Care Planning Discussions Research Articles

Experiences and involvement of family members in transfer decisions from nursing home to hospital: a systematic review of qualitative research

BackgroundNursing home residents (NHR) are characterized by increasing frailty, multimorbidity and care dependency. These conditions result in frequent hospital transfers which can lead to negative effects on residents’ health status and are often avoidable. Reasons for emergency department (ED) visits or hospital admissions are complex. Prior research indicated factors influencing transfer decisions in view of nursing staff and general practitioners. The aim of this systematic review is to explore how family members experience and influence transfers from nursing home (NH) to hospital and how they are involved in the transfer decision.MethodsA systematic literature search was performed in Medline via PubMed, Ebsco Scopus and CINAHL in May 2018. Studies were eligible if they contained information a) about the decision to transfer NHR to hospital and b) the experiences or influence of family members. The review followed Joanna Briggs Institute's (JBI) approach for qualitative systematic reviews. Screening, selection and quality appraisal of studies were performed independently by two reviewers. Synthesis of qualitative data was conducted through meta-aggregation.ResultsAfter screening of n = 2863 articles, in total n = 10 qualitative studies were included in the review. Results indicate that family members of NHR experience decision-making before hospitalization differently. They mainly reported NH-related, hospital-related, and family/resident-related factors influencing the transfer decision. The involvement of family members in the decision-making process varies - from no involvement to insistence on a decision in favor of their personal preferences. However, hospital transfer decisions and other treatment decisions (e.g. advance care planning (ACP) discussions) were commonly discussed with physicians and nurses. Conflicts between family members and healthcare providers mostly arose around the interpretation of resident’s best interest. In general, family members perceive discussions as challenging thus leading to emotional stress and discomfort.ConclusionThe influence of NHR family members concerning hospital transfer decisions varies. Family members are an important link for communication between resident and medical staff and for communication between NH and hospital. Interventions aiming to reduce hospitalization rates have to take these findings into account.

P446 The experiences of staff in initiating and carrying out advanced care planning (ACP) discussions with patients with cystic fibrosis

P446 The experiences of staff in initiating and carrying out advanced care planning (ACP) discussions with patients with cystic fibrosis

Preparing Older Patients With Serious Illness for Advance Care Planning Discussions in Primary Care

ContextLittle is known about how to prepare older patients for advance care planning (ACP) discussions in primary care. ObjectivesThe objective of the study was to explore older patients' perspectives and experiences on ACP discussions with family members and/or primary care clinicians. MethodsWe conducted a qualitative interview study with 20 older patients who were involved in the clinic's ACP quality improvement initiative. We used an inductive approach to generate a coding scheme and used thematic analysis alongside a constant comparative methodology to iteratively refine emergent themes after coding the data. We used the transtheoretical behavior change model to conceptualize the process of ACP discussions, focusing on the contemplation, preparation, and action stages. ResultsFour key themes emerged from our analyses: 1) the relevance/importance of ACP as a whole; 2) independently conceptualizing wishes and preferences for the future; 3) the process of engagement in ACP discussions; and 4) different outcomes of ACP discussions. While patients contemplated having an ACP discussion, they needed time to conceptualize their wishes on their own before documenting wishes or engaging with others. Moving to the preparation stage, patients shared their perspectives about how to engage family members and primary care clinicians in ACP discussions and reported different outcomes of these discussions, which varied according to patients' goals for ACP. ConclusionUnderstanding how to best prepare patients for ACP discussions from patients enrolled in an ACP primary clinic quality improvement initiative may assist primary care practices in developing interventions to improve the occurrence and effectiveness of such discussions.

Equal palliative care for patients with COPD? A nationwide register study

Background: Although chronic obstructive pulmonary disease (COPD) is a life-limiting disease with a significant symptom burden, the patients are more often referred to nursing homes (NH), than to specialist palliative care (SPC) at the end of life (EOL). This study aimed to compare patients with COPD in SPC with those in NH and to compare the care provided.Methods: A national register study was carried out where the Swedish National Airway Register and the Swedish Register of Palliative Care were merged. COPD patients who died in NHs or short-term facilities were included in the NH group (n = 415) and those who died in SPC were included in the SPC group (n = 355). Demographic and clinical variables were included from the Swedish National Airway Register and variables concerning EOL care from the Swedish Register of Palliative Care.Results: Symptom prevalence was similar in NHs and SPC, but symptom assessment (32% vs 20%), symptom relief medication (93-98% in SPC vs 74-90% in NH), EOL discussions (88% vs 66%), and bereavement support (94% vs 67%) were more likely in SPC (in all comparisons p < 0.001). Younger age and co-habiting increased the probability of dying in SPC (p < 0.001).Conclusion: Despite similar symptom prevalence, older persons are more likely to be referred to NHs. If applying a palliative care philosophy in NHs, routine symptom assessment and prescription of rescue medication for frequent symptoms, would be more likely. Promoting advance care planning and EOL discussions at an earlier stage would result in more prepared patients and families.

Barriers to Use of Palliative Care and Advance Care Planning Discussions for Patients With End-Stage Liver Disease

Despite evidence for the benefits of palliative care (PC) referrals and early advance care planning (ACP) discussions for patients with chronic diseases, patients with end-stage liver disease (ESLD) often do not receive such care. We sought to examine physicians' perceptions of the barriers to PC and timely ACP discussions for patients with ESLD. We conducted a cross-sectional survey of hepatologists and gastroenterologists who provide care to adult patients with ESLD, recruited from the American Association for the Study of Liver Diseases 2018 membership registry. Using a questionnaire adapted from prior studies, we assessed physicians' perceptions of barriers to PC use and timely ACP discussions; 396 of 1236 eligible physicians (32%) completed the questionnaire. The most commonly cited barriers to PC use were cultural factors that affect perception of PC (by 95% of respondents), unrealistic expectations from patients about their prognosis (by 93% of respondents), and competing demands for clinicians' time (by 91% of respondents). Most respondents (81%) thought that ACP discussions with patients who have ESLD typically occur too late in the course of illness. The most commonly cited barriers to timely ACP discussions were insufficient communication between clinicians and families about goals of care (by 84% of respondents) and insufficient cultural competency training about end-of-life care (81%). There are substantial barriers to use of PC and timely discussions about ACP-most hepatologists and gastroenterologists believe that ACP occurs too late for patients with ESLD. Strategies are needed to overcome barriers and increase delivery of high-quality palliative and end-of-life care to patients with ESLD.

A Tool to Assess Patient and Surrogate Knowledge About the POLST (Physician Orders for Life-Sustaining Treatment) Program

ContextIt is especially important that patients are well informed when making high-stakes, preference-sensitive decisions like those on the Physician Orders for Life-Sustaining Treatment (POLST) form. However, there is currently no way to easily evaluate whether patients understand key concepts when making these important decisions. ObjectivesTo develop a POLST knowledge survey. MethodsExpert (n = 62) ratings of key POLST facts were used to select items for a POLST knowledge survey. The survey was administered to nursing facility residents (n = 97) and surrogate decision-makers (n = 112). A subset (n = 135) were re-administered the survey after a standardized advance care planning discussion to assess the scale's responsiveness to change. ResultsThe 19-item survey demonstrated adequate reliability (α = 0.72.). Residents' scores (x = 11.4, standard deviation 3.3) were significantly lower than surrogate scores (x = 14.7, standard deviation 2.5) (P < 0.001). Scores for both groups increased significantly after administration of a standardized advance care planning discussion (P < 0.001). Although being a surrogate, age, race, education, cognitive functioning, and health literacy were significantly associated with higher POLST Knowledge Survey scores in univariate analyses, only being a surrogate (P < 0.001) and being white (P = 0.028) remained significantly associated with higher scores in multivariate analyses. ConclusionThe 19-item POLST Knowledge Survey demonstrated adequate reliability and responsiveness to change. Findings suggest the survey could be used to identify knowledge deficits and provide targeted education to ensure adequate understanding of key clinical decisions when completing POLST.

A video-supported nurse-led advance care planning on end-of-life decision-making among frail older patients: Protocol for a randomized controlled trial.

To examine the effect of a video-supported nurse-led advance care planning to frail geriatric patients on end-of-life decision-making outcomes in patients and their carers. This is a double-blinded randomized controlled trial with parallel arms. The protocol was approved by the Institutional Review Board of the participating hospital on 1 August 2018. Frail elders and their carer if any are enrolled during hospitalization, and undergo randomization after discharged. The intervention group receives a 2-week video-supported nurse-led advance care planning programme (N=149) while the control group receives a 2-week health education program at home (N=149). Follow-up surveys via telephone at 1 and 6months measure outcomes regarding end-of-life decision-making from both the patients and the carers. Advance care planning discussion is to understand patient's values, preferences and treatment for care on their anticipation of future deterioration. Treatment options for end-of-life care may not be well-received especially elders because in the discussion process, technical medical terms are presented in an abstract, hypothetical way that are hard to understand. The present study aims to evaluate the effect of a nurse-led advance care planning supplementing with a video showing end-of-life treatment options to promote end-of-life care decision-making among frail geriatric patients. The results will help identify effective elements of advance care planning and inform the development of an evidence?based structured advance care planning intervention in response to the need for quality end-of-life care. Chinese Clinical Trial Registry ChiCTR-IOR-17012341.

Time for Advance Care Planning Discussions During Transitions in Care in Cancer Clinical Trials

Time for Advance Care Planning Discussions During Transitions in Care in Cancer Clinical Trials

Nursing home staff members' knowledge, experience and attitudes regarding advance care planning: a cross-sectional study involving 12 Italian nursing homes.

Advance care planning may be beneficial for nursing home residents, but its implementation is suboptimal in several countries. To investigate knowledge of, attitudes towards, and experience with advance care planning of nursing home staff members in Italy. Cross-sectional survey involving all healthcare professionals working in 12 Italian nursing homes. Statistical analyses investigated interactions between participants' characteristics, knowledge, attitudes and frequency of advance care planning discussion with residents. Of the 185 participants (80.5% female, mean age 43.6 ± 9.2years), 29.7% reported that they had heard of advance care planning, but their actual knowledge was suboptimal. Participants had positive attitudes towards advance care planning, and most of them clearly recognized its benefits. Apprehension about upsetting the patient or their family, or that patients were not ready for these conversations were the main concerns. Only 16% of respondents discussed advance care planning at least sometimes, usually upon patient/family input. Greater knowledge was significantly correlated with more positive attitudes towards advance care planning. The issues of healthcare professionals' knowledge and training in advance care planning, and of knowledge and awareness of advance care planning in patients, their families, and the general population were considered either main barriers or facilitators. Nursing home staff members' concerns towards advance care planning seemed to be related to a misconception about patient and family willingness to discuss it. A multifaceted strategy including educational and training programmes and the increase of public awareness is needed to implement advance care planning in Italian nursing homes.

Attitudes and beliefs of a mandatory palliative care rotation by hematology and medical oncology fellows at a major comprehensive cancer center.

98 Background: The ACGME requires incorporating palliative care (PC) competencies into Hematology and Medical Oncology (HMO) fellowship curriculum. The primary aim of this study was to determine the attitudes and beliefs regarding PC of HMO fellows who completed a 4 week mandatory PC rotation. Methods: The rotation included a 4 week standardized curriculum covering all PC domains and all HMO fellows rotated in acute palliative care unit (APCU), consult service and outpatient clinic. HMO fellows were provided educational materials and attended all didactic sessions. All HMO fellows from 2004 to 2017 were sent a 39 item survey adapted from published studies on oncology trainee perception of PC. Results: 77/105 (73%) HMO fellows completed the survey (median age of 40 years, 57% males and 82% practicing in an academic setting). The following were reported to improve after the PC rotation: (a) assessment and management of symptoms (98%); (b) opioid prescription (89%), opioid rotation (78%) and identification of opioid side effects (87%); (c) communication with patients and families (91%), advance care planning discussion (88%), DNR discussion (88%); (d) comfort discussing ethical issues (74%); (e) ability to cope with stress of terminal illness (58%). Strongly agree to agree was expressed by 76 (98%) for improved knowledge of symptom assessment &amp; management vs 57 (74%) for ethics (p = 0.0001) and 45 (58%) for coping with stress of terminal illness (p = 0.0001). HMO fellows were more likely to refer patients to PC (83%) for uncontrolled symptoms (97%), psychological distress (88%) or with advanced disease regardless of symptoms (56%) after the rotation. The APCU rotation was felt to be most beneficial (93%). The PC rotation educational experience was felt to be either far better or better (53%) or same (45%) as other oncology rotations. 98% would recommend PC rotations to other HMO fellows and 95% felt rotation should be mandatory. Conclusions: HMO fellows reported PC rotation improved their knowledge in all PC domains, felt PC rotation was far better to better than other oncology rotations, and were more likely to refer patients to PC.

Using Best Practice Advisory alert to increase early advanced care planning discussion and palliative care referral in advanced cancer patients.

320 Background: Patients with advanced cancer can benefit from early initiation of palliative care (PC) and advanced care planning (ACP). In theory, the Medical Order for Life-Sustaining Treatments (MOLST), which provides a vehicle for end-of-life discussion, could lead to improved uptake of ACP and PC. In order for MOLST forms to influence these care process outcomes, methods are needed to help clinicians introduce the forms to patients in a compassionate manner. The objective of this study is to develop a best practice advisory (BPA) alert in the electronic medical record (EMR) to help oncologists identify appropriate patients for ACP and PC referral and evaluate its impact on improving MOLST form and palliative referral order documentation in EMR for these patients. Methods: BPA alert criteria included Lung and GI cancer patients with stage IV disease or undergoing treatment with palliative intent. The oncologists could act on the alert by either acknowledging it with action statement (I have already discussed ACP, I intend to discuss ACP in this or next visit, Patient unlikely to die in next 12 months, other) or dismiss it. We examined the rates of MOLST form and PC referral orders in the EMR 12-months before and after the BPA was implemented in 03/2018. Results: The BPA fired in 424 patients who met the criteria over a period of 9 weeks. It was acknowledged in 409 and cancelled in 15 patients. Following the alert, 40 (9%) patients had a MOLST form added to the chart compared to only 9 (2%) patients before the alert and 17 (4%) patients had palliative care referral order placed vs. 10 (2%) patients before the alert. Physicians acknowledged discussing ACP in 145 patients, most of whom (25/30) initiated these conversations after the BPA was implemented. Data collection is ongoing to capture BPA effect for longer follow-up. Conclusions: The BPA alert intervention resulted in significant increase in documentation of ACP and palliative referral order suggesting the potential of this tool in improving adherence to national guidelines calling for early initiation of palliative care and advance care planning in patients with advanced cancers.

Implementation and adoption of advanced care planning in the elderly trauma patient

BackgroundGeriatric trauma has high morbidity and mortality, often requiring extensive hospital stays and interventions. The number of geriatric trauma patients is also increasing significantly and accounts for a large proportion of trauma care. Specific geriatric trauma protocols exist to improve care for this complex patient population, who often have various comorbidities, pre-existing medications, and extensive injury within a trauma perspective. These guidelines for geriatric trauma care often suggest early advanced care planning (ACP) discussions and documentation to guide patient and family-centered care.MethodsA provincial ACP program was implemented in April of 2012, which has since been used by our level 1 trauma center. We applied a before and after study design to assess the documentation of goals of care in elderly trauma patients following implementation of the standardized provincial ACP tool on April 1, 2012.ResultsDocumentation of ACP in elderly major trauma patients following the implementation of this tool increased significantly from 16 to 35%. Additionally, secondary outcomes demonstrated that many more patients received goals of care documentation within 24 h of admission, and 93% of patients had goals of care documented prior to intensive care unit (ICU) admission. The number of trauma patients that were admitted to the ICU also decreased from 17 to 5%.ConclusionEarly advanced care planning is crucial for geriatric trauma patients to improve patient and family-centered care. Here, we have outlined our approach with modest improvements in goals of care documentation for our geriatric population at a level 1 trauma center. We also outline the benefits and drawbacks of this approach and identify the areas for improvement to support improved patient-centered care for the injured geriatric patient. Here, we have provided a framework for others to implement and further develop.

There’s Joy in the PA/LTC Journey, Says Outgoing Society President

GRAPEVINE, TEXAS — In her address at the Friday morning General Session at AMDA – the Society for Post-Acute and Long-Term Care Medicine’s Annual Conference, Society Immediate Past President Heidi White, MD, CMD, welcomed new members and stressed how the Society has responded to continuing changes in PA/LTC. “This has been a year of enrichment,” Dr. White said. “I’ve been enriched by all of you, visiting you at state and regional meetings, enriched by our board, they bring so much energy, and it’s been wonderful to work with them and advocate with them on Capitol Hill.” Part of the job as the public face of the Society is to meet with the leaders of other health care organizations, and Dr. White said she had enjoyed that part of her role. “It’s been wonderful to interact with other leaders; I kept crossing paths with Debra Saliba from the American Geriatrics Society, and Katherine Evans, the president of [Gerontological Advanced Practice Nurses Association]. A lot of what you get to do as president of this organization is to be a voice and collaborate with other like-minded organizations. And I’ve enjoyed working with Cari Levy; we’ve worked together for so many years.” Dr. White described a trip she made to the South Dakota regional chapter, where they gave her a book called Dakota: a Spiritual Geography. The book resonated with her and brought her full circle back to the Society’s efforts to navigate the changing PA/LTC landscape. “I really learned about the plains and the heartland, and the beauty of this environment, the beauty of these people and their culture, and I learned how they navigated change. Kathleen Norris explained that outsiders like me think [these] people live in the middle of nowhere, but they believe very deeply that they’re in the middle of the world,” she said. “This is like the Society. The medical community thinks they’re in the middle of nowhere, but we’re in the middle of the world. We get to take care of the people who really matter, who have a lot of complexity. We can work with the IDT team, professionals, the best residents and families … we’re not opening clogged arteries and transplanting organs, but we’re doing really important, fundamental work.” The Society has been making progress in enlightening the medical community and the public about its purpose. Dr. White acknowledged the Society’s efforts to tell its story with its We Are PA/LTC campaign. “We have been learning to tell our story this year, stories of NPs, CNAs, family, social workers. It’s really important that we tell our story well to the rest of the medical community,” she said. Dr. White offered a round-up of Society initiatives over the year, with an appreciative nod to the volunteers who work with the organization. “We have more products and resources, new pocket guides, an advance care planning discussion guide, new teaching slide decks, and a template for antibiotic stewardship policies,” she said. She pointed out the Innovations IPAC and the subsequent launch of the AMDA On-the-Go podcast, as well as the Shark Tank competition. Collaboration with other organizations has been important for the Society’s growth, Dr. White said. The spirit of collaboration has spread to the Society’s membership as well. Noting the decreasing physician membership, she welcomed nurse practitioners and physician assistants into the Society as full members, and lauded the addition of the Practice Group Network. “As a result of that, we’ve announced the Pioneer Practice Group network members from American Senior Communities, Genesis, Integrated Rehab Consultants, Midwest Geriatrics, Symbria, and TeamHealth,” she said. Finally, Dr. White spoke of an encouraging initiative with the National Academy of Medicine to help overburdened and time-strapped PA/LTC clinicians. “We decided we needed to work with the National Academy of Medicine on their action collaborative on clinician well-being and resilience,” Dr. White said. “We want to avoid burnout and stay healthy so we can do good work.” Carey Cowles is the managing editor of Caring for the Ages.

Advance Care Planning in Chinese Seniors: Cultural Perspectives.

In traditional Chinese culture, death was sensitive and mentioning it was sacrilegious and to be avoided. Many Chinese families object to telling the patient a "bad" diagnosis or prognosis, which may hinder the chance in advance care planning (ACP) discussion. While death remains an inevitable consequence of being born, as such, it is important that human beings recognize its inevitability and plan ahead of a good death. Advance care planning enables patients to assert their care preferences in the event that they are unable to make their own medical decisions. In China, a rapidly aging demographic presents additional challenges to quality end-of-life care. The adoption of palliative care in China has been slow, with a curative approach dominating health-care strategies. In this article, we would summarize China's current situation in population aging, palliative care development, and Chinese cultural values on death and dying and review the advance directive and end-of-life care preferences among Chinese elderly patients. Current literature recommended the use of indirect communication approaches to determine Chinese seniors' readiness. In individual practice, using depersonalized communication strategies to initiate the discussion was recommended to determine older Chinese seniors' readiness.

Are Older Adults a Burden?

Are Older Adults a Burden?

GPs' perceptions of advance care planning with frail and older people: a qualitative study.

BackgroundFrail and older people are estimated to account for 40% of deaths. Despite conversations about end-of-life care being an important component of the national End of Life Care Strategy, there is a marked disparity between the majority who would like to discuss advance care plans, and the minority who currently have this opportunity.AimTo investigate the attitudes of GPs to advance care planning (ACP) discussions with frail and older individuals.Design and settingFocus group study with GPs in Cambridgeshire between September 2015 and January 2016.MethodFive focus groups with 21 GPs were purposively sampled to maximise diversity. Framework analysis was used to analyse transcripts and develop themes.ResultsAlthough some GPs were concerned it might cause distress, the majority felt that raising ACP was important, especially as preparation for future emergencies. Knowing the individuals, introducing the idea as part of ongoing discussions, and public awareness campaigns were all facilitators identified. Several considered that service limitations made it difficult to fulfil patients’ wishes and risked raising unrealistic patient expectations. Other barriers identified included uncertainty over prognosis and difficulties ensuring that individuals’ wishes were respected.ConclusionMost GPs viewed ACP as important. However, their enthusiasm was tempered by experience. This study highlights the difficulties for GPs of encouraging dialogue and respecting individuals’ wishes within the constraints of the existing health and social care system. National publicity campaigns and encouraging patients to prioritise healthcare outcomes could help GPs raise care preferences without causing a detrimental impact on patients or raising unrealistic expectations. Once patients agree their care preferences, they need to be documented, accessible, and reviewed by all relevant health and social care providers to ensure that their wishes are respected, and plans amended as their circumstances change.

Stakeholder Perspectives on the Optimizing Patient Transfers, Impacting Medical Quality, and Improving Symptoms: Transforming Institutional Care (OPTIMISTIC) Project.

The need to reduce burdensome and costly hospitalizations of frail nursing home residents is well documented. The Optimizing Patient Transfers, Impacting Medical Quality, and Improving Symptoms: Transforming Institutional Care (OPTIMISTIC) project achieved this reduction through a multicomponent collaborative care model. We conducted an implementation-focused project evaluation to describe stakeholders' perspectives on (a) the most and least effective components of the intervention; (b) barriers to implementation; and (c) program features that promoted its adoption. Nineteen nursing homes participated in OPTIMISTIC. We conducted semistructured, qualitative interviews with 63 stakeholders: 23 nursing home staff and leaders, 4 primary care providers, 10 family members, and 26 OPTIMISTIC clinical staff. We used directed content analysis to analyze the data. We found universal endorsement of the value of in-depth advance care planning (ACP) discussions in reducing hospitalizations and improving care. Similarly, all stakeholder groups emphasized that nursing home access to specially trained, project registered nurses (RNs) and nurse practitioners (NPs) with time to focus on ACP, comprehensive resident assessment, and staff education was particularly valuable in identifying residents' goals for care. Challenges to implementation included inadequately trained facility staff and resistance to changing practice. In addition, the program sometimes failed to communicate its goals and activities clearly, leaving facilities uncertain about the OPTIMISTIC clinical staff's roles in the facilities. These findings are important for dissemination efforts related to the OPTIMISTIC care model and may be applicable to other innovations in nursing homes.

Discussing Advance Care Planning and Directives in the General Population.

The concept of end-of-life planning, along with medical and legal issues, has been discussed and has evolved over several years. The 1990 Patient Self-Determination Act and individual states' Department of Health Advance Directive forms helped overcome past problems. Patients with terminal and chronic illness are now able to have their wishes recognized for their future care. Any healthy individual's decision during an advance care planning (ACP) discussion can be adversely affected by various factors; however, multiple barriers-religion, culture, education, and family dynamics-can influence the process. Healthcare professionals' reluctance to initiate the conversation may result from limited training during medical school and residency programs. These limitations hinder both the initiation and productiveness of an ACP conversation. We explored ACP issues to provide guidance to healthcare professionals on how best to address this planning process with a healthy adult.

Advance Care Planning Discussions with Adolescent and Young Adult Cancer Patients Admitted to a Community Palliative Care Service: A Retrospective Case-Note Audit.

Adolescents and young adults (AYA) with cancer are a cohort requiring specialized healthcare models to address unique cognitive and physical challenges. Advance care planning (ACP) discussions likely warrant age-appropriate adaptation, yet, there is little Australian research data available to inform best practice for this group. The goal of this work is to inform future models of ACP discussions for AYA. Retrospective medical record audit of AYA patients and an adult comparison group, diagnosed with a malignancy and referred to a community hospice service, in Western Australia, in the period between January 1, 2012 and December 1, 2015. Information was collected regarding end-of-life care discussions, documentation of agreed plan of care, and care received. Twenty-seven AYA and 37 adult medical records were reviewed. Eighteen (66.7%) AYA patients died at home, compared with 19 (51.4%) adults (p = 0.028). Desire to pursue all available oncological therapies, including clinical trials, was documented for 14 (51.9%) AYA patients compared with 9 (24.3%) of the adult group (p = 0.02). Eleven AYA patients (40.7%) received chemotherapy during the last month of life compared with two (5.4%) adults (p = 0.001). The results indicate that end-of-life care preferences for this unique cohort may differ from those of the adult population and need to be captured and understood. An ACP document incorporating a discussion regarding goals of care, preferred location of care, preference for place of death, and consent to future intervention, including cardiopulmonary resuscitation and prompts for review, could assist in pursuing this objective.

Improving access to the KIS in secondary care

BackgroundEffective communication of anticipatory care planning (ACP) discussions between patients and general practitioners across different healthcare settings is vital. In Scotland, the Key Information Summary (KIS) is a new piece...