Identifying systems barriers that may prevent bereavement service access to bereaved carers: A report from an Australian specialist palliative care service

Background: Bereavement follow up is an integral element of palliative care. However, little is known about the systems that link bereavement services with bereaved carers. Aim: To map how effectively a specialist palliative care service linked bereavement service to bereaved carers. Methodology: A retrospective medical audit, using process mapping was undertaken within one Australian specialist palliative care service to identify the systems that linked bereavement services to a consecutive cohort of palliative care decedents (n=60) next of kin. Results: Bereavement records were located for 80% of decedents. Nearly all (98%) had a nominated next of kin, with just over half (54%) of those nominated contacted by bereavement services. Incomplete or missing contact details was the main reason (75%) that the bereavement service was unable to contact the decedents’ next of kin. Conclusion: Having access to a designated bereavement service can ensure that bereaved next of kin are contract routinely and in a timely way. However the effectiveness of this type of service is dependent upon the bereavement service having access to all relevant contact information. There are numerous opportunities to refine and strengthen the recording of palliative care next of kin details to optimize follow up

The VOICE Study: Valuing Opinions, Individual Communication and Experience: Building the evidence base for undertaking patient-centred family meetings in palliative care - a mixed methods study

Background: Despite family meetings being widely used to facilitate discussion among patients, families, and clinicians in palliative care, there is limited evidence to support their use. This study aims to assess the acceptability and feasibility of Patient-Centred Family Meetings in specialist inpatient palliative care units for patients, families, and clinicians and determine the suitability and feasibility of validated outcome measures from the patient and family perspectives. Methods: The study is a mixed-methods quasi-experimental design with pre-planned Patient-Centred Family Meetings at the intervention site. The patient will set the meeting agenda a priori allowing an opportunity for their issues to be prioritised and addressed. At the control site, usual care will be maintained which may include a family meeting. Each site will recruit 20 dyads comprising a terminally ill inpatient and their nominated family member. Pre- and post-test administration of the Distress Thermometer, QUAL-EC, QUAL-E, and Patient Health Questionnaire-4 will assess patient and family distress and satisfaction with quality of life. Patient, family, and clinician interviews post-meeting will provide insights into the meeting feasibility and outcome measures. Recruitment percentages and outcome measure completion will also inform feasibility. Descriptive statistics will summarise pre- and post-meeting data generated by the outcome measures. SPSS will analyse the quantitative data. Grounded theory will guide the qualitative data analysis. Discussion: This study will determine whether planned Patient-Centred Family Meetings are feasible and acceptable and assess the suitability and feasibility of the outcome measures. It will inform a future phase III randomised controlled trial. Trial registration: Australian New Zealand Clinical Trials Registry ACTRN12616001083482 on 11 August 201

How do patients With advanced cancer cope with an uncertain disease trajectory? Implications for grief counselling

A growing number of cancer patients are living longer with incurable disease. This paper describes strategies that patients use to cope with the uncertain trajectory of their disease. Twenty-seven patients with a prognosis of 12 months were recruited from the oncology and palliative care service at three metropolitan Sydney hospitals. A semi-structured face-to-face interview was conducted, which was audiotaped and transcribed verbatim. The patients coped with the uncertain trajectory of their disease through avoidance, maintaining a normal life, comparing themselves favourably with others in a similar situation and remaining positive. Participants indicated that they did not wish referral for psychological support. The implications of these findings and the influence of grief counselling are explored

A collateral benefit of research in palliative care

A collateral benefit of being in a research-active clinical unit is that there is evidence that better care is delivered. The most dramatic data to date demonstrate that in cardiology, research- active cardiology departments in community and university hospitals deliver better survival than those units that do not enroll people in clinical trials

Culturally and linguistically diverse palliative care patients\u27 journeys at the end-of-life

Objective: To understand the clinical and psychosocial journey of culturally and linguistically diverse (CALD) palliative care patients. Method: This study was conducted at a subacute hospital with a specialist palliative care unit and a community palliative care service in a metropolitan region of New South Wales, Australia. Medical records of 100 deceased patients from CALD backgrounds over a 12-month period from 2014 to 2015 were recorded on a data mining tool. The cohort had transitioned to either community or inpatient palliative care services with a life-limiting illness. We used descriptive statistical analyses to identify the patients’ end-of-life journeys in the physical, psychological, spiritual, and social palliative care domains. Staff case notes were used to enrich the quantitative data. Result: The most common symptoms burdening the patients were decreased mobility (82%), pain (76%), and poor appetite (60%). The majority of patients (87%) were diagnosed with cancer. Language was a major barrier to the assessment and management of symptoms. The vast majority of patients were born in Europe and Asia. Twenty-nine percent of the patients preferred to use English. However, among patients who required an interpreter on admission, only 9% used professional interpreters. Family distress around patients’ lack of food consumption was prominent, along with provider concern when this led to families “force feeding” patients. Only 5% of files documented patients’, and 21% of files documented families’, cultural wishes or needs. Care of the body after death was only documented in 20% of files. Significance of results: The increasing cohort of older people from CALD backgrounds will have significant implications for the planning and delivery of palliative care services. There is an emerging need to address the physical, psychological, spiritual, and social palliative care domains in the end-of-life journeys of patients from CALD backgrounds to ensure the provision of quality care

Patient reported outcomes of pastoral care in a hospital setting

This study aimed to establish whether Pastoral Care (PC) visits were an effective component of a hospitalized patient’s overall health experience. Outcomes of PC visits were reported by 369 patients in 7 sites across Australia. The patient reported outcomes of PC visits included: the patients felt they could be honest with themselves, with a sense of peace, a better perspective of their illness, less anxiety, and felt more in control. Five factors of the PC visit significantly related to higher patient’s overall outcomes: (a) having more Pastoral Care visits (p \u3c 0.5 0 R 0.778, CI 0.17–1.38); (b) the patient was able to talk about what was on their mind (p \u3c 0.01, OR1.48, CI 0.58–2.37); (c) they had something to be hopeful about (p \u3c 0.01 OR1.18, CI 0.51–1.85); 4); the visit focused on decisions about the patient’s health care (p \u3c 0.05, OR0.70, CI 0.05–1.35); and (d) a belief in God/Higher Being (p \u3c 0.01, OR 1.01, CI 0.43–1.71)

\u27Through the eyes of the dying\u27 - Identifying who may benefit from bereavement follow-up: A qualitative study

Introduction: Bereavement support is an integral element of palliative care. Emerging evidence stipulates that bereavement support should be reserved for those most at risk of poor outcomes. While this evidence makes identifying those at risk of experiencing a complex bereavement a necessary first step, it has been difficult to arrive at a consensus as to whom that should be. Aim: To explore whether palliative care in-patients with advanced disease are concerned about the bereavement needs of others and, if so, is it their next-of-kin. Design: A qualitative study using semi-structured interviews, and thematic analysis using a constant comparative method. Setting/participants: Patients identified by their physicians as being aware of their limited prognosis (n = 19) in a specialist palliative care service in Sydney, Australia. Findings: Three key themes emerged: 1) Families considered close and supportive may not require bereavement follow-up; 2) Families with previous significant losses or who have more complex lives are perceived by patients as having greater risk; and 3) Asking palliative care patients about whom they are most concerned in their network after their death is difficult but possible. Conclusions: There are potentially people in the palliative patients’ networks who may be in need of bereavement support, but who are unlikely to be informed about available bereavement services. New strategies are needed to identify people who may benefit from bereavement support

The effect of self-selected complementary therapies on cancer patients\u27 quality of life and symptom distress: A prospective cohort study in an integrative oncology setting

Objective: To examine the effectiveness of a multifaceted complementary therapies intervention, delivered in a systematic manner within an Australian public hospital setting, on quality of life and symptom distress outcomes for cancer patients. Methods: Adults receiving treatment for any form of cancer were eligible to participate in this study. Self-referred participants were offered a course of six complementary therapy sessions. Measures were administered at baseline, and at the third and sixth visit. The primary outcomes were quality of life and symptom distress. Linear mixed models were used to assess change in the primary outcomes. Results: In total, 1376 cancer patients participated in this study. The linear mixed models demonstrated that there were significant improvements in quality of life and significant reductions in symptom distress over six sessions. Body-based therapies demonstrated significantly superior improvement in quality of life over counselling, but no other differences between therapies were identified. Reduced symptom distress was not significantly associated with any particular type of therapy. Conclusion: A self-selected complementary therapies intervention, provided in an Australian public hospital by accredited therapists, for cancer patients significantly mproved quality of life and reduced symptom distress. The effect of this intervention on quality of life has particular salience, since cancer impacts on many areas of people’s lives and impairs quality of life

Identifying the barriers and enablers to pallative care nurses\u27 recognition and assessment of delirium symptoms: A qualitative study

Context: Delirium is under-recognised by nurses, including those working in palliative care settings where the syndrome occurs frequently. Identifying contextual factors that support and/or hinder palliative care nurses’ delirium recognition and assessment capabilities is crucial, to inform development of clinical practice and systems aimed at improving patients’ delirium outcomes. Objective: To identify nurses’ perceptions of the barriers and enablers to recognising and assessing delirium symptoms in palliative care inpatient settings. Methods: A series of semi-structured interviews, guided by critical incident technique, were conducted with nurses working in Australian palliative care inpatient settings. A hypoactive delirium vignette prompted participants’ recall of delirium and identification of the perceived factors (barriers and enablers) that impacted on their delirium recognition and assessment capabilities. Thematic content analysis was used to analyse the qualitative data. Results: Thirty participants from 9 palliative care services provided insights into the barriers and enablers of delirium recognition and assessment in the inpatient setting, that were categorised as patient and family, health professional and system level factors. Analysis revealed five themes, each reflecting both identified barriers and current and/or potential enablers: i) value in listening to patients and engaging families; ii) assessment is integrated with care delivery; iii) respecting and integrating nurses’ observations; iv) addressing nurses’ delirium knowledge needs and v) integrating delirium recognition and assessment processes. Conclusions: Supporting the development of palliative care nursing delirium recognition and assessment practice requires attending to a range of barriers and enablers at the patient and family, health professional and system levels

The presence and predictors of complicated grief symptoms in perinatally-bereaved mothers from a bereavement support organization

The present study investigated the presence and possible predictors of complicated grief symptoms in perinatally-bereaved mothers (N = 121) up to 5 years post-bereavement. The presence of complicated grief scores in the clinical range was 12.4%, which is higher than in many other bereaved populations, and the presence of other living children may protect against the development of complicated grief symptoms. The majority of the women were able to negotiate a perinatal loss without developing complicated grief; however, there remains an important group of women who up to 5 years later score in the clinical range for complicated grief symptoms