Objective: Characterize hospice staff practices and perspectives on discussing end-of-life care preferences with patients/families, including those desiring intensive treatment and/or full code.
Background: Patients in the United States can elect hospice while remaining full code or seeking intensive interventions, for example, blood transfusions, or chemotherapy. These preferences conflict with professional norms, hospice philosophy, and Medicare hospice payment policies. Little is known about how hospice staff manage patient/family preferences for full-code status and intensive treatments.
Methods: We recruited employees of four nonprofit US hospices with varying clinical and hospice experience for semi-structured, in-depth interviews. Open-ended questions explored participants' practices and perceptions of discussing end-of-life care preferences in hospice, with specific probes about intensive treatment or remaining full code. Interdisciplinary researchers coded and analyzed data using the constant comparative method.
Results: Participants included 25% executive leaders, 14% quality improvement administrative staff, 61% clinicians (23 nurses, 21 social workers, 7 physicians, and 2 chaplains). Participants reported challenges in engaging patients/families about end-of-life care preferences. Preferences for intensive treatment or full-code status presented an ethical dilemma for some participants. Participants described strategies to navigate such preferences, including educating about treatment options, and expressed diverse reactions, including accepting or attempting to shift enrollee preferences.
Discussion: This study illuminates a rarely studied aspect of hospice care: how hospice staff engage with enrollees choosing full code and/or intensive treatments. Such patient preferences can produce ethical dilemmas for hospice staff. Enhanced communication training and guidelines, updated organizational and federal policies, and ethics consult services may mitigate these dilemmas.
Objective: Lack of palliative care knowledge among caregivers may pose an access barrier for cognitively impaired older adults, who may benefit from the specialized care. Therefore, this study aims to examine the effectiveness of an educational intervention in improving palliative care knowledge among informal caregivers of cognitively impaired older adults.
Method: Using a one-group, pre- and post-test intervention design, this study implemented an individual, face-to-face educational intervention with an informational brochure for 43 informal caregivers of chronically or seriously ill older adults (50+) with cognitive impairment, recruited from communities in West Alabama. Their level of knowledge about palliative care was assessed by the Palliative Care Knowledge Scale (PaCKS). The pre- and post-test scores were compared by the Wilcoxon signed-ranks test, and the racial subgroup (Whites vs. Blacks) comparison was made by the Mann–Whitney U test.
Results: There was a statistically significant difference between the pre- and post-test scores (z = 5.38, p < 0.001), indicating a statistically significant effect of the educational intervention in improving palliative care knowledge among participants. There was a significant difference (U = 143, p < 0.05) between Whites and Blacks in the pre-test, which, however, disappeared in the post-test (U = 173.50, p > 0.05), suggesting that the amount of increased PaCKS scores were significantly greater for Blacks (Mdn = 9.50) than for Whites (Mdn = 4.00, U = 130.50, p < 0.05).
Significance of results: This study demonstrated that a one-time educational intervention can improve the level of palliative care knowledge among informal caregivers of chronically or seriously ill older adults with cognitive impairment, particularly among Black caregivers. Therefore, further educational efforts can be made to promote palliative care knowledge and reduce racial disparities in palliative care knowledge and its use.
Objective: The purpose of this study was to explore healthcare provider-perceived challenges to HBPC patient referral and elicited providers’ feedback for overcoming these challenges.
Methods: We conducted a qualitative study using semi-structured interviews with 25 Medicaid managed care providers (primary care physicians, nurse practitioners, and care managers) working in the greater Los Angeles area. Our interview protocol elicited providers’ knowledge and awareness of palliative care; perceived barriers to HBPC referral; and suggestions for overcoming these barriers. We analyzed verbatim transcripts using a grounded theory approach.
Results: Themes related to referral barriers included providers’ lack of palliative care knowledge and clarity regarding referral processes, provider reluctance to refer to HBPC, and provider culture. Providers also identified patient-level barriers, including financial barriers, reluctance to have home visits, health literacy, cultural barriers, and challenges related to living situations. Themes related to methods for overcoming challenges included increased HBPC education and outreach to providers, specifically by HBPC agency staff.
Conclusions: Findings from this study underscore the need for additional palliative care education for Medicaid healthcare providers. They point to the need for novel strategies and approaches to address the myriad barriers to patient identification and referral to HBPC.
The COVID-19 pandemic presented unique health and social challenges for hospice patients, their families, and care providers. This qualitative study explored the impact of the pandemic on this population through the experiences and perceptions of social workers in hospice care. A survey was distributed through national and local listservs to social work practitioners throughout the United States between May 15 and June 15, 2020. The study was designed to learn the following: (1) Concerns patients experienced as a result of the pandemic, (2) strengths/resilience factors for patients during the COVID-19 pandemic, and (3) the personal and professional impact of the pandemic on social workers. Themes uncovered in hospice care included isolation, barriers to communication, disruption of systems, issues related to grieving, family and community support, adaptation, and perspective. The authors provide recommendations for social work practice related to virtual communication, emergency planning, and evidence-based intervention for Persistent Complex Bereavement Disorder. Recommendations for policy include uniform essential worker status for social workers, telehealth reimbursement and expanded caregiver respite benefits.
Background: Emergency Medical Services (EMS) are often involved in end-of-life circumstances, yet little is known about how EMS interfaces with advance directives to forego unwanted resuscitation (Do Not Attempt Resuscitation (DNAR)). We evaluated the frequency of these directives involved in out-of-hospital cardiac arrest (OHCA) and how they impact care.
Methods: We conducted a cohort investigation of adult, EMS-attended OHCA from January 1 to December 31, 2018 in King County, WA. DNAR status was ascertained from dispatch, EMS, and hospital records. Resuscitation was classified according to DNAR status: not initiated, initiated but ceased due to the DNAR, or full efforts.
Results: Of 3152 EMS-attended OHCA, 314 (9.9%) had a DNAR directive. DNAR was present more often among those for whom EMS did not attempt resuscitation compared to when EMS provided some resuscitation (13.2% [212/1611] vs 6.6% [101/1541], (p < 0.05).
Of those receiving resuscitation with a DNAR directive (n = 101), the DNAR was presented on average 6 min following EMS arrival. A total of 82% (n = 83) had EMS efforts ceased as a consequence of the DNAR while 18% (n = 18) received full efforts. Full-efforts compared to ceased-efforts were more likely to have a witnessed arrest (67% vs 36%), present with shockable rhythm (22% vs 6%), achieve spontaneous circulation by time of DNAR presentation (50% vs 4%), and have family contradict the DNAR (33% vs 0%) (p < 0.05 for each comparison).
Conclusions: Approximately 10% of EMS-attended OHCA involved DNAR. EMS typically fulfilled this end-of-life preference, though wishes were challenged by delayed directive presentation or contradictory family wishes.
Context: Guardians are surrogate decision makers appointed by a court when other health care decision-makers are unable, unwilling, or unavailable to make decisions. Prior studies suggest that persons under guardianship may experience delays in transitions of care.
Objectives: To compare quality of end-of-life care for persons under guardianship to a matched group on objective indicators and to identify narrative themes characterizing potential obstacles to quality end-of-life care.
Methods: One hundred sixty-seven persons under guardianship who died between 2003 and 2019 within the Veterans Healthcare Administration in Massachusetts and Connecticut matched on a 1:1 basis to persons without guardians. The groups were compared on treatment specialty at death, days of hospice and intensive care unit care, and receipt of palliative care consultation. Additionally, patient narratives for those under guardianship with extended lengths in intensive care unit were subjected to qualitative analysis.
Results: Overall, <1% were under guardianship. Within this sample of persons who died within the Veterans Health Administration, persons under guardianship were as likely as patients in the comparison group to receive palliative care consultation (odds ratio [CI] = 0.93 [.590-1.46], P = .359), but were more likely to have ethics consultation (odds ratio [CI] = 0.25 [0.66–0.92], P = .036) and have longer lengths of ICU admission (ß = -.34, t = -2.70, P = .009). Qualitative findings suggest that issues related to family conflict, fluctuating medical course, and limitations in guardian authority may underlie extended lengths of stay.
Conclusion: Guardianship appears to be rare, and as a rule, those under guardianship have equal access to hospice and palliative care within Veterans Health Administration. Guardianship may be associated with health-care challenges in a small number of cases, and this may drive perceptions of adverse outcomes.
INTRODUCTION: Little is known about the effects of HIV reservoir research at the end of life on staff members involved. Staff members' perceptions and experiences were assessed related to their involvement in the Last Gift, a rapid autopsy study at the University of California San Diego enrolling people living with HIV who are terminally ill and have a desire to contribute to HIV cure-related research.
METHODS: Two focus group discussions consisting of clinical (n = 7) and rapid research autopsy (n = 8) staff members were conducted to understand the perspectives of staff members and the impact the Last Gift rapid autopsy study had on them. The total sample consisted of 66.7% females and 33.3% males and was ethnically diverse (66.7% Caucasian, 6.7% African American, 20.0% Asian descent, 6.7% Hispanic descent and American Indian) with a range of experience in the HIV field from 1 year to 30 years.
RESULTS: Qualitative focus group data revealed five major themes underlying study staff members' multilayered mental and practical involvement: 1) positive perceptions of the Last Gift study, with sub-themes including Last Gift study participants' altruism, fulfillment, and control at the end of life, 2) perceptions of staff members' close involvement in the Last Gift study, with sub-themes related to staff members' cognitive processing, self-actualization and fulfillment, stress management and resilience, coping mechanisms, and gratitude toward Last Gift participants and toward the study itself, 3) considerations for successful and sustainable study implementation, such as ethical awareness and sustained community and patient engagement, 4) collaborative learning and organizational processes and the value of interdependence between staff members, and 5) considerations for potential study scale-up at other clinical research sites.
DISCUSSION: Understanding staff members' nuanced emotional and procedural experiences is crucial to the Last Gift study's sustainability and will inform similar cure research studies conducted with people living with HIV at the end of life. The study's potential reproducibility depends on a robust research infrastructure with established, interdependent clinical and rapid autopsy teams, continuous community engagement, and an ethical and well-informed engagement process with people living with HIV.
Despite improvement in the care of patients with end-stage liver disease (ESLD), mortality is rising. In the United States, patients are increasingly choosing to die at hospice and home, but data in patients with ESLD are lacking. Therefore, this study aimed to describe trends in location of death in patients with ESLD. We conducted a retrospective cross-sectional analysis using the Centers for Disease Control and Prevention Wide-ranging OnLine Data for Epidemiologic Research from 2003-2018. Death location was categorized as hospice, home, inpatient, nursing home, or other. Comparisons were made between gender, age, ethnicity, race, region, and with other causes of death. Comparisons were also made between rates of change (calculated as annual percent change), proportion of deaths in 2018, and with multivariable logistic regression. 535,261 deaths were attributed to ESLD - most were male, non-Hispanic, and White. The proportion of deaths at hospice and home increased over the study period from 0.2% to 10.6% and 20.3% to 25.7%, respectively. Whites had the highest proportion of deaths in hospice and home. In multivariable analysis, elderly patients were more likely to die in hospice or home (OR 1.20 CI 1.07-1.35), while black patients were less likely (OR 0.58 CI 0.46-0.73). Compared to other causes of death, ESLD had the second highest proportion of deaths in hospice but lagged behind non-hepatocellular carcinoma malignancy.
CONCLUSION: Deaths in patients with ESLD are increasingly common at hospice and home overall, and while the rates have been increasing among black patients, they are still less likely to die at hospice or home. Efforts to improve this disparity, promote end-of-life care planning, and enhance access to death at hospice and home are needed.
BACKGROUND AND OBJECTIVES: Nursing homes (NHs) care for 70% of Americans dying with dementia. Many consider deaths in NHs rather than hospitals as preferable for most of these residents. NH characteristics such as staff teamwork, communication, and other components of patient safety culture (PSC), together with state minimum NH nurse staffing requirements, may influence location of death. We examined associations between these variables and place of death (NH/hospital) among residents with dementia.
RESEARCH DESIGN AND METHODS: Cross-sectional study of 11,957 long-stay NH residents with dementia, age 65+, who died in NHs or hospitals shortly following discharge from one of 800 US NHs in 2017. Multivariable logistic regression systematically estimated effects of PSC on odds of in-hospital death among residents with dementia, controlling for resident, NH, county, and state characteristics. Logistic regressions also determined moderating effects of state minimum NH nurse staffing requirements on relationships between key PSC domains and location of death.
RESULTS: Residents with dementia in NHs with higher PSC scores in communication openness had lower odds of in-hospital death. This effect was stronger in NHs located in states with higher minimum NH nurse staffing requirements.
DISCUSSION AND IMPLICATIONS: Promoting communication openness in NHs across nursing disciplines may help avoid unnecessary hospitalization at the end of life, and merits particular attention as NHs address nursing staff mix while adhering to state staffing requirements. Future research to better understand unintended consequences of staffing requirements is needed to improve end-of-life care in NHs.
The COVID-19 pandemic created a global health emergency that has changed the practice of medicine and has shown the need for palliative care as an essential element of hospital care. In our small South Florida hospital, a palliative care service was created to support the frontline caregivers. Thanks to the hospital support, our team was formed rapidly. It consisted of 3 advanced care practitioners, a pulmonary physician with palliative care experience and the cooperation of community resources such as hospice and religious support. We were able to support patients and their families facilitating communication as visitation was not allowed. We also addressed goals of care, providing comfort care transition when appropriate, and facilitating allocation of scarce resources to patients who were most likely to benefit from them. With this article we describe a simplified framework to replicate the creation of a Palliative Care Team for other hospitals that are experiencing this need.
Ce récit documente comment des malades sont morts en FaceTime pendant l’épidémie de Covid. À partir d’une enquête de terrain que j’ai commencée en janvier 2020 dans le service de réanimation d’un hôpital de la côte Ouest des États-Unis, je raconte l’apparition de la Covid-19, la séparation des malades de leurs familles, la mort vécue sur l’écran des téléphones mobiles, ainsi que les différentes façons d’agir des soignants face à cette situation que, tous, s’accordèrent à trouver « horrible ».
BACKGROUND/OBJECTIVES: Experts have suggested that patients represented by professional guardians receive higher intensity end-of-life treatment than other patients, but there is little corresponding empirical data.
DESIGN: Retrospective cohort study.
SETTING AND PARTICIPANTS: Among veterans aged 65 and older who died from 2011 to 2013, we used Minimum Data Set assessments to identify those who were nursing home residents and had moderately severe or severe dementia. We applied methods developed in prior work to determine which of these veterans had professional guardians. Decedent veterans with professional guardians were matched to decedent veterans without guardians in a 1:4 ratio, according to age, sex, race, dementia severity, and nursing facility type (VA based vs non-VA).
MEASUREMENTS: Our primary outcome was intensive care unit (ICU) admission in the last 30 days of life. Secondary outcomes included mechanical ventilation and cardiopulmonary resuscitation in the last 30 days of life, feeding tube placement in the last 90 days of life, three or more nursing home-to-hospital transfers in the last 90 days of life, and in-hospital death.
RESULTS: ICU admission was more common among patients with professional guardians than matched controls (17.5% vs 13.7%), but the difference was not statistically significant (adjusted odds ratio = 1.33; 95% confidence interval = .89–1.99). There were no significant differences in receipt of any other treatment; nor was there a consistent pattern. Mechanical ventilation and cardiopulmonary resuscitation were more common among patients with professional guardians, and feeding tube placement, three or more end-of-life hospitalizations, and in-hospital death were more common among matched controls.
CONCLUSION: Rates of high-intensity treatment were similar whether or not a nursing home resident with dementia was represented by a professional guardian. This is in part because high-intensity treatment occurred more frequently than expected among patients without guardians.
PURPOSE: There is limited evidence on the intensity of end-of-life (EOL) care for women < 65 years old, who account for about 40% of breast cancer deaths in the United States. Using established indicators, we estimated the intensity of EOL care among these women.
METHODS: We used 2000-2014 claims data from a large US insurer to identify women with metastatic breast cancer who, in the last month of their lives, had more than one hospital admission, emergency department visit, or an intensive care unit (ICU) admission and/or used antineoplastic therapy in the last 14 days of life. Using multivariate logistic regression, we assessed whether intensity of EOL care differed by demographic characteristics, socioeconomic factors, or regions.
RESULTS: Adjusted estimates show an increase in EOL ICU admissions between 2000-2003 and 2010-2014 from 14% (95% CI, 10% to 17%) to 23% (95% CI, 20% to 26%) and a small increase in emergency department visits from 10% (95% CI, 7% to 13%) to 12% (95% CI, 9% to 15%), both statistically significant. There was no statistically significant change in the proportions of women experiencing more than one EOL hospitalization (14% in 2010-2014; 95% CI, 11% to 17%) and of those receiving EOL antineoplastic treatment (24% in 2010-2014; 95% CI, 21% to 27%). Living in predominantly mixed, Hispanic, Black, or Asian neighborhoods correlated with more intense care (odds ratio, 1.39; 95% CI, 1.10 to 1.77 for ICU).
CONCLUSION: Consistent with findings in the Medicare population, our results suggest an overall increase in the number of ICU admissions at the EOL over time. They also suggest that patients from non-White neighborhoods receive more intense acute care.
BACKGROUND: The low completion rate of advance directives (ADs) has received attention in Japan and the United States, as policy makers and health care professionals face aging populations with multiple comorbidities. Among the barriers to AD planning, cultural values and attitudes appear to be particularly influential. A comparison of culturally distinct societies provides a deeper understanding of these barriers. Through such an approach, this study identifies strategies for increasing AD planning among late-middle-age Japanese and US individuals.
METHODS: After giving informed consent for the Institutional Review Board-approved study, Japanese and US respondents (45-65 y; 50% female) without ADs completed a language-appropriate online survey. Participants were asked to review a decision aid as part of a scenario-based physician consultation regarding artificial nutrition and hydration (ANH). Hypotheses were analyzed using multigroup structural equation modeling.
RESULTS: Important similarities were identified across the 2 groups. After reviewing the decision aid, both samples strongly preferred "no ANH." Respondents who strongly valued either self-reliance or interpersonal relationships experienced greater preparedness for AD planning. In both countries, greater decision preparedness and positive death attitude predicted greater confidence to discuss care options with a provider. Finally, cultural values predicted preference for family participation: respondents with a strong interdependent self-concept desired more family involvement, whereas high independents preferred less.
CONCLUSIONS: Findings indicate the importance of documenting care preferences and accounting for individual differences. To increase AD adoption, providers should identify patient segments likely to benefit most from the interventions. Targeting individuals in both countries who value self-reliance and interpersonal relationships appears to be a good place to begin. Such individuals can be identified clinically through administration of validated measures used in this study.
BACKGROUND: The medical student experience of a clinical elective in palliative care (PC) remains understudied. Reflective narrative interventions can help students hone narrative competency skills, make sense of their clinical experiences and shed light on their perception of the rotation.
OBJECTIVES: To evaluate medical student written reflections after a PC clinical elective.
DESIGN: Students were asked to write a short reflective essay after PC clinical electives using open-ended writing prompts.
SETTING: Essays were collected from third and fourth-year medical students after completion of a PC elective at three geographically diverse academic medical centers in the United States.
MEASUREMENTS: Essays were coded for themes using a conventional content qualitative method of analysis.
RESULTS: Thirty-four essays were analyzed and four major themes emerged: reflection on the mission of medicine or motivation for being in medicine, reflection on professional skills or lessons learned, reflection on patient's experience and personal responses to PC rotation. Sub-themes were also identified.
CONCLUSIONS: Themes underscore the utility of the PC clinical elective as a meaningful experience that imparts useful skills, builds empathy, reminds students of their own motivations for being in medicine and serves as a catalyst for reflection on their own lives and relationships with their patients. Awareness of medical students' personal and emotional responses to a PC elective can help inform educators as they support their students and provide opportunities for reflection and education.
OBJECTIVE: This is a pilot study with a primary goal to develop an effective, targeted educational intervention that can serve as a teaching tool to educate African American (AA) population, especially the elderly, on options of end of life (EOL) prior to critical care.
METHOD: We first assessed the level of preparation for EOL in the AA community through a survey instrument. The survey was used to determine the deficits in knowledge in AA population in Mid-Michigan regarding EOL choices before and after the educational intervention. Paired-sample t-test was used to assess changes in understanding about EOL planning options. Regressions analysis was used to assess these changes while including several demographic covariates. P < 0.05 was considered statistically significant.
RESULTS: Our pilot data indicated that the educational intervention could be used as an effective teaching tool in educating AA population on EOL choices.
SIGNIFICANCE OF RESULTS: AA patients are more likely to choose life-sustaining measures at the end of their lives compared to other ethnic groups despite terminal illness. This decision is partly based on lack of knowledge of the available options of care at the EOL. Due to multiple life-sustaining measures, the AA patients are not receiving the care to help them peacefully die. This study provides evidence that physicians will need to increase their educational efforts with the AA population to help them better understand EOL options. An educational tool like the one developed in this study may be helpful and lessen the time of education so that the physician can answer any questions at the end of the session and also empower individuals and communities to take an active role in creating a culture of wellness at the EOL and decreasing morbidity.
Background: It is not clear whether use of specialty palliative care consults and “comfort measures only” (CMO) order sets differ by type of intensive care unit (ICU). A better understanding of palliative care provided to these patients may help address heterogeneity of care across ICU types.
Objectives: Examine utilization of specialty palliative care consultation and CMO order sets across several different ICU types in a multihospital academic health care system.
Design: Retrospective cohort study using Washington State death certificates and data from the electronic health record.
Setting/Subjects: Adults with a chronic medical illness who died in an ICU at one of two hospitals from July 2013 through December 2018. Five ICU types were identified by patient population and attending physician specialty.
Measurements: Documentation of a specialty palliative care consult during a patient's terminal ICU stay and a CMO order set at time of death.
Results: For 2706 eligible decedents, ICU type was significantly associated with odds of palliative care consultation (p < 0.001) as well as presence of CMO order set at time of death (p < 0.001). Compared with medical ICUs, odds of palliative care consultation were highest in the cardiothoracic ICU and trauma ICU. Odds of CMO order set in place at time of death were highest in the neurology/neurosurgical ICU.
Conclusion: Utilization of specialty palliative care consultations and CMO order sets varies across types of ICUs. Examining this variability within institutions may provide an opportunity to improve end-of-life care for patients with chronic, life-limiting illnesses who die in the ICU.
Importance: Little is known about how US clinicians have responded to resource limitation during the coronavirus disease 2019 (COVID-19) pandemic.
Objective: To describe the perspectives and experiences of clinicians involved in institutional planning for resource limitation and/or patient care during the pandemic.
Design, Setting, and Participants: This qualitative study used inductive thematic analysis of semistructured interviews conducted in April and May 2020 with a national group of clinicians (eg, intensivists, nephrologists, nurses) involved in institutional planning and/or clinical care during the COVID-19 pandemic across the United States.
Main Outcomes and Measures: Emergent themes describing clinicians’ experience providing care in settings of resource limitation.
Results: The 61 participants (mean [SD] age, 46  years; 38 [63%] women) included in this study were practicing in 15 US states and were more heavily sampled from areas with the highest rates of COVID-19 infection at the time of interviews (ie, Seattle, New York City, New Orleans). Most participants were White individuals (39 [65%]), were attending physicians (45 [75%]), and were practicing in large academic centers (=300 beds, 51 [85%]; academic centers, 46 [77%]). Three overlapping and interrelated themes emerged from qualitative analysis, as follows: (1) planning for crisis capacity, (2) adapting to resource limitation, and (3) multiple unprecedented barriers to care delivery. Clinician leaders worked within their institutions to plan a systematic approach for fair allocation of limited resources in crisis settings so that frontline clinicians would not have to make rationing decisions at the bedside. However, even before a declaration of crisis capacity, clinicians encountered varied and sometimes unanticipated forms of resource limitation that could compromise care, require that they make difficult allocation decisions, and contribute to moral distress. Furthermore, unprecedented challenges to caring for patients during the pandemic, including the need to limit in-person interactions, the rapid pace of change, and the dearth of scientific evidence, added to the challenges of caring for patients and communicating with families.
Conclusions and Relevance: The findings of this qualitative study highlighted the complexity of providing high-quality care for patients during the COVID-19 pandemic. Expanding the scope of institutional planning to address resource limitation challenges that can arise long before declarations of crisis capacity may help to support frontline clinicians, promote equity, and optimize care as the pandemic evolves.
Background: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality.
Methods: Mortality follow-back postal survey.
Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco).
Participants: Informal carers (ICrs) of decedents who had received palliative care.
Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG).
Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief.
Results: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66–76 h per week from ICrs for ‘being on call’, 52–55 h for ICrs being with them, 19–21 h for personal care, 17–21 h for household tasks, 15–18 h for medical procedures and 7–10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden.
Conclusions: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.
Objective: To increase earlier access to palliative care, and in turn increase documented goals of care and appropriate hospice referrals for seriously ill patients admitted to hospital medicine.
Background: Due to the growing number of patients with serious illness and the specialty palliative care workforce shortage, innovative primary palliative care models are essential to meet this population's needs.
Methods: Patients with serious illness admitted to hospital medicine at a quaternary urban academic medical center in New York City and received an embedded palliative care social worker consultation in 2017. We used univariate analyses of sociodemographic, clinical, and utilization data to describe the sample.
Results: Overall, 232 patients received a primary palliative care consultation (mean age of 69 years, 44.8% female, 34% white, median Karnofsky Performance Status of 40%), and 159 (69%) had capacity to participate in a goals-of -are conversation. Referrals were from palliative care solid tumor oncology trigger program (113 [49%]), specialty palliative care consultation team (42[18%]), and hospital medicine (34[14.6%]). Before the consultation, 10(4.3%) had documented goals of care and 207 (89%) did after the consultation. The percentage of those referred to hospice was 24.1%. Of those transferred to specialty palliative care consultation service, nearly half required symptom management.
Discussion: Patients who received a primary palliative care consultation were seen earlier in their illness trajectory, based on their higher functional impairment, and the majority had capacity to participate in goals-of-care discussions, compared with those who were seen by specialty palliative care. The consultation increased goals-of-care documentation and the hospice referral rate was comparable with that of the specialty palliative consultation team.