'People that suffer or have been through it know the answers': stakeholders' perspectives on improving healthcare systems for end-of-life care in chronic obstructive pulmonary disease.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is a progressive and disabling lung condition with a high mortality. Our research has shown that health care for end-of-life COPD is poorly integrated. The aim of this study was to involve people with end-of-life COPD, their support people and health professionals in the design of healthcare services to help improve the delivery of care for advanced COPD, including informing system-level quality improvement. DESIGN: We conducted a focus group study involving stakeholders of healthcare services: people with end-of life COPD, support people, bereaved support people, and community- and hospital-based health care professionals. METHODS: We conducted qualitative analysis using deductive structural coding, and then inductive descriptive and pattern coding. Analyses were triangulated by investigators. The research positioned people with end-of-life COPD, their support people and health professionals as experts in healthcare services. Critical theory and Actor-Network theory informed the analysis. RESULTS: Seven focus groups involving 74 participants reported their experiences of end-of-life care for COPD. Five themes related to healthcare systems responses to improving care quality were identified: governance, system integration, resource design and development, standardisation of processes, and communication. CONCLUSION: Stakeholders provided multiple healthcare system-level responses to end-of-life care in COPD that could inform healthcare service design and clinical quality improvement.

Recruitment of participants with pancreatic cancer to a mixed media study for optimal recruitment in an Australasian survey of pancreatic enzyme replacement.

BACKGROUND: Pancreatic cancer is relatively rare and aggressive, with digestion and malabsorption issues often leading to significant weight loss. Recruitment of people with this malignancy into studies can be challenging, and innovative methods need to be explored to improve recruitment rates. AIM: To describe a mixed media methodology and the outcomes used to recruit patients to participate in a binational survey. METHODS: The details of the mixed media method used to identify and recruit people with pancreatic cancer are described. This method was used to investigate pancreatic enzyme replacement therapy use in people with pancreatic cancer across Australia and Aotearoa New Zealand. RESULTS: The mixed media approach was successful in reaching 334 participants from a range of ethnicities and regions. Results showed that social media platforms were notably more efficient and cost-effective than radio and newspaper but required additional expertise, including graphic design and media strategy knowledge. CONCLUSIONS: Social media is an effective and efficient method of recruiting people with pancreatic cancer to a national survey. Studies using media to recruit patients may need to include team members with a range of skills.

Stakeholders' Perspectives on the Quality of End-of-Life Health Care Services for Chronic Obstructive Airways Disease: A Focus Group Study.

Introduction: 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. Objective: 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. Design: Focus groups analysed utilising critical theory and Actor-Network Theory. Methods: 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-Maori, non-Pacific patients, and support people (two groups), Maori 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. Results: 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. Conclusion: 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.

Defining research priorities and needs in cancer symptoms for adults diagnosed with cancer: an Australian/New Zealand modified Delphi study.

PURPOSE: This study asked consumers (patients, carers) and healthcare professionals (HCPs) to identify the most important symptoms for adults with cancer and potential treatment interventions. METHODS: A modified Delphi study was conducted involving two rounds of electronic surveys based on prevalent cancer symptoms identified from the literature. Round 1 gathered information on participant demographics, opinions and/or experience on cancer symptom frequency and impact, and suggestions for interventions and/or service delivery models for further research to improve management of cancer symptoms. In Round 2, respondents ranked the importance of the top ten interventions identified in Round 1. In Round 3, separate expert panels of consumers and healthcare professionals (HCPs) attempted to reach consensus on the symptoms and interventions previously identified. RESULTS: Consensus was reached for six symptoms across both groups: fatigue, constipation, diarrhoea, incontinence, and difficulty with urination. Notably, fatigue was the only symptom to reach consensus across both groups in Round 1. Similarly, consensus was reached for six interventions across both groups. These were the following: medicinal cannabis, physical activity, psychological therapies, non-opioid interventions for pain, opioids for breathlessness and cough, and other pharmacological interventions. CONCLUSIONS: Consumers and HCPs prioritise differently; however, the symptoms and interventions that reached consensus provide a basis for future research. Fatigue should be considered a high priority given its prevalence and its influence on other symptoms. The lack of consumer consensus indicates the uniqueness of their experience and the need for a patient-centred approach. Understanding individual consumer experience is important when planning research into better symptom management.

Enzyme replacement in advanced pancreatic cancer: patient perceptions.

PURPOSE: Advanced pancreatic cancer has a universally poor survival rate. Patients frequently develop malabsorption that requires pancreatic enzyme replacement therapy (PERT). This study explores the experience of patient engagement with PERT and how the medication is taken and tolerated. METHODS: Participants with advanced pancreatic cancer requiring PERT were interviewed after referral to a specialist palliative care team. An inductive analysis was used to code the data. Theoretical sufficiency was reached after 12 participants. RESULTS: Four themes emerged from the interviews-patient context, health literacy, relationship to food and experience of taking the pancreatic enzymes. Respondents brought their own life experiences into the clinical encounter when told of the diagnosis. Patients had high levels of understanding and engagement with the diagnosis and treatment, understood the benefits of PERT in digestion and tolerated the medication well. CONCLUSIONS: Patients with metastatic pancreatic cancer understand the life-limiting nature of their illness. They want to participate in their healthcare decisions and are capable of complex medication titration when given good explanations and they experience benefits. PERT should be offered to these patients by a team of knowledgeable health professionals with good communication skills that can continue to support and review their needs.

Palliative medicine Master Classes for primary care: an evaluation.

Introduction General practitioners (GP) are key in the delivery of primary palliative care in the community, so appropriate knowledge and skills are needed. Previous research has suggested there may be gaps in training opportunities. Aims To develop and evaluate a Master Class series presented by a hospice palliative care service to their local GPs and other health-care professionals. A secondary aim was to measure the lasting impacts of the educational intervention. Methods The study setting was the Canterbury region of Aotearoa New Zealand (NZ). GPs and other health-care professionals were surveyed using a research team-designed questionnaire rating self confidence in the nominated learning objectives before and after the Master Classes. The participants were also asked to self-rate the application of the knowledge to their practice 3 years after the Master Class sessions were attended. Results There were 56 sets of questionnaires completed. The participants tended to be experienced female GPs with a range of palliative care patients in their practice. There was significant improvement in most learning outcomes across the Master Classes series. The attendees reported the Master Classes were relevant and clear, with useful resources. The improvements in the learning outcomes were largely sustained over 3 years. Discussion The provision of palliative care education that aligns with clinical practice improves knowledge, skills and confidence in GPs who provide most of the end-of-life care in New Zealand.

The Impact of Pancreatic Enzyme Replacement Therapy on Patients With Advanced Pancreatic Adenocarcinoma: A Systematic Review and Narrative Synthesis.

ABSTRACT: Advanced pancreatic cancer has a poor prognosis globally. Patients often develop pancreatic exocrine insufficiency leading to malabsorption. This systematic literature review explores the impact of pancreatic enzyme replacement therapy (PERT) on patients with advanced pancreatic cancer. Data sources include MEDLINE, CINAHL, Embase, Cochrane (CENTRAL), PsychINFO, and Joanna Briggs Institute databases from inception to January 14, 2022, with reference list checking on Google Scholar. Narrative synthesis was used as the eligible studies were likely to be heterogeneous and hard to compare. This synthesis approach uses 4 steps: theory development, preliminary synthesis, exploration of relationships, and assessment of the robustness of the synthesis. Four themes arose from analyzing the study outcomes including PERT education, efficacy of PERT, the patient experience, and lack of awareness regarding enzyme replacement. The included studies did not use validated tools or standardized measurements, which made it difficult to compare or draw conclusions. Pancreatic enzyme replacement therapy shows the potential to improve symptoms, nutrition, weight loss, and survival, but high-quality studies with standardized outcomes have not been completed. Patient and health professional education is required because there seems to be a general lack of awareness about the use of PERT in pancreatic cancer.Systematic Review Registration: PROSPERO 2020 CRD42020195986.

Deactivation of implantable cardioverter defibrillators towards the end of life: a survey of perceptions and practice among New Zealand clinicians.

AIMS: This nationwide survey aimed to investigate perceptions and practices regarding deactivation of ICDs among New Zealand clinicians caring for patients with life-limiting illnesses, and to identify barriers to conversations about ICD deactivation. METHODS: Cardiologists, general physicians and geriatricians across New Zealand were sent a survey that explored their views and practices regarding deactivation of defibrillators in terminally ill patients. RESULTS: One hundred and forty-five out of 457 clinicians (32%) replied. Most (98%) of clinicians felt deactivation may be appropriate in this group. Key barriers to discussions were felt to include uncertainty over prognosis (77%), likelihood of causing anxiety in their patients (70%), lack of clarity of roles and inexperience in the field. Cardiologists were more likely than general physicians and geriatricians to start deactivation discussions in patients with terminal disease. Doctors with more years in practice felt more comfortable raising the topic of deactivation. CONCLUSION: While most doctors were comfortable with the concept of device deactivation, issues such as uncertainty of prognosis, fear of causing anxiety, lack of role clarity and inexperience can be barriers to initiating conversations. Further guidance, education, support and shared care could benefit doctors caring for ICD recipients who have life-limiting illnesses.

Patient, carer and health professional experiences of end-of-life care services in chronic obstructive pulmonary disease: an interpretive synthesis of qualitative studies.

The objective of this systematic literature review is to identify patients', carers' and health professionals' reported perspectives of end-of-life care services for severe chronic obstructive pulmonary diseases (COPD) and explore whether services are person-centred and integrated according to WHO definitions. The systematic review was qualitative with interpretive synthesis. The data sources included MEDLINE, CINAHL, Emcare, Embase, Cochrane (CENTRAL), Joanna Briggs Institute and PsycINFO databases from inception to 23 May 2022 limited to the English language. Qualitative studies were eligible if they reported open-ended patients,' carers' or healthcare professionals' experiences of end-of-life care for severe COPD. Qualitative data were categorised according to healthcare stakeholder groups and conceptualised within a health services network using the Actor-Network Theory. Eighty-seven studies proved eligible. Eleven stakeholder groups constituted the healthcare services network for severe COPD (in order of frequency of interactions with other stakeholders): secondary care, primary care, community services, acute care, palliative care, carer, healthcare environment, patient, government, social supports and research. When evaluating the network for evidence of patient-centred care, patients and carers received input from all stakeholder groups. The relationship between stakeholder groups and patients was largely unidirectional (stakeholders towards patients) with low influence of patients towards all stakeholder groups. There was limited interaction between specific healthcare services, suggesting low network integration. Government services, research and social supports had few connections with other services in the healthcare network. Multiple intersecting health, community and government services acted on patients, rather than providing patient-informed care. Health services provided poorly integrated services for end-of-life care for severe COPD. PROSPERO registration number CRD42020168733.

Lymphoedema in advanced cancer: does subcutaneous needle drainage improve quality of life?

PURPOSE: Lower limb lymphoedema in the palliative care population has limited treatment options. Subcutaneous needle drainage is an underused procedure that has previously been described in the literature for refractory lymphoedema. This study will quantify the potential improvements to quality of life and the adverse outcomes for this group of patients. METHODS: This was a multicentre, non-randomised, observational trial using a validated questionnaire before and after the procedure. A tailored mobility measurement was also used. It extends a published pilot previously undertaken. RESULTS: Thirty-two procedures were performed on 31 patients across three sites. The average drainage volume was 5.5 L. The domain of appearance (3.2 vs 2.8 vs 2.6) improved significantly and was sustained. All of the domains, except appearance, showed a significant improvement at 2 weeks. The cellulitis rate was 6%. CONCLUSION: Subcutaneous needle drainage appears to improve quality of life in those with lower limb lymphoedema facing a life-limiting illness.

Spiralled Palliative Care Curriculum Aligned with International Guidelines Improves Self-Efficacy but Not Attitudes: Education Intervention Study.

PURPOSE: Despite recommendations that palliative care education should be in all health professional programmes, such education is ad-hoc and variable. To reduce variability, the European Association of Palliative Care (EAPC) published a comprehensive guideline for curricula development. This study evaluates a new palliative and end-of-life care course for medical undergraduates aligned with the EAPC guidelines, focusing on knowledge, skills and attitudes. METHODS: Final-year medical students were surveyed using two validated questionnaires: Self Efficacy in Palliative Care (SEP-C) and Thanatophobia scale (TS). We compared the intervention group, that were exposed to an integrated palliative medicine course throughout the three clinical years, with a control group that were not exposed to the new educational intervention. RESULTS: For self-efficacy, the intervention group had statistically significantly higher scores than the control arm. The control group had high scores compared with international data. Positive attitudes to dying patients were low and did not differ between the two groups. CONCLUSION: A well-designed palliative and end-of-life curriculum that is aligned to EAPC guidelines increases the self-efficacy of medical students in managing palliative patients but has little effect on attitudes to dying people. This is likely to be influenced by other factors such as the need for experiential learning.

What can we learn from patients to improve their non-invasive ventilation experience? 'It was unpleasant; if I was offered it again, I would do what I was told'.

OBJECTIVES: Non-invasive ventilation (NIV) is widely used as a lifesaving treatment in acute exacerbations of chronic obstructive pulmonary disease; however, little is known about the patients' experience of this treatment. This study was designed to investigate the experiences and perceptions of participants using NIV. The study interprets the participants' views and explores implications for clinical practice. METHODS: Participants with respiratory failure requiring NIV were interviewed 2 weeks after discharge. A grounded theory methodology was used to order and sort the data. Theoretical sufficiency was achieved after 15 participants. RESULTS: Four themes emerged from the data: levels of discomfort with NIV, cognitive experiences with NIV, NIV as a life saver and concern for others. NIV was uncomfortable for participants and affected their cognition; they still reported considering NIV as a viable option for future treatment. Participants described a high level of trust in healthcare professionals and delegated decision-making to them regarding ongoing care. CONCLUSIONS: This study provides insights into ways clinicians could improve the physical experience for patients with NIV. It also identifies a lack of recall and delegation of decision-making, highlighting the need for clinical leadership to advocate for patients.

The effectiveness of pancreatic enzyme replacement therapy for malabsorption in advanced pancreatic cancer, a pilot study.

Advanced adenocarcinoma of the pancreas has a globally poor prognosis. One of the characteristic features of pancreatic cancer (PC) is pancreatic exocrine insufficiency (PEI). This leads to a malabsorption syndrome and subsequent digestive symptoms. Given the high prevalence of PEI and malabsorption in PC, empiric use of pancreatic enzyme replacement therapy (PERT) is recommended. The aim of this pilot study was to determine the potential efficacy of PERT in improving symptoms and quality of life in those with metastatic PC. The study recruited patients with advanced PC referred to a specialist palliative care service. Following an initial assessment, patients were commenced on pancrealipase 25,000IU (Creon) and reassessed after 1 week and 3 weeks post-initiation of supplementation. These assessments included demographics, malabsorption symptom checklist, and completion of two validated quality-of-life questionnaires, the European Organisation for Research and Treatment of Cancer QLQ-C30 and QLQ-PAN26. PERT was associated with statistically significant improvement of symptoms in both the general (QLQ-C30) and pancreatic cancer specific tool (PAN26). Within 1 week of PERT initiation, there was a reduction in diarrhoea scores (26 vs. 8, p<0.005), pancreatic and hepatic pain (47 vs. 33 and 24 vs. 11, respectively, p<0.05). After 3 weeks, there were significant improvements in pancreatic pain and bloating/gas symptoms (47 vs. 26 and 46 vs. 26, respectively, p< 0.005). PERT appears to have the potential to improve symptoms of malabsorption in patients with metastatic PC.

Evaluating a model of delivering specialist palliative care services in rural New Zealand.

INTRODUCTION Various methods of delivering specialist palliative care to rural areas have been discussed in the literature, but published evaluations of these models are sparse. This study surveyed the stakeholders of a rural specialist palliative care service (SPCS) to help identify potential gaps and inform planning regarding the future vision. METHODS A survey was sent to all relevant stakeholders across the West Coast of New Zealand, including staff in primary care, aged residential care and the hospital. It focused on understanding the local model of palliative care, the quality of the current service and perceived gaps. RESULTS Thirty-three per cent of the surveys were returned, from a cross-section of health-care providers. The medical respondents rated the quality of the service higher than nursing and allied health participants. All of the groups reported feeling the specialist palliative care team (SPCT) was under-resourced. Additional educational opportunities were considered essential. DISCUSSION Stakeholders found the service easy to access, but improvements in communication, educational opportunities and forward planning were identified as being needed. This information helps the West Coast SPCT plan its future direction and develop a higher-quality service that meets the needs of all stakeholders.

Severe COPD and the transition to a palliative approach.

Patients with severe chronic obstructive pulmonary disease (COPD) have a chaotic trajectory towards death. Research has focused on identifying a "transition point" that would allow identification of those patients who may benefit from a palliative approach to their care, or referral to a specialist palliative care service. This article aims to outline difficulties in identifying this transition point, summarise current literature on this topic and suggests a model based on clinical milestones. EDUCATIONAL AIMS: To outline the difficulties associated with identifying patients with severe COPD who are at risk of dying.To summarise current research on this topic. KEY POINTS: A specific transition point is difficult to identify in severe COPD.Tools are available that may assist the physician in identifying those at risk of dying.It is essential that the patient voice is heard, patients can describe specific events that may be used as a "trigger" for a palliative approach.Specialist palliative care services may only be required for a subgroup of patients whose needs cannot be managed by the primary care team.

Pancreatic enzyme replacement therapy (PERT) for malabsorption in patients with metastatic pancreatic cancer.

PURPOSE: The diagnosis of metastatic pancreatic cancer (PC) carries a poor prognosis. PC is associated with weight loss and malabsorption in high rates secondary to pancreatic exocrine insufficiency. UK and USA guidelines exist recommending the empiric use of pancreatic enzyme replacement therapy (PERT) for quality of life in these patients. The aim of this study is to review the use of PERT in patients with metastatic PC referred to a specialist palliative care service. METHODS: Retrospective observational study of patients referred to the service between January 2010 and July 2012 with a diagnosis of PC. Information about PERT use, tumour site and frequency of symptoms was collected. RESULTS: 129 patients were referred, with a higher number in the eighth decade. Only 21% of this study group were prescribed PERT. Over 70% of patients had symptoms that could be attributable to malabsorption, mainly abdominal pain. Other symptoms such as bloating, wind and steatorrhoea were also common. CONCLUSIONS: Guidelines recommending empiric treatment of PERT in patients with metastatic PC are not currently being utilised.

Patient perceptions of severe COPD and transitions towards death: a qualitative study identifying milestones and developing key opportunities.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is a slowly disabling illness, with functional limitations and a high burden of symptoms. Palliative care services focus on quality of life for those facing life-limiting illness. Patients with COPD often see their illness as a 'way of life', not as a life-threatening illness, which makes the interface difficult. AIMS: The aim of this study was to explore the experience of patients with advanced COPD after a life-threatening event, particularly focusing on end-of-life issues. METHODS: Qualitative methods were used to capture patient experiences. Patients admitted for noninvasive ventilation for COPD were recruited and interviewed in their homes following discharge. The interview schedule explored the participants' understanding of their illness, concerns and plans, exploring end-of-life issues and perceptions of palliative care. RESULTS: Participants were recruited until themes were saturated. Six transition points or milestones emerged: loss of recreation, home environment, episodes of acute care, long-term oxygen treatment, panic attacks, and assistance with self-care were common themes throughout the narratives. CONCLUSIONS: Milestones accumulate in no particular order. They can be easily recognised and allow health professionals to develop a common language with their patients. In advancing COPD, milestones may trigger the reassessment of goals of care and integration of a palliative approach.

The use of bedside ultrasound and community-based paracentesis in a palliative care service.

INTRODUCTION: There is little information, particularly in New Zealand, on the use of ultrasound to enhance clinical decision-making in a specialist palliative care service. Technological advances have resulted in increasingly portable, user-friendly ultrasound machines that can be used in the home setting to offer convenient access to this treatment option. AIM: To evaluate the clinical use of portable ultrasonography in the management of abdominal ascites in a community palliative care service. METHODS: Patients referred to the Nurse Maude Hospice and Palliative Care Service requiring assessment for abdominal ascites over 12 months were scanned using a newly purchased handheld ultrasound machine. The patients had a variety of diagnoses; the most common diagnosis was ovarian cancer. RESULTS: Forty-one ultrasound scans performed for 32 patients to assess for ascites drainage were recorded. Fluid was identified in 19 assessments and drainage undertaken in 17. Over half the scans were completed at home, allowing nine procedures to be performed safely and conveniently, which reduced time spent at the local hospital. There were no major complications. DISCUSSION: Ultrasonography is a tool that has not previously been utilised in palliative care locally, but has significant potential patient benefits. This novel use of technology also highlighted potential cost savings to the patient and health system, which may be beneficial to other palliative care services in New Zealand.