How can patients with COVID-19 and their family or unpaid carers be enabled and supported to manage palliative care treatment safely and effectively at home?
November 24, 2020
Rachel France, Jitka Vseteckova, Susie Lapwood, Nia Roberts, Nicholas Jones and Kate Flemming
On behalf of the Oxford COVID-19 Evidence Service Team
Centre for Evidence-Based Medicine, Nuffield Department of Primary Care Health Sciences
University of Oxford
Correspondence to email@example.com
Health Sciences Division, University of York
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- Healthcare systems have had to adapt rapidly to respond to the COVID-19 pandemic. As a result, some family and unpaid carers may take on additional responsibilities in providing palliative care treatment for patients who have opted to die at home. However, carers may feel unsure about their role in providing end-of-life care and where to turn for support and treatment for their relative.
- We found no empirical research that has been conducted during the current COVID-19 pandemic to inform how to support carers of people receiving palliative care at home or to clarify whether this approach is safe for all involved.
- Research assessing the needs of home carers in other palliative care contexts suggests carers may be enabled to manage medication at home, provided that appropriate support and education is given, and that carers have the required capabilities.
- The use of digital technology can help, but healthcare professionals should be aware that not all carers have access to suitable equipment.
- Providing education for carers, relevant to their caring role, as well as supporting their general wellbeing, can be of benefit. However, providing formal, structured interventions presents considerable challenges during the pandemic.
By late September 2020 there had been close to one million deaths globally directly attributed to COVID-19, including around 42,000 deaths in the United Kingdom (UK). In addition to these direct deaths, there have also been a significant number of excess deaths during the past six months that are likely to be indirectly related to the COVID-19 pandemic. Whilst many patients will receive end-of-life care in hospital some people, following conversations with their healthcare professionals, prefer to be cared for at home. This may be the case if an individual’s chances of surviving COVID-19 are slim or where, having considered the benefits and burdens of more intensive disease-directed treatment (with or without hospital admission), there is a decision to prioritise treatment and care at home. Prior to the pandemic, approximately a quarter of deaths in England occurred at home (based on data for 2017 which are the latest available), although the proportion of deaths in the community compared with hospital deaths has increased in recent years (based on Gov.UK 2018 figures). A report from the King’s Fund published on the 19th August 2020 states there have been 23,500 excess deaths at home in 2020 compared to the 2015-2019 average and 26,500 excess deaths in care homes. During the COVID-19 pandemic therefore, many people will have died at home supported by their family or unpaid carers as well as by community healthcare services.
When community services work well, they are able to support individuals dying at home by providing responsive care, and also preventing unwanted or unnecessary hospital admissions.
The COVID-19 pandemic has had a profound effect on the delivery of healthcare including end-of-life treatment, both from primary and palliative care services. In-person care from health professionals has been reduced due to increased demand and the infectious nature of COVID-19. All this means that informal carers are likely to be taking on more care-related tasks. However, there has also been a welcome shift of some resources into the community, along with new recommendations for training non-specialists in using modified protocols to deliver palliative care treatment, and increased use of digital technology to facilitate remote consultations with both patients and their carers.
One challenge to delivering end-of-life care at home is that the trajectory of COVID-19 remains uncertain: some people can unexpectedly improve, whilst others may deteriorate with little warning. Of 186 patients with COVID-19 who were referred for palliative care over a four-week period in one health board in Scotland, 150 died but 30 were discharged as stable either to home or to a ward (the remaining people being discharged for ongoing end-of-life or palliative care) (Hetherington et al., 2020). This study also highlighted differences between patients with COVID-19 and those with other conditions, which has implications for care. Notably, patients with COVID-19 spent less time receiving palliative care before dying than patients referred for palliative care in the previous year (median duration of care two days versus five days), indicating that the typical disease trajectory of COVID-19 is faster than for other conditions requiring palliative care.
With regard to symptoms at the end of life, Hetherington et al. (2020) reported that those most commonly experienced by patients with COVID-19 were dyspnoea (69% of patients) and agitation (48%). This finding was supported by an audit of 62 people who died with COVID-19 in a hospital in England and had an end-of-life care plan (Alderman et al., 2020). Of these, 57% experienced dyspnoea and 57.5% agitation or delirium. Both studies reported that symptoms could be controlled using existing medication protocols. Preparing people with COVID-19 and their family members or unpaid carers to anticipate and treat these symptoms is likely to be important for end-of-life care at home.
A systematic review of qualitative research into carer perceptions of their educational needs when providing end-of-life care reported that effective support for carers can help to enable them in their caring role (Flemming et al., 2019). Facilitating factors included the provision of timely information (for example, on how to manage symptoms, likely disease trajectory and on the dying process) and easy access to healthcare professionals for additional advice and support. Although this review drew on experiences of end-of-life care before the pandemic, the findings are likely to be broadly relevant to carers of people with COVID-19.
These findings highlight the need for prompt, responsive and anticipatory support for carers at home who may be feeling unsure about their role in providing end-of-life care and where to turn to for support and treatment for their relative. Dealing with symptoms such as shortness of breath can be distressing for both the patient and those around them. This adds to carer burden which is already likely to be substantial due to anxieties about catching and transmitting COVID-19 themselves as well as having to cope with the uncertainties of a pandemic. When carers are unable to manage, emergency admission to hospital is the likely outcome, with its attendant potential for stress and unpleasantness (Gott et al., 2013).
We therefore undertook this review to determine how people with COVID-19 and unpaid carers could be enabled and supported by healthcare professionals to manage palliative care treatment safely and effectively at home.
The focus of the review was formulated using the PerSPEcTIF format (Booth et al., 2019), which is particularly appropriate for qualitative evidence synthesis of complex interventions:
Perspective: People with COVID-19 and their carers
Setting: People who are living at home independently or being cared for at home by family members, informal carers or lay people during illness
Phenomenon of interest / problem: Support for caring from health professionals/professional services. May include ‘education’ regarding caring: modelling, enhancing ‘watching’ skills, and telephone instruction in an emergency
Environment: Provision of ‘support to care’ by health professionals including, lay management of symptoms, the quality of professional relationships and communication, timeliness of support, educational interventions, access to help and information for patients and carers- including out of hours. All within the environment of lockdown restrictions and an infectious disease.
Comparison: Admission to in-patient care
Time / timing: During the palliative phase of illness
Findings: Either qualitative or quantitative, reporting carers’ experiences of caring, outcomes of health professional educational/support interventions, death in preferred place of care, satisfaction with care experience, management of symptoms, advance care planning
A focused search was conducted on PubMed, LitCOVID, MedRxiv, CINAHL (EBSCOHost), Social Care Online, Google and GoogleScholar up to 10th August 2020. Search terms were based around the Perspective (COVID-19), Setting (home care by family members) and Timing (palliative phase) concepts from the PerSPEcTIF question framework and formulated by an experienced information specialist [NR]. An additional search was conducted on PubMed for systematic reviews of home care during the palliative phase without restricting to COVID-19. The initial searches found 699 papers. One author [NR] excluded duplicates and papers clearly outside the scope of the review leaving 100 papers. A second reviewer [RF] checked the abstracts (or full text where the abstract was unavailable) for inclusion. Since there were no papers reporting empirical evidence from studies with people with COVID-19 or their carers, articles were included reporting research in other conditions with findings potentially relevant to our research question, as well as articles making recommendations for the care of people with COVID-19 at home based on existing guidance and/or expert opinion. The resulting list of papers was checked by all remaining authors to agree on the final articles included in the review. Since breathlessness is a common and distressing COVID-19 symptom and our searches did not find evidence specifically addressing its management, we asked researchers we knew had researched in this area for advice on relevant evidence and guidance. One additional systematic review was included in this manner (Maddocks et al., 2019).
We found no empirical research evidence from studies on supporting carers of people with COVID-19 treated at home. However, we did find evidence that was relevant to our broad research question of palliative care in the home setting from studies involving carers of people with palliative care needs due to other conditions. This was from high quality systematic reviews (that is, reviews undertaken following structured protocols for all stages of the review process including searching for articles and extracting and analysing data), although in some cases, the evidence in the original studies was judged by the review authors to be of low quality. This was not formally re-assessed. We also found general guidance produced for carers in the context of the COVID-19 pandemic. Therefore, while acknowledging this is an evidence review, given the lack of directly relevant evidence, we have included evidence from research in other conditions and the COVID-19 guidance, in order to provide a comprehensive resource.
We present our findings in two overarching sections as follows:
Evidence from studies involving palliative care for people with conditions other than COVID-19 on:
- Supporting carers to manage medication at the end of life
- Using digital technology to support carers
- Providing education interventions for carers
- Supporting carer wellbeing.
Guidance produced in the context of COVID-19:
- For carers
- For healthcare professionals supporting carers.
Evidence from studies involving palliative care for people with conditions other than COVID-19
Supporting carers to manage medication at the end of life
One important role for carers supporting a patient with COVID-19 who is at home and at the end of life concerns the administration of medication. Many carers may be familiar with supporting their family member in taking routine oral medication. However, carers are less likely to be familiar with managing palliative medications, including opioid medication and sedatives such as midazolam. In the context of COVID-19, there may be additional considerations that are normally the province of healthcare professionals. These can include new routes of administration and the issue of decision-making – potentially in a rapidly changing situation – about timing, route and dosage of medication.
Bowers et al.’s (2020) editorial considers existing evidence in the light of peculiarities of COVID-19 to make suggestions for how family carers can be supported to administer drugs safely, including route of administration, anticipatory medication, and issues around drug stocks if prescribing anticipatory medication.
A systematic review of qualitative studies by Wilson et al (2018), undertaken before the COVID-19 pandemic, addresses the issues in more detail. It reports on fifteen studies focusing on the views of carers with experience of providing palliative care at home focusing mainly on the management of pain. In line with their approach which aimed to interpret the data rather than aggregate it, the authors did not formally appraise study quality. The following key themes were identified: administration, organisational skills, empowerment, relationships and support. The findings are summarised here.
Administration: Carers expressed concerns about the frequency and timing of subcutaneous medications, which they felt risked both ‘over-medicating’ (e.g. concerns about opioids hastening death and a fear of not wanting to administer medication that resulted in death) and ‘under-medicating’ (e.g. not adequately relieving symptoms). Some carers expressed concern around lacking adequate knowledge of pharmacology and the medications they were responsible for, particularly in situations where multiple medications were involved. This includes differences in generic and brand names, time to drug onset and peak effect, and potential risks, including the risk of ‘double dosing’. Some reported further potential barriers to administering drugs, such as carer ‘fatigue, low literacy, limited English proficiency, and physical infirmities, such as poor eyesight, arthritis, reduced mobility and strength’ (p.969).
Organisational skills: Studies reported various ways in which carers coped with administering medication: use of prefilled syringes or medication boxes alongside written schedules or diaries; use of computer spreadsheets and handwritten notes to keep records which were then reviewed by healthcare professionals on home visits. One study reported a potential barrier to safe delivery of medication arising if carers lack these organisational skills, including not being able to remember when and how much medication was administered and ‘inability to store medication safely and dispose of out-of-date medication’ (p.969).
Empowerment: Some carers reported feeling empowered by being able to give medication and that their confidence increased over time. However, ‘importantly, when symptoms were not controlled by the medications administered by the family caregiver, or a hospital admission was required, some family caregivers reported feeling disempowered and often considerably distressed’ (p.970).
Relationships: Relationships between carers and patients and between carers and healthcare professionals affected ability to manage medications effectively. Carers felt distressed and unsupported if their concerns were not dealt with by healthcare professionals. The concept of teamwork was also highlighted, with carers being prepared for contact with healthcare professionals by asking questions, making notes and keeping records. It was also important for them to know when to contact healthcare professionals for help. In some cases there were multiple carers caring for a patient, highlighting the need for good communication (and the potential for tension) between carers, for example about drug dosages.
Support: The central importance of adequate support from healthcare professionals is highlighted by all of the studies, particularly the opportunity for 24-hour telephone and in-person support. Without this, carers could feel isolated and even abandoned. Having medication drawn up in advance and access to written information was very helpful, including a troubleshooting guide for syringe drivers.
A systematic review of carer experiences of how their relatives’ pain was managed in a range of settings including hospice and hospital as well as home (Chi & Demeris, 2017) supports Wilson et al.’s (2018) findings concerning communication, knowledge and skills, although the review focuses mainly on carers of people with cancer.
To summarise, the findings of the review by Wilson et al. (2018) suggest that carer administration of medication is possible but with appropriate support from healthcare professionals. Identification of carers who will be able to take on administration of medications is likely to be of paramount importance. Specifically, carers should be physically able to administer medication, be able to store drugs correctly and keep adequate records. Education should be provided regarding likely symptom progression, particularly aimed at addressing fears about under- or over-medicating. Twenty-four-hour support should be available, both via telephone and in person, dependent on the need of the carer and patient, although clearly ‘in-person’ support is likely to be challenging in the context of COVID-19. Healthcare professionals should identify the potential for tension between multiple carers and address this if possible. Healthcare professionals can provide practical support in the form of pre-filled syringes, dosset boxes, and written schedules and information. Note that none of the studies reviewed involved carers of patients with COVID-19. Bowers et al. (2020) point out that there may also be local issues regarding drug stocks which would need to be addressed if medications are prescribed on an anticipatory basis.
Using digital technology to support carers
The systematic review by Chi and Demeris (2017) highlighted the issue of involving carers in multi-disciplinary team (MDT) meetings via video link. The review reported evidence (judged by the authors as weak) that remotely involving carers in MDT meetings helped to improve their perceptions of pain medication. It is unclear how the authors defined carer perception of pain, but they seem to use it to refer to the extent to which carers saw the patient’s pain as adequately controlled or not. Although pain is not a common symptom of COVID-19, this finding suggests including carers in MDT meetings may be helpful. A review by Golinelli et al. (2020) examined available evidence for the use of digital technology for patients with COVID-19 (not specifically end of life). It was undertaken relatively early in the pandemic and further evidence is likely to be published. However, the authors make the important point that it is important to ensure carers have the right equipment at home to be able to undertake video consultations.
Providing education interventions for carers
Both the reviews by Wilson et al. (2018) and Chi and Demeris (2017) raise the issue of how to enable carers to develop the knowledge and skills required to care for someone at home. Specific interventions addressing this have been undertaken and were examined in a systematic review of fourteen trials (seven randomised controlled trials (RCTs), three comparative studies and four quasi-experimental studies) of education, cognitive behavioural therapy (CBT) or psychoeducation interventions (Chi et al., 2016). We consider the evidence for CBT and psychoeducation below in the section on promoting carer wellbeing. Regarding the effectiveness of education (defined in the review as providing ‘caregivers education to enhance caregivers’ care knowledge and skills’ (p.896)), the authors found evidence they judged as weak for its benefit on carers’ knowledge, self-efficacy and preparedness, and on carers’ satisfaction with care (although how this was defined is unclear). However, some of the interventions included in the review involved multiple sessions given over several weeks, which may not be appropriate for carers of patients with COVID-19, given the terminal phase of the illness is often short. A systematic review by Farquhar et al. (2016) also assessed studies of educational interventions for carers of people with advanced disease and similarly concluded that the available evidence was weak.
The mixed methods evidence synthesis by Maddocks et al. (2019) assessed the role of holistic services (that is, services ‘providing pharmacological and non-pharmacological treatments to patients and caregivers, across settings, using multidisciplinary approaches’ (p.xxi)) for people with chronic or refractory breathlessness in people with advanced disease. This included a systematic review of 37 papers reporting on eighteen different holistic breathlessness services, predominantly for people with lung cancer. Most interventions were over a relatively short period (4-6 weeks) and incorporated a mix of education, psychosocial support and self-management strategies for breathlessness, plus additional measures, such as occupational aids or medication review. Overall, these breathlessness services were found to result in a reduction in distress from breathlessness. Both patients and their informal carers were found to value education and interventions aimed at the self-management of breathlessness, particularly when delivered by expert staff. The active participation of informal carers was considered an important component of successfully delivering breathlessness services. Whether such services could be implemented quickly enough for people with COVID-19 is uncertain, and we did not find any studies reporting on such services during the current pandemic.
As face-to-face sessions between healthcare professionals and carers may be difficult to organise during the pandemic, using digital technology is likely to be helpful in delivering education interventions. A systematic review of studies of existing educational videos aimed at patients receiving hospice or palliative care and their carers (Cruz-Oliver et al., 2020) showed that this approach may have potential, for example in improving knowledge and showing carers how to accept professional help and support services. The authors assessed the available evidence as of moderate to high quality. However, the specific information provided in the extant videos may not be relevant to COVID-19 patients because of the effect of COVID-19 restrictions on how services are configured.
To summarise, there is some weak evidence showing a benefit of education interventions for carers of people with palliative care needs, improving carers’ knowledge, self-efficacy and preparedness, as well as carers’ satisfaction with care. There is also moderate to high quality of evidence for the benefit of delivering education via videos. Education may have a role in providing self-management techniques to cope with breathlessness. Providing education for carers in the context of the COVID-19 pandemic presents challenges. Nevertheless, successfully delivered, education is also likely to support carer wellbeing, for example, by helping people to feel less anxious. Having adequate information while caring was a key factor in helping carers feel adequately supported in the studies reviewed by Flemming et al. (2019).
Supporting carer wellbeing
Given the potential for carers to feel isolated due to government-imposed restrictions designed to control the spread of COVID-19, it is particularly important for healthcare professionals to support carers’ general wellbeing to enable them to cope as effectively as possible. This section focuses on systematic reviews that assessed evidence where outcomes relevant to carer wellbeing were reported, some of which includes interventions described as education. We identified seven systematic reviews examining carer wellbeing: Ahn et al., 2020; Becque et al., 2019; Candy et al., 2011; Chi et al., 2016; Chung et al, 2019; Harding et al., 2011; Hudson et al., 2010. Although the reviews have different foci, there is some overlap between them in terms of the studies reviewed. We report here on those undertaken within the past four years as these provide the most comprehensive and up-to-date overview.
Ahn et al. (2020) undertook a systematic review examining the characteristics of interventions supporting family carers of people with advanced cancer, finding eleven RCTs or quasi-experimental studies. Since the interventions (mostly education) involved multiple sessions over periods of between three and ten weeks, the applicability of the findings of this review to some carers of people with COVID-19 may be limited. However, the authors reported that the interventions had a positive impact on the outcomes measured including psychological distress, quality of life, carer burden, self-efficacy and competence for caregiving.
Becque et al. (2019) undertook a systematic review assessing the effectiveness of nurse-led interventions, finding eight studies with a range of designs (three were also included in the review by Ahn et al., 2020). The authors reported similar findings regarding outcomes to Ahn et al. (2020). However, psychoeducation was the most common component of the interventions reviewed, defined as ‘…a structured programme geared towards providing information about things such as the patient’s disease process and related resources while training family caregivers to respond appropriately to disease-related problems’ (p.33). Psychoeducation had a positive effect on preparedness, which may be relevant to the present review. Although the authors do not define preparedness, it could refer to how prepared carers felt either about what to expect regarding disease progression or about taking on practical tasks, or both. Specifically, providing written information seemed to be helpful. None of the studies involved carers supporting people with COVID-19, and other components of the interventions were delivered face-to-face (either one-to-one or in groups) so would have to be adapted during the pandemic.
Chi et al. (2016) (described above) focused on articles published between 2004 and 2014 specifically designed for carers of people with terminal illness or with palliative care needs. Of the fourteen studies included, four were of an educational intervention, six of CBT and four of psychoeducation (defined as adding counselling and supportive interventions to education). The studies of CBT delivered between three and six sessions over one week to one month, although there was a high attrition rate in two of the studies because of disease progression at the end of life. As with the interventions reviewed by Ahn et al. (2016), the number of sessions involved suggests that CBT may not be a practical option for many carers of people with COVID-19. However, Chi et al. (2016) report that the interventions significantly improved psychological health, coping skills, self-efficacy and quality of life. The review found that psychoeducation interventions improved general health, competence, preparedness, rewards and social support, as well as reducing unmet needs and lowering carer anxiety. These interventions were delivered either one-to-one or in group sessions (both of which would have to be undertaken via digital technology in the context of COVID-19). The review graded all the evidence found to be of high quality as the studies were RCTs (n=7), comparative trials (n=3) or quasi-experimental (n=4). No further information is given.
Chung et al. (2019) undertook an integrative review to identify community-focused, professionally-led initiatives supporting family carers of people with palliative care needs. They found six studies mostly examining general support for carers but also including interventions aimed at stress management, promoting positive emotions and meeting informational needs. Peer support was included in three studies. Outcomes were assessed qualitatively and the interventions were considered beneficial. However, the review reports little information on which to assess this judgement.
To summarise, there is some evidence that interventions aimed at supporting carers of people with palliative care needs at home are effective. Although it is hard to determine exactly what components an intervention should include, ‘education’ seems to be a common factor in improving outcomes. Including informal carers as well as patients in the educational intervention appears to be important for their success. However, it is unclear whether outcomes are improved by the intervention itself, or whether having regular structured contact with healthcare professionals would produce the same effect. Providing structured interventions such as those assessed in the studies reviewed above may not be possible in COVID-19, given that in many cases there is likely to be a relatively short period of time between identifying carers’ needs and a patient’s death. Since much of the existing research has been undertaken in first-world countries findings may have limited applicability to other cultures (Hudson et al., 2010) and in countries with less developed healthcare systems.
Guidance produced in the context of COVID-19
Guidance for carers
Several organisations have produced online guidance for carers of patients with COVID-19, including at the end of life. These were initially produced near the beginning of the pandemic and adapted recommendations from existing palliative care guidelines to the management of COVID-19. As far as we are aware, none of them has yet been evaluated. We have not reported the specific advice for reasons of space. Importantly, they all give advice regarding coping with breathing difficulties, which is a common symptom of COVID-19 and is likely to cause distress.
HelpAgeUK (2020) provides extensive practical advice for carers regarding symptom management (medication, breathing issues, fever, cough, anxiety/confusion/delirium, restlessness, eating/drinking, toileting, moving), although it is not specifically focused on the palliative phase. The document also provides advice on how carers can look after themselves. However, it is unclear how the guidance was produced and recommendations are not referenced.
HospiceUK (2020) provides similar advice to HelpageUK2020 regarding symptom management (toileting; breathing difficulties) but also includes information about the dying process and what to do after death. Sensitive communication with the dying person is recommended, which may be aided by an Advance Care Plan or other individualised plan to help ensure a person’s physical and emotional needs are met at the end of life. HospiceUK state that the information has been produced in ‘collaboration with people with experience of a loved one dying, health and care professionals, and representatives from end of life care charities’, though again source documents and evidence are not referenced.
The Learning about Breathlessness (LaB) programme developed advice in conjunction with patients and carers for the management of breathlessness in cancer and COPD. Advice has been produced about how patients and their carers can use this guidance to manage breathlessness due to COVID-19.
Guidance for healthcare professionals supporting carers
In a commentary piece Kent et al. (2020) outline recommendations for healthcare professionals supporting the family carers of people with serious illness during a pandemic, such as COVID-19. The authors highlight important issues such as providing personal protective equipment (PPE) and explaining its correct use; assessing caregiver capacity including readiness, burden and distress; developing telehealth capacity to assess and treat patients, whilst including carers in the consultations; encouraging ACP conversations; thanking and reassuring carers; encouraging them to use social networks and to help them feel empowered; checking guidance being published by relevant organisations to provide more guidance as appropriate. The recommendations are drawn predominantly from literature published before the COVID-19 pandemic.
NICE (2020) provides advice for healthcare professionals caring for community-based patients with COVID-19 drawn from existing guidelines. This does not provide advice specifically for carers although it does suggest that carers may need to administer medication, but does not advise how to support people in this.
IMPLICATIONS FOR PRACTICE
The COVID-19 pandemic has led to rapid re-organisations in healthcare services in both primary and secondary care. Services continue to adapt in response to changes in disease prevalence and as more is learnt about the virus and possible treatments. One constant thus far is that the transmission risk has led to more healthcare services being provided remotely than ever before. This presents opportunities for improving access and support for carers and patients in the community, but also potentially risks leaving some people feeling isolated and unsupported.
There is a lack of evidence on how to support and enable carers providing end-of-life care in the context of COVID-19. As well as changes in how healthcare is being delivered, there are also important differences about the pandemic that may influence how carers feel about their role in palliative care. Providing care at home to someone dying from COVID-19 may increase both fear and risk of disease for the carer. Carers who do develop the disease may also become unwell and therefore be unable to provide ongoing support. Personal Protective Equipment (PPE) is likely to be required for carers at home, but this may impact on communication, both with health professionals and with the person they are caring for. Access to PPE, COVID-19 testing, and even medication to manage symptoms at the end of life, may all be restricted at times.
Despite these barriers, our review suggests that in certain situations, some carers can be well supported to provide some end-of-life care at home. Carers must be willing and able to take on this responsibility without feeling coerced to do so. Clear details about each medication, including the use, dosage, side-effects and other key information should be provided in written form. Practical steps such as pre-filled syringes and dosset boxes can help ensure correct medications are administered. Channels of communication between the carer and the healthcare team should be accessible and clear, including out of hours. This may include regular planned phone or video calls. Educational resources – both online and written – could be made available to offer additional support. Healthcare professionals should assess and support carers’ emotional wellbeing, not only while care is ongoing, but also by signposting appropriate bereavement support when needed. There are validated tools available to support healthcare professionals in making such an assessment, such as the Carers Support Needs Assessment Tool.
For these steps to be successful, local protocols are likely to be needed, ideally supported by evidence-based national guidelines. Establishing these during a pandemic presents challenges, but if delivered successfully, could allow people who wish to die at home to do so without compromising care.
- There is a need for prompt, responsive and anticipatory support for carers at home who may be feeling unsure about their role in providing end-of-life care and where to turn to for support and treatment for their relative.
- We found no empirical research evidence from studies of carers of people with palliative care needs and COVID-19 cared for at home, or on whether this approach is safe for all involved.
- We found that research from studies of carers with people with palliative care needs in other conditions indicates that:
- Carers may be enabled to manage medication at home, provided that appropriate support and education is given, and that carers have the required capabilities.
- The use of digital technology can help, but healthcare professionals should be aware that not all carers have access to suitable equipment.
- Providing education for carers, relevant to their caring role, can be of benefit. However, providing formal, structured interventions presents considerable challenges in the context of COVID-19.
- It is important to support carers’ general wellbeing as much as possible.
- Guidance for carers of people with COVID-19 cared for at home has been adapted from existing guidelines. It is not based on evidence in COVID-19 and has not been evaluated in the context of the current pandemic. There is also some advice for healthcare professionals supporting such carers.
Disclaimer: the article has not been peer-reviewed; it should not replace individual clinical judgement and the sources cited should be checked. The views expressed in this commentary represent the views of the authors and not necessarily those of the host institution, the NHS, the NIHR, or the Department of Health and Social Care. The views are not a substitute for professional medical advice.
Rachel France is a post-doctoral palliative care social science researcher with extensive experience as a systematic reviewer.
Jitka Vseteckova is Senior Lecturer in Health and Social Care at the Faculty of wellbeing, Educations and Language Studies at The Open University. She regularly leads and contributes to systematic, narrative and rapid reviews. Her specialism is around ageing, care and caring, exercise, people living with dementia and people with learning difficulties.
Susie Lapwood is Emeritus Senior Associate Specialist in paediatric and young adult palliative care at Helen and Douglas House Hospices, Oxford UK. She is a member of the Together for Short Lives / Association for Paediatric Palliative Medicine research group. She has worked as a general practitioner and is a GP appraiser.
Nia Roberts is an outreach librarian and information specialist at Bodleian Health Care Libraries. She regularly contributes to systematic reviews in population health and primary care.
Nicholas Jones is a GP and Wellcome Trust Doctoral Research Fellow at the University of Oxford, Nuffield Department of Primary Care Health Sciences.
Kate Flemming is Professor of Hospice Practice and Evidence Synthesis at the University of York, Head of Research and Clinical Innovation at Hospice UK and a Registered Nurse
We thank Frank Arrojo and Helen Findlay, Patient and Public Involvement representatives for helping to develop the research question.
We thank the following additional members of the Oxford CEBM Covid-19 Palliative Care Rapid Review coordinating team for their contribution in review development and in providing internal peer review for this manuscript:
Professor Sandy Oliver
Dr Louise Jones
Dr Bridget Candy
Dr Jo Elverson
Dr Lucy Selman
Dr Sarah Mitchell
Dr Dan Munday
Dr Bridget Johnston
Dr Catriona Mayland
Dr Lyn Jenkins
Dr Philip Kinghorn
Dr Stephen Barclay
Ahn, S., Romo, R.D., Campbell, C.L. (2020). A systematic review of interventions for family caregivers who care for patients with advanced cancer at home. Patient Education and Counseling, 103(8), 1518-1530. https://doi.org/10.1016/j.pec.2020.03.012.
Alderman, B., Webber, K., & Davies, A. (2020). An audit of end-of-life symptom control in patients with corona virus disease 2019 (COVID-19) dying in a hospital in the United Kingdom. Palliative Medicine, 34(9), 1249–1255. https://doi.org/10.1177/0269216320947312
Becqué, Y.N., Rietjens, J.A.C., Geert van Driel, A., van der Heide, A., & Witkamp, E. (2019). Nursing interventions to support family caregivers in end-of-life care at home: A systematic narrative review. International Journal of Nursing Studies, 97: 28-39, https://doi.org/10.1016/j.ijnurstu.
Booth, A., Noyes, J., Flemming, K.A., Moore, G., Tunçalp, Ö., & Shakibazadeh, E. (2019) Formulating questions to explore complex interventions within qualitative evidence synthesis. BMJ Global health, 4, e001107.
Bowers, B., Pollock, K., & Barclay, S. (2020). Administration of end-of-life drugs by family caregivers during COVID-19 pandemic. BMJ, 269: m1615.
Candy, B., Jones, L., Drake, R., Leurent, B., & King, M. (2011). Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database of Systematic Reviews. 6: CD007617. https://doi.org//10.1002/14651858.CD007617.pub2
Chi, N-C., Demiris, G., Lewis, F.M., Walker, A.J., & Langer, S.L. (2016). Behavioral and Educational Interventions to Support Family Caregivers in End-of-Life Care: A Systematic Review. American Journal of Hospice & Palliative Medicine, 33(9): 894-908.
Chi, N-C. & Demiris, G. (2017). Family Caregivers’ Pain Management in End-of-Life Care: A Systematic Review. American Journal of Hospice & Palliative Medicine, 34(5): 470-485.
Chung, A., Collier, A., & Gott, M. (2019). Community-led and/or focused initiatives to support family carers within a palliative care context: An integrative review. Palliative Medicine, 33(2), 250–256. https://doi.org/10.1177/0269216318813813
Cruz-Oliver, D.M., Pacheco Rueda, A., Viera-Ortiz, L., Washington, K.T. & Parker Oliver, D. (2020). The evidence supporting educational videos for patients and caregivers receiving hospice and palliative care: A systematic review, Patient Education and Counseling, 103(9): 1677-1691. https://doi.org/10.1016/j.pec.2020.03.014.
Flemming, K., Atkin, K., Ward, C., & Watt, I. (2019). Adult family carers’ perceptions of their educational needs when providing end-of-life care: a systematic review of qualitative research. AMRC Open Res, 1(2). https://doi.org/10.12688/amrcopenres.12855.1
Golinelli, D., Boetto, E., Carullo, G., Landini, M.P., & Fantini, M.P. (2020). How the COVID-19 pandemic is favoring the adoption of digital technologies in healthcare: a rapid literature review medRxiv preprint. https://doi.org/10.1101/2020.04.26.20080341
Gott, M., Frey, R., Robinson, J., Boyd, M., O’Callaghan, A., Richards, N., & Snow, B. (2013). The nature of, and reasons for, ‘inappropriate’ hospitalisations among patients with palliative care needs: a qualitative exploration of the views of generalist palliative care providers. Palliative medicine, 27(8), 747–756. https://doi.org/10.1177/0269216312469263
Harding, R., List, S., Epiphaniou, E., & Jones, H. (2011). How can informal caregivers in cancer and palliative care be supported? An updated systematic literature review of interventions and their effectiveness. Palliative Medicine. 26(1):7-22. https://doi/10.1177/0269216311409613
Hetherington, L., Johnston, B., Kotronoulas, G., Finlay, F., Keeley, P., & McKeown, A. (2020). COVID-19 and Hospital Palliative Care – A service evaluation exploring the symptoms and outcomes of 186 patients and the impact of the pandemic on specialist Hospital Palliative Care. Palliative Medicine, 34(9), 1256–1262. https://doi.org/10.1177/0269216320949786
Hudson, P.L., Remedios, C., & Thomas, K. (2010). A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliative Care. 9:17. https://doi/10.1186/1472-684X-9-17
Kent, E.E., Ornstein, K.A., & Dionne-Odom, J.N. (2020). The Family Caregiving Crisis Meets an Actual Pandemic Journal of Pain and Symptom Management, 60 (6): e66-e68. https://doi.org/10.1016/j.jpainsymman.2020.04.006
Maddocks, M. Brighton, L.J., Farquhar, M., Booth, S. Miller, S., Klass, L., Tunnard, I., Yi, D., Gao, W., Bajwah, S., Man, W.D-C., & Higginson, I.J. (2019). Holistic services for people with advanced disease and chronic or refractory breathlessness: a mixed-methods evidence synthesis. Health Services and Delivery Research, 7(22). Available from: https://ueaeprints.uea.ac.uk/id/eprint/71605/
Wilson, E., Caswell, G., Turner, N., & Pollock, K. (2018). Managing Medicines for Patients Dying at Home: A Review of Family Caregivers’ Experiences. Journal of Pain and Symptom Management, 56(6): 962-974. https://doi.org/10.1016/j.jpainsymman.2018.08.019.
||((((“Home Care Services”[Mesh:NoExp] OR “Home Care Services, Hospital-Based”[Mesh] OR “Home Nursing”[Mesh]) OR (“Family”[Mesh] OR “Caregivers”[Mesh])) OR (home*[Title/Abstract] OR family[Title/Abstract] OR carer*[Title/Abstract] OR caregiver*[Title/Abstract] OR spouse[Title/Abstract] OR spousal[Title/Abstract] OR adult child*[Title/Abstract] OR offspring[Title/Abstract] OR daughters [Title/Abstract] OR sons[Title/Abstract])) AND ((“Palliative Care”[Mesh] OR “Terminal Care”[Mesh] OR “Advance Directives”[Mesh]) OR ((palliative[Title/Abstract] OR terminal*[Title/Abstract] OR “end of life”[Title/Abstract]) OR (advance directive*[Title/Abstract] OR advanced directive*[Title/Abstract] OR advance care plan*[Title/Abstract] OR advanced care plan*[Title/Abstract] OR advance decision*[Title/Abstract] OR advanced decision*[Title/Abstract] OR living will*[Title/Abstract] OR “power of attorney”[Title/Abstract] OR “care proxy”[Title/Abstract] OR “health care proxy”[Title/Abstract] OR “healthcare proxy”[Title/Abstract])))) AND ((coronavirus*[Title] OR coronovirus*[Title] OR coronoravirus*[Title] OR coronaravirus*[Title] OR corono-virus*[Title] OR corona-virus*[Title] OR “Coronavirus”[Mesh] OR “Coronavirus Infections”[Mesh] OR “Wuhan coronavirus” [Supplementary Concept] OR “Severe Acute Respiratory Syndrome Coronavirus 2″[Supplementary Concept] OR COVID-19[All Fields] OR CORVID-19[All Fields] OR “2019nCoV”[All Fields] OR “2019-nCoV”[All Fields] OR WN-CoV[All Fields] OR nCoV[All Fields] OR “SARS-CoV-2”[All Fields] OR HCoV-19[All Fields] OR “novel coronavirus”[All Fields])) Filters: from 2019 – 2020 Sort by: Most Recent
||(home*[Title] OR famil*[Title] OR carer*[Title] OR caregiver*[Title] OR spouse[Title] OR spousal[Title] OR adult child*[Title] OR offspring[Title]) AND ((“Palliative Care”[Mesh] OR “Terminal Care”[Mesh] OR “Advance Directives”[Mesh]) OR ((palliative[Title/Abstract] OR terminal*[Title/Abstract] OR “end of life”[Title/Abstract]) OR (advance directive*[Title/Abstract] OR advanced directive*[Title/Abstract] OR advance care plan*[Title/Abstract] OR advanced care plan*[Title/Abstract] OR advance decision*[Title/Abstract] OR advanced decision*[Title/Abstract] OR living will*[Title/Abstract] OR “power of attorney”[Title/Abstract] OR “care proxy”[Title/Abstract] OR “health care proxy”[Title/Abstract] OR “healthcare proxy”[Title/Abstract]))) Filters: Systematic Reviews, from 2010 – 2020
||(palliat* OR terminal* OR “end of life”) AND (home OR family OR spouse* OR spousal OR offspring OR sons OR daughters OR children OR carer* OR caregiver*)
||Search terms below
||(coronavirus OR covid-19) AND (palliative OR palliation OR terminal OR terminally OR “end of life”)
||(coronavirus OR covid-19) AND (home or homes)
||(coronavirus OR covid-19) AND (palliative OR palliation OR terminal OR terminally OR “end of life”) AND (home OR homes)
||(coronavirus OR covid-19) AND (palliative OR palliation OR terminal OR terminally OR “end of life”) AND (family OR families OR spouses OR spousal OR children OR carers OR caregivers)
||(coronavirus OR covid-19) AND hospice AND home
||“(coronavirus OR covid-19) AND (palliative OR terminal OR “end of life” OR hospice”) AND (home OR homes)”
||(coronavirus OR covid-19) AND (palliative OR hospice OR terminal OR “end of life”) AND (family OR families)
||Title=coronavirus AND Title=home
||Title=covid-19 AND Title=home
||S3 AND S9 AND S14
||S10 OR S11 OR S12 OR S13
||TI ( home* OR family OR families OR caregiver* OR carer* OR children OR offspring OR sons OR daughters OR spouse* OR spousal OR husband* OR wives ) OR AB ( home* OR family OR families OR caregiver* OR carer* OR children OR offspring OR sons OR daughters OR spouse* OR spousal OR husband* OR wives )
||(MH “Caregivers”) OR (MH “Caregiver Support”)
||(MH “Home Health Care”) OR (MH “Home Respiratory Care+”)
||S4 OR S5 OR S6 OR S7 OR S8
||TI ( (advance* N2 (directive* OR ” decision* OR care plan*”)) OR “living will*” OR “power of attorney” OR “care proxy” OR “healthcare proxy” ) OR AB ( (advance* N2 (directive* OR ” decision* OR care plan*”)) OR “living will*” OR “power of attorney” OR “care proxy” OR “healthcare proxy” )
||(MH “Advance Directives+”)
||TI ( terminal* OR palliative OR hospice OR “end of life” ) OR AB ( terminal* OR palliative OR hospice OR “end of life” )
||(MH “Terminally Ill Patients”)
||(MH “Terminal Care+”)
||S1 OR S2
||TI ( coronavirus OR COVID-19 OR “2019nCoV” OR “2019-nCoV” OR WN-CoV OR nCoV OR “SARS-CoV-2” OR HCoV-19 ) OR AB ( coronavirus OR COVID-19 OR “2019nCoV” OR “2019-nCoV” OR WN-CoV OR nCoV OR “SARS-CoV-2” OR HCoV-19 )
||(MH “Coronavirus Infections”) OR (MH “COVID-19”)