Preferences For Future Care Research Articles

Values and preferences for future end-of-life care among the indigenous Sámi.

Research with Indigenous peoples internationally indicates the importance of socio-cultural contexts for end-of-life (EoL) preferences. However, knowledge about values and preferences for future EoL care among the Indigenous Sámi is limited. We investigated if and how a Swedish adaptation of the English-language GoWish cards, DöBra cards, supports reflection and discussion of values and preferences for future EoL care among the Sámi. This qualitative study is based on interviews with 31self-defined Sámi adults who used DöBra cards at four events targeting the Sámi population, between August 2019 and February 2020. Using directed content analysis, we examined aspects of interviews addressing Sámi-specific and Sámi-relevant motivations for choices. Data about individuals' card rankings were collated and compiled on group level to examine variation in card choices. All 37 pre-formulated card statements were ranked as a top 10 priority by at least one person. The cards most frequently ranked in the top 10 were a wild card used to formulate an individual preference and thus not representing the same statement, and the pre-formulated card 'to have those I am close to around me'. Reactions to interviews varied, with some participants commenting on the taboo-laden nature of discussing EoL issues, although many commented positively about EoL conversations in general, and the benefit of using the DöBra cards in particular. We categorised reasoning about Sámi-specific and Sámi-relevant values and preferences under the themes: Attributes of contemporary Sámi culture, Spirituality, Setting for death, Maintaining identity, Preferences related to death, Dying and EoL care and After death. The DöBra cards were found to be easy-to-use, understandable and a flexible tool for initiating and supporting conversations about EoL values and preferences. The open formulations of cards, with wild cards, enable discussions about individual values and preferences, with potential to reflect life as a Sámi in Sweden.

COVID-19 and advance care planning: A unique opportunity.

32 Background: Advance Care Planning (ACP) is a process to document patient preferences for future health care. Conversations between healthcare providers, patients, and loved-ones are required to reflect a patient’s values, goals, and ultimately their choices for life-sustaining treatments (LST). The COVID-19 pandemic has highlighted the critical importance of these discussions and the need for improved patient engagement. Methods: As COVID-19 infections surged, the VA Northern California Health Care System (VA NCHCS) Hospice and Palliative Care Section (HPCS) partnered with Patient Aligned Care Teams to expand urgent outreach to high-risk patients needing LST documentation. High risk was defined as age > 80, COPD or asthma diagnosis, or Care Assessment Need Score > 80 (CAN Score models risk of hospitalization or death within 1 year). An experienced HPCS Nurse Practitioner (NP) contacted these identified patients to 1.) provide COVID-19 education, 2.) conduct a high-quality goals of care conversation, and 3.) complete LST documentation and other ACP needs. A representative cohort was then followed up to evaluate concordance of treatment with their documented preferences. Results: Between March 2020 and September 2020, 910 patients were identified as high risk. Of these patients, 294 agreed to participate in the telehealth visit and complete LST documentation. Importantly, 108 (37%) patients chose DNR and other LST limitations. In addition, 142 (48%) patients created POLST documentation and 128 (43%) completed Advance Directives. Over 70% of patients who were hospitalized in the VA received care concordant with the newly documented LST preferences. A follow up survey of 29 participants found the outreach impactful and their preferences documented correctly. Conclusions: Prior studies have demonstrated success at educating primary providers to conduct ACP discussions, but given the limitations imposed by COVID-19 restrictions, this novel and highly cost-effective process of coupling a highly trained HPCS NP with a primary care team to perform ACP was piloted with success. After only a single ACP discussion, patients were able to formalize their limits to treatment and subsequent care aligned with these preferences. Patients also found this focused ACP discussion meaningful. This pathway will be integrated within the VA NCHCS as a long-term approach to continued ACP outreach.

Advance Care Planning in Chronically Ill Patients With an Episodic Disease Trajectory in the Acute Care Setting: A Quality Improvement Project.

Advance care planning (ACP) is a fluid discussion between patients and providers to define preferences for future medical care. In the acute care setting, ACP is limited due to lack of structured process for identifying persons who may benefit from ACP. This quality improvement (QI) project aimed to increase the frequency of ACP discussions and documentation of preferences by targeting geriatric patients with an episodic disease trajectory for ACP. This project used an intervention and comparison group design to target English-speaking, geriatric adults at a large academic medical center with a diagnosis of NYHA class III/IV HF and/or GOLD criteria III/IV COPD for ACP discussions. The intervention group was compared to a group with a range of diagnoses who were approached in a non-systematic way. Thirteen (n = 13) participants completed all aspects of the QI project. Results showed a non-significant increase in the number of patients with a diagnosis of HF and/or COPD who participated in an ACP discussion when compared to the comparison group (n = 20, p = 0.131), as well as a non-significant increase in the number of ACP tools documented in the HER (53.8% compared to 30%) (x = 1.877, p = 0.171). While this project demonstrated non-significant statistical results in the incidence and documentation of an ACP tool, this project increased the number of ACP discussions had, which is clinically significant.

SY24-2 Advance care planning through collaboration between physicians and nurses: Discussions to identify and advocate the intangible value of patients

A survey conducted in 2019 at Kyoto University hospital revealed that about 90% of advanced lung cancer patients had thought or tried to think about their goals and preferences for future medical treatment and care, but they were not allowed to have the opportunity to discuss their wish with their health care providers. It is essential that patients receive support for advanced care planning (ACP) from health care professionals at the appropriate time so that they can live their lives with peace of mind and reasonable prospects. However, it has been reported that clinicians, as well as patients and their families, face a variety of barriers when it comes to ACP. In this presentation, strategies for physician-nurse collaboration and tools that can be utilized for end-of-life discussions are discussed to overcome these challenges. The irreplaceable and important values of patients are often invisible to them and drift unnoticed in their daily lives. In the course of ACP discussions with patients with serious illnesses, when patients are supported to reflect on their values, verbalize them and share them with their families and health care providers, they are more likely to find ways to maintain and improve their well-being. The role of the health care provider in placing the intangible value at the forefront will be mentioned.

Facilitating advance care planning in the general practice setting for patients with a chronic, life-limiting illness: protocol for a phase-III cluster-randomized controlled trial and process evaluation of the ACP-GP intervention

BackgroundAdvance care planning (ACP), a process of communication about patients’ preferences for future medical care, should be initiated in a timely manner. Ideally situated for this initiation is the general practitioner (GP). The intervention to improve the initiation of ACP for patients with a chronic life-limiting illness in general practice (ACP-GP) includes an ACP workbook for patients, ACP communication training for GPs, planned ACP conversations, and documentation of ACP conversation outcomes in a structured template. We present the study protocol of a Phase-III randomized controlled trial (RCT) of ACP-GP that aims to evaluate its effects on outcomes at the GP, patient, and surrogate decision maker (SDM) levels; and to assess the implementation process of the intervention.MethodsThis RCT will take place in Flanders, Belgium. Thirty-six GPs, 108 patients with a chronic, life-limiting illness, and their (potential) SDM will be recruited, then cluster-randomized to the ACP-GP intervention or the control condition. The primary outcome for GPs is ACP self-efficacy; primary outcome for patients is level of ACP engagement. Secondary outcomes for GPs are ACP practices, knowledge and attitudes; and documentation of ACP discussion outcomes. Secondary outcomes for patients are quality of life; anxiety; depression; appointment of an SDM; completion of new ACP documents; thinking about ACP; and communication with the GP. The secondary outcome for the SDM is level of engagement with ACP. A process evaluation will assess the recruitment and implementation of the intervention using the RE-AIM framework.DiscussionWhile the general practice setting holds promise for timely initiation of ACP, there is a lack of randomized trial studies evaluating the effectiveness of ACP interventions implemented in this setting. After this Phase-III RCT, we will be able to present valuable evidence of the effects of this ACP-GP intervention, with the potential for offering a well-tested and evaluated program to be implemented in general practice. The results of the process evaluation will provide insight into what contributes to or detracts from implementation success, as well as how the intervention can be adapted to specific contexts or needs.Trial registrationProspectively registered at with ISRCTN (ISRCTN12995230); registered 19/06/2020.

Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study

BackgroundAdvance care planning (ACP) enables persons to identify preferences for future treatment and care, and to discuss, record and review these preferences. However, the uptake of ACP among patients with chronic diseases is relatively low. Web-based ACP programs can support patients and their relatives in ACP. However, information needs of patients and their relatives for ACP are unknown. The aim of this study is to explore information needs of patients with chronic disease and their relatives for web-based ACP.MethodsWe conducted semi-structured interviews with patients with chronic diseases and relatives at their home or at the study center. In three cases, the patient and relative were paired since they preferred to be interviewed together. We asked about information they would search for when to start with ACP, where they would search for information, what search terms they would use on the Internet, and what content and information they would consider important on an ACP website. The interviewer asked participants to clarify their responses during the interview. We used thematic analysis to analyze the interviewees’ responses.ResultsWe interviewed nine patients with different chronic diseases including amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), chronic obstructive pulmonary disease (COPD) and kidney diseases, and seven relatives, namely partners or (adult) children. The interviewees were aged 24 to 80 years, nine were female and seven were male. Both patients with a chronic disease and relatives mentioned comparable information needs. Many interviewees indicated they would use the Internet to search for information about ACP. Mentioned search terms were “advance care planning”, “treatment plan”, “disease trajectory” and names of patient associations. Information needs concerned their disease trajectory and quality of life, medical treatment decisions, practical support in arranging care, the concept of ACP and guidance in ACP, communication of treatment and care preferences, peer support of others with chronic diseases, and information for relatives. Many appreciated encouragement of their healthcare providers to take a pro-active role in ACP.ConclusionsWe conclude that information needs for ACP included guidance in ACP, support in making decisions about medical treatment, and practical support in arranging care. We recommend adapting web-based ACP information to the information needs of patients and their relatives to increase its findability, uptake and usefulness.

MO200COVID-19 PANDEMIC INCREASED ADVANCE CARE PLANNING DEMAND

Background and AimsAdvance care planning (ACP) enables competent patients to define goals and preferences for future treatments and care, to discuss these goals and preferences with relatives, and if appropriate to record these preferences.After many years of political and social debates, in December 2017 the first advance directive and care planning legislation was approved in Italy. Nevertheless, citizens’ awareness of these issues is scarce as well as the integration of the advance care planning process into clinical routine. The latest data reported to the Italian Parliament by the Ministry of Health indicated that advance directives have been completed by 62030 people, approximately 1.1% of Italian adult population.However, during the last months, the COVID-19 pandemic solicited taking steps towards promoting an advance care planning culture. Indeed, the need of proposing ACP to patients have been recently stressed both by medical associations and national and local institutional documents.MethodSince November 2020, our nephrology unit adopted a protocol approved by Ethical committee by Physician Order of Florence, aimed to conduct ACP interventions with dialysis patients.Firstly, all patients were informed about the possibility to taking part in one or more advance care planning conversations with their nephrologist. Secondly, a semi-structured guide to the conversation was created in order to support physicians in conducting the ACP intervention. Finally, patients along with nephrologist and their relatives, could documented their preferences for future treatments and care.ResultsFrom November to March only one patient asked to receive an ACP intervention. However, since COVID-19 spread in Italy last March, the number of patients who demanded ACP raised up. In the period from April to July, 15 out of 110 hemodialysis patients treated in our center asked for an ACP intervention and filled-in an advance directive. Specifically, no patients required an immediate discontinuation of dialysis, nevertheless 80% of them stated that would not like to continue with dialysis in case he/she was no longer able to self-determine (e.g. permanent loss of capacity to communicate with others).All patients except one have appointed a personal representative (usually their partner). In the eventuality of cardiac arrest, 60% of patients asked for cardiopulmonary resuscitation. Finally, all patients expressed the wish to spend the last days of life at home.ConclusionThe COVID-19 pandemic raised up the number of dialysis patients who required to taking part in a advance care planning intervention. In this sense, the pandemic can be an opportunity for consolidate advance care planning in Italy as well as in other countries, where these interventions are not well known by people and not yet regularly offered in the clinical routine.Using a semi-structured interview for the ACP interview can help the nephrologist to discuss future care and end-of-life topics with their patients.

Informal caregivers and advance care planning: systematic review with qualitative meta-synthesis

BackgroundAdvance care planning (ACP) is a communication process about a person’s values, life goals and preferences for current and future treatment and care. It can improve end-of-life care experiences for...

Perceptions of involvement in advance care planning and emotional functioning in patients with advanced cancer

PurposeAdvance Care Planning (ACP) is positively associated with the quality of care, but its impact on emotional functioning is ambiguous. This study investigated the association between perceptions of ACP involvement and emotional functioning in patients with advanced cancer.MethodsThis study analyzed baseline data of 1,001 patients of the eQuiPe study, a prospective, longitudinal, multicenter, observational study on quality of care and quality of life in patients with advanced cancer in the Netherlands. Patients with metastatic solid cancer were asked to participate between November 2017 and January 2020. Patients’ perceptions of ACP involvement were measured by three self-administered statements. Emotional functioning was measured by the EORTC-QLQ-C30. A linear multivariable regression analysis was performed while taking gender, age, migrant background, education, marital status, and symptom burden into account.ResultsThe majority of patients (87%) reported that they were as much involved as they wanted to be in decisions about their future medical treatment and care. Most patients felt that their relatives (81%) and physicians (75%) were familiar with their preferences for future medical treatment and care. A positive association was found between patients’ perceptions of ACP involvement and their emotional functioning (b=0.162, p<0.001, 95%CI[0.095;0.229]) while controlling for relevant confounders.ConclusionsPerceptions of involvement in ACP are positively associated with emotional functioning in patients with advanced cancer. Future studies are needed to further investigate the effect of ACP on emotional functioning.Trial registration numberNTR6584 Date of registration: 30 June 2017Implications for Cancer SurvivorsPatients’ emotional functioning might improve from routine discussions regarding goals of future care. Therefore, integration of ACP into palliative might be promising.

Prevalence of advance care planning practices among people with chronic diseases in hospital and community settings: a retrospective medical record audit

BackgroundAdvance Care Planning (ACP) enables healthcare professionals to embrace the important process where patients think about their values in life and goals for health care, and discuss their future health care preferences with family members for a time when they are not able to make health care decisions. Despite the promotion of ACP last two decades, and well-known benefits of ACP and a written Advance Care Directive (ACD), they are still underutilised in Australia and across the world. Previous studies have provided some insights, however, an uptake of ACP and prevalence of ACDs in community settings is rarely reported.MethodsThe aim of this study was to determine the uptake of ACP and prevalence of ACDs among people with chronic diseases in hospital and community settings. A retrospective medical record audit of eligible patients looking for evidence of ACP was conducted in 16 research sites in eight hospital and eight community care settings. Participants included those who were admitted to one of the research sites, and who were aged 18 years and over with at least one of nine nominated chronic diseases. The primary outcome measures included the number of patients with evidence of ACP through the following practices: completion of an ACD, appointment of an Enduring Guardian (EG), or completion of a resuscitation plan.ResultsThe overall prevalence of ACD was 2.8% (n = 28) out of 1006 audited records, and only 10 (1%) of them were legally binding. The number of EGs appointed was 39 (3.9%) across the sites. A total of 151 (15.4%) resuscitation plans were found across the eight hospital sites. 95% (n = 144) of the resuscitation plans indicated ‘Not-for-resuscitation’.ConclusionsThe uptake of ACP is very low. Current medical recording system reveals the challenges in ACP lie in the process of storage, access and execution of the ACDs. Given that having an ACD or Enduring Guardian in place is only useful if the treating physician knows how and where to access the information, it has implications for policy, information system, and healthcare professionals’ education.Trial registrationThe study was retrospectively registered with the Australian New Zealand Clinical Trials Registry (Trial ID: ACTRN12618001627246). The URL of the trial registry record http://www.anzctr.org.au/trial/MyTrial.aspx

7 The Elephant in the Room: An Innovative and Effective Approach to Multidisciplinary Advance Care Planning Training

Abstract Background Exploring patients’ preferences for future care is known to reduce adverse health outcomes, limit transfers between care settings institutionalisation and improve quality of life. Patients value opportunities to have honest conversations. In the recent “Talking about Dying” report from the Royal College of Physicians (RCP), it was found that healthcare professionals (HCPs) find it challenging to start conversations with patients and families. Yet the report highlights a need for HCPs to be equipped with the skills and confidence to provide opportunities for advance care planning in primary care, inpatient and outpatient settings. Methods A multi-disciplinary faculty delivered simulation sessions to 115 candidates (50.4% doctors, 33% nurses and 16.5% allied health professionals) from primary and secondary care. Eight half-day sessions have taken place across North London. Each session started with an introductory lecture, followed by simulated scenarios between a professional actor and candidate within small multi-disciplinary groups. Group discussion was facilitated and feedback given. We focused on acknowledging the progressive, complex and unpredictable nature of frailty. Scenarios included resuscitation, re-admission to hospital, risk feeding, complex discharge planning and cultural values in older adults. Results 100% would recommend this multidisciplinary simulation to teach advance care planning. Only 15.6% of candidates felt confident or very confident with conversations; this improved to 90.5% following the simulation and was maintained at 69.5% three months later. Understanding when advance care planning is appropriate improved from 70% to 100%. Three months after the training, 86% stated they had a sustained change in practice in ACP as a result of the course. Conclusion We have demonstrated that our multidisciplinary simulation is an effective format of improving understanding and confidence in having advance care planning conversations. These results are evident both immediately after and at the three month follow up stage demonstrating a sustained change in practice.

17 Conversations on Living and Dying: Facilitating Advance Care Planning for Older People Living with Frailty. A Qualitative Study

Abstract Introduction Advance care planning (ACP) is a process that supports people to articulate their future care preferences. This process is a priority for older people living with frailty due to their vulnerability to sudden deterioration, something that has been highlighted during the current pandemic. However, ACP is uncommon for older people living with frailty, hindering choice and person-centred end-of-life care. This study aimed to identify the barriers, facilitators and behaviours required to support cognitively-able, community-dwelling older people living with frailty to engage with ACP. Findings will inform the development an ACP intervention underpinned by behavioural change theory. Methods Semi-structured interviews with community-dwelling older people living with frailty (Clinical Frailty Score 6 or 7) and family members were audio-recorded, filmed and transcribed verbatim. A thematic analysis framework was developed using a recent systematic review, and expanded to reflect new themes. Results Ten older people living with frailty and eight family members were interviewed. The older people’s median age was 85 and seven were female. Family members were spouses (n = 4) and children (n = 4). The key findings were that: the meaning of ACP could be unclear and at times confusing; many of the older people believed ACP was not relevant to them; relationships and relational autonomy were of greater relevance to older people than autonomous decision-making; older people were more interested in living well now than in planning for the future. Conclusions Older people living with frailty need to be engaged with ACP in a way that helps them to understand what ACP is and why it is relevant for them. Professionals need to develop their skills in assessing readiness and facilitating ACP conversations with this population at the older person’s pace. Reframing ACP to include living well now alongside encouraging family inclusion would also relate better to this populations’ lives.

The Limited Value of Dementia-Specific Advance Directives.

Many people are worried about developing dementia, fearing the losses and burdens that accompany the condition. Dementia-specific advance directives are intended to address dementia's progressive effects, allowing individuals to express their treatment preferences for different stages of the condition. But enthusiasm for dementia-specific advance directives should be tempered by recognition of the legal, ethical, and practical issues they raise. Dementia-specific advance directives are a simplistic response to a complicated situation. Although they enable people to register their future care preferences, in many cases, those preferences will not, and should not, determine their later care.

Maternity Care Preferences for Future Pregnancies Among United States Childbearers: The Impacts of COVID-19.

The COVID-19 pandemic has impacted maternity care decisions, including plans to change providers or delivery location due to pandemic-related restrictions and fears. A relatively unexplored question, however, is how the pandemic may shape future maternity care preferences post-pandemic. Here, we use data collected from an online convenience survey of 980 women living in the United States to evaluate how and why the pandemic has affected women’s future care preferences. We hypothesize that while the majority of women will express a continued interest in hospital birth and OB/GYN care due to perceived safety of medicalized birth, a subset of women will express a new interest in out-of-hospital or “community” care in future pregnancies. However, factors such as local provider and facility availability, insurance coverage, and out-of-pocket cost could limit access to such future preferred care options. Among our predominately white, educated, and high-income sample, a total of 58 participants (5.9% of the sample) reported a novel preference for community care during future pregnancies. While the pandemic prompted the exploration of non-hospital options, the reasons women preferred community care were mostly consistent with factors described in pre-pandemic studies, (e.g. a preference for a natural birth model and a desire for more person-centered care). However, a relatively high percentage (34.5%) of participants with novel preference for community care indicated that they expected limitations in their ability to access these services. These findings highlight how the pandemic has potentially influenced maternity care preferences, with implications for how providers and policy makers should anticipate and respond to future care needs.

Chronic obstructive pulmonary disease and advance care planning: A synthesis of qualitative literature on patients' experiences.

Advance Care Planning supports patients to share their personal values, goals, and preferences for future medical care with their family members and healthcare professionals. The aim of this review was to uncover what is known about patients with Chronic Obstructive Pulmonary Disease and their experiences with Advance Care Planning. A systematic review and thematic synthesis of qualitative studies was undertaken. Five databases were searched for qualitative articles published between 2009-2019. The review was guided by the PRISMA framework and seven studies met the eligibility criteria. Thematic synthesis of descriptive themes in each article was undertaken to develop overarching analytical themes, related to the experience of patients with Chronic Obstructive Pulmonary Disease and Advance Care Planning. Four analytical themes emerged from the review of the articles that met the inclusion criteria: patient readiness and willingness for Advance Care Planning discussions; considering the future; trusted relationships with healthcare professionals; and shared decision making. Patients with Chronic Obstructive Pulmonary Disease are generally open to Advance Care Planning discussions with healthcare professionals who are well-informed, and trusted by the patient. Models of care that integrate Advance Care Planning are beneficial in other non-malignant settings, and may be a way forward to support Advance Care Planning as part of routine care for patients with Chronic Obstructive Pulmonary Disease.

Gaining insight into the views of outpatients with Huntington\u2019s disease regarding their future and the way they deal with their poor prognosis: a qualitative study

BackgroundHuntington’s disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become lost as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). To improve ACP for HD patients, there is a need to better understand how these patients face their poor prognosis.AimTo gain insight into the views of HD patients who receive outpatient care regarding their future and the way they deal with the poor prognosis of their disease.MethodsA qualitative study using semi-structured interviews with 12 patients with HD (7 outpatient clinic, 3 day care, 2 assisted living facility). Audio-recorded interviews were transcribed verbatim. Through reading and re-reading interviews, writing memos and discussions in the research team, strategies were identified.ResultsThree strategies emerged for facing a future with HD. Participants saw the future: 1) as a period that you have to prepare for; 2) as a period that you would rather not think about; 3) as a period that you do not have to worry about yet. Participants could adopt more than one strategy at a time. Even though participants realized that they would deteriorate and would need more care in the future, they tried to keep this knowledge ‘at a distance’, with the motivation of keeping daily life as manageable as possible.ConclusionsOfficial ACP guidelines recommend discussing goals and preferences for future treatment and care, but patients tend to want to live in the present. Further research is needed to elucidate the best approach to deal with this discrepancy.

Muslim perspectives on advance care planning: a model for community engagement.

Background:Advance care planning is the process of communicating and documenting a person’s future health care preferences. Despite its importance, knowledge of advance care planning is limited, especially among the Islamic community. In addition, little is known about how the Islamic community views advance care planning in the context of their religious and cultural beliefs.Objectives:We aimed to increase knowledge of the importance of advance care planning, to improve health care provider and public knowledge, and to encourage dialogue between the community and health care providers.Methods:We organized a community event and assembled a multi-disciplinary panel. Through a moderated discussion, the panel members offered their perspectives of advance care planning within a Muslim context.Results:Approximately 100 individuals attended the event including community members, health care providers, medical students, and faith leaders. More than 90% of respondents rated the event as very good or excellent, found the session useful and were encouraged to reflect further on advance care planning.Conclusion:This event was successful in raising awareness about advance care planning within the Islamic community as well as educating health care providers on Islamic views. This model of community and health care provider engagement may also be beneficial for other faith groups wishing to discuss advance care planning within their respective religious and cultural contexts.

Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions.

BackgroundDementia can have a profound impact on decision making. People living with dementia (PLwD) often need to make decisions about health care, and, as dementia progresses, decisions may need to be made on their behalf. Specific interventions may support this process.Review QuestionWhat interventions are effective in improving shared decision making or surrogate decision making on the health care of PLwD?MethodsA narrative systematic review of existing literature was conducted. Seven databases, grey literature and key journals were searched. After exclusion by title, abstracts then full texts were reviewed collaboratively to manage any disagreements.ResultsEight studies met the inclusion criteria. Two articles, including one RCT, evaluated decision aids regarding the use of enteral feeding in advanced dementia. Six further articles, including five RCTs, were found which evaluated the effectiveness of interventions supporting patients or carers with advance care planning.ConclusionDecision‐making interventions typically consist of multiple components which aim to establish preferences for future health care. Advance care planning interventions supported aspects of the decision‐making processes but their impact on decision quality was rarely evaluated. Interventions did not increase the concordance of decisions with a person's values. The decision‐specific interventions are unlikely to produce benefit in other decision contexts.Patient InvolvementTwo caregivers, a public stakeholder group and a carer group were consulted in the design of the wider study to which this review relates. Six PLwD refined the research questions addressed in this paper.

Advance care planning in patients with advanced cancer: A 6-country, cluster-randomised clinical trial.

Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce. To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015-2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0-3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of life (operationalised as European Organisation for Research and Treatment of Cancer [EORTC] emotional functioning) and symptoms. Secondary outcomes were coping, patient satisfaction, shared decision-making, patient involvement in decision-making, inclusion of advance directives (ADs) in hospital files, and use of hospital care. In all, 1,117 patients were included (442 intervention; 675 control), and 809 (72%) completed the 12-week questionnaire. Patients' age ranged from 18 to 91 years, with a mean of 66; 39% were female. The mean number of ACP conversations per patient was 1.3. Fidelity was 86%. Sixteen percent of patients found ACP conversations distressing. Mean change in patients' quality of life did not differ between intervention and control groups (T-score -1.8 versus -0.8, p = 0.59), nor did changes in symptoms, coping, patient satisfaction, and shared decision-making. Specialist palliative care (37% versus 27%, p = 0.002) and AD inclusion in hospital files (10% versus 3%, p < 0.001) were more likely in the intervention group. A key limitation of the study is that recruitment rates were lower in intervention than in control hospitals. Our results show that quality of life effects were not different between patients who had ACP conversations and those who received usual care. The increased use of specialist palliative care and AD inclusion in hospital files of intervention patients is meaningful and requires further study. Our findings suggest that alternative approaches to support patient-centred end-of-life care in this population are needed. ISRCTN registry ISRCTN63110516.

QOLP-12. EMBEDDING OUTPATIENT PALLIATIVE CARE INTO NEURO-ONCOLOGY CLINIC – RESULTS FROM A ONE YEAR PILOT

Abstract BACKGROUND Glioblastoma (GBM) patients fall within NCCN and ASCO guidelines for early palliative care (PC). However, data suggests they are less likely than systemic cancers to be referred to PC and often later in their illness. This results in potential missed opportunities, both for improving symptom control and earlier completion of important tasks, like advance care planning. Data on how to best incorporate comprehensive PC into routine neuro-oncology (NO) patient care is needed. METHODS We piloted a program embedding a PC physician into UCSF’s NO clinic one half-day per week. NO physicians were encouraged to refer GBM patients within 3 months of diagnosis and other patients with PC needs. PC visits were offered in-person, by telemedicine, or at home. PC physician and NO social worker made joint visits when possible; chaplaincy support was available by telemedicine. Data was collected using Palliative Care Quality Network (PCQN) database and patient satisfaction survey. RESULTS To date, 37 patients have been referred resulting in 103 visits (average 2.8 visits/person): 25% in-person; 68% telemedicine; 6% at home. PC physician and NO social worker met jointly with 46% visits. Median age was 58 years, 41% female, 81% non-Hispanic white, 84% GBM, median 9 months from diagnosis, and 73% receiving first line treatment. Interventions addressed across visits: 94% non-pain symptoms, 76% psychosocial needs; 71% pain; and 70% GOC. Results from satisfaction survey demonstrated 79% would recommend seeing PC embedded in NO to others and highest benefits were attention to practical considerations to staying healthy at home, discussing preferences for future medical care, and help with coping. CONCLUSIONS Embedding PC into NO clinics is a unique model for addressing symptoms and GOC early, is well received by patients and caregivers, and provides opportunities for collaboration and PC physicians to specialize in caring for needs of NO patients.