PC-FACS

PC-FACS

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

My Father and Mother Died at Home — Will Yours?

Implementing Primary Palliative Care in Post-acute nursing home care: Protocol for an embedded pilot pragmatic trial

Diffusion of Palliative Care in Nursing Homes: Lessons From the Culture Change Movement

PC-FACS

73 Background: Patients receiving curative chemoradiation treatment (CRT) for head and neck cancer (HNC) undergo one of the most intensive treatments in oncology, resulting in immense physical and psychological symptoms. Integrated palliative care can improve symptoms and coping in patients with advanced cancer, but has not been evaluated in patients with curable solid tumors. Thus, we are conducting the first pilot study of a collaborative palliative and oncology care intervention among patients receiving CRT to assess feasibility and acceptability. Methods: Eligible participants include newly diagnosed HNC patients starting curative-intent CRT. The intervention entails weekly in-person palliative care (PC) visits integrated with standard oncology care during CRT, followed by 4 weekly phone calls after CRT ends. The PC visits are conducted primarily by a PC RN, with a supervising MD or NP available. Visits focus on coping and managing prominent symptoms during CRT. PC clinicians also receive a weekly patient-reported symptom assessment. Acceptability of the intervention is assessed at 1 month post CRT. The primary outcome is feasibility, defined as a &gt;50% enrollment rate with &gt;70% of participants attending at least half of the PC visits. Planned accrual is 20 patients. Results: We have enrolled 88% (14/16) of eligible patients to date. 11/14 (79%) have p16+ disease. All 14 have completed CRT and are evaluable for feasibility. Participants attended 98% (94/96) of all possible PC visits and completed 99% (95/96) of weekly symptom assessments. PC clinicians spent an average of 35.5 minutes (SD 15.1) per visit with participants. Among the 10 participants who completed the intervention and are evaluable for acceptability, 100% found the intervention “very helpful” and would “definitely recommend” it to others undergoing CRT. Conclusions: An integrated PC intervention to improve symptoms and coping during CRT for HNC is both feasible and acceptable with a high enrollment rate, excellent intervention compliance, and high patient satisfaction. Future studies will evaluate the effects of the integrated intervention on patient-reported outcomes and health care utilization. Clinical trial information: NCT03760471.

To describe rates and policies in U.S. Nursing Homes (NH) related to palliative care, comfort care, and hospice care based on a nationwide survey of directors of nursing. A national survey was distributed online and was completed by 316 directors of nursing of NHs (11% response rate). The directors of nursing were asked about availability and policies in their facilities. Specifically, questions were related to policies, referral patterns, discussion about such care, and types of medical conditions qualifying for such services. Hospice is significantly more available than palliative or comfort care programs; also, for-profit facilities, compared to non-profits, are significantly more likely to have palliative care programs and medical directors for palliative care. Social workers and nurses were most likely to suggest palliative type programs. Only 42% of facilities with palliative program provide consultation by a palliative certified physician. Residents with non-healing pressure ulcers, frequent hospitalizations, or severe/uncontrolled pain or non-pain symptoms were less likely to be referred. There is limited availability of palliative type programs in NH facilities and underutilization in those NH with programs.

Background: Approximately one-quarter of all deaths in the United States occur in nursing homes (NHs). Palliative care has the potential to improve NH end-of-life care, but more information is needed on the provision of palliative care in NHs serving Black and Hispanic residents. Objective: To determine whether palliative care services in United States NHs are associated with differences in the concentrations of Black and Hispanic residents, respectively, and the impact by region. Design: We conducted a cross-sectional analysis. The outcome was NH palliative care services (measured by an earlier national survey); total scores ranged from 0 to 100 (higher scores indicated more services). Other data included the Minimum Data Set and administrative data. The independent variables were concentration of Black and Hispanic residents (i.e., <3%, 3-10%, >10%), respectively, and models were stratified by region (i.e., Northeast, Midwest, South and West). We compared unadjusted, weighted mean palliative care services by the concentration of Black and Hispanic residents and computed NH-level multivariable linear regressions. Setting/Subjects: Eight hundred sixty-nine (weighted n = 15,020) NHs across the United States. Results: Multivariable analyses showed fewer palliative care services provided in NHs with greater concentrations of Black and Hispanic residents. Fewer palliative care services were reported in NHs in the Northeast, for which >10% of the resident population was Black, and NHs in the West for which >10% was Hispanic versus NHs with <3% of the population being Black and Hispanic (-13.7; p < 0.001 and -9.3; p < 0.05, respectively). Conclusion: We observed differences in NH palliative care by region and with greater concentration of Black and Hispanic residents. Our findings suggest that greater investment in NH palliative care services may be an important strategy to advance health equity in end-of-life care for Black and Hispanic residents.

Background: The understanding of what palliative care is, and which patients may benefit from palliative care, has important implications for optimal patient care in all areas of health provision. Aim: To explore the understanding of palliative care by healthcare professionals caring for patients with advanced cancer attending emergency departments. Design: Qualitative study, with two phases: the first, a series of focus groups with healthcare professionals from various disciplines and settings caring for patients with advanced cancer presenting to emergency departments; the second, semi-structured telephone interviews with emergency healthcare professionals across Australian States and Territories, including outside metropolitan centers. The data were audio-recorded and transcribed, with analysis undertaken using a qualitative thematic analysis. Setting/participants: Saturation of themes was reached after 8 focus groups (22 emergency nurses, 21 emergency physicians, 6 oncologists, 6 hospital palliative care clinicians, and 28 community palliative care clinicians) and 11 telephone interviews (8 emergency physicians and 3 emergency nurses), a total of 94 participants. Results: The overarching theme was that healthcare professionals held contradictory understandings of palliative care and its application in the emergency department; subthemes highlighted these inconsistencies when the term “palliative” is used, in understandings of and engagement with palliative care services and in perceptions about the practical utility of palliative care. Conclusion: There are entrenched contradictions and tensions surrounding the term “palliative care”; confronting these is likely to require more than re-branding, and will promote better care for this vulnerable patient group in the emergency department.

People are dying in nursing homes. This may sound like a clarion call for a new wave of nursing home policing; instead it is a statement of a simple fact that we must embrace. Over 20 percent of older Americans meet their deaths in a nursing home, and 30 percent of all persons dying in hospitals have been transferred there from nursing homes just a few days earlier. Understanding that people die in nursing homes--and should die in nursing homes, just as they should be able to die at home--ought to drive us to improve their care. The literature is already rich with case studies and demonstration projects undertaken by nursing homes to improve care of the dying. Broader change requires a shift in culture and a reframing of the issues. Contemporary standards for nursing home quality and the accepted framework for end of life decision-making have inadvertently placed obstacles in the path of good care for the significant proportion of older people who will spend their final days in a nursing home. Enriching the Ideal for Nursing Home Care The cornerstone of contemporary nursing home quality standards has been the unequivocal repudiation of the related beliefs that nursing homes are way stations for the dying elderly and that decline is inevitable for nursing home residents. Instead of being resigned to inevitable decline, regulators and professionals are committed to maintaining, if not improving, the physical, mental, and social health of nursing home residents. This hard-won expectation of active support for maintenance and growth rather than mere caretaking has directed nursing homes toward a more engaged and less fatalistic care model. This change is good, in part because the nursing home industry, regulators, and caregivers have become alert to substandard care that had once hidden behind routine acceptance of physical and mental decline. These rehabilitative, health-promoting expectations, however, may have unintentionally produced a death-denying culture within the nursing home. Regulations impose standards that assume that physical, mental, and emotional decline are signals of deficiencies in care unless demonstrated to be otherwise. Physical changes commonly associated with dying, such as weight loss, have thus become signs of failure, rather than a normal part of dying, and so trigger requirements that the facility justify its care. Because nursing home administrators are highly sensitive to regulatory risk and avoid situations that may attract the attention of regulators, the regulatory emphasis on positive indicators of health can discourage them from providing good care to a dying resident. This dynamic is revealed, for example, by the fact that imminently dying residents are often transferred to hospitals so their deaths will not occur in the nursing home and require that care be defended. Failure to accept the indicators of decline that naturally occur in dying may also be reflected in the emphasis on tube feeding for nursing home residents. Thus, the rehabilitative expectations, captured and reinforced in regulation, skew nursing home care models away from care of the dying. Before nursing homes can improve end of life care, dying will have to find its place in the nursing home culture. For nursing homes, a shift in culture necessarily involves paying attention to regulation and to the providers' reactions to regulation as well as to other behaviors that create and maintain a culture. Culture and regulation go hand in hand in the nursing home environment because of the pervasive scope of nursing home regulation, the enforcement orientation of regulators, and the intense risk aversion of nursing home administrators. Efforts to make room for the dying patient require a review of standards and adoption of changes to facilitate the appropriate level and type of care for them. Some have argued, for example, that changes in the mandatory Resident Assessment Index could more readily encourage nursing homes to provide better palliative care. …

Specialty-aligned palliative care (SAPC) refers to interprofessional palliative care (PC) that is delivered to a specific population of patients in close partnership with other primary or specialty clinicians. As evolving PC models address physical, psychosocial, and spiritual suffering across illnesses and settings, PC clinicians must acquire advanced knowledge of disease-specific symptoms, common treatments, and complications that impact prognosis and outcomes. The tips provided in this article draw on the experience and knowledge of interprofessional PC and other specialist clinicians from diverse institutions across the United States who have developed and studied SAPC services across different disease groups. Recommendations include focusing on approaching specialty team partnerships with humility, curiosity, and diplomacy; focusing on patient populations where PC needs are great; clarifying how work and responsibilities will be divided between PC and other clinicians to the extent possible; using consults as opportunities for bidirectional learning; and adapting workflows and schedules to meet specialty team needs while managing expectations and setting limits as appropriate. Furthermore, to provide effective SAPC, PC clinicians must learn about the specific symptoms, prognoses, and common treatments of the patients they are serving. They must also build trusting relationships and maintain open communication with patients and referring clinicians to ensure integrated and aligned PC delivery.

Background: A transitional care program was developed at a southern San Diego hospital to guide patients dealing with heart failure from an inpatient to an outpatient setting to decrease hospital readmissions. Although, very successful with a quarterly readmission average of 9%, patients that are considered end-stage heart failure categorized by ejection fraction less than 30% and have greater than one visit in a thirty day period do not qualify for transitional care. These patients’ readmission rates average 50%. The literature shows that patients who will not significantly improve within six months would benefit from palliative and hospice care, thus a palliative care referral process was created by the education director to better capture patients that fall into the advanced heart failure category. Evidence indicates that palliative care supports the best possible quality of life in patients and families facing serious illness. Purpose: The purpose of this evidence-based project is to utilize a palliative or hospice care referral process for end-stage heart failure patients that don’t meet transitional care criteria in an attempt to improve quality of life evidenced by QOLI questionnaire. Method: Members of the transitional and palliative care team will send a list of de-identified patients using only financial numbers via Microsoft outlook to the DNP student; he will then access the patient’s chart and ask if they are willing to participate in a two part questionnaire. A convenience sample of 10 patients with a primary or secondary heart failure diagnoses discharged from a suburban southern San Diego, California, hospital that did not meet transitional care criteria where presented with a Ferrans and Powers Quality of Life Index (QOLI) cardiac version. The first questionnaire will be presented during their hospitalization or within five days of discharge and the second will be presented at thirty days after discharge. Results: Utilizing the Ferrans and Powers Quality Index tool patients indicated a 19.25% increase in the perception of quality of life as well as an increase of 53.6% in their health and function score. Implications for Practice: The information gathered from this project can be utilized by physicians and nurse practitioners practicing at an inpatient hospital setting to help assess a patient’s needs, illness management, and quality of life related to heart failure. Utilizing the new referral process has potential to influence patient’s self-management, improve social support, and ultimately improve quality of life in patients with end-stage heart failure.

This study is part of the overarching PVIS (Palliative Care in Nursing Homes) project aimed at building competence in palliative care for nursing home staff. Our objective was to describe nursing home staff's attitudes to competence-building programs in palliative care. Three different programs were developed by specialist staff from three local palliative care teams. In all, 852 staff at 37 nursing homes in the greater Stockholm area participated. Staff from 7 nursing homes participated in 11 focus-group discussions. Variation in size between the seven nursing homes initiated purposeful selection of staff to take part in the discussions, and descriptive content analysis was used. The results suggest that staff reported positive experiences as they gained new knowledge and insight into palliative care. The experiences seemed to be similar independent of the educational program design. Our results also show that staff experienced difficulties in talking about death. Enrolled nurses and care assistants felt that they carried out advanced care without the necessary theoretical and practical knowledge. Further, the results also suggest that lack of support from ward managers and insufficient collaboration and of a common language between different professions caused tension in situations involved in caring for dying people. Nursing home staff experienced competence-building programs in palliative care as useful. Even so, further competence is needed, as is long-term implementation strategies and development of broader communication skills among all professions working in nursing homes.

Pragmatic Trials and Improving Long-Term Care: Recommendations From a National Institutes of Health Conference.