Palliative Medicine

Delirium is common in palliative care settings and is distressing for patients, their families and clinicians. To develop effective interventions, we need first to understand current delirium care in this setting.

To understand patient, family, clinicians’ and volunteers’ experience of delirium and its care in palliative care contexts.

Qualitative systematic review and thematic synthesis (PROSPERO 2018 CRD42018102417).

The following databases were searched: CINAHL, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, Embase, MEDLINE and PsycINFO (2000–2020) for qualitative studies exploring experiences of delirium or its care in specialist palliative care services. Study selection and quality appraisal were independently conducted by two reviewers.

A total of 21 papers describing 16 studies were included. In quality appraisal, trustworthiness (rigour of methods used) was assessed as high (n = 5), medium (n = 8) or low (n = 3). Three major themes were identified: interpretations of delirium and their influence on care; clinicians’ responses to the suffering of patients with delirium and the roles of the family in delirium care. Nursing staff and other clinicians had limited understanding of delirium as a medical condition with potentially modifiable causes. Practice focused on alleviating patient suffering through person-centred approaches, which could be challenging with delirious patients, and medication use. Treatment decisions were also influenced by the distress of family and clinicians and resource limitations. Family played vital roles in delirium care.

Increased understanding of non-pharmacological approaches to delirium prevention and management, as well as support for clinicians and families, are important to enable patients’ multi-dimensional needs to be met.

Gamification has been adopted in the health care field for broaching sensitive topics and increasing motivation for behavior changes. Games developed to stimulate discussion surrounding end-of-life issues, and thereby promoting advance care planning also emerged.

The aim is to integrate the quantitative evidence and qualitative evidence to understand the effectiveness of and experience with games for advance care planning.

A mixed-methods systematic review and meta-analysis (PROSPERO ID: CRD42020163312) was undertaken. Joanna Briggs Institute Critical Appraisal tools were used for quality appraisal. Data were synthesized and pooled for meta-analysis or meta-aggregation when appropriate.

We searched MEDLINE, CINAHL, EMBASE, PsycINFO, Cochrane Library, WanFang, China Knowledge Resource Integrated Database, and Chinese Biomedical Literature Database from the inception of the databases for qualitative, quantitative, and mixed-method studies.

Eleven articles of ten studies were included, six of which were feasibility studies. The quality of the quantitative component of most included studies (7/8) was rated as low, and the qualitative component of most included studies (7/8) was rated as moderate. The meta-analysis showed that games for advance care planning are effective to increase self-efficacy, readiness, knowledge, and process of advance care planning behaviors. The meta-aggregation showed that games for advance care planning are highly acceptable and the participants perceived the game experience as fun and enjoyable.

Advance care planning games seem to be a promising intervention for increasing the uptake of advance care planning behaviors. Well-designed randomized controlled trials evaluating the effectiveness of games for advance care planning are needed in the future.

Symptom management is a critical aspect of comprehensive palliative care for people with advanced cancer. Web and mobile-based applications are promising e-Health modalities that can facilitate timely access to symptom management interventions for this population

To evaluate the efficacy of web and mobile-based symptom management interventions in alleviating physical symptom burden in people with advanced cancer.

A systematic review and meta-analysis was conducted. PROSPERO ID = CRD42020155295.

We searched databases including PubMed, PsycINFO, and CINAHL from 1991 until 2019. Inclusion criteria were: adults with advanced cancer, web or mobile-based interventions targeting symptom management, and report of physical symptom data. Risk of bias was assessed using the ROBINS-I and RoB2. Using RevMan, standardized mean difference (SMD) and 95% confidence intervals were calculated. Heterogeneity was assessed using the I² statistic. An assessment of interventions was conducted by evaluating the delivery mode, duration, and evaluation of application feature and theoretical elements.

A total of 19 studies are included in the systematic review and 18 in the meta-analysis. Majority of the studies were deemed to have high risk of bias. Most of the interventions used a web-application for delivering their education (n = 17). While the interventions varied regarding duration and content, they were mainly guided by a symptom management theory. Web and mobile-based interventions significantly improved the overall physical symptom burden (SMD = −0.18; 95% CI = −0.28 to −0.09; I² = 0%; p = 0.0002).

Web and mobile-based intervention are efficacious in decreasing the overall physical symptom burden in people with advanced cancer.

People with mesothelioma and their families have palliative care needs throughout the relatively short trajectory of their illness.

To describe the palliative care needs and experiences of people with mesothelioma and their family carers.

Integrative systematic review with narrative synthesis (PROSPERO: CRD42020190115).

MEDLINE, CINAHL, PsycINFO and the Cochrane Library were searched for articles published between 01 January 2000 and 10 May 2020. Articles were included if they presented empirical studies or comprehensive reviews including information about the palliative care needs and experiences of people with mesothelioma and their family carers.

The search yielded 508 articles, 14 were included in the analysis. A cross cutting theme of ‘uncertainty’ was identified encompassing five themes: (1) organisation and co-ordination of services, (2) communication and information needs, (3) management of care needs and high symptom burden, (4) consideration of the impact of seeking compensation and (5) family carer needs. Our findings demonstrate that people with mesothelioma want a co-ordinated, team-based approach to palliative care with a named point of contact. Whilst carers value and benefit from early referral to specialist palliative care, this does not necessarily reflect the outcomes and views of patients.

The evidence base around the palliative care needs and experiences of people with mesothelioma and their carers needs to be strengthened. The results of this review support the need to develop a greater understanding about the role non-specialist palliative care clinicians’ play in providing generalist palliative care for people with mesothelioma and their carers.

Clarity on what constitutes a palliative care need is essential to ensure that health systems and clinical services deliver an appropriate response within Universal Health Coverage.

To synthesise primary evidence from Africa for palliative care needs among patients and families with serious illness.

We conducted a mixed methods systematic review with sequential synthesis design. The protocol was registered with PROSPERO (CRD42019136606) and included studies were quality assessed using Mixed Method Appraisal Tool.

Six global literature databases and Three Africa-specific databases were searched up to October 2020 for terms related to palliative care, serious illnesses and Africa. Palliative care need was defined as multidimensional problems, symptoms, distress and concerns which can benefit from palliative care.

Of 7810 papers screened, 159 papers met eligibility criteria. Palliative care needs were mostly described amongst patients with HIV/AIDS (n = 99 studies) or cancer (n = 59), from East (n = 72) and Southern (n = 89) Africa. Context-specific palliative care needs included managing pregnancy and breastfeeding, preventing infection transmission (physical); health literacy needs, worry about medical bills (psychological); isolation and stigma, overwhelmed families needing a break, struggling to pay children’s school fees and selling assets (social and practical needs); and rites associated with cultural and religious beliefs (spiritual).

Palliative care assessment and care must reflect the context-driven specific needs of patients and families in Africa, in line with the novel framework. Health literacy is a crucial need in this context that must be met to ensure that the benefits of palliative care can be achieved at the patient-level.

Patients express a variety of needs, some of which are labeled social and spiritual. Without an in-depth exploration of patients’ expressions of these needs, it is difficult to differentiate between them and allocate appropriate healthcare interventions.

To gain insight into the social and spiritual needs of patients with a life-limiting illness and the distinction between these needs, as found in the research literature.

A mixed-methods systematic review and meta-aggregation were conducted following the Joanna Briggs Institute (JBI) approach to qualitative synthesis and the PALETTE framework and were reported according to the PRISMA statement. This review was registered in PROSPERO (CRD42019133571).

The search was conducted in PubMed, EMBASE, CINAHL, Scopus, and PsycInfo. Eligible studies reported social and spiritual needs from the patients’ perspective and were published between January 1st 2008 and October 2020. The quality of evidence was assessed using JBI Critical Appraisal Tools.

Thirty-four studies (19 qualitative, 1 mixed-methods, and 14 quantitative) were included. The five synthesized findings encompassing social and spiritual needs were: being autonomous, being connected, finding and having meaning, having a positive outlook, and dealing with dying and death.

What literature labels as social and spiritual needs shows great similarities and overlap. Instead of distinguishing social from spiritual needs based on patients’ linguistic expressions, needs should always be explored in-depth. We propose a socio-spiritual approach that honors and preserves the multidimensionality of patients’ needs and enables interdisciplinary teamwork to allocate patient-tailored care.

COVID-19 has tragically resulted in over 2.5 million deaths globally. Despite this, there is a lack of research on how to care for patients dying of COVID-19, specifically pharmacological management of symptoms.

The aim was to determine the dose ranges of pharmacological interventions commonly used to manage symptoms in adult patients dying of COVID-19, establish how effectiveness of these interventions was measured, and whether the pharmacological interventions were effective.

This was a rapid systematic review with narrative synthesis of evidence, prospectively registered on PROSPERO (ID: CRD42020210892).

We searched MEDLINE, EMBASE, CINAHL via the NICE Evidence Health Databases Advanced Search interface; medRxiv; the Cochrane COVID-19 Study Register; and Google Scholar with no date limits. We included primary studies which documented care of patients dying of COVID-19 under the care of a specialist palliative care team.

Seven studies, documenting the care of 493 patients met the inclusion criteria. Approximately two thirds of patients required a continuous subcutaneous infusion with median doses of 15 mg morphine and 10 mg midazolam in the last 24 h of life. Four studies described effectiveness by retrospective review of documentation. One study detailed the effectiveness of individual medications.

A higher proportion of patients required continuous subcutaneous infusion than is typically encountered in palliative care. Doses of medications required to manage symptoms were generally modest. There was no evidence of a standardised yet holistic approach to measure effectiveness of these medications and this needs to be urgently addressed.

International oncology societies recommend early palliative care. Specific models to integrate early palliative care efficiently into clinical practice are debated. The authors designed a study to look at the quantitative and qualitative outcomes of an early palliative care intervention in oncological care to decrease stress and improve quality of life.

To compare a single structured early palliative care intervention added to a usual oncology care in terms of distress and health-related quality of life at baseline compared to 6 months after enrollment.

This multicenter randomized controlled trial (NCT01983956) enrolled adult patients with advanced cancer. Participants were either randomly assigned to usual oncology care alone or usual care plus a structured early palliative care intervention.

One hundred fifty adult patients with a variety of advanced cancer diagnoses were randomized. Seventy-four participants were in the intervention and 76 participants in the control group. The primary outcome was the change in patient distress assessed by the National Comprehensive Cancer Network distress thermometer at 6 months. Health-related quality of life, the secondary outcome, was assessed by the Functional Assessment of Cancer Therapy–General Questionnaire.

The results showed no significant effect of the early palliative care intervention neither on patient distress nor on health-related quality of life.

The addition of an early intervention to usual care for patients with advanced cancer did not improve distress or quality of life. Thus, patients may need more intensive early palliative care with continuous professional support to identify and address their palliative needs early.

Oral morphine is frequently used for breakthrough pain but the oral route is not always available and absorption is slow. Transmucosal diamorphine is administered by buccal, sublingual or intranasal routes, and rapidly absorbed.

To explore the perspectives of healthcare professionals in the UK caring for children with life-limiting conditions concerning the assessment and management of breakthrough pain; prescribing and administration of transmucosal diamorphine compared with oral morphine; and the feasibility of a comparative clinical trial.

Three focus groups, analysed using a Framework approach. Doctors, nurses and pharmacists (n = 28), caring for children with life-limiting illnesses receiving palliative care, participated.

Oral morphine is frequently used for breakthrough pain across all settings; with transmucosal diamorphine largely limited to use in hospices or given by community nurses, predominantly buccally. Perceived advantages of oral morphine included confidence in its use with no requirement for specific training; disadvantages included tolerability issues, slow onset, unpredictable response and unsuitability for patients with gastrointestinal failure. Perceived advantages of transmucosal diamorphine were quick onset and easy administration; barriers included lack of licensed preparations and prescribing guidance with fears over accountability of prescribers, and potential issues with availability, preparation and palatability. Factors potentially affecting recruitment to a trial were patient suitability and onerousness for families, trial design and logistics, staff time and clinician engagement.

There were perceived advantages to transmucosal diamorphine, but there is a need for access to a safe preparation. A clinical trial would be feasible provided barriers were overcome.

Awareness for the importance of psychological and spiritual needs in patients with terminal diseases has increased in recent years, but randomized trials on the effects of psychosocial interventions are still rare.

To investigate the efficacy of the “Song of Life” music therapy intervention regarding the emotional and psycho-spiritual dimensions of quality of life.

Patients were randomly assigned to either “Song of Life” or a relaxation intervention. “Song of Life” is a novel three-session music therapy intervention working with a biographically meaningful song. Primary outcome was the improvement in psychological quality of life. Secondary outcomes included spiritual well-being, ego-integrity, momentary distress, and global quality of life and the explorative assessment of treatment satisfaction (patient and family member version). Intention-to-treat analysis was conducted including adjustment for multiple testing in secondary outcomes.

Between December 2018 and August 2020, 104 patients receiving specialized palliative care were recruited from two palliative care wards.

No significant differences were found regarding psychological and global quality of life, but “Song of Life” participants reported significantly higher spiritual well-being (p = 0.04) and ego-integrity (p < 0.01), as well as lower distress (p = 0.05) than patients in the control group. Both patients’ and family members’ treatment satisfaction was higher after “Song of Life” with large between-group effect sizes on items asking for meaningfulness (d = 0.96) and importance (d = 1.00).

Our findings provide evidence that “Song of Life” is an effective and meaningful biographical music therapy intervention to facilitate psycho-spiritual integration in terminally ill patients.

German Clinical Trials Register (DRKS)—DRKS00015308 (date of registration: September 7th 2018).

The population of frail elders is growing, and due to their vulnerability to sudden deterioration, advance care planning is particularly important. However, advance care planning is uncommon for multiple reasons, some of which are linked to the perceptions of frail elders and their families.

To explore the barriers and enablers to advance care planning engagement with frail elders.

Qualitative in-depth interviews with thematic analysis.

Purposive sample of 10 frail elders and 8 nominated family members using a community-based older persons’ service run by a large urban UK hospice. Frail elders had capacity, were ⩾65 (median 85, range 71–95), scored 6 or 7 (median 6.5) on the Clinical Frailty Scale, and 70% were female.

Key barriers were: Advance care planning is unclear, in terms of meaning and the language used; Lack of relevance, with frail elders preferring to focus on living well now; and the Importance of family, relationships and home, and the influence of relationship on end of life decision-making. Engagement strategies included preparing the frail elder for advance care planning conversations and using a gentle, honest, individualised approach.

Essential enablers for frail elders are understanding what advance care planning is and why it may be relevant to them. For professionals, enablers include recognising the importance of living well now and relational decision-making. To further support advance care planning, recommendations include early engagement and re-conceptualising advance care planning as an ongoing process which encompasses current and future care. Further research is needed in different cultures and care contexts.

Advance care planning improves the quality of end-of-life care for older persons in residential aged care; however, its uptake is low. Case conferencing facilitates advance care planning.

To explore the experience of participating in advance care planning discussions facilitated through multidisciplinary case conferences from the perspectives of families, staff and health professionals.

A qualitative study (February–July 2019) using semi-structured interviews.

Two residential aged care facilities in one Australian rural town.

Fifteen informants [family (n = 4), staff (n = 5), health professionals (n = 6)] who had participated in advance care planning discussions facilitated through multidisciplinary case conferences.

Advance care planning was like navigating an emotional landscape while facing the looming loss of a loved one. This emotional burden was exacerbated for substitute decision-makers, but made easier if the resident had capacity to be involved or had previously made their wishes clearly known. The ‘conversation’ was not a simple task, and required preparation time. Multidisciplinary case conferences facilitated informed decision-making and shared responsibility. Opportunity to consider all care options provided families with clarity, control and a sense of comfort. This enabled multiple stakeholders to bond and connect around the resident.

While advance care planning is an important element of high quality care it involves significant emotional labour and burden for families, care staff and health professionals. It is not a simple administrative task to be completed, but a process that requires time and space for reflection and consensus-building to support well-considered decisions. Multidisciplinary case conferences support this process.

Comparative effectiveness of different types of palliative homecare is sparsely researched internationally—despite its potential to inform necessary decisions in palliative care infrastructure development. In Germany, specialized palliative homecare delivered by multi-professional teams has increased in recent years and factors beyond medical need seem to drive its involvement and affect the application of primary palliative care, delivered by general practitioners who are supported by nursing services.

To compare effectiveness of primary palliative care and specialized palliative homecare in reducing potentially aggressive interventions at the end-of-life in cancer and non-cancer.

Retrospective population-based study with claims data from 95,962 deceased adults in Germany in 2016 using multivariable regression analyses.

Patients having received primary palliative care or specialized palliative homecare (alone or in addition to primary palliative care), for at least 14 days before death, differentiating between cancer and non-cancer patients.

Rates of potentially aggressive interventions in most indicators were higher in primary palliative care than in specialized palliative homecare (p < 0.01), in both cancer and non-cancer patients: death in hospital (odds ratio (OR) 4.541), hospital care (OR 2.720), intensive care treatment (OR 6.749), chemotherapy (OR 2.173), and application of a percutaneous endoscopic gastrostomy (OR 4.476), but not for parenteral nutrition (OR 0.477).

Specialized palliative homecare is more strongly associated with reduction of potentially aggressive interventions than primary palliative care in the last days of life. Future research should identify elements of specialized palliative homecare applicable for more effective primary palliative care, too. German Clinical Trials Register (DRKS00014730).

Increasing involvement of palliative care generalists may improve access to palliative care. It is unknown, however, if their involvement with and without palliative care specialists are associated with different outcomes.

To describe physician-based models of palliative care and their association with healthcare utilization outcomes including: emergency department visits, acute hospitalizations and intensive care unit (ICU) admissions in last 30 days of life; and, place of death.

Population-based retrospective cohort study using linked health administrative data. We used descriptive statistics to compare outcomes across three models (generalist-only palliative care; consultation palliative care, comprising of both generalist and specialist care; and specialist-only palliative care) and conducted a logistic regression for community death.

All adults aged 18–105 who died in Ontario, Canada between April 1, 2012 and March 31, 2017.

Of the 231,047 decedents who received palliative services, 40.3% received generalist, 32.3% consultation and 27.4% specialist palliative care. Across models, we noted minimal to modest variation for decedents with at least one emergency department visit (50%–59%), acute hospitalization (64%–69%) or ICU admission (7%–17%), as well as community death (36%–40%). In our adjusted analysis, receipt of a physician home visit was a stronger predictor for increased likelihood of community death (odds ratio 9.6, 95% confidence interval 9.4–9.8) than palliative care model (generalist vs consultation palliative care 2.0, 1.9–2.0).

The generalist palliative care model achieved similar healthcare utilization outcomes as consultation and specialist models. Including a physician home visit component in each model may promote community death.

Delivery of community-based end-of-life care for patients and family members has been recognized as an important public health care approach. Despite differences in different healthcare settings and the significance of a person-centered approach, little research has investigated facilitators of community-based end-of-life care from the perspective of service recipients. In particular, there has been limited exploration of strategies to ensure positive outcomes at an operational level.

To explore factors facilitating positive end-of-life care provision in community-based settings and how these are achieved in practice, from the perspectives of patients and family caregivers.

A qualitative cross-sectional descriptive study was undertaken through semi-structured interviews with patients and family caregivers subjected to thematic analysis.

Ten patients and 16 family caregivers were recruited from an end-of-life community care program provided by four non-governmental organizations in Hong Kong.

Seven core themes were identified: positive emotions about the relationship, positive appraisals of the relationship, care through inquiring about recipients’ circumstances, instrumentality of care (i.e. information, coaching on care, practical help, psychological support, multiple activities), comprehensiveness of care (i.e. diversity, post-death care, family-level wellbeing), structure of care (i.e. timely follow-up, well-developed system), and qualities of workers.

Improvement in service quality might be achieved through alternating the perceptions or emotional reactions of care recipients toward care providers and increased use of sensitive inquiry. Comprehensive care and positive outcomes might be facilitated by addressing the dualities of care by providing diverse choices in pre-death and post-death care.

To date, little is known about the characteristics of patients who are admitted to a palliative care bed for end-of-life care. Previous data suggest that there are disparities in access to palliative care services based on age, sex, diagnosis, and socioeconomic status, but it is unclear whether these differences impact access to a palliative care bed.

To better identify patient factors associated with the likelihood/rate of admission to a palliative care bed.

A retrospective chart review of all initiated palliative care bed applications through an electronic referral program was conducted over a 24-month period.

Patients who apply and are admitted to a palliative care bed in a Canadian metropolitan city.

A total of 2743 patients made a total of 5202 bed applications to 9 hospice/palliative care units in 2015–2016. Referred and admitted cancer patients were younger, male, and more functional than compared to non-cancer patients (all p < 0.001). Referred and admitted patients without cancer were more advanced in their illness trajectory, with an anticipated prognosis <1 month and Palliative Performance Status of 10%–20% (all p < 0.001). On multivariate analysis, a diagnosis of cancer and a prognosis of <3 months were associated with increased likelihood and/or rate of admission to a bed, whereas the presence of care needs, a longer prognosis and a PPS of 30%–40% were associated with decreased rates and/or likelihood of admission.

Patients without cancer have reduced access to palliative care facilities at end-of-life compared to patients with cancer; at the time of their application and admission, they are “sicker” with very low performance status and poorer prognoses. Further studies investigating disease-specific clinical variables and support requirements may provide more insights into these observed disparities.

People residing in UK homeless hostels experience extremely high rates of multi-morbidity, frailty and age-related conditions at a young age. However, they seldom receive palliative care with the burden of support falling to hostel staff.

To evaluate a model embedding palliative specialists, trained as ‘homelessness champions’, into hostels for two half-days a month to provide support to staff and residents and facilitate a multidisciplinary approach to care.

An exploratory qualitative design.

Four homeless hostels in London, UK, including nine hostel managers/support staff and seven palliative care specialists (five nurses and two social workers).

Benefits to introducing the model included: developing partnership working between hostel staff and palliative care specialists, developing a holistic palliative ethos within the hostels and improving how hostel staff seek support and connect with local external services. Challenges to implementation included limited time and resources, and barriers related to primary care.

This is the first evaluation of embedding palliative care specialists within homeless hostels. Inequity in health and social care access was highlighted with evidence of benefit of this additional support for both hostel staff and residents. Considering COVID-19, future research should explore remote ways of working including providing in-reach support to homelessness services from a range of services and organisations.