Palliative Medicine

There is a growing demand for community palliative care and home-based deaths worldwide. However, gaps remain in this service provision, particularly after-hours. Paramedicine may help to bridge that gap and avoid unwanted hospital admissions, but a systematic overview of paramedics’ potential role in palliative and end-of-life care is lacking.

To review and synthesise the empirical evidence regarding paramedics delivering palliative and end-of-life care in community-based settings.

A systematic integrative review with a thematic synthesis was undertaken in accordance with Whittemore and Knafl’s methodology. Prospero: CRD4202119851.

MEDLINE, CINAHL, PsycINFO and Scopus databases were searched in August 2020 for primary research articles published in English, with no date limits applied. Articles were screened and reviewed independently by two researchers, and quality appraisal was conducted following the Mixed-Methods Appraisal Tool (2018).

The search retrieved 5985 articles; 23 articles satisfied eligibility criteria, consisting of mixed-methods (n = 5), qualitative (n = 7), quantitative descriptive (n = 8) and quantitative non-randomised studies (n = 3). Through data analysis, three key themes were identified: (1) Broadening the traditional role, (2) Understanding patient wishes and (3) Supporting families.

Paramedics are a highly skilled workforce capable of helping to deliver palliative and end-of-life care to people in their homes and reducing avoidable hospital admissions, particularly for palliative emergencies. Future research should focus on investigating the efficacy of palliative care clinical practice guideline implementation for paramedics, understanding other healthcare professionals’ perspectives, and undertaking health economic evaluations of targeted interventions.

Area-Based Compassionate Communities are community public health interventions which focus on the role of the community in palliative care provision. They apply a set of actions based on the Ottawa Charter for Health Promotion which aims to increase people’s control over their health.

To review and compare Area-Based Compassionate Communities with respect to their contextual characteristics, development processes and evaluations.

A systematic integrative review with narrative synthesis. Registered in Prospero: CRD42020173406.

Five databases (Pubmed, Web of Science, PsycInfo, Embase and Scopus) were consulted, consisting of publications from 1999 onwards. This was supplemented with grey literature and author-provided documentation.

Twenty articles were drawn from the peer reviewed search, three from grey literature and two from author-provided documentation. Notwithstanding the substantial variation in what is reported, all Area-Based Compassionate Community initiatives focus on multiple action areas of the Ottawa Charter for Health Promotion. Variability in their contextual and developmental characteristics is high. Only a minority of initiatives have been evaluated and although conclusions are generally positive, what is evaluated often does not match their aims. Attaining support from policy makers can help in obtaining funding early in the project. Strengthening people’s social networks was a recurring community engagement strategy.

While the concept of Area-Based Compassionate Communities is gaining momentum as a new paradigm for the creation of palliative care capacity across society, only a handful of initiatives have been described. The lack of formal evaluations of their envisaged health benefits indicates a pressing need for rigorous research about ongoing and future initiatives.

Globally, the prison population is growing and ageing, as is the need for palliative care. Yet, little is known about how people in prison perceive palliative care provision in this setting.

To identify the: (i) perceptions of palliative care provision and dying in custody by people in prison; and (ii) perceived barriers and facilitators of person-centred palliative care provision in prison.

A systematic review and meta-synthesis was registered and undertaken in accordance with the reporting guidelines.

Keywords and MeSH headings encompassing (i) palliative care, end-of-life care, death; and (ii) prison; were used to search Pubmed, Medline, CINAHL, PsycINFO, Web of Science, CINCH and ProQuest Central. Articles published in English, from high income countries, and containing qualitative data exploring perceptions of people in prison of palliative care in custody were included. Findings were reporting using the ENTREQ guidelines.

Of the 2193 articles identified, 12 were included. Experiences of people in prison regarding palliative care related to two themes: (1) expectations versus experiences of palliative care; and (2) prison context complicates access to and provision of palliative care. People in prison with palliative care needs want to feel safe, cared for, and acknowledged as they face an expected death. The prison environment can severely restrict access to palliative care, leaving people in prison feeling isolated and powerless.

People in prison expect to receive high-quality palliative care, but their experiences often do not match their expectations. Numerous structural and organisational challenges complicate the provision of palliative care in prisons, limiting accessibility of care.

Advance care planning is important for people with advanced cancer. Family involvement in advance care planning may be instrumental to achieving goal-concordant care since they frequently become surrogate decision-makers.

To examine components, contexts, effects and linkages with intended outcomes of involving family members in advance care planning.

A mixed-methods systematic review, in which quantitative and qualitative data were extracted and synthesised using thematic synthesis leading to a logic model. Prospectively registered on PROSPERO (CRD42020208143).

Primary quantitative and qualitative research regarding family-involved advance care planning for people with advanced cancer were identified using Medline, Embase, PsycINFO and CINAHL from inception to September 2020. Quality appraisal was performed with ‘QualSyst’.

Fourteen articles were included. The synthesis identified perceptions of individuals and family members concerning family involvement in advance care planning and presents components for family-integrated advance care planning intervention. The logic model includes (i) addressing family members’ concerns and emotions and (ii) facilitating communication between individuals and family members which are distinctive when healthcare professionals engage with individuals as well as family members.

This review provides a comprehensive understanding of family involvement in advance care planning and could inform its assessment and implementation in clinical practice. The number of included articles was limited. Therefore future research must focus on family integration and exploration of stakeholders’ perceptions to identify additional components and linkages between them within family-integrated advance care planning.

Unscheduled care is used increasingly during the last year of life by people known to have significant palliative care needs.

To document the frequency and patterns of use of unscheduled healthcare by people in their last year of life and understand the experiences and perspectives of patients, families and professionals about accessing unscheduled care out-of-hours.

A mixed methods, multi-stage study integrating a retrospective cohort analysis of unscheduled healthcare service use in the last year of life for all people dying in Scotland in 2016 with qualitative data from three regions involving service users, bereaved carers and general practitioners.

Three contrasting Scottish Health Board regions and national datasets for the whole of Scotland.

People who died in Scotland in 2016 (n = 56,407) had 472,360 unscheduled contacts with one of five services: telephone advice, primary care, ambulance service, emergency department and emergency hospital admission. These formed 206,841 individual continuous unscheduled care pathways: 65% starting out-of-hours. When accessing healthcare out-of-hours, patients and carers prioritised safety and a timely response. Their choice of which service to contact was informed by perceptions and previous experiences of potential delays and whether the outcome might be hospital admission. Professionals found it difficult to practice palliative care in a crisis unless the patient had previously been identified.

Strengthening unscheduled care in the community, together with patient and public information about how to access these services could prevent hospital admissions of low benefit and enhance community support for people living with advanced illness.

Palliative patients frequently express a desire to die. Health professionals report uncertainty regarding potential risks of addressing it.

We aim to evaluate effects of desire to die-conversations on palliative patients.

Within a prospective mixed-methods cohort study, we trained health professionals in dealing with desire to die. Afterwards, they held conversations about it with patients. Effects on depressiveness, hopelessness, wish to hasten death, death anxiety, patient-health professional-relationship, and will to live were evaluated at baseline (t0), 1 (t1), and 6 weeks afterwards (t2). Results were analyzed descriptively.

From April 2018 to March 2020, 43 health professionals asked 173 patients from all stationary and ambulatory palliative care settings (within 80 km radius) for participation. Complete assessments were obtained from n = 85 (t0), n = 64 (t1), and n = 46 (t2).

At t1, patients scored significantly lower on depressiveness (med = 8, M = 8.1, SD = 5.4) than at t0 (med = 9.5, M = 10.5, SD = 5.8) with Z = −3.220, p = 0.001 and Cohen’s d = 0.42. This was due to medium-severely depressed patients: At t1, their depressiveness scores decreased significantly (med = 9, M = 9.8; SD = 5.1) compared to t0 (med = 14, M = 15.2; SD = 3.9) with Z = −3.730, p ⩽ 0.000 and Cohen’s d = 1.2, but others’ did not. All other outcomes showed positive descriptive trends.

Desire to die-conversations through trained health professionals do not harm palliative patients. Results cautiously suggest temporary improvement.

Cancer not only affects cancer patients’ quality of life but also their family caregivers’. A WeChat-based Dyadic Life Review Program was developed by our research team for people with advanced cancer and their family caregivers to improve their quality of life.

To explore the feasibility and preliminary effects of the WeChat-based Dyadic Life Review Program on people with advanced cancer and their family caregivers.

A feasibility randomized controlled trial was conducted. Both quantitative and qualitative data were collected. A total of 47 advanced cancer patient-family caregiver dyads was recruited. Twenty-six dyads were randomized into the experimental group, and 21 dyads into the control group. The experimental group engaged in the WeChat-based Dyadic Life Review Program twice a week for 4 weeks.

For qualitative results, five themes emerged: (1) accepting and enjoying the program; (2) increasing communication with one another; (3) feeling grateful for each other; (4) providing emotional support to each other; and (5) releasing caregivers’ stress. In terms of quantitative results, quality of life (Z = −4.06, p < 0.001; t = 4.30, p < 0.001), family adaptability(Z = −3.01, p = 0.003; Z = −3.29, p = 0.001), and family cohesion(Z = −4.14, p < 0.001; Z = −3.88, p < 0.001) of people with advanced cancer and family caregivers were improved, and family caregivers’ care burden (t = −2.50, p = .018) was decreased in the experimental group compared with the control group post-test.

The WeChat-based Dyadic Life Review Program is feasible and acceptable for people with advanced cancer and their family caregivers. It has the potential to improve their quality of life, adaptability and cohesion, and reduce family caregivers’ care burden.

Appropriate timing to initiate advance care planning is difficult, especially for individuals with non-malignant disease in community settings.

To identify the optimal moment for, and reasons to initiate advance care planning in different illness trajectories.

A health records survey study; health records were presented to 83 GPs with request to indicate and substantiate what they considered optimal advance care planning timing within the 2 years before death. We used quantitative and qualitative analyses.

We selected and anonymized 90 health records of patients who died with cancer, organ failure or multimorbidity, from a regional primary care registration database in the Netherlands.

The median optimal advance care planning timing according to the GPs was 228 days before death (interquartile range 392). This moment was closer to death for cancer (87.5 days before death, IQR 302) than for organ failure (266 days before death, IQR 401) and multimorbidity (290 days before death, IQR 389) (p < 0.001). The most frequently mentioned reason for cancer was “receiving a diagnosis” (21.5%), for organ failure it was “after a period of illness” (14.7%), and for multimorbidity it was “age” and “patients” expressed wishes or reflections’ (both 12.0%).

The optimal advance care planning timing and reasons to initiate advance care planning indicated by GPs differ between patients with cancer and other illnesses, and they also differ between GPs. This suggests that “the” optimal timing for ACP should be seen as a “window of opportunity” for the different disease trajectories.

Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes.

To explore the communication strategies used in shared decision-making for children with life-limiting conditions.

A longitudinal, qualitative, multiple-case study. Cases were centred around the child and parent/carer(s). Most cases also included professionals or extended family members. Data from interviews, observations and medical notes were re-storied for each case into a narrative case summary. These were subject to comparative thematic analysis using NVivo11.

Eleven cases recruited from three tertiary hospitals in England. 23 participants were interviewed (46 interviews). Cases were followed for up to 12 months between December 2015 and January 2017. 72 observations were conducted and the medical notes of nine children reviewed.

Strategies present during shared decision-making were underpinned by moral work. Professionals presented options they believed were in the child’s best interests, emphasising their preference. Options were often presented in advance of being necessary to prevent harm, therefore professionals permitted delay to treatment. Persuasion was utilised over time when professionals felt the treatment was becoming more urgent and when families felt it would not promote the child’s psychosocial wellbeing.

Communication strategies in shared decision-making are underpinned by moral work. Professionals should be aware of the models of shared decision-making which include such communication strategies. Open discussions regarding individuals’ moral reasoning may assist the process of shared decision-making.

Due to medical advances and an increasingly ageing population, the number of people living with a serious illness is rising. This has major implications for the burden on family members of assisting with care. Support of family caregivers by healthcare professionals is needed to ensure they can provide quality care for people with serious illness.

To investigate how family caregivers of people with serious illness are supported by healthcare professionals in their caregiving tasks.

Population-based cross-sectional survey of bereaved family caregivers of people with serious illness (N = 3000) who cared for a person who had died 2–6 months before the sample was drawn (November 2019), as identified through three sickness funds in Flanders, Belgium. The survey explored support from healthcare professionals for family caregivers 3 months prior to bereavement.

Response rate was 55.0%. Most family caregivers received support from one or more healthcare professionals for family caregiving tasks, ranging from 71% for promoting social interaction to 95% for managing symptoms. The type of support mostly involved providing information. Use of palliative care services was the strongest predictor of such support across physical, psychosocial and practical tasks.

Most family caregivers of those with serious illness get some form of support from healthcare professionals for their tasks. However, an empowering support strategy for example one aimed at increasing self-efficacy of the family caregiver is rare and end-of-life communication between healthcare professionals and family caregivers needs improvement.

Parenteral nutrition is controversial in patients with advanced cancer. Nevertheless, this treatment is common practice near the end of life.

We aimed to identify factors which were associated with the outcome of patients on parenteral nutrition at an academic tertiary palliative care unit.

In this retrospective cohort study patients were assigned to two groups according to parenteral nutrition treatment. Inferential statistics were used to assess whether the dynamics of laboratory variables over 2 weeks of parenteral nutrition were associated with survival.

Patients admitted to the Department of Palliative Medicine at the Medical University of Vienna between 2016 and 2018 were included in this study.

Of 443 patients, 113 patients received parenteral nutrition. Patients had a lower body mass index, lower levels of bilirubin, γ-glutamyltransferase, alkaline phosphatase, and were of younger age compared to patients which did not receive parenteral nutrition. No difference in survival as measured from admission to death was found when comparing the two groups. Levels for γ-glutamyltransferase, alkaline phosphatase, and C-reactive protein significantly increased during 2 weeks of parenteral nutrition. Among patients with parenteral nutrition, an increase in C-reactive protein or white blood cell count levels was associated with lower survival.

Patients who responded with an increase of C-reactive protein or white blood cell count during 2 weeks after reinitiation or start of parenteral nutrition had a worse survival. Our findings might support clinicians and patients in their decision to forgo parenteral nutrition in a palliative care setting.

Caring for family members of dying patients is a vital component of end-of-life care, yet family members’ needs at the end of life may be unmet.

To explore hospital clinician assessment and facilitation of family needs and practices to support families at the end of life.

Descriptive study utilising a retrospective medical record audit.

Undertaken in a large public hospital, the sample included 200 deceased patients from four specialities; general medicine (n = 50), intensive care (n = 50), inpatient palliative care (n = 50) and aged rehabilitation (n = 50). Data were analysed according to age; under 65-years and 65-years or over.

Deceased patients’ mean age was 75-years, 60% were Christian and Next-of-Kin were documented in 96% of cases. 79% spoke English, yet interpreters were used in only 6% of cases. Formal family meetings were held in 64% of cases. An assessment of family needs was undertaken in 52% of cases, and more likely for those under 65-years (p = 0.027). Cultural/religious practices were supported/facilitated in only 6% of all cases. Specialist palliative care involvement was more likely for those aged 65-years or over (p = 0.040) and social work involvement more likely for those under 65-years (p = 0.002). Pastoral care and bereavement support was low across the whole sample.

Prioritising family needs should be core to end-of-life care. Anticipation of death should trigger routine referral to support personnel/services to ensure practice is guided by family needs. More research is needed to evaluate how family needs assessment can inform end-of-life care, supported by policy.

Severe, cancer-related facial oedema can impair vision. It can result from lymphatic and/or venous obstruction due to disease and/or treatment related fibrosis. There is very limited data on the use of directly applied hypertonic packs for the relief of periorbital oedema.

A 63 year old man with recurrent laryngeal squamous cell carcinoma developed functional blindness secondary to periorbital oedema in the setting of severe facial swelling. This was refractory to maximal facial lymphatic massage available in the community setting.

Management dilemmas included what non-medical interventions may relieve his periorbital oedema and thereby restore his vision outside of daily lymphatic massage from a qualified physiotherapist.

The patient agreed to an initial dry hypertonic pack with a great functional improvement of his vision. He was taught how to do this so that he could repeat ad libitum.

The patient had previously expressed that his most distressing thought was the prospect of becoming functionally blind prior to dying. The provision of an easy additional therapy to relieve his visual obstruction provided him with much comfort. He passed away peacefully a few weeks later.

The case demonstrates that application of a dry hypertonic pack can relieve periorbital oedema in the setting of facial oedema in cases which are refractory to the combination of self-massage, cold-compress application, and daily lymphatic massage by a certified physiotherapist.

A case series to define incidence of adverse effects and duration of treatment effectiveness.