Background/Objectives Advance care planning (ACP) traditionally involves asking individuals about their treatment preferences during a brief period of incapacity near the end of life. Because dementia leads to prolonged incapacity, with many decisions arising before a terminal event, it has been suggested that dementia‐specific ACP is necessary. We sought to elicit the perspectives of older adults with early cognitive impairment and their caregivers on traditional and dementia‐specific ACP. Design Qualitative study with separate focus groups for patients and caregivers. Setting Memory disorder clinics. Participants Twenty eight persons aged 65+ with mild cognitive impairment or early dementia and 19 caregivers. Measurements Understanding of dementia trajectory and types of planning done; how medical decisions would be made in the future; thoughts about these decisions. Results No participants had engaged in any written form of dementia‐specific planning. Barriers to dementia‐specific ACP emerged, including lack of knowledge about the expected trajectory of dementia and potential medical decisions, the need to stay focused in the present because of fear of loss of self, disinterest in planning because the patient will not be aware of decisions, and the expectation that involved family members would take care of issues. Some patients had trouble engaging in the discussion. Patients had highly variable views on what the quality of their future life would be and on the leeway their surrogates should have in decision making. Conclusions Even among patients with early cognitive impairment seen in specialty clinics and their caregivers, most were unaware of the decisions they could face, and there were many barriers to planning for these decisions. These issues would likely be magnified in more representative populations, and highlight challenges to the use of dementia‐specific advance directive documents.

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Although patients with cystic fibrosis (CF) experience many symptoms and impaired quality of life, little is known about existential distress. This multivariable logistic regression evaluated the relationship between symptom burden and five existential needs representing existential distress in 164 adults with CF. Eleven percent of participants reported no symptom burden, 61% mild burden, and 28% moderate/severe burden. The most prevalent existential needs were fears about CF worsening (50%) and uncertainty about the future (39%). Participants with moderate/severe symptom burden were likelier to report needing support with all five needs than participants with no or mild burden. For each six-point increase in burden, there was an increased odds of reporting need for support with learning to feel in control, feelings about death and dying, fears about CF worsening, uncertainty about the future, and concerns about worries of others. CF-specific palliative care support based on these prevalent unmet existential needs should be developed and provided.

Background Hospice care was initially designed for seriously ill individuals with cancer. Thus, the model and clinicians were geared toward caring for this population. Despite the proportion of persons living with dementia (PLWD) receiving hospice care substantially increased over the past 10 years, and their longer lengths of stay, established hospice interventions for this population are scarce. No systematic review has previously evaluated those interventions that do exist. We synthesized hospice intervention studies for PLWD, their families, and hospice professionals by describing the types of interventions, participants, outcomes, and results; assessing study quality; and identifying promising intervention strategies. Methods A systematic review was conducted using a comprehensive search of five databases through March 2021 and follow‐up hand searches. Included studies were peer‐reviewed, available in English, and focused on hospice interventions for persons with dementia, and/or care partners, and clinicians. Using pre‐determined inclusion and exclusion criteria, data was extracted guided by the Cochrane Checklist, and quality was assessed using a 26‐item Consolidated Standards of Reporting Trials (CONSORT) Checklist. Results The search identified 3235 unique studies in total, of which 10 studies met inclusion criteria. The search revealed three types of interventions: clinical education and training, usual care plus care add‐on services, and “other” delivered to 707 participants (mostly clinicians). Five studies included underrepresented racial and ethnic groups. Outcomes measured knowledge and skills, psychosocial and health outcomes, feasibility, and acceptability, with significant improvements in six studies. Study quality was reflective of early‐stage research with clinical education and training strategies showing deliberate progression towards real‐world efficacy testing. Implications Hospice interventions for PLWD are sparse and in early‐phase research. More research is needed with rigorous designs, diverse samples, and outcomes considering the concordance of care.

by pediatric death is sparse. Existing literature raises concerns that certain services might be unavailable to some populations. More research is needed to understand why bereavement support services are not uniformly available and to develop programs for underserved populations.

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ContextPatients living with cystic fibrosis (CF) report impaired quality of life. Little is known about unmet supportive care needs among adults living with CF and how they are associated with demographic characteristics.ObjectivesThe primary objective of this study was to identify associations between demographic variables and unmet supportive care needs regarding anxiety, sadness, pain and uncertainty about the future of living with CF.MethodsWe recruited 165 adults with CF from a single academic medical centre to complete a brief demographic survey and the Supportive Care Needs Survey (SCNS-34), a validated self-reported needs assessment that measures the prevalence of and preferences for support for 34 needs that commonly occur in patients with serious illness.ResultsApproximately half of the participant sample was male, with a median age of 29 years, varying income levels and a range of lung disease severity. We found statistically significant associations between insufficient income and increased odds of reporting need for support regarding anxiety (OR: 6.48; 95% CI 2.08 to 20.2), sadness (OR: 6.15; 95% CI 2.04 to 18.5), pain (OR: 7.06; 95% CI 2.22 to 22.4) and worries surrounding uncertainty about the future (OR: 3.43; 95% CI 1.18 to 9.99).ConclusionAdults with CF report significant unmet needs for support in several physical and emotional domains. Many of these domains were associated with demographic characteristics, most notably, income. Our findings underscore the importance of developing treatment approaches that are sensitive to patient demographics when addressing unmet supportive care needs among adults with CF.

Background: More than 5 million people in the USA suffer from heart failure (HF). Palliative care (PC) is both a clinical subspecialty and overall approach to care that focuses on promoting seriously ill patients and their family’s quality of life. PC takes several forms, including consultation by a PC specialist, or attention to palliative domains by a non-PC specialist (aka “primary” PC). Despite guidelines calling for the integration of PC in HF, specialty PC remains underutilized. Patient preferences regarding primary vs specialty PC are unknown. Objective: To identify patient knowledge and perceptions regarding how primary and specialty PC could complement usual HF management, as well as barriers preventing PC utilization. Methods: We recruited individuals with NYHA class II-IV HF from general medicine wards and an outpatient advanced HF clinic, both at an academic quaternary care hospital. We conducted semi-structured interviews addressing: (1) patient-perceived physical, emotional, social, and decision-making needs; (2) perception, knowledge, and preferences regarding PC; (3) barriers and facilitators to PC. To understand patient preferences regarding primary vs specialty PC, in the interview guide, we conceptualized PC into 5 domains: physical, emotional, spiritual and social aspects of care, and advance care planning. For each domain, participants discussed unmet needs, and preferences about whether the needs would be best met by their existing cardiology team or a PC specialist. Two investigators independently analyzed data using template analysis, an inductive/deductive qualitative technique. Results: We interviewed 28 patients; 82% were white, 61% were >60 years, and 64% were male. 43% of participants had ejection fractions <30%, and 64% were of NYHA classes III or IV. Symptom burden was high and a source of dissatisfaction; yet, few believed that their disease management was suboptimal, often citing a sense of resignation that symptoms are inevitable in HF. We heard mixed and often incorrect understandings of PC (and its distinction from hospice). Once misperceptions of PC were corrected, respondents expressed variable preferences for specialty vs. primary PC. Proponents of primary PC cited trust and rapport in their existing clinicians, HF-specific expertise, convenience, and cost. Alternatively, participants preferring specialty PC involvement cited expertise in symptom management, addressing caregiver concerns, reduced time constraints, and a comprehensive non-HF-exclusive approach to care. Conclusion: We frequently identified limited and often incorrect understanding of PC. Though once corrected, patients articulated variable preferences for primary vs. specialty PC integration into their existing HF care. Research is needed to identify means of increasing primary and specialty PC delivery in HF in a manner that reflects patient preferences.