Study selection

After duplicates were removed, the total number of results was 2643. In the first step, titles and abstracts were reviewed independently by two authors (TT, FAH). Second, full texts of articles with titles and abstracts that met the inclusion criteria (n=197) were assessed independently by the same authors. This search resulted in 32 articles for the final review, including 5 review articles8–12 that were not part of the scoping review (see figure 1 for a flow chart of the study selection).

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Figure 1

Study selection flow chart.

Characteristics of the included studies

Geographical location and research aim varied in the included studies (see tables 1–3 for details), with the majority of studies originating in the UK. In 16 studies, the type of care reported was palliative day-care, while 11 studies reported hospice day-care. Participants were mainly palliative or hospice day-care patients (25 studies) or staff members, including volunteers (12 studies). Family members or caregivers participated in four studies; referrers were interviewed in one study.13

The sample size varied from 814 to 15415 participants. One study reviewed the medical consultations of 287 patients.16 The most frequently used methods were qualitative (11 studies) and quantitative (10 studies). Both qualitative and quantitative data were reported in three studies, of which two reported mixed methods. Other methods, including descriptive research, were employed in eight studies.

Descriptive analysis of topics

The review identified nine major themes with respect to the status, demand and practice models of palliative day-care clinics and day hospices: (1) the referral process; (2) models of care; (3) patients attending palliative day-care clinics and day hospices; (4) the need to counteract the under-representation of patients with non-malignant conditions, ethnic minority patients and younger patients; (5) the discharge process; (6) patient perceptions of palliative day-care clinics and day hospices; (7) funding and cost-effectiveness; (8) evaluation and outcome measurement tools; and (9) education about the goals of palliative day-care clinics and day hospices.

Referral process

Studies examining the referral process described the establishment of defined referral criteria.17–23 However, the specific criteria differed across studies. Frequently reported criteria included the diagnosis of a progressive life-limiting disease20–22 and the need for specific palliative care,19–22 often in combination.

Referral processes also differed between facilities. All studies on the referral process were conducted in the UK, with only one exception (originating in Canada).15 These studies highlighted that referrals were made by community palliative care teams,19 24 25 palliative care inpatient units,25 26 various outpatient hospital services,15 social workers25 and primary healthcare teams, including general practitioners.17 25 26 Lohfeld et al23 described that health professionals (including administrators and experienced palliative care providers) demanded that a wide range of professionals be allowed to make referrals to palliative day-care.

The published reasons for referral ranged from caregiver respite13 18 21 25 27 to psychosocial support for patients and caregivers13 17–19 21 25 27 and symptom control for patients.13 17–19 21 27 A review of the studies revealed a discrepancy in priorities between health professionals and patients: health professionals put more weight on medical reasons, including symptom control,13 18 19 while patients valued social contact above all else and placed a greater emphasis on psychosocial factors.18 28 Only one study described referrals by a home care nurse for psychosocial reasons.24

Models of care

The analysed studies reported very different models of care. Frequently, they distinguished between palliative day-care clinics and day hospices that focused on social aspects of care28–30 and those that emphasised medical aspects.19 31 32 However, most centres described in the literature operated on a mixed model.13 24 27 33 Health professionals working in palliative day-care clinics and day hospices seemed to favour the medical model. Many patients appreciated the opportunity to access medical care, but preferred a mixed model, emphasising the value of psychosocial support and social contact in both palliative and hospice day-care. Several authors19 22 33 34 suggested that palliative and hospice day-care should be understood as a form of care falling between home and inpatient care, possibly even substituting for community care.19 Corr and Corr34 portrayed day-care as a suitable introduction to the hospice environment for terminally ill patients, enabling them to stay at home for as long as possible. Finally, the literature described some free-standing palliative day-care clinics and day hospices,35 as well as palliative day-care clinics and day hospices integrated with residential hospices or hospitals,15 32 35 36 or community centres.28

The analysed studies showed that most palliative day-care clinics and day hospices were staffed with a multidisciplinary team providing a diversity of services and activities. Nurses and nursing care played a key role.14–27 30–34 36–44 Medical care was mostly provided by physicians on the core staff15–17 22 27 31 36 37 41 44 or physicians from an associated inpatient unit19 or hospital.15 Furthermore, patients were offered physiotherapy,15–20 22 24–27 30–32 34 36 39 41 42 occupational therapy,16 17 19–22 25 27 30 32 34 36 41 art and music therapy/crafting,19 21 22 24 26 27 30–33 36 42 44 bodily care (eg, hairdressing and bathing),16 25 27 30 32–34 38 43 complementary therapies (eg, aromatherapy and massage)16 19–22 24–27 30 32 34 39 44 and shared meals.25 26 30 32–34 36 42–44 Three studies reported family/carer support groups.15 21 37 Higginson et al21 found that patients codetermined the activities on offer. Most authors reported that the palliative day-care centres and day hospices relied on volunteers15–17 19–21 23–26 28 30 32–35 37 40 44; however, the importance of the volunteers’ tasks differed greatly, ranging from transport17 to being the only staff employed at a day hospice.28 The role of the doctor was addressed by White and Johnson16 and Hearn and Myers,27 who described that the physician’s main task was to manage patients’ complex needs27 and identify any deterioration in their condition.16 Other caregiving professions in palliative day-care clinics and day hospices, extending across the core and extended teams, included social workers,15 20–22 25 30 36 41 44 chaplains,15–17 21 25 26 36 37 41 44 psychologists,15 19 20 26 41 dietitians,15 17 21 22 chiropodists,16 21 25 hairdressers16 21 25 and pharmacists.15 30

The literature showed that palliative day-care clinics and day hospices were open 1–7 days per week,18 21 28 33 41 and offered weekly access to patients between the hours of about 10:00–15:00.17–21 24 25 30 32 34 36 One study reported an appointment-based model,25 while Hirose et al29 provided an example of service-themed meetings. Attendance options described in the studies vary considerably from an unlimited number of days a week the patients can attend33 to monthly appointments.25 Patients seemed to prefer spending an entire day in day-care over appointment-based attendance.38 Furthermore, two authors showed that giving patients the opportunity to attend the day hospice on the same day each week enabled them to build stronger relationships with other patients and staff.17 30

Patients attending palliative day-care clinics and day hospices

The analysed publications described the ‘typical’ palliative day-care patient as white, over 65 years old24 26 30 32 39 and with a cancer diagnosis.15 19 21 24–26 28 29 32 36 39–43 A few palliative day-care clinics and day hospices were reported to also focus on patients with non-malignant conditions, such as motor neuron disease, chronic airway disease and HIV.15 17–19 21 22 25 39 42 Several articles described facilities accepting patients across a wide range of disease trajectory, moving away from a focus on the terminal stage of illness.15 28–30 33

Demand to counteract the under-representation of patients with non-malignant conditions, ethnic minority patients and younger patients

A few authors highlighted the general importance of the under-representation of patients with non-malignant conditions, ethnic minority patients and younger patients.15 17 26 27 The benefits to patients with non-malignant conditions were expected to equal those of patients with cancer, because patients with a chronic disease often have needs that can be easily addressed in hospice and palliative day-care facilities, thus enabling them to stay at home for a longer period of time.34 Some palliative day-care clinics and day hospices were reported to have established a specific day for younger patients.19 21 Finally, the literature reported the following barriers to access for patients from different ethnic backgrounds: social inequalities,27 different family structures26 and language barriers.26

Discharge process

The available publications reported a wide range of policies for the discharge of patients from palliative day-care clinics and day hospices, as well as attitudes towards these policies. The authors described palliative day-care clinics and day hospices with a fixed time, after which patients were assessed to determine whether they had achieved the treatment goal (and hence should be discharged) or whether they should continue with the programme. One article described that, once discharged, patients either found support through a community palliative care team or, where necessary, continued to receive psychological support at the hospice day-care centre.20 Patients were reported to often feel anxious about their impending discharge25 and to prefer continuous care.18

Patient perception of palliative day-care clinics and day hospices

Douglas et al38 found that, above all else, some patients valued the opportunity to access medical therapies in palliative day-care. However, several studies showed that patients mostly valued the sense of community14 24 25 41 42 and the opportunity to build strong relationships and friendships.25 Patients enjoyed receiving palliative day-care because, at the day hospice or palliative day-care clinic, they felt removed from their role as a patient and regained a sense of autonomy.14 24 30 40 In addition, they felt comfortable and relaxed in the safe, yet informal atmosphere.19 25 35 40 Several authors highlighted the importance of patients’ reduced sense of isolation while attending day-care13 15 21 25 26 28 33 34 40 42 44 and ability to ‘get out’.24 34

Funding and cost-effectiveness

Little research had been conducted on funding for these facilities. Most centres were reported to have relied, at least in part, on fundraising and the voluntary sector.19 21 31 In the USA, some projects were supported by Medicare.34 37 In the UK, the National Health Service was identified as the funding body behind a few palliative day-care centres,19 21 some of which were facing increased pressure to demonstrate effectiveness in order to ensure continued funding.19 One British day hospice operating on a social model had to change to a therapeutic model in order to receive funding.20 Higginson et al21 reported that several palliative day-care centres were demanding that patients pay for some services, such as the provision of meals or hairdressing. One author15 described funding as a major issue faced by palliative day hospitals, yet argued that, without defined, desired outcomes, it would be difficult to prove cost-effectiveness and hence determine optimal funding levels.

Evaluation and outcome measurement tools

Several studies aimed at measuring the outcomes of palliative day-care using tools such as the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire 30, the Mood Adjective List,36 the Palliative Care Outcome Scale (POS),31 39 the McGill Quality of Life Questionnaire,31 39 the choice experiment method38 and quality-adjusted life years.27 However, none of these tools was able to clearly determine the benefits or outcomes of palliative day-care.15 27 31 36 38 Only one study reported patients’ significant improvement, using the Edmonton Symptom Assessment System/Symptom Distress Scores and the Edmonton Functional Assessment Tool. However, the results could not be accredited to the implemented programme due to a lack of a control group.22 The authors acknowledged that an optimal outcome measurement had yet to be determined and that the value of palliative day-care could not be assessed by health status alone.38 39

Several authors demanded that more effort be put into the identification of patients likely to benefit the most from palliative day-care,15 19 24 27 28 32 and hence the development of ideal admission criteria.15

Education about the goals of palliative day-care clinics and day hospices

Douglas et al19 found that referrals to palliative and hospice day-care centres were strongly reliant on the knowledge of community and hospital health professionals. In this respect, Vandaele et al33 highlighted the need for further education to clear up misconceptions about palliative day-care within the general public and referrers. Greaves26 reported that hospices and palliative day-care centres had to push back against patients’ fear of the term ‘hospice’, which they perceived as describing a one-way road to death. This aligns with Cochrane et al’s17 reporting of the main reasons offered by patients who declined attendance: fear of the hospice and anxiety or uncertainty about what this service would offer. Only 2 of the 16 interviewed patients who declined referral indicated that they were satisfied with their existing services and hence not interested in palliative day-care.17 Corr and Corr34 advocated for encouraging the active role of patients in improving their quality of life, instead of distracting patients from their disease. Finally, the literature reported that palliative day-care clinics and day hospices could provide a link between the home and hospital care,15 34 and hence improve the home care situation,33 enabling patients to stay at home for a longer period of time.