Preface

Abstracts from theCenter to Advance Palliative Care National Seminar Pathways to Quality Palliative Care<i>November 13–15, 2014</i><i>Orlando, Florida</i>

Public Awareness and Perceptions of Palliative and Comfort Care

PC-FACS

BackgroundThe 2009 European Society of Cardiology Position statement on Palliative Care in Heart Failure concluded that palliative care should be considered part of comprehensive care provision over the whole disease...

Evidence-Based Medicine, more broadly termed ‘evidence-based practice’, is now recognised throughout medicine as routine approach to care, whereby research-derived evidence is incorporated into clinical decisions. Care is based on systematic...

BackgroundMuch effort has been made to explore how patients with advanced chronic illness and their families experience care when they attend the Emergency Department, and many studies have investigated how healthcare professionals perceive Palliative Care provision in the Emergency Department. Various models exist, but nonetheless incorporating palliative care into the Emergency Department remains challenging. Considering both healthcare professionals’ and users’ perspective on problems encountered in delivering and receiving appropriate palliative care within this context may provide important insight into meaningful targets for improvements in quality of care. Accordingly, this study aims at exploring issues in delivering palliative care in the Emergency Department from the perspective of both providers and users, as part of a larger project on the development and implementation of a quality improvement program in Italian Emergency Departments.MethodsA qualitative study involving focus group interviews with Emergency Department professionals and semi-structured interviews with patients with palliative care needs in the Emergency Department and their relatives was conducted. Both datasets were analyzed using Thematic Analysis.ResultsTwenty-one healthcare professionals, 6 patients and 5 relatives participated in this study. Five themes were identified: 1) shared priorities in Emergency Department among healthcare professionals and patients, 2) the information provided by healthcare professionals and that desired by relatives, 3) perception of environment and time, 4) limitations and barriers to the continuity of care, and 5) the contrasting interpretations of giving and receiving palliative care.ConclusionsThis study provides insights into targets for changes in Italian Emergency Departments. Room for improvement relates to training for healthcare professionals on palliative care, the development of a shared care pathway for patients with palliative care needs, and the optimization of Emergency Department environment. These targets will be the basis for the development of a quality improvement program in Italian Emergency Departments.

Dilemmas 2012

Cancer and palliative care in Africa.

PC-FACS

Living and Dying Well: A National Action Plan for Palliative and End of Life Care in Scotland (Scottish Government 2008) highlighted that optimal palliative care provision was highly dependent on...

In reply:

Editor’s note: The following post, on palliative care in the long term setting, is authored by Mary Ersek and David Stevenson (photos and linked bios above) and by Justine Sefcik, MS, RN, a fourth year doctoral student at the University of Pennsylvania School of Nursing, a 2012-2014 National Hartford Centers of Gerontological Nursing Excellence Patricia G. Archbold Scholar, and a previous Jonas Hartford Scholar. The post is the first in a periodic Health Affairs Blog series on palliative care, health policy, and health reform. The series will feature essays adapted from and drawing on an upcoming volume, Meeting the Needs of Older Adults with Serious Illness: Challenges and Opportunities in the Age of Health Care Reform, in which clinicians, researchers and policy leaders address 16 key areas where real-world policy options to improve access to quality palliative care could have a substantial role in improving value. As we begin the series, we offer the following short introduction from Diane Meier and Amy Kelley: “Because of its focus on quality of care, the Affordable Care Act is poised to expand access to palliative care services for the sickest, most vulnerable, and therefore most costly, 5 percent of patients, who drive about 50 percent of all healthcare spending. Palliative care is specialized medical care for people with serious illnesses that focuses on providing relief from symptoms, pain, and stress, whatever the diagnosis or stage of illness. Patients (and family caregivers) receiving palliative care experience improved quality of life, better symptom management, lower rates of depression and anxiety, and improved survival. Because patient and family needs are met, crises are prevented, thereby directly reducing need for emergency department and hospital use and their associated costs.” Around a quarter of older Americans die in nursing homes each year, including nearly 70 percent of individuals with advanced dementia. For these individuals, the delivery of coordinated, person-centered services at the end of life is a central component in the array of supportive and therapeutic services they receive. Although growing numbers of nursing home residents are accessing Medicare’s hospice benefit before death, substantial barriers continue to impede the meaningful integration of palliative and hospice care into the long-term services and supports that most nursing home residents receive. These barriers range from the orientation of nursing homes &ndash; and the regulatory standards that govern them &ndash; toward rehabilitative care, to the fragmented approach of Medicare and Medicaid in financing acute, post-acute, palliative, and supportive services. The challenge of improving end-of-life care in nursing homes is broad, and no single policy reform or intervention alone will be sufficient. Nonetheless, there are several mechanisms by which policymakers and practitioners could improve end-of-life care in nursing homes. Importantly, these mechanisms align broadly with the guiding principles for long-term services and supports (LTSS) outlined by the US Commission on Long-Term Care in their final report to Congress. Specifically, the Commission concluded that there is an urgent need to enhance the quality of LTSS and improve the coordination among the providers that deliver these services. While emphasizing the need to finance and deliver services in a fiscally sustainable way, the Commission called for improving “the integration of LTSS with health care services in a person- and family-centered approach.”

Background: The majority of expected deaths in high income countries occur in hospital where optimal palliative care cannot be assured. In addition, a large number of patients with palliative care needs receive inpatient care in their last year of life. International research has identified domains of inpatient care that patients and carers perceive to be important, but concrete examples of how these might be operationalised are scarce, and few studies conducted in the southern hemisphere. Aim: To seek the perspectives of Australian patients living with palliative care needs about their recent hospitalisation experiences to determine the relevance of domains noted internationally to be important for optimal inpatient palliative care and how these can be operationalised. Design: An exploratory qualitative study using semi-structured interviews. Setting/participants: Participants were recruited through five hospitals in New South Wales, Australia. Results: Twenty-one participants took part. Results confirmed and added depth of understanding to domains previously identified as important for optimal hospital palliative care, including: Effective communication and shared decision making; Expert care; Adequate environment for care; Family involvement in care provision; Financial affairs; Maintenance of sense of self/identity; Minimising burden; Respectful and compassionate care; Trust and confidence in clinicians and Maintenance of patient safety. Two additional domains were noted to be important: Nutritional needs; and Access to medical and nursing specialists. Conclusions: Taking a person-centred focus has provided a deeper understanding of how to strengthen inpatient palliative care practices. Future work is needed to translate the body of evidence on patient priorities into policy reforms and practice points.

Palliative care improves quality of life (QoL) in advanced illnesses, but data in end-stage liver disease (ESLD) are limited. It is unknown whether palliative care delivered by hepatologists is effective when compared with palliative care specialists. To compare the effectiveness of palliative care delivered by trained hepatologists with the care delivered by conventional palliative care specialists in improving QoL at 3 months. This comparative effectiveness cluster randomized trial for US patients treated for ESLD in 19 US medical centers compared a palliative care intervention delivered by palliative care-trained hepatologists (hepatologist group; 11 centers) with palliative care specialists (consultative group; 8 centers). Eligible patients were US adults with either decompensated cirrhosis or hepatocellular cancer who had a life expectancy of at least 6 months, had not received or scheduled liver transplantation, or had not received palliative care in the prior 3 months. Hepatologists in hepatologist group alone received primary palliative care training. Data collection occurred from January 2019 through June 2025; analysis was conducted from July to September 2025. Participants received 4 palliative care visits over 3 months delivered by either palliative care-trained hepatologists or palliative care specialists, using a structured palliative care checklist. Superiority or a priori noninferiority of the effect of palliative care delivered by hepatologists vs palliative care specialists on change in QoL at 3 months, measured by the Functional Assessment of Cancer Therapy-Hepatobiliary (FACT-Hep) total score (higher scores indicating better QoL). Secondary outcomes included change in symptom burden, distress, depression, satisfaction from baseline to 3 months, and mortality. A total of 935 patients were enrolled (mean [SD] age, 63.0 [10.3] years; 275 female [29%]; 130 Hispanic ethnicity [14%]; 144 Black [15%], 736 White [79%]). From baseline to 3 months, QoL improved in both groups (adjusted mean: hepatologist, 8.01 [95% CI, 5.38 to 10.65]; consultative, 7.02 [95% CI, 4.34 to 9.71]; both P < .001). Although superiority was not found in change in QoL, prespecified noninferiority analysis showed that the improvement in the hepatologist group was noninferior to the consultative group (adjusted mean difference, 0.98 [95% CI, -2.86 to 4.83]; P = .01). Symptom burden (adjusted mean difference, -7.52 [95% CI, -9.89 to -5.15] vs -5.31 [95% CI, -7.60 to -3.03]) and depression (adjusted mean difference, -1.18 [95% CI, -1.78 to -0.57] vs -0.90 [95% CI, -1.49 to -0.31]) improved in both groups, without significant between-group differences. Patient satisfaction improved more in the hepatologist group compared with the palliative care group (adjusted mean difference, 3.37 [95% CI, 2.24 to 4.49] vs 0.91 [95% CI, -0.15 to 1.96]; P = .002). Mortality at 3 months was similar in both groups. This cluster trial found that palliative care delivered by trained hepatologists was comparable with palliative care delivered by palliative care specialists in improving QoL in patients with ESLD and was associated with greater improvement in patient satisfaction, demonstrating the effectiveness among enrolled patients. ClinicalTrials.Gov Identifier: NCT03540771.

Little is known about the optimal use of shared decision making (SDM) to guide palliative and end-of-life decisions in the emergency department (ED). The objective was to convene a working group to develop a set of research questions that, when answered, will substantially advance the ability of clinicians to use SDM to guide palliative and end-of-life care decisions in the ED. Participants were identified based on expertise in emergency, palliative, or geriatrics care; policy or patient-advocacy; and spanned physician, nursing, social work, legal, and patient perspectives. Input from the group was elicited using a time-staggered Delphi process including three teleconferences, an open platform for asynchronous input, and an in-person meeting to obtain a final round of input from all members and to identify and resolve or describe areas of disagreement. Key research questions identified by the group related to which ED patients are likely to benefit from palliative care (PC), what interventions can most effectively promote PC in the ED, what outcomes are most appropriate to assess the impact of these interventions, what is the potential for initiating advance care planning in the ED to help patients define long-term goals of care, and what policies influence palliative and end-of-life care decision making in the ED. Answers to these questions have the potential to substantially improve the quality of care for ED patients with advanced illness.