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: Emotional distress often causes patients with cancer and their family caregivers (FCGs) to avoid end-of-life discussions and advance care planning (ACP), which may undermine quality of life (QoL). Most ACP interventions fail to address emotional barriers that impede timely ACP.
AIM: We assessed feasibility, acceptability, and preliminary effects of a mindfulness-based intervention to facilitate ACP for adults with advanced-stage cancer and their FCGs.
DESIGN: A single-arm pilot was conducted to assess the impact of a 6-week group mindfulness intervention on ACP behaviors (patients only), QoL, family communication, avoidant coping, distress, and other outcomes from baseline (T1) to post-intervention (T2) and 1 month later (T3).
PARTICIPANTS: Eligible patients had advanced-stage solid malignancies, limited ACP engagement, and an FCG willing to participate. Thirteen dyads (N = 26 participants) enrolled at an academic cancer center in the United States.
RESULTS: Of eligible patients, 59.1% enrolled. Attendance (70.8% across 6 sessions) and retention (84.6% for patients; 92.3% for FCGs) through T3 were acceptable. Over 90% of completers reported high intervention satisfaction. From T1 to T3, patient engagement more than doubled in each of 3 ACP behaviors assessed. Patients reported large significant decreases in distress at T2 and T3. Family caregivers reported large significant improvements in QoL and family communication at T2 and T3. Both patients and FCGs reported notable reductions in sleep disturbance and avoidant coping at T3.
CONCLUSIONS: The mindfulness intervention was feasible and acceptable and supported improvements in ACP and associated outcomes for patients and FCGs. A randomized trial of mindfulness training for ACP is warranted. The study is registered at ClinicalTrials.gov with identifier NCT02367508 ( https://clinicaltrials.gov/ct2/show/NCT02367508 ).
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.
Advance care planning is a process that supports conversations about the values that matter most to patients and their family members. The documentation of advance directives and code status in a patient's electronic health record (EHR) is a critical step to ensure treatment preferences are honored in the medical care received. The current approach to advanced care planning documentation in electronic medical records often remains disparate within and across EHR systems. Without a standardized format for documentation or centralized location for documentation, advance directives and even code status content are often difficult to access within electronic medical records. This case report launched our palliative care team into partnership with the Information Technology team for implementation of a centralized, standardized, longitudinal, functional documentation of advance care planning and code status in the electronic medical record system.
BACKGROUND: Advance care planning is a crucial end-of-life care practice. However, an advance care planning educational programme for practitioners in an acute care setting has not yet been established. Consequently, we examined the effects of an advance care planning educational programme in an acute hospital in the hope of achieving increased awareness of end-of-life care.
DESIGN: A mixed-methods, pre- and post-design was employed to evaluate the change in attitudes of practitioners post-programme. The intervention programme was conducted thrice over 3 months in 90-min sessions.
SETTING/PARTICIPANTS: This study included 85 participants in the baseline assessment working at B acute hospital in Osaka.
RESULTS: Participants' scores on the 'Positive attitude for end-of-life care' subscale on the short version of the Frommelt Attitude Toward Care of Dying scale significantly increased after the 6-month intervention. A 'Positive attitude for end-of-life-care' implies that participants would not be afraid to practice end-of-life care. Further, participants' scores on the 'Death relief' subscale of the Death Attitude Inventory also significantly increased. The term 'Death relief' means that death helps in ending suffering. It means participants are not afraid of death. Qualitative results implied that participants believed advance care planning implementation and communicating with patients and patients' families were critical.
CONCLUSIONS: Six months post-intervention, participants displayed sustained positive attitudes towards end-of-life care. These results suggest that the present programme was effective at improving practitioners' attitudes towards patients' end-of-life care.
AIMS AND OBJECTIVES: To uncover what is known about nurse-led models or interventions that have integrated palliative care into the care of patients with Chronic Obstructive Pulmonary Disease (COPD).
BACKGROUND: COPD is a highly symptomatic, incurable disease characterised by chronic symptoms that without appropriate palliation, can lead to unnecessary suffering for patients and their caregivers. While palliative care practices can relieve suffering and improve quality of life, most palliative models of care remain cancer-focused. New models, including nurse-led care that integrate palliative care for patients with COPD could address patient suffering and therefore need to be explored.
METHOD: A mixed-studies integrative review was undertaken. Seven databases were searched for articles published between 2008 and 2018. The PRISMA framework was applied to the search and six studies met the review eligibility criteria. Content analysis of the articles was undertaken and data were compared, looking for different nurse-led models and outcomes related to palliative care in COPD.
RESULTS: Nurse-led, integrated palliative care models for patients with COPD are rare and just four of the six articles found in this review had published results. Advance Care Planning was found to be the most common focus for nurse-led interventions in COPD and in all cases, results demonstrated an improvement in end of life discussions and completion of advance care directives. Of the reviewed articles, none used a qualitative framework to explore nurse-led models that integrated palliative care in COPD.
CONCLUSION: While nurse-led Advance Care Planning was one type of palliative care practice associated with positive patient outcomes, there is a need for deeper exploration of nurse-led models that holistically address the bio-psycho-social-spiritual needs of patients with COPD, and their caregivers.
RELEVANCE TO CLINICAL PRACTICE: Integrating nurse led supportive care clinics into COPD services could be a way forward to address the unmet bio-psycho-social-spiritual needs of patients with COPD, and their caregivers.
ABSTRACT: Objectives:To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race.
DESIGN: Cross-sectional survey.
SETTING: 13 geographically dispersed Alzheimer's Disease Centers across the United States.
PARTICIPANTS: 431 racially diverse caregivers of persons with dementia.
MEASUREMENTS: Survey on "Care Planning for Individuals with Dementia."
RESULTS: The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful.
CONCLUSIONS: Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.
BACKGROUND: Demographic characteristics play a role in influencing the decision to make end-of-life (EOL) directives among older adults living in the United States.
AIMS: To examine the associations between older adults' demographic characteristics (age, sex, marital status, residential site, and educational level) and their perceived importance of four self-care actions for EOL planning, as well as their desire and ability to perform these actions.
SETTINGS: A cross-sectional survey study of community-dwelling adults living in the southern United States from 2015 to 2016.
PARTICIPANTS: Community-dwelling adults aged 65 years and older (N = 123).
METHODS: A self-administered tool, the Patient Action Inventory for Self-Care and a demographic questionnaire were used. Multiple logistic regression was performed.
RESULTS: Forty-seven of (38.2%) participants lived in an urban community and 76 (61.8%) in a rural community. Demographic variables that were significant across the predictive models were older adults' residence, education levels, age, and marital status. Four demographic characteristics of living in rural areas, without a high school education, being 75 years or older, and married could be social determinants of EOL planning.
CONCLUSIONS: Older adults may need community-based support to address their end-of-life needs, especially those elders who want to remain independent in their home environment.
OBJECTIVES: The aim of this study was to examine the preferences of home caregivers on patient advance care planning (ACP), including life-sustaining treatment (LST) and the factors relating to these preferences.
BACKGROUND: Personalized ACP aims to respect the autonomy and choices of terminally ill patients regarding end-of-life care. However, there have been cases wherein doctors must instead discuss ACP with surrogates (including caregivers) for various reasons such as dementia, intractable neurologic diseases, and cerebrovascular accident.
METHODS: In this cross-sectional study, self-written questionnaires (filled by individuals themselves) were distributed to 506 in-home caregivers in 6 Japanese prefectures; the questionnaires contained items on caregiver and patient demographics, number of people living together in a caregiver's home (aside from patients), care duration, comprehension level of doctors' explanations regarding their patient's condition, patient diseases, whether caregivers have or have not told patients about their disease, level of nursing care, and caregiver LST preference (preferred or not preferred). The questionnaire package also contained the Burden Index of Caregiver-11, Patient Health Questionnaire-9, and Short Form-8 Health Survey.
RESULTS: Valid responses were obtained from 309 caregivers. More than half of them were not sure of their patient's LST preference. Sex, number of people living together in a care home, comprehension level of doctors' explanations, and care duration were found to be the significant factors relating to caregivers' LST preference (P < .05).
CONCLUSION: Health providers should be cognizant of the background factors relating to caregiver ACP preference when deciding on LST for terminal patients.
OBJECTIVE: This study examined advance care planning as delivered by general practice registrars and recently fellowed GPs in New South Wales rural settings. The facilitators and barriers to advance care planning uptake in these areas were investigated, as well as the state of general practice training on advance care planning.
DESIGN: Qualitative descriptive methodology, involving semi-structured face-to-face and telephone interviews.
SETTING: Primary care.
PARTICIPANTS: General practice registrars and recently fellowed GPs in New South Wales rural settings. Definition of rural using the Australian Standard Geographical Classification - Remoteness Area. Thirteen participants were included in the study.
MAIN OUTCOME MEASURES: Thematic analysis of interview transcripts elucidated key issues emerging from participants' accounts.
RESULTS: Key barriers included doctor-dependent uptake, demands on doctor's time and the limited relevant resources available. Facilitators recognised were patient control in end-of-life care and long-standing relationships between GPs and their patients. Uptake among patients was low, and minimal training on advance care planning reported.
CONCLUSION: The lack of training opportunities in advance care planning during vocational training, especially when combined with the essential role played by rural GPs in initiating advance care planning and providing end-of-life care, appears to be a major problem that might contribute to poor uptake among patients in rural areas. This study demonstrated, however, the significant benefits that advance care planning could bring in patients living in rural communities if delivered effectively. Given that rural GPs face a number of barriers to providing routine health care, these results highlight an important need to provide GPs and rural communities with support, education, incentive, better administrative tools, options and greater awareness of advance care planning.
BACKGROUND: It is unknown if the implementation of an advance care planning (ACP) program is feasible in daily clinical practice for glioblastoma patients. We aimed to develop an ACP program and assess the preferred content, the best time to introduce such a program in the disease trajectory, and possible barriers and facilitators for participation and implementation.
METHODS: A focus group with health care professionals (HCPs) and individual semi-structured interviews with patients and proxies (of both living and deceased patients) were conducted.
RESULTS: All predefined topics were considered relevant by participants, including the current situation, worries/fears, (supportive) treatment options, and preferred place of care/death. Although HCPs and proxies of deceased patients indicated that the program should be implemented relatively early in the disease trajectory, patient-proxy dyads were more ambiguous. Several patient-proxy dyads indicated that the program should be initiated later in the disease trajectory. If introduced early, topics about the end of life should be postponed. A frequently mentioned barrier for participation was that the program would be too confronting, while a facilitator was adequate access to information.
CONCLUSION: This study resulted in an ACP program specifically for glioblastoma patients. Although participants agreed on the program content, the optimal timing of introducing such a program was a matter of debate. Our solution is to offer the program shortly after diagnosis but let patients and proxies decide which topics they want to discuss and when. The impact of the program on several patient- and care-related outcomes will be evaluated in the next step.