Background 

There is a global need for improvements in hospital based palliative care. Patient Reported Experience Measures (PREMs) measure care quality from the perspectives of patients and families to inform monitoring and improvement. 

Aim 

To explore perspectives of patients with palliative care needs, their carers and the clinical team to inform PREM choice and implementation within the hospital context.

Methods 

An exploratory qualitative study, using semi-structured interviews and/or focus groups. Recruitment occurred from three wards in a tertiary hospital in metropolitan Queensland. Eligible participants were either: inpatients with palliative care needs (screened using the Supportive and Palliative Care Indicators Tool); carers of these inpatients; clinicians (medical, nursing and allied health); or health service consumer representatives. Interviews and focus groups were audio-recorded, transcribed and analysed using integrated thematic analysis.

Results 

Participants included 19 patients, 8 carers, 5 consumer representatives and 10 clinicians. Patients and carers were predominantly born in Australia (n=18; 67%) and with a malignant diagnosis (n=18; 67%). Six themes emerged from the data including: 1. PREMs for people with palliative care needs ought to be tailored to the needs of this population; 2. PREMs should appraise whether the needs of carers have been met as distinct from those of patients; 3. PREMs for inpatients with palliative care needs ought to be easy to use, brief and incorporate space for free text alongside each question. 4. Implementation of PREMs for people with palliative care needs ought to consider who administers these, when and how often; 5. PREM data needs to be specific enough to inform process change and/or care provision; 6. Patients and carers require meaningful feedback to encourage PREM completion.

Conclusions

Patients, carers, consumer representatives and clinicians provide clear advice about important elements informing PREM choice and implementation for the unique needs of inpatients with palliative care needs. 

Background: Australian Institute of Health and Welfare data demonstrates that people who die will have an average of 2.6 admissions in their last year of life. Globally there is a need to strengthen inpatient palliative care.  Patient reported experience measures (PREM) are valuable tools for measuring quality of care and informing areas for improvement.  

Aims: To determine the quality-of-care experienced by hospitalised patients with palliative care needs, and their carers. 

Methods: A prospective observational study with consecutive sampling of consenting inpatients admitted to one of three wards at a tertiary metropolitan Australian hospital. The Supportive and Palliative Care Indicators Tool was used to identify patients likely to have palliative care needs. Eligible patients were invited to complete the ‘ConsideRATE survey,’ aiming for 40 responses per ward. ‘ConsideRATE’ is a PREM demonstrated to be a reliable and valid tool to measure experiences of hospital care for inpatients living with serious illness. Analysis occurred using descriptive statistics.

Results: All eligible patients approached agreed to participate. 111 patients and 9 carers completed the ConsideRATE PREM between June and November 2022. Across the three wards, the number (%) of respondents rating each domain as ‘very good’ was 57 (48%) for attention to physical problems, 38 (32%) for attention to feelings, 19 (16%) for attention to surroundings, 35 (30%) for respect to what matters,  33 (28%) for communication about care, 12 (19%) for attention to your affairs, and 17 (15%) for attention to what to expect from your illness. There were differences between wards, and patients provided useful illustrative comments that were fed back to each clinical team alongside the scores to inform local improvements.

Conclusion: PREM results provide important feedback for clinical teams about the quality of care delivered to inpatients with palliative care needs and informs intervention designs aimed at improving care quality.

Delivery of end-of-life care for severe chronic obstructive pulmonary disease (COPD) has been hampered by an unpredictable disease trajectory and poor integration of health care and social services. 

To critically explore the perspectives, values, and experiences of stakeholders in COPD end-of-life healthcare services in a large district in Aotearoa New Zealand.

Focus groups analysed utilising critical theory and Actor-Network Theory.

Stakeholders in end-of-life COPD healthcare services were purposively sampled from a large healthcare network in Canterbury, Aotearoa New Zealand to participate in seven focus groups (bereaved carers, community-based health professionals, non-Māori, non-Pacific patients, and support people (two groups), Māori patients, supporters and health professionals, Pacific patients, support people and health professionals, and hospital-based health professionals). Participants discussed end-of-life care services for people with COPD. Transcripts were coded utilising descriptive and structural coding to develop themes related to provision of quality care. Participants were positioned as experts. We considered how the themes arising supported and disrupted the healthcare network for end-of-life COPD.

Five themes related to quality of care for end-of-life COPD were identified: compassion, competence, community, commitment, and collaboration. The absence of any of these five themes required for quality care led to power imbalances within healthcare systems. Power inequities created disconnection among stakeholders which then disrupted commitment, community, and collaboration. A dysfunctional healthcare network impeded compassion between stakeholders and did not support their competence, leading to lower quality care. All five themes were identified as essential to delivery of high-quality end-of-life care in COPD. 

Stakeholders’ perspectives of end-of-life care for COPD identified of core features of a health system network that enabled or impeded the actions of stakeholders and allocation of resources to provide quality care. 

The Australian health and aged care systems have inherent complexity. Numerous dimensions illustrate the complexity, including care by multiple providers to a population with different needs and within an environment with various funding levers. 

While community-based pharmacists have insight into the complexity of their work environment and researchers examine this, approaches are required to ensure policymakers and funders make sense of the environment in which their decisions impact. 

In completing a PhD by prior publication, Grembowski's conceptual model of the role of complexity in the care of patients with multiple chronic conditions was used to provide a framework to examine six previously published studies. The core tenets of the model are the patient's and caregiver's needs, complexity, and available services. This paper uses this conceptual model to explore the environment concerning the roles of pharmacists, caregivers and medications in supporting people with palliative needs in the primary care setting. Significantly, it demonstrated how these publications collectively contribute to new insights into the complex environment where community-based pharmacists and caregivers collaborate in delivering care to support the dying to remain in their home environment. Indeed, these new insights are critical to understanding how community-based pharmacists operate within the complex environment of Australian health and aged care. In doing so, we demonstrate how the model assisted in identifying research gaps, inherent tensions in delivering care, emerging themes, and new perspectives on the care environment using hindsight. 

So, while this paper demonstrates the use of Grembowski’s conceptual model in understanding the role of pharmacists, caregivers and medications for people with palliative needs, this model has various additional applications. Specifically, organisations that develop policy, fund research, and translate research findings into pharmacy practice could benefit from this approach: delivering evidence-based health and aged care in the community.

Background: Early palliative care for patients with advanced cancer has been shown to have a variety of benefits including better quality of life and improved mood. However clinical trial methodology and outcomes in this space have been mixed.

Aim/Methods: This nation-wide multi-centre randomised controlled trial sought to examine outcomes of early specialist palliative care referral for patients with advanced thoracic cancers in our healthcare setting, compared to standard oncology care with referral at clinician’s discretion. The primary endpoint was health-related quality of life.

Results: No significant difference was seen between arms. This presentation will include the most current data analyses from this study, reflections on integrated palliative cancer care and discussions about pragmatic service delivery.

Patients with palliative care needs often prefer to be cared for at home, but when their needs are complex or acute this may not be considered feasible or safe. The PallCare@Home pilot was a bed substitution model, delivering intensive, short-term specialist palliative care to patients admitted in their own homes, rather than their usual hospital-based health service.

To deliver specialist palliative care intervention commensurate with patient preferences, whilst reducing emergency department presentations and hospital admissions. 

Led by a nurse practitioner coordinator, a core team of specialist palliative care physicians and clinical nurse consultants collaborated with Hospital-in-the-Home nurses to provide a least two contacts per day, utilising telehealth when appropriate. After hours support was provided by an established state-wide palliative care after hours telephone support service, supplemented by a private generalist nursing home-visiting service for patients in unstable or terminal phase. 

In the first three months of the pilot, twelve patients were admitted to the program, mainly for symptom management, care coordination and to transition from hospital to the community setting. The average length of stay was 11.5 days. An estimated 4 emergency department presentations and 5 hospital admissions were prevented. No patients died during their admission, but of those patients who died during the follow-up period, the home death rate was 66%. Consumer feedback was almost universally positive, with a Net Promoter Score of 90. 

The PallCare@Home model of care was well-received by patients, caregivers and health professionals, achieving high levels of patient satisfaction, and patient-centred care. Collaboration with general nursing teams had limitations when caring for a patient population with complex and changeable palliative care needs. The significant workload of care coordination prior to, during and after an admission was resource intensive but crucial to the success of the program.