Advance directive (AD) completion can improve transitions between hospitals and skilled nursing facilities (SNF’s). One Centers for Medicare and Medicaid Services (CMS) Innovations Demonstration Project, The Missouri Quality Initiative (MOQI), focused on improving AD documentation and use in sixteen SNF’s. The intervention included education, training, consultation and improvements to discussion process, policy development, increased AD enactment, and increased community education and awareness activities. An analysis was conducted of data collected from annual chart inventories occurring over four years. Using a logistic mixed model, results indicated statistical significance (p < .001) for increased AD documentation. Greatest gains occurred at project mid-point. The relationship between having an AD and occurrence of transfer to a hospital was tested on a sample of 1,563 residents with length of stays more than 30 days. Residents who did not have an AD were 29% more likely to be transferred. A logistic regression was conducted, and the results were statistically significant (p < .02).
Objective: Assess correlates of advance care planning (ACP) among midlife and older adults in the United States, with attention to informal planning (e.g., conversations) and formal planning (e.g., legal documentation such as a living will).
Methods: Data were collected from a nationally-representative U.S. sample of adults ages 55-74.
Results: Informal ACP was positively associated with greater confidence, history of life-threatening illness, designation as health care decision maker for someone else, knowing at least one negative end-of-life (EOL) story in one’s personal network, a desire to ease surrogates’ decision making, and having a health care provider who had broached ACP. Formal ACP was positively associated with greater confidence, designation as a health care decision maker, having a provider who had broached ACP, and primarily receiving medical care from a doctor’s office, and negatively associated with health worry.
Conclusions: There are relevant correlates of advance care planning at the individual, interpersonal, and health care levels, with implications for increasing uptake of ACP
Practice implications: A desire to mitigate proxies’ decision-making burden was a significant motivator for ACP conversations. Awareness of negative EOL experiences may also motivate these conversations. Health care providers have a powerful role in formal and informal ACP uptake.
BACKGROUND: The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified eleven potential "next step" actions, and subsequently a national survey-based poll of members of the PPC community was conducted to prioritize these potential actions in terms of their "actionable importance."
METHODS: Invitations to the survey were distributed in October 2019 to interdisciplinary PPC health care professionals via email to two major listservs, one hosted by the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics, the other by the Center to Advance Palliative Care. Respondents rated the "actionable importance" of items relative to each other via a discrete choice experiment. Median importance scores are reported for each item.
RESULTS: 177 individuals responded to the survey. The majority (62.2%) were physicians, with nurses (16.4%), advanced practice nurses (7.9%), and social workers (7.3%) being the other most common responders. The top 5 potential actions, in descending rank order, were: Determine what parents value regarding PPC (median score of 17.8, out of a total score of all items of 100); Define and disseminate core primary PPC curriculum (median, 15.3); Develop PPC national representation strategy and tactics (median, 12.3); Create PPC-specific program development toolkit (median, 10.9); and, Analyze payment and financing ratios (median, 9.6).
CONCLUSIONS: Those seeking to advance the field of PPC should take into account the findings from this study, which suggest that certain actions are more likely to have a beneficial impact on moving the field forward.
OBJECTIVES: Most previous studies considered advance directives (AD) as one outcome, which conceals possible variations of individuals' decisions on two AD documents-living will (LW) and durable power of attorney for health care (PA). To address this issue, this study examined how completions of PA and LW are associated with race, and whether SES and health can partially explain the racial disparities of AD possession.
METHODS: The sample included 9,902 older adults from the 2016 wave of the Health and Retirement Study. AD completion was coded as a four-category variable, including no PA or LW, no PA, no LW, and both PA and LW. Race was categorized as non-Hispanic White, non-Hispanic Black, Hispanic, and Asian or Native American. Socioeconomic status (SES) was measured by education and household wealth. Health was indicated by chronic conditions and functional limitations. Multinomial logistic regression models were used to examine the racial effects of AD possession and the effects of SES and health conditions.
RESULTS: Older adults who only have PA or only have LW significantly differed in racial identity, SES and Health. The regression results show that being a racial minority was associated with a lower likelihood to have both ADs and only PA. SES partially buffered racial disparities in AD possession, while the moderation of health was not consistently significant.
DISCUSSION: The findings highlight the importance of examining the completions of two AD documents and indicate the necessity of developing distinct and concrete strategies to promote the completion of PA and LW.
Older African Americans (AAs) with serious illness experience disparities in advance care planning, access to palliative care and hospice, and decision-making at end of life. While culturally specific drivers of care outcomes have been identified, little has been done to standardize integration and application of targeted elements of end-of-life (EOL) interventions for AA populations. A scoping review was conducted to describe and evaluate the benefit of culturally targeted EOL interventions for AAs. A computerized search of empirical and gray literature was completed. Twelve full-text articles, 1 brief report, and 1 abstract describing a total of 14 EOL interventions for AAs with a range of serious illness were reviewed. Interventions were described relative to culturally targeted adaptations and resulting cognitive, emotional, and behavioral outcomes. Most interventions were theory-based and used psychoeducational approaches and interactive discussion and interviews. Significant improvements in psychological and behavioral outcomes were reported including knowledge and self-efficacy (n = 8); self-reported anxiety, depression, and/or well-being (n = 5); and advance care plan completion (n = 3). Few culturally tailored randomized controlled trials (n = 9) have been conducted. Preliminary results show promise for interventions using cultural adaptations. Culturally targeted intervention approaches are feasible to address EOL outcomes for AA patients and families experiencing serious illness.
The Boston Children’s Hospital Hematology/Oncology Bereavement Program has supported bereaved parents for three decades following the death of their child from cancer or blood disorder. An analysis of the current bereavement program as well as a review of up-to-date literature is crucial to maintaining and continuously improving the program. To evaluate the current practice, a 22-item Likert-type survey was mailed to 216 bereaved parents who utilized the bereavement program during a four-year period. Results from the program evaluation, particularly the qualitative remarks from bereaved parents, along with analysis of current literature underscore the value bereaved families find having at least one meaningful contact with their child’s healthcare team following the death.
BACKGROUND/OBJECTIVES: There is increasing recognition that place of death is an important component of quality of end-of-life care (EOLC) and quality of death. This study examined where older persons with and without cognitive impairment die in the United States, what factors contribute to place of death, and whether place of death influences satisfaction with EOLC.
DESIGN: Cross-sectional secondary data analysis.
SETTING: In-person interviews with community-dwelling proxy respondents.
PARTICIPANTS: Data were collected from 1,500 proxies for deceased participants in the National Health and Aging Trends Study (NHATS), a nationally-representative sample of community-dwelling Medicare beneficiaries aged 65 and older.
MEASUREMENTS: Study variables were obtained from the NHATS "last month of life" interview data. Survey weights were applied to all analyses.
RESULTS: Persons with cognitive impairment (CI) most often died at home, while cognitively healthy persons (CHP) were equally likely to die at home or in a hospital. Persons with CI who utilized the Medicare Hospice Benefit were 14.5 times more likely to die at home than in a hospital, and 3.4 times more likely to die at home than a nursing home. CHP who use this benefit were over six times more likely to die at home than in a hospital, and more than twice as likely to die at home than a nursing home. Place of death for CHP was also associated with age and race. Proxies of persons with CI who died at home rated EOLC as more favorable, while proxies of CHP rated in-home and hospital care equally.
CONCLUSION: Findings add to the scant literature identifying factors associated with place of death for older adults with and without CI and results suggest that place of death is a quality of care indicator for these populations. These findings may inform EOLC planning and policy-making and facilitate greater well-being at end-of-life.
BACKGROUND: Despite well-documented disparities in end-of-life (EOL) care, little is known about whether patients with low health literacy (LHL) received aggressive EOL care.
OBJECTIVE: This study examined the association between health literacy (HL) and EOL care intensity among Medicare beneficiaries.
METHOD: We conducted a retrospective analysis of Medicare fee-for-service decedents who died in July-December, 2011. ZIP-code-level HL scores were estimated from the 2010-2011 Health Literacy Data Map, where a score of 225 or lower was defined as LHL. Aggressive EOL care measures included repeated hospitalizations within the last 30 days of life, no hospice enrollment within the last 6 months of life, in-hospital death, and any of above. Using hierarchical generalized linear models, we examined the association between HL and aggressive EOL care.
RESULTS: Of 649,556 decedents, the proportion of decedents who received any aggressive EOL care among those in LHL areas was 82.7%, compared to 72.7% in HHL areas. In multivariable analyses, decedents residing in LHL areas, compared to those in HHL areas, had 31% higher odds of aggressive EOL care (adjusted odds ratio [AOR] 1.31; 95% confidence interval [CI]:1.21-1.42), including higher odds of no hospice use (AOR 1.35; 95% CI: 1.27-1.44), repeated hospitalization (AOR 1.07; 95% CI: 1.01-1.14) and in-hospital death (AOR 1.21; 95% CI: 1.13-1.29).
CONCLUSION: Medicare beneficiaries who resided in LHL areas were likely to receive aggressive EOL care. Tailored efforts to improve HL and facilitate patient-provider communications in LHL areas could reduce EOL care intensity.
Background: Patients receiving dialysis have unmet palliative care needs. Limited access to palliative care is a key barrier to its integration into routine dialysis care.
Objective: To determine the feasibility and acceptability of telepalliative care in rural dialysis units.
Methods: This was a single-arm pilot clinical trial. The target population was patients with kidney failure receiving outpatient dialysis in a rural U.S. state. Feasibility was measured by one-month completion rate. Acceptability was measured using an adapted telemedicine questionnaire.
Results: We recruited 39 patients with mean age 71.2 years to undergo a telepalliative care consultation while receiving dialysis. Four specialty palliative care clinicians (three physicians and one nurse practitioner) conducted the visits. The recruitment rate was 40% (39/96), scheduling rate was 100% (39/39), and one-month completion rate was 77% (30/39). Thirty-six patient participants (14 women and 22 men) completed the baseline survey. Audiovisual aspects of the visit were rated highly. More than 80% reported the visit being at least as good as an in-person visit and 41% felt the teleconsult was better. Eighty-one percent of patients felt the appointment was relevant to them, 58% felt they learned new things about their condition, and 27% reported the appointment changed the way they think about dialysis.
Discussion: Telepalliative care is acceptable to patients receiving dialysis and is a feasible approach to integrating palliative care in rural dialysis units. The study was registered with Clinicaltrials.gov (NCT03744117).
CONTEXT: People bereaved from COVID-19 report higher levels of grief than people bereaved from natural causes. The full impact of this onslaught of grief will not be known for some time. Ensuring high quality bereavement care in the context of COVID-19 presents unprecedented challenges to end-of-life care.
OBJECTIVES: We aimed to determine how psychological symptoms explain functional impairment.
METHODS: A sample of people bereaved through COVID-19 (N = 307) in the United States completed demographic questions and self-report measures of neuroticism; symptoms of depression, generalized anxiety, posttraumatic stress, separation distress, and dysfunctional grief; and functional impairment due to a COVID-19 loss.
RESULTS: Most participants' scores were in the clinical ranges for generalized anxiety, depression, dysfunctional grief, and functional impairment. Functional impairment scores were not associated with age, gender, and time since loss but were associated with being diagnosed with COVID-19, having received professional help with the loss, and a close relationship to the deceased. A logistic regression model showed that, after controlling for covariates, the odds of functional impairment significantly increased by 27% for higher scores in separation distress, 25% for higher scores in dysfunctional grief, and 13% for higher scores in posttraumatic stress.
CONCLUSION: People bereaved due to COVID-19 are at risk of functional impairment, especially if they have symptoms of separation distress, dysfunctional grief, and/or posttraumatic stress. Attention to identifying and treating functional impairment may be important in facilitating grieving persons' full participation in social and economic life during and after the pandemic.
PURPOSE: African American patients with cancer underutilize advance care planning (ACP) and palliative care (PC). This feasibility study investigated whether community health workers (CHWs) could improve ACP and PC utilization for African American patients with advanced cancer.
METHODS: African American patients diagnosed with an advanced solid organ cancer (stage IV or stage III disease with a palliative performance score < 60%) were enrolled. Patients completed baseline surveys that assessed symptom burden and distress at baseline and 3 months post-CHW intervention. The CHW intervention consisted of a comprehensive assessment of multiple PC domains and social determinants of health. CHWs provided tailored support and education on the basis of iterative assessment of patient needs. Intervention feasibility was determined by patient and caregiver retention rate above 50% at 3 months.
RESULTS: Over a 12-month period, 24 patients were screened, of which 21 were deemed eligible. Twelve patients participated in the study. Patient retention was high at 3 months (75%) and 6 months (66%). Following the CHW intervention, symptom assessment as measured by Edmonton Symptom Assessment System improved from 33.8 at baseline to 18.8 (P = .03). Psychological distress improved from 5.5 to 4.7 (P = .36), and depressive symptoms from 42.2 to 33.6 (P = .09), although this was not significant. ACP documentation improved from 25% at baseline to 75% at study completion. Sixty-seven percentage of patients were referred to PC, with 100% of three decedents using hospice.
CONCLUSION: Utilization of CHWs to address PC domains and social determinants of health is feasible. Although study enrollment was identified as a potential barrier, most recruited patients were retained on study.
BACKGROUND: Seriously ill patients admitted to the Intensive Care Unit (ICU) experience severe spiritual and existential distress. Patients' surrogate decision makers face the burden of making complex decisions about their loved ones' care. Experienced chaplains may play a role in assisting with decision-making, possibly by aligning patients' values and wishes with treatment plans and avoiding non-beneficial aggressive measures.
OBJECTIVES: To identify associations between chaplaincy care and length of stay (LOS) in the medical ICU (MICU).
METHODS: This was a retrospective observational study of usual spiritual care in the adult MICUs of 4 medical centers in the United States over a 3-month period. Inclusion criteria were death in the MICU or discharge to palliative care or hospice. Measures included medical, treatment, and spiritual care information. Through bivariate and multivariable analyses associations between spiritual care and LOS were examined.
RESULTS: In multivariable analysis of the 254 patients, receiving spiritual care was associated with an increased likelihood of being in a higher LOS tertile (adjusted odds ratio = 2.94, p < .001). In post hoc bivariate analysis, cases receiving spiritual care within the first 48 hours of MICU admission revealed a trend toward lower LOS (p = .181).
CONCLUSION: Spiritual care in the MICU was associated with longer LOS. Early intervention by chaplains who are well-integrated in the ICU may assist patients and their loved ones in coming to terms with grave illness and making difficult treatment decisions. Further well-designed studies of spiritual care interventions that may affect outcomes are needed.
BACKGROUND: Dementia is a leading cause of death among US older adults. Little is known about end-of-life care intensity and do-not-resuscitate orders (DNRs) among patients with dementia who die in hospital.
AIM: Examine the relationship between dementia, DNR timing, and end-of-life care intensity.
DESIGN: Observational cohort study.
SETTING/PARTICIPANTS: Inpatient electronic health record extraction for 2,566 persons age 65 and older who died in 2 New York City hospitals in the United States from 2015 to 2017.
RESULTS: Multivariable logistic regression analyses modeled associations between dementia diagnosis, DNR timing, and 6 end-of-life care outcomes. 31% of subjects had a dementia diagnosis; 23% had a DNR on day of hospital admission. Patients with dementia were 18%-40% less likely to have received 4 of 6 types of intensive care (mechanical ventilation AOR: 0.82, 95%CI: 0.67 -1.00; intensive care unit admission AOR: 0.60, 95%CI: 0.49-0.83). Having a DNR on file was inversely associated with staying in the intensive care unit (AOR: 0.57, 95%CI: 0.47-0.70) and avoiding other intensive care measures. DNR placement later during the hospitalization and not having a DNR were associated with more intensive care compared to having a DNR upon admission.
CONCLUSIONS: Having dementia and a do-not resuscitate order upon hospital admission are associated with less intensive end-of-life care. Additional research is needed to understand why persons with dementia receive less intensive care. In clinical practice, encouraging advance care planning prior to and at hospital admission may be particularly important for patients wishing to avoid intensive end-of-life care, including patients with dementia.
OBJECTIVE: We examined factors influencing end-of-life care preferences among persons living with HIV (PLWH).
METHODS: 223 PLWH were enrolled from 5 hospital-based clinics in Washington, DC. They completed an end-of-life care survey at baseline of the FACE™-HIV Advance Care Planning clinical trial.
FINDINGS: The average age of patients was 51 years. 56% were male, 66% heterosexual, and 86% African American. Two distinct groups of patients were identified with respect to end-of-life care preferences: (1) a Relational class (75%) who prioritized family and friends, comfort from church services, and comfort from persons at the end-of-life; and (2) a Transactional/Self-Determination class (25%) who prioritized honest answers from their doctors, and advance care plans over relationships. African Americans had 3x the odds of being in the Relational class versus the Transactional/Self-determination class, Odds ratio = 3.30 (95% CI, 1.09, 10.03), p = 0.035. Males were significantly less likely to be in the relational latent class, Odds ratio = 0.38 (CI, 0.15, 0.98), p = 0.045. Compared to non-African-Americans, African-American PLWH rated the following as important: only taking pain medicines when pain is severe, p = 0.0113; saving larger doses for worse pain, p = 0.0067; and dying in the hospital, p = 0.0285. PLWH who were sexual minorities were more afraid of dying alone, p = 0.0397, and less likely to only take pain medicines when pain is severe, p = 0.0091.
CONCLUSION: Integrating culturally-sensitive palliative care services as a component of the HIV care continuum may improve health equity and person-centered care.
BACKGROUND: Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether PPHC@Home provided in the U.S. meets the needs and priorities of children and their families.
METHODS: We developed and conducted a preliminary evaluation of a family-reported measure of PPHC@Home experiences using a multi-method, multi-stakeholder approach. Our instrument development process consisted of four phases. Item identification and development (Phase 1) involved a comprehensive literature search of existing instruments, guidelines, standards of practice, and PPHC@Home outcome studies, as well as guidance from a PPHC stakeholder panel. Phase 2 involved the initial item prioiritization and reduction using a discrete choice experiment (DCE) with PPHC professionals and parent advocates. Phase 3 involved a second DCE with bereaved parents and parents currently receiving care for their child to further prioritize and winnow the items to a set of the most highly-valued items. Finally, we conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4).
RESULTS: Items were compiled predominantly from three existing instruments. Phase 2 participants included 34 PPHC providers, researchers, and parent advocates; Phase 3 participants included 47 parents; and Phase 4 participants included 11 parents. At the completion of Phase 4, the Experiences of Palliative and Hospice Care for Children and Caregivers at Home (EXPERIENCE@Home) Measure contains 22 of the most highly-valued items for evaluating PPHC@Home. These items include "The care team treats my child's physical symptoms so that my child has as good a quality of life as possible", "I have regular access to on-call services from our care team", and "The nurses have the knowledge, skills, and experience to support my child's palliative or hospice care at home."
CONCLUSIONS: The EXPERIENCE@Home Measure is the first known to specifically measure family-reported experiences with PPHC@Home in the U.S. Future work will include formal psychometric evaluation with a larger sample of parents, as well as evaluation of the clinical utility of the instrument with PPHC@Home teams.
OBJECTIVES: The ideal clinical model to deliver palliative care to patients with advanced kidney disease is currently unknown. Internationally, ambulatory kidney palliative care clinics have emerged with positive outcomes, yet there is limited data from the United States (US). In this exploratory study we report perceptions of a US-based ambulatory kidney palliative care clinic from the perspective of patient and caregiver attendees. The objective of this study was to inform further improvement of our clinical program.
METHODS: Semi-structured interviews were conducted to elicit the patient and caregiver experience. Eleven interviews (8 patients with chronic kidney disease stage IV or V and 3 caregivers) were analyzed using qualitative description design.
RESULTS: We identified 2 themes: "Communication addressing the emotional and physical aspects of disease" and "Filling gaps in care"; Subthemes include perceived value in symptom management, assistance with coping with disease, engagement in advance care planning, program satisfaction and patient activation.
SIGNIFICANCE OF RESULTS: Qualitative analysis showed that attendees of an ambulatory kidney palliative care clinic found the clinic enhanced the management of their kidney disease and provided services that filled current gaps in their care. Shared experiences highlight the significant challenges of life with kidney disease and the possible benefits of palliative care for this population. Further study to determine the optimal model of care for kidney palliative care is needed. Inclusion of the patient and caregiver perspective will be essential in this development.
Since it was proposed in 1980, the Uniform Determination of Death Act has provided the legal basis for determination of death by neurological criteria. The act contains language that allows for acceptable medical standards to be used to determine death. Since 1995, the American Academy of Neurology has provided guidelines for brain death determination (revised in 2010), but nationwide adherence to these guidelines has been incomplete. This variability could lead to misdiagnosis and erosion of public trust in this important medical practice. Physicians must work together as a profession to push for uniformity and accuracy in death diagnosis.
Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support.
Objectives: To learn from bereaved parent participants' experiences with an online support group to include perceptions of technology acceptance and group communication dynamics.
Design: Descriptive study reporting on an eight-week online bereavement support group offered during summer 2020.
Subjects and Setting: Inclusive of six bereaved parent participants in the Midwestern United States.
Measurements: Post-intervention survey consisting of 49-items with the Technology Acceptance Model and Other Communicated Perspective-Taking Ability instruments embedded.
Results: five bereaved mothers and one father (mean age 32 years) residing an average 126 miles from hospital participated in an online support group in a timeframe seven months to one year from the death of their child. Intensity of grief emotion (5/6 parents) and physical distance (4/6 parents) were notable barriers to in-person visits to the hospital, where bereavement support was to be offered. Parents uniformly reported feeling benefit from the program and satisfaction with the program. Respondents self-reported gaining improved communication (4/6 parents), coping (3/6 parents), peer support (3/6 parents), education (3/6 parents), and emotional expression (3/6 parents). Mean scores on the technology acceptance and communication experiences scales were 4.7/5. The virtual format was an acceptable modality with perceived supportive interpersonal communication dynamics.
Conclusion: Pediatric palliative care teams may consider the offering of online bereavement support groups. Further research is warranted on the impact and outcomes of online bereavement support groups for bereaved parents.
Background: Palliative care (PC) education for fellows in hematology/oncology (H/O) training programs is widely accepted, but no studies to date have assessed PC education practices and values among program leadership.
Methods: Program Directors and Associate Program Directors of active H/O fellowship programs in the U.S.A. were surveyed.
Results: Of 149 programs contacted, 84 completed the survey (56% response rate), of which 100% offered some form of PC education. The most frequently utilized methods of PC education were didactic lectures/conferences (93%), required PC rotations (68%), and simulation/role-playing (42%). Required PC rotations were ranked highest, and formal didactic seminars/conferences were ranked fifth in terms of perceived effectiveness. The majority felt either somewhat (60%) or extremely satisfied (30%) with the PC education at their program. Among specific PC domains, communication ranked highest, addressing spiritual distress ranked lowest, and care for the imminently dying ranked second lowest in importance and competency. Solid tumor oncologists reported more personal comfort with pain management (p = 0.042), non-pain symptom management (p = 0.014), ethical/legal issues (p = 0.029), reported their fellows were less competent in pain assessment/management (p = 0.006), and communication (p = 0.011), and were more satisfied with their program’s PC education (p = 0.035) as compared with hematologists.
Conclusions: Significant disparities exist between those modalities rated most effective for PC education and those currently in use. Clinical orientation of program leadership can affect both personal comfort with PC skills and estimations of PC curriculum effectiveness and fellows’ competency. H/O fellowship programs would benefit from greater standardization and prioritization of active PC education modalities and content.
The American hospice movement arose in the 1970s as an alternative to standard hospital care for terminally ill patients, emphasizing symptom management and psychological and spiritual care. St. Luke's Hospice of New York City was an outlier in this movement. While other hospices sought to distance themselves from the preexisting healthcare system for fear of its corrupting influence, St. Luke's sought to transform the system from within. While other hospices ultimately accommodated state and federal regulations for terminal care, St. Luke's tried to survive outside of this newly regulated space. This examination of St. Luke's Hospice complicates the preexisting narrative of the hospice movement as a countercultural movement that was subsequently corrupted by integration into mainstream healthcare. It also demonstrates opportunities and challenges in trying to change the structure and culture of the acute care hospital.