Cases of coronavirus disease 2019 (COVID-19) are escalating rapidly across the globe, with the mortality risk being especially high among those with existing illness and multimorbidity. This study ...aimed to synthesize evidence for the role and response of palliative care and hospice teams to viral epidemics/pandemics and inform the COVID-19 pandemic response. We conducted a rapid systematic review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines in five databases. Of 3094 articles identified, 10 were included in this narrative synthesis. Included studies were from West Africa, Taiwan, Hong Kong, Singapore, the U.S., and Italy. All had an observational design. Findings were synthesized using a previously proposed framework according to systems (policies, training and protocols, communication and coordination, and data), staff (deployment, skill mix, and resilience), space (community provision and use of technology), and stuff (medicines and equipment as well as personal protective equipment). We conclude that hospice and palliative services have an essential role in the response to COVID-19 by responding rapidly and flexibly; ensuring protocols for symptom management are available, and training nonspecialists in their use; being involved in triage; considering shifting resources into the community; considering redeploying volunteers to provide psychosocial and bereavement care; facilitating camaraderie among staff and adopting measures to deal with stress; using technology to communicate with patients and carers; and adopting standardized data collection systems to inform operational changes and improve care.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Hospital palliative care is an essential part of the COVID-19 response but data are lacking. We identified symptom burden, management, response to treatment, and outcomes for a case series of 101 ...inpatients with confirmed COVID-19 referred to hospital palliative care. Patients (64 men, median interquartile range {IQR} age 82 72–89 years, Elixhauser Comorbidity Index 6 2–10, Australian-modified Karnofsky Performance Status 20 10–20) were most frequently referred for end-of-life care or symptom control. Median IQR days from hospital admission to referral was 4 1–12 days. Most prevalent symptoms (n) were breathlessness (67), agitation (43), drowsiness (36), pain (23), and delirium (24). Fifty-eight patients were prescribed a subcutaneous infusion. Frequently used medicines (median range dose/24 hours) were opioids (morphine, 10 5–30 mg; fentanyl, 100 100–200 mcg; alfentanil, 500 150–1000 mcg) and midazolam (10 5–20 mg). Infusions were assessed as at least partially effective for 40/58 patients, while 13 patients died before review. Patients spent a median IQR of 2 1–4 days under the palliative care team, who made 3 2–5 contacts across patient, family, and clinicians. At March 30, 2020, 75 patients had died; 13 been discharged back to team, home, or hospice; and 13 continued to receive inpatient palliative care. Palliative care is an essential component to the COVID-19 response, and teams must rapidly adapt with new ways of working. Breathlessness and agitation are common but respond well to opioids and benzodiazepines. Availability of subcutaneous infusion pumps is essential. An international minimum data set for palliative care would accelerate finding answers to new questions as the COVID-19 pandemic develops.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Serious illness is characterised by uncertainty, particularly in older age groups. Uncertainty may be experienced by patients, family carers, and health professionals about a broad variety of issues. ...There are many evidence gaps regarding the experience and management of uncertainty.
We aimed to identify priority research areas concerning uncertainty in serious illness, to ensure that future research better meets the needs of those affected by uncertainty and reduce research inefficiencies.
Rapid prioritisation workshop comprising five focus groups to identify research areas, followed by a ranking exercise to prioritise them. Participants were healthcare professionals caring for those with serious illnesses including geriatrics, palliative care, intensive care; researchers; patient/carer representatives, and policymakers. Descriptive analysis of ranking data and qualitative framework analysis of focus group transcripts was undertaken.
Thirty-four participants took part; 67% female, mean age 47 (range 33-67). The highest priority was communication of uncertainty, ranked first by 15 participants (overall ranking score 1.59/3). Subsequent priorities were: 2) How to cope with uncertainty; 3) healthcare professional education/training; 4) Optimising clinical approaches to uncertainty; and 5) exploring in-depth experiences of uncertainty. Research questions regarding optimal management of uncertainty were given higher priority than questions about experiences of uncertainty and its impact.
These co-produced, clinically-focused research priorities map out key evidence gaps concerning uncertainty in serious illness. Managing uncertainty is the most pressing issue, and researchers should prioritise how to optimally manage uncertainty in order to reduce distress, unlock decision paralysis and improve illness and care experience.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Background:
Population ageing represents a global challenge for future end-of-life care. Given new trends in place of death, it is vital to examine where the rising number of deaths will occur in ...future years and implications for health and social care.
Aim:
To project where people will die from 2015 to 2040 across all care settings in England and Wales.
Design:
Population-based trend analysis and projections using simple linear modelling. Age- and gender-specific proportions of deaths in hospital, care home, home, hospice and ‘other’ were applied to numbers of expected future deaths.
Setting/population:
All deaths (2004–2014) from death registration data and predicted deaths (2015–2040) from official population forecasts in England and Wales.
Results:
Annual deaths are projected to increase from 501,424 in 2014 (38.8% aged 85 years and over) to 635,814 in 2040 (53.6% aged 85 years and over). Between 2004 and 2014, proportions of home and care home deaths increased (18.3%–22.9% and 16.7%– 21.2%) while hospital deaths declined (57.9%–48.1%). If current trends continue, numbers of deaths in care homes and homes will increase by 108.1% and 88.6%, with care home the most common place of death by 2040. If care home capacity does not expand and additional deaths occur in hospital, hospital deaths will start rising by 2023.
Conclusion:
To sustain current trends, end-of-life care provision in care homes and the community needs to double by 2040. An infrastructure across care settings that supports rising annual deaths is urgently needed; otherwise, hospital deaths will increase.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
Breathlessness is common and distressing in advanced illness. It is a challenge to assess, with few effective treatment options. To evaluate new treatments, appropriate outcome measures that reflect ...the concerns of people experiencing breathlessness are needed.
The objective of this study was to systematically review and synthesize the main concerns of people with advanced illness experiencing breathlessness to guide comprehensive clinical assessment and inform future outcome measurement in clinical practice and research.
This is a systematic review following Preferred Reporting Items for Systematic Reviews and Meta-Analyses methodology. MEDLINE (1946–2017), PsycINFO (1806–2017), and EMBASE (1974–2017), as well as key journals, gray literature, reference lists, and citation searches, identified qualitative studies exploring the concerns of people living with breathlessness. Included studies were quality-assessed using the Critical Appraisal Skills Program checklist and analyzed using thematic synthesis.
We included 38 studies with 672 participants. Concerns were identified across six domains of “total” breathlessness: physical, emotional, spiritual, social, control, and context (chronic and episodic breathlessness). Four of these have been previously identified in the concept of “total dyspnea.” Control and context have been newly identified as important, particularly in their influence on coping and help-seeking behavior. The importance of social participation, impact on relationships, and loss of perceived role within social and spiritual domains also emerged as being significant to individuals.
People with advanced illness living with breathlessness have concerns in multiple domains, supporting a concept of “total breathlessness.” This adapted model can help to guide comprehensive clinical assessment and inform future outcome measurement in clinical practice and research.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Breathlessness is a common and persistent symptom for those living with chronic lung conditions and advanced disease 1. It can be distressing for those who experience it, and often results in ...anxiety, physical inactivity and a poorer quality of life 2, 3. Additionally, it impacts significantly on those who are close, including friends and family, and is associated with a considerable care burden 4.
This public experiment – a collaboration between the Cicely Saunders Institute and Science Gallery London – found that listening to audio recordings of breathlessness resulted in a noticeable increase in self-reported breathlessness.
https://bit.ly/3o8py2Q
Objectives
To determine and explore the influences on care preferences of older people with advanced illness and integrate our results into a model to guide practice and research.
Design
Systematic ...review using Medline, Embase, PsychINFO, Web of Science, and OpenGrey databases from inception to February 2017 and reference and citation list searching. Included articles investigated influences on care preference using qualitative or quantitative methodology. Thematic synthesis of qualitative articles and narrative synthesis of quantitative articles were undertaken.
Setting
Hospital and community care settings.
Participants
Older adults with advanced illness, including people with specific illnesses and markers of advanced disease, populations identified as in the last year of life, or individuals receiving palliative care (N = 15,164).
Measurements
The QualSys criteria were used to assess study quality.
Results
Of 12,142 search results, 57 articles were included. Family and care context, illness, and individual factors interact to influence care preferences. Support from and burden on family and loved ones were prominent influences on care preferences. Mechanisms by which preferences are influenced include the process of trading‐off between competing priorities, making choices based on expected outcome, level of engagement, and individual ability to form and express preferences.
Conclusion
Family is particularly important as an influence on care preferences, which are influenced by complex interaction of family, individual, and illness factors. To support preferences, clinicians should consider older people with illnesses and their families together as a unit of care.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK
Managing activities of daily living is important to people with advanced cancer or chronic obstructive pulmonary disease (COPD). Understanding disability in activities of daily living may inform ...service planning.
To identify the prevalence of disability in activities of daily living, associations and change over time, in older people with advanced cancer or COPD.
Secondary analysis of International Access, Rights and Empowerment (IARE) studies in adults aged ≥65 years with advanced disease in the United Kingdom, Ireland, and United States, using cross-sectional (IARE I & II) and longitudinal (IARE II, 3 timepoints over 6 months) data. Measures included disability in activities of daily living (Barthel Index), symptom severity (Palliative Outcome Scale), and assistive device use (self-reported). Logistic regression was used to identify relationships between disability and age, sex, living alone, diagnosis, and symptom burden; visual graphical analysis explores individual disability trajectories.
One hundred fifty-nine participants were included (140 cancer, 19 COPD). Sixty-five percent had difficulty climbing stairs, 48% bathing, 39% dressing, and 36% mobilizing. Increased disability was independently associated with increased symptom burden (odds ratio, 1.08 95% CI:1.02–1.15, P = 0.01) and walking unaided (z = 2.35, P = 0.02), but not with primary diagnosis (z = −0.47, P = 0.64). Disability generally increased over time but with wide interindividual variation.
Disability in activities of daily living in advanced cancer or COPD is common, associated with increased symptom burden, and may be attenuated by use of assistive devices. Individual disability trajectories vary widely, with diverse disability profiles. Services should include rehabilitative interventions, guided by disability in individual activities of daily living.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Background:
Heart failure has high mortality and is linked to substantial burden for patients, carers and health care systems. Patients with chronic heart failure frequently experience recurrent ...hospitalisations peaking at the end of life, but most prefer to avoid hospital. The drivers of hospitalisations are not well understood.
Aim:
We aimed to synthesise the evidence on factors associated with all-cause and heart failure hospitalisations of patients with advanced chronic heart failure.
Design:
Systematic review of studies quantitatively evaluating factors associated with all-cause or heart failure hospitalisations in adult patients with advanced chronic heart failure.
Data sources:
Five electronic databases were searched from inception to September 2020. Additionally, searches for grey literature, citation searching and hand-searching were performed. We assessed the quality of individual studies using the QualSyst tool. Strength of evidence was determined weighing number, quality and consistency of studies. Findings are reported narratively as pooling was not deemed feasible.
Results:
In 54 articles, 68 individual, illness-level, service-level and environmental factors were identified. We found high/moderate strength evidence for specialist palliative or hospice care being associated with reduced risk of all-cause and heart failure hospitalisations, respectively. Based on high strength evidence, we further identified black/non-white ethnicity as a risk factor for all-cause hospitalisations.
Conclusion:
Efforts to integrate hospice and specialist palliative services into care may reduce avoidable hospitalisations in advanced heart failure. Inequalities in end-of-life care in terms of race/ethnicity should be addressed. Further research should investigate the causality of the relationships identified here.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
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