Background: A multilevel quality improvement program was implemented at an urban community hospital, serving a racially and ethnically pluralistic patient population, to increase participation in advance care planning (ACP).
Measures: Number of eligible patients who completed an ACP form.
Intervention: Projects were implemented over the course of two years that targeted patients, health care providers, the organization, and the community.
Outcomes: The intervention resulted in increased completion of four unique ACP forms. Completion of the Living Will increased by 60%, Health Care Proxy increased by 9%, Medical Orders for Life-Sustaining Treatment increased by 5%, and Do-Not-Resuscitate/Do-Not-Intubate orders increased by 3%.
Conclusion: Multilevel interventions can increase ACP participation in a racially and ethnically pluralistic patient population.
Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals.
Objectives: To describe distinct meanings of the term “uncertainty” that emerged during the qualitative evaluation of the development and implementation of an intervention to help oncologists overcome barriers to palliative care referrals.
Methods: We conducted a phenomenological qualitative analysis of “uncertainty” as experienced and described by interdisciplinary pediatric oncology team members in discussions, group activities and semistructured interviews regarding the introduction of palliative care.
Results: We found that clinicians caring for patients with advanced cancer confront seven broad categories of uncertainty: prognostic, informational, individual, communication, relational, collegial, and inter-institutional. Each of these kinds of uncertainty can contribute to delays in referring patients to palliative care.
Conclusion: Various types of uncertainty arise in the care of pediatric patients with advanced cancer. To manage these forms of uncertainty, providers need to develop strategies and techniques to handle professionally challenging situations, communicate bad news, manage difficult interactions with families and colleagues, and collaborate with other organizations.
Context: Researchers, hospices, and government agencies administer standardized questionnaires to caregivers for assessing end-of-life care quality. Caregiving experiences may influence end-of-life care quality reports, which have implications for caregiver outcomes, and are a clinical and policy priority.
Objectives: This study aims to determine whether and how caregivers' end-of-life care assessments depend on their burden and benefit perceptions.
Methods: This study analyzes data from 391 caregivers in the 2011 National Study of Caregiving and their Medicare beneficiary care recipients from the 2011–2016 National Health and Aging Trends Study. Caregivers assessed five end-of-life care aspects for decedents. Logistic regression was used and predicted probabilities of caregivers positively or negatively assessing end-of-life care based on their burden and benefit experiences calculated. Analyses adjusted for caregiver and care recipient demographic and health characteristics.
Results: No or minimal caregiving burden is associated with =0.70 probability of caregivers reporting they were always informed about the recipient's condition and that the dying person's care needs were always met, regardless of perceived benefits. High perceived caregiving benefit is associated with =0.80 probability of giving such reports, even when perceiving high burden.
Conclusion: Caregiver burden and benefit operate alongside one another regarding two end-of-life care evaluations, even when years elapse between caregiver experience reports and care recipient death. This suggests that caregiver interventions reducing burden and bolstering benefits may have a positive and lasting impact on end-of-life care assessments.
Context: High-quality advance care planning (ACP) discussions are important to ensure patient receipt of goal-concordant care; however, there is no existing tool for assessing ACP communication quality.
Objectives: The objective of this study was to develop and validate a novel instrument that can be used to assess ACP communication skills of clinicians and trainees.
Methods: We developed a 20-item ACP Communication Assessment Tool (ACP-CAT) plus two summative items. Randomized rater pairs assessed residents' performances in video-recorded standardized patient encounters before and after an ACP training program using the ACP-CAT. We tested the tool for its 1) discriminating ability, 2) interrater reliability, 3) concurrent validity, 4) feasibility, and 5) raters' satisfaction.
Results: Fifty-eight pre/post-training video recordings from 29 first-year internal medicine residents at Mount Sinai Hospital were evaluated. ACP-CAT reliably discriminated performance before and after training (median score 6 vs. 11, P < 0.001). For both pre/post-training encounters, interrater reliability was high for ACP-CAT total scores (intraclass correlation coefficient or ICC = 0.83 and 0.82) and the summative items Overall impression of ACP communication skills (ICC = 0.73 and 0.80) and Overall ability to respond to emotion (ICC = 0.83 and 0.82). Concurrent validity was shown by the strong correlation between ACP-CAT total score and both summative items. Raters spent an average of 4.8 minutes to complete the ACP-CAT, found it feasible, and were satisfied with its use.
Conclusion: ACP-CAT provides a validated measure of ACP communication quality for assessing video-recorded encounters and can be further studied for its applicability with clinicians in different clinical contexts.
The practice of medically assisted dying has long been contentious, and the question of what to call it has become increasingly contentious as well. Particularly among U.S. proponents of legalizing the practice, there has been a growing push away from calling it “physician-assisted suicide,” with assertions that medically assisted dying is fundamentally different from suicide. Digging deeper into this claim about difference leads to an examination of the difference between two kinds of suffering—suffering from physical conditions and suffering from psychological conditions—and therefore leads also toward an examination of whether requests for medical assistance in dying by those suffering from psychological conditions and those suffering from physical conditions should be painted with the same brush .
In this article, I aim both to illuminate some of the considerations that ought to be included in discussions related to medically assisted dying and to shed light on what the indirect effects of such discussions can be. I consider some of the reasons commonly given for holding that suicide and medically assisted dying differ fundamentally and then whether the conclusion that medically assisted dying should not be called “suicide” follows from the premises. I ask what else might justify the conclusion that the two acts ought to be called by different names, and I examine possible justifications for accepting this premise, as well as what justifications might exist for emphasizing how the acts are alike. Finally, I argue that we should be cautious before concluding that medically assisted dying should not be called “suicide.” We need more evidence either that the two acts are fundamentally different or that emphasizing differences between them is not likely to do more harm than good .
Many critically ill patients with COVID-19 need specialty level palliative care to manage symptoms, conduct goals of care conversations, and facilitate medical decision making in ethically and emotionally charged situations. During the apex of the COVID-19 crisis in New York, the Adult Palliative Care Service at Columbia University Irving Medical Center (CUIMC)/NewYork-Presbyterian (NYP) received a 7-fold increase in consultation requests. This unprecedented increase in demand outpaced the palliative care team's ability to respond. We describe the rapid development and implementation of a scalable virtual consultation model staffed by out-of-state palliative care specialist volunteers.
Background: Community transmission of coronavirus 2019 (Covid-19) was detected in the state of Washington in February 2020.
Methods: We identified patients from nine Seattle-area hospitals who were admitted to the intensive care unit (ICU) with confirmed infection with severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2). Clinical data were obtained through review of medical records. The data reported here are those available through March 23, 2020. Each patient had at least 14 days of follow-up.
Results: We identified 24 patients with confirmed Covid-19. The mean (±SD) age of the patients was 64±18 years, 63% were men, and symptoms began 7±4 days before admission. The most common symptoms were cough and shortness of breath; 50% of patients had fever on admission, and 58% had diabetes mellitus. All the patients were admitted for hypoxemic respiratory failure; 75% (18 patients) needed mechanical ventilation. Most of the patients (17) also had hypotension and needed vasopressors. No patient tested positive for influenza A, influenza B, or other respiratory viruses. Half the patients (12) died between ICU day 1 and day 18, including 4 patients who had a do-not-resuscitate order on admission. Of the 12 surviving patients, 5 were discharged home, 4 were discharged from the ICU but remained in the hospital, and 3 continued to receive mechanical ventilation in the ICU.
Conclusions: During the first 3 weeks of the Covid-19 outbreak in the Seattle area, the most common reasons for admission to the ICU were hypoxemic respiratory failure leading to mechanical ventilation, hypotension requiring vasopressor treatment, or both. Mortality among these critically ill patients was high. (Funded by the National Institutes of Health.)
Purpose: Lack of appreciation of cultural differences may compromise care for seriously ill minority patients, yet culturally appropriate models of palliative care (PC) are not currently available in the United States. Rural patients with life-limiting illness are at high risk of not receiving PC. Developing a PC model that considers the cultural preferences of rural African Americans (AAs) and White (W) citizens is crucial. The goal of this study was to develop and determine the feasibility of implementing a culturally based PC tele-consult program for rural Southern AA and W elders with serious illness and their families, and assess its acceptability to patients, their family members, and clinicians.
Methods: This was a three-phase study conducted in rural Beaufort, South Carolina, from January 2013 to February 2016. We used Community-Based Participatory Research methods, including a Community Advisory Group (CAG) with equal numbers of AA and W members, to guide the study. Phase 1: Cultural values and preferences were determined through ethnic-based focus groups comprising family members (15 W and 16 AA) who had cared for a loved one who died within the past year. We conducted a thematic analysis of focus group transcripts, focused on cultural values and preferences, which was used as the basis for the study protocol. Phase 2: Protocol Development: We created a protocol team of eight CAG members, two researchers, two hospital staff members, and a PC physician. The PC physician explained the standard clinical guidelines for conducting PC consults, and CAG members proposed culturally appropriate programmatic recommendations for their ethnic group for each theme. All recommendations were incorporated into an ethnic-group specific protocol. Phase 3: The culturally based PC protocol was implemented by the PC physician via telehealth in the local hospital. We enrolled patients age =65 with a life-limiting illness who had a family caregiver referred by a hospitalist to receive the PC consult. To assess feasibility of program delivery, including its acceptability to patients, caregivers, and hospital staff, using Donebedian's Structure-Process-Outcome model, we measured patient/caregiver satisfaction with the culturally based consult by using an adaptation of FAMCARE-2.
Results: Phase 1: Themes between W and AA were (1) equivalent: for example, disrespectful treatment of patients and family by hospital physicians; (2) similar but with variation: for example, although religion and church were important to both groups, and pastors in both ethnic groups helped family face the reality of end of life, AA considered the church unreservedly central to every aspect of life; (3) divergent, for example, AAs strongly believed that hope and miracles were always a possibility and that God was the decider, a theme not present in the W group. Phase 2: We incorporated ethnic group-specific recommendations for the culturally based PC consult into the standard PC consult. Phase 3: We tested feasibility and acceptability of the ethnically specific PC consult on 18 of 32 eligible patients. The telehealth system worked well. PC MD implementation fidelity was 98%. Most patients were non-verbal and could not rate satisfaction with consult; however, caregivers were satisfied or very satisfied. Hospital leadership supported program implementation, but hospitalists only referred 18 out of 28 eligible patients.
Conclusions: The first culturally based PC consult program in the United States was developed in partnership with AA and W Southern rural community members. This program was feasible to implement in a small rural hospital but low referral by hospitalists was the major obstacle. Program effectiveness is currently being tested in a randomized clinical trial in three southern, rural states in partnership with hospitalists. This method can serve as a model that can be replicated and adapted to other settings and with other ethnic groups.
Background: Advance care planning conversations and preparations do not occur as frequently as they should. Framing advance care planning as a health behavior and an opportunity for community engagement can help improve community-dwellers’ intentions to have discussions and preparations regarding facing serious illness, death and dying.
Methods: A multi-setting confidential pre/post paper survey assessing advance care planning discussions and preparation intentions was given to community-dwelling citizens residing in the New York metropolitan area. Survey items were adapted from a previous end of life survey to include questions on chronic illnesses, important conversations, comfort levels and concerns about end of life. The intervention was a 1-hour presentation on advance care planning (importance, laws, effective communication and audience questions)
Results: Our study found significant interest in discussing advanced care planning across age groups. There were significant changes for participant intentions regarding: having conversations with loved ones, a health care proxy or similar document and none; as well as differences in participant intentions for discussions with caregiver, family, friends, primary physician and no-one.
Conclusion: Educating individuals on the importance of advance care planning may be effective in changing community dwellers’ intentions to start the conversation and put advanced care planning measures in place.
Background: Chronic lung disease is a common cause of mortality, yet little is known about where individuals with chronic lung disease die.
Research Question: What are the trends and factors associated with place of death among individuals with chronic lung disease?
Study Design and Methods: We conducted a cross-sectional analysis of natural deaths using the Centers for Disease Control and Prevention Wide-ranging OnLine Data for Epidemiologic Research from 2003 to 2017 for which chronic obstructive pulmonary disease (COPD), interstitial lung disease (ILD), or cystic fibrosis (CF) was the underlying cause. Place of death was categorized as hospital, home, nursing facility, hospice facility, and other.
Results: From 2003 to 2017, more than 2.2. million deaths were primarily attributed to chronic lung disease (51.6% female, 92.4% white). Most were attributed to COPD (88.9%), followed by ILD (10.8.%), and CF (0.3%). Hospital and nursing facility deaths declined from 44.4% (n= 59,470) and 22.6% (n= 30,285) to 28.3% (n= 49,6555) and 19.7% (n= 34,495) while home and hospice facility deaths increased from 23.3% (n=31,296) and 0.1% (n=192) to 34.7% (n=60851) and 9.0% (n=15,861) respectively. Male sex, being married, and having some college education were associated with increased odds of home death while non-white race and Hispanic ethnicity were associated with increased odds of hospital death. Compared to decedents with COPD, individuals with ILD and CF had increased odds of hospital death and reduced odds of home, nursing facility or hospice facility death.
Interpretation: Home deaths are increasing among decedents from chronic lung disease increasing the need for quality end-of-life care in this setting. Further research should explore the end-of-life needs and preferences of these patients and their caregivers with particular attention paid to patients with ILD and CF who continue to have high rates of hospital death.
Introduction: Although shortcomings in clinician–family communication and decision making for incapacitated, critically ill patients are common, there are few rigorously tested interventions to improve outcomes. In this manuscript, we present our methodology for the Pairing Re-engineered Intensive Care Unit Teams with Nurse-Driven Emotional support and Relationship Building (PARTNER 2) trial, and discuss design challenges and their resolution.
Methods and analysis: This is a pragmatic, stepped-wedge, cluster randomised controlled trial comparing the PARTNER 2 intervention to usual care among 690 incapacitated, critically ill patients and their surrogates in five ICUs in Pennsylvania. Eligible subjects will include critically ill patients at high risk of death and/or severe long-term functional impairment, their main surrogate decision-maker and their clinicians. The PARTNER intervention is delivered by the interprofessional ICU team and overseen by 4–6 nurses from each ICU. It involves: (1) advanced communication skills training for nurses to deliver support to surrogates throughout the ICU stay; (2) deploying a structured family support pathway; (3) enacting strategies to foster collaboration between ICU and palliative care services and (4) providing intensive implementation support to each ICU to incorporate the family support pathway into clinicians’ workflow. The primary outcome is surrogates’ ratings of the quality of communication during the ICU stay as assessed by telephone at 6-month follow-up. Prespecified secondary outcomes include surrogates’ scores on the Hospital Anxiety and Depression Scale, the Impact of Event Scale, the modified Patient Perception of Patient Centredness scale, the Decision Regret Scale, nurses’ scores on the Maslach Burnout Inventory, and length of stay during and costs of the index hospitalisation.
We also discuss key methodological challenges, including determining the optimal level of randomisation, using existing staff to deploy the intervention and maximising long-term follow-up of participants.
Ethics and dissemination: We obtained ethics approval through the University of Pittsburgh, Human Research Protection Office. The findings will be published in peer-reviewed journals.
Whether it is through enlisting primary providers, building a champion workforce, or hiring more specialist consultants, there is no question that palliative programming must be at the heart of our healthcare system’s quality transformation.
We assessed the trend of palliative care (PC) referrals and its effect on hospitalization cost and length of stay (LOS) in ruptured aortic aneurysm (rAA). The Nationwide Inpatient Sample from 2005 to 2014 was used to identify admissions with age =50 and rAA. A total of 54 134 rAA admissions were identified and 5019 (9.3%) had PC referrals. During the study period, PC referral rate increased from 0.97% to 15.3% (P trend < .0001). Length of stay (1.7 vs 2.8 days, adjusted mean ratio [aMR] = 0.62, 95% confidence interval [CI]: 0.58-0.66), and cost (US$7778 vs US$13 575, aMR = 0.57, 95% CI: 0.52-0.63) were significantly lower in rAA admissions that did not undergo interventions. In the percutaneous repair group, LOS was similar but the cost was higher (US$61 759 vs US$52 260, aMR = 1.18, 95% CI: 1.05-1.30), whereas in surgical repair group, LOS was shorter (4.6 vs 5.9 days, aMR = 0.77, 95% CI: 0.73-0.82) but the cost was higher (US$59 755 vs US$52 523, aMR = 1.14, 95% CI: 1.02-1.28). Palliative care could shorten LOS and save hospitalization cost in rAA admissions not a candidate for repair. Further studies are required to investigate the variable effects of PC on rAA.
Background: To provide high quality care to all patients who have serious illness, health-care systems must develop effective generalist palliative care strategies.
Objective: To identify palliative care quality gaps within a range of settings in the California safety net and to develop theory-based interventions to address them.
Design: Structured assessment using the National Consensus Project for Quality Palliative Care Clinical Practice Guidelines and a Predisposing, Reinforcing, and Enabling Constructs in Educational/Environmental Diagnosis and Evaluation intervention planning model-based worksheet, which integrates behavior theories to identify factors that predispose, enable, and reinforce clinicians to perform recommended behaviors.
Setting and Participants: Adviser pairs—one from palliative care and one from a partner service line—from 10 California public health-care systems conducted assessments at their sites. A steering committee provided educational webinars, best practices, and assessment tools.
Measurements: Adviser pairs interviewed at least 6 partner service line stakeholders to identify palliative care quality gaps, behaviors clinicians should perform to close gaps, and factors that predispose, enable, and reinforce those behaviors.
Results: Partner service lines were primary care (n = 4), surgery (n = 3), emergency department (n = 2), and radiation oncology (n = 1). Selected gaps were advance care planning and goals of care communication (n = 6), identifying patients with serious illness (n = 3), and pain management (n = 1). All sites designed multiple interventions to address gaps, based on factors that predispose, enable, and reinforce a target audience to perform a target behavior. Advisers reported that the program strengthened relationships between palliative care and the partner service line
Conclusion: This structured assessment helped busy clinicians develop theory-based generalist palliative care interventions.
Background: Despite mounting evidence that specialty palliative care (PC) improves patients' symptoms, quality of life, and goal concordant care, these services are likely underutilized.
Objective: To determine the rate of missed and delayed opportunities for specialty PC in patients with peri-hospital death.
Design: A retrospective, cross-sectional analysis, using electronic medical records of a state-wide healthcare system in Colorado, was performed. Included were adults who died during admission or within seven days of discharge from January 2015 to October 2018 at an academic medical center and had prior encounters within the affiliated state-wide healthcare system in the last year of life. Excluded were patients with sudden or obstetrics-related deaths. Referral orders from the electronic medical record identified specialty PC consultation. Data from the Colorado Department of Public Health and Environment linked with the medical record determined time from first PC consultation to death.
Results: The sample included 2088 decedent patients, with most deaths (81%) occurring in the hospital. Only 33% of patients had PC consultation, which was higher for patients with cancer (42%) than for those without cancer (26%). Of patients with specialty PC consultation, the median time from first referral to death was eight days (interquartile range: 3.25–25 days).
Conclusions: Patients with peri-hospital death have low rates of specialty PC consultation, which, when present, often occurs close to death. This suggests there is a high rate of missed opportunities for specialty PC in this population.
Aim: To pilot test a home end-of-life and palliative care intervention for family caregivers and patients with rare advanced lung diseases and estimate effect-size for the power analysis in a future clinical trial.
Design: This study uses a parallel randomized control trial. Families are randomly assigned to the intervention group or the control group in a 1:1 fashion.
Methods: The study population includes patients with rare advanced lung diseases and their family caregivers who are involved in patients’ home care. The control group receives standard care through their hospital or outpatient clinics. The intervention group receives standard care plus 2-weekly home end-of-life and palliative care coaching by experienced community nurses. Primary outcome is breathlessness measured by shortness of breath scale. Secondary outcomes are: (1) caregivers’ anxiety and depression measures; (2) the presence of patient’s signed advance directives in the medical record or not; and (3) Helpfulness of intervention measured by self-report Helpfulness scale. The study was funded in October 2018 and received ethical Institutional Review Board approval in February 2019.
Discussion: West Virginia has one of the highest incidence rates of lung disease deaths in the nation. However, there is inadequate home end-of-life and palliative care for this underserved population. This is an initial interventional study of nurse-led coaching home-based palliative care for rare advanced lung diseases in rural Appalachia. Developing research collaboration with clinicians is essential for enrollment. Enrollment was successful due to regular meetings with pulmonologists who screened patients per the study inclusion criteria in their specialty clinic and made direct referrals to the research assistants. Results of this study will be used in the future trial.
Impact: The findings will contribute to the evidence-based home nursing care, planning for family/patient preferences and supportive end-of-life palliative care for managing advanced lung diseases at home.
Background: Until recently, consumers have had limited resources to assess quality of hospices agencies, contributing to growing numbers of consumers turning to online review sites, such as Yelp. However, little is known about the content of hospice Yelp reviews and how these relate to recently available Center for Medicare and Medicaid Services' Hospice Compare (HC) site data.
Objective: To better understand what consumers report on Yelp about hospice care and explore how these areas relate to HC data.
Design: We examined 692 consumer Yelp reviews of 67 hospices in California and compared identified themes with quality measures presented on the HC site.
Setting/Subjects: We used a purposive sample of California Hospice's with Yelp reviews.
Measurements: Qualitative consumer comments about their experience with hospice care were analyzed by using a grounded theory approach.
Results: We found that overall Yelp comments were positive, however Yelp themes were more extensive and diverse than those on HC.
Conclusion: We recommend that consumers consider both HC and online review sites such as Yelp when evaluating a hospice.
Context: The coronavirus disease 2019 (COVID-19) pandemic is stressing health care systems throughout the world. Significant numbers of patients are being admitted to the hospital with severe illness, often in the setting of advanced age and underlying comorbidities. Therefore, palliative care is an important part of the response to this pandemic. The Seattle area and UW Medicine have been on the forefront of the pandemic in the U.S.
Methods: UW Medicine developed a strategy to implement a palliative care response for a multihospital health care system that incorporates conventional capacity, contingency capacity, and crisis capacity. The strategy was developed by our palliative care programs with input from the health care system leadership.
Results: In this publication, we share our multifaceted strategy to implement high-quality palliative care in the context of the COVID-19 pandemic that incorporates conventional, contingency, and crisis capacity and focuses on the areas of the hospital caring for the most patients: the emergency department, intensive care units, and acute care services. The strategy focuses on key content areas, including identifying and addressing goals of care, addressing moderate and severe symptoms, and supporting family members.
Conclusion: Strategy planning for delivery of high-quality palliative care in the context of the COVID-19 pandemic represents an important area of need for our health care systems. We share our experiences of developing such a strategy to help other institutions conduct and adapt such strategies more quickly.
Background: Provision of palliative care is part of the standard of care for patients with serious, life-limiting medical illnesses. Patients in the palliative care setting have high rates of psychiatric co-morbidity. However, integration of mental health care into palliative care remains a significant gap. With appropriate training, consultation-liaison (CL) psychiatrists are well-positioned to improve integration of mental health into palliative care.
Purpose: To understand current palliative care training practices for CL psychiatry fellows in the United States.
Method: We invited all U.S. CL psychiatry fellowship program directors to participate in a 17-item online structured survey aimed at understanding palliative care training in their fellowship programs.
Results: 37/61 (61%) of CL psychiatry fellowship program directors responded to the survey. 86% of programs provide some palliative care didactics, but the topics covered vary widely. Programs are closely split between offering required, elective, or no clinical palliative care experiences. Only about half (45%) of programs identify formal opportunities for interaction between palliative care and CL psychiatry fellows. Program directors identified topics such as goals of care discussions, systems issues in end-of-life care, and pain management as important for fellows to learn. Barriers to teaching these topics included time, lack of teaching faculty, and disciplinary siloes.
Conclusions: Although CL psychiatry fellowship program directors identify a number of key teaching topics in palliative care for CL psychiatry fellows, there are wide discrepancies in the depth and content of existing palliative care didactic and clinical experiences in CL psychiatry fellowships.