and methodology of culturally adapting an intervention may be applicable to other underrepresented populations.