Longitudinal symptom profile of palliative care patients receiving a nurse-led end-of-life (PEACH) programme to support preference to die at home.

OBJECTIVES: Tailored models of home-based palliative care aimed to support death at home, should also ensure optimal symptom control. This study aimed to explore symptom occurrence and distress over time in Palliative Extended And Care at Home (PEACH) model of care recipients. DESIGN: This was a prospective cohort study. SETTING AND PARTICIPANTS: Participants were consecutive recipients of the PEACH rapid response nurse-led model of care in metropolitan Sydney (December 2013-January 2017) who were in the last weeks of life with a terminal or deteriorating phase of illness and had a preference to be cared or die at home. OUTCOME MEASURES: Deidentified data including sociodemographic and clinical characteristics, and symptom distress scores (Symptom Assessment Score) were collected at each clinical visit. Descriptive statistics and forward selection logistic regression analysis were used to explore influence of symptom distress levels on mode of separation ((1) died at home while still receiving a PEACH package, (2) admitted to a hospital or an inpatient palliative care unit or (3) discharged from the package (alive and no longer requiring PEACH)) across four symptom distress level categories. RESULTS: 1754 consecutive clients received a PEACH package (mean age 70 years, 55% male). 75.7% (n=1327) had a home death, 13.5% (n=237) were admitted and 10.8% (n=190) were still alive and residing at home when the package ceased. Mean symptom distress scores improved from baseline to final scores in the three groups (p<0.0001). The frequency of no symptom distress score (0) category was higher in the home death group. Higher scores for nausea, fatigue, insomnia and bowel problems were independent predictors of who was admitted. CONCLUSION: Tailored home-based palliative care models to meet preference to die at home, achieve this while maintaining symptom control. A focus on particular symptoms may further optimise these models of care.

Factors Associated With Mode of Separation for People With Palliative Diagnoses With Preference for Home Death Receiving Care From a Nurse-Led End of Life (Palliative Extended and Care at Home) Program.

Palliative Extended and Care at Home (PEACH) is a rapid response nurse-led package of care mobilized for palliative care patients who have an expressed preference to die at home. This study aimed to identify the demographic and clinical predictors of home death for patients receiving the package. Deidentified data were used from administrative and clinical information systems. Univariate and multivariate analyses were conducted to assess association of sociodemographic factors with mode of separation. Furthermore, 1754 clients received the PEACH package during the study period. Mode of separation was home death (75.7%), hospital/palliative care unit admission (13.5%), and alive/discharged from the PEACH Program (10.8%). Of participants with clear preference to die at home, 79% met their wish. Multivariate analysis demonstrated cancer diagnosis, patients who wished to be admitted when death was imminent, and patients with undecided preference for location of death were associated with an increased likelihood of being admitted to the hospital. Compared with those with spousal caregivers, those cared for by their child/grandchild and other nonspouse caregivers were significantly associated with a decreased likelihood of being admitted to the hospital/palliative care unit. Our results show that opportunities to tailor home care based on referral characteristics to meet patient preference to die at home, at individual, system, and policy levels, exist.

Understanding of advance care planning in primary care: a gap analysis.

BACKGROUND: Although primary care is a well suited context for conducting advance care planning (ACP), there are many barriers to initiating discussions regarding future health preference and end-of-life conversations. METHODS: This qualitative study conducted 30 detailed individual interviews with senior administrators, medical and nurse practitioners of a local health district, NSW Ambulance, e-Health NSW, general practitioners and practice nurses to find out about barriers to ACP in South Western Sydney. RESULTS: Thematic analysis was conducted on the interviews. Six major themes were identified: Prevalence; Empowerment of roles and responsibilities; Lack of training/knowledge/confidence; Fragmentation of care; Patient/family readiness; and Prognostication. Half of the participants were willing to use a prognostic tool to identify when a patient was likely to be at the end of their life and provide a prompt to initiate ACP. CONCLUSION: In addition to addressing training and acknowledging resource constraints, these findings suggest that if a prognostic tool was validated and practical in a primary care setting, it may provide valuable assistance to encourage everyone in society to begin discussing this issue and completing ACP.

Palliative Care Home Support Packages (PEACH): a carer cross-sectional survey.

BACKGROUND: In December 2013, a partnership between five local health districts and a non-governmental organisation implemented the Palliative Care Home Support Packages (PEACH) Program. The PEACH Program aims to support palliative care clients in their last days of life at their own home. This study sought to evaluate the quality of care delivered by the service from the perspective of clients' primary carers. METHODS: A letter was sent to carers of clients 6-10 weeks after the client's death, inviting them to participate in an anonymous survey. The survey measured the level of satisfaction on various aspects of the service using FAMCARE and Likert scales, and invited for comments about the care received and suggestions for improvement. RESULTS: Out of 17 aspects of care provided by the PEACH Program, 13 were scored with 'exceptional' or 'acceptable performance'. The highest satisfaction was observed in meeting clients' physical needs and providing pain relief. The most dissatisfaction was observed in addressing spiritual matters, family conferences and information about treatment side effects. Ninety-five per cent of responses were either 'satisfied' or 'very satisfied' with the overall care provided at home during the last week of the client's life. CONCLUSION: The results of this research provide further evidence to the field of what constitutes a good home death and the support mechanisms required to enable this. The results also have strong implications on how local services provided by the PEACH Program are delivered in the future.

RENEW-a renal redesign project in predialysis patient care.

BACKGROUND: An ageing population and geographical growth, along with an increase in the number of people that reside in specific location, are increasing the demand for renal replacement therapies. Hospital-based haemodialysis units are struggling to cope with the associated physical, staffing and cost demands. Home-based dialysis therapies are known to be more cost effective with superior social, physical health and survival outcomes. METHODS: 'RENEW, a renal redesign project, examined the pre-dialysis health care experience of renal patients to find opportunities to improve patient care outcomes and increase the uptake of home-based dialysis therapies. This article details two crucial parts of the approach to change management: (i) diagnostics-an inclusive, client focused, multidisciplinary approach to identify issues relating to the pre-dialysis journey-and (ii) solution design-an inclusive problem-solving approach to identify and marry solutions to the issues identified during diagnostics. RESULTS: Based on feedback from patients/caregivers and staff interviews, utilizing a clinical redesign methodology, a new model of care was developed, implemented and subsequently embedded into clinical practice. The results have been evident via improved care coordination, enhanced patient preparation for dialysis, improved patient psychosocial welfare and, importantly, an increased number of patients planned for and commencing home dialysis. This has empowered patients by giving them the confidence, knowledge and skills to be actively engaged in their own care. The project resulted in significant expenditure avoidance. CONCLUSION: Change management strategies with successful implementation are vital components of evolving clinical practice to achieve both clinical and organizational goals.