What do patients and family-caregivers value from hospice care? A systematic mixed studies review

Phase 1: Qualitative evidence

All studies exploring perspectives and views where value could be interpreted to generally indicate the implied value to patients and family-caregivers were synthesised using the Thomas and Harden [3] approach to thematic synthesis.

Phase 2 : Quantitative evidence synthesis

It was not possible to undertake a meta-analysis as study designs, outcomes and measures varied. All quantitative studies where value was measured quantitatively were synthesised using a narrative summary approach. Findings were grouped by topic or outcome and summarised.

Phase 3: Cross study synthesis

Qualitative findings

GRADE CERQual (Confidence in the Evidence from Reviews of Qualitative research) was used to assess and summarise the confidence in the review findings. The approach focuses on four components: (1) Methodological limitations; (2) Coherence of the review findings; (3) Adequacy of the data; (4) Relevance of the findings from the included studies to the review question. There are four levels of confidence that can be assigned to each finding; very low, low, moderate and high. All findings are initially classified as ‘high confidence’ and then demoted if important limitations were discovered across the four components (See Additional file 6).

Quantitative findings

GRADE CERQual is primarily designed for assessing the certainty of findings from trials. There is no GRADE equivalent for questionnaires/surveys so it was not possible to assess the confidence in the quantitative findings.

Reporting

The Enhancing Transparency in reporting the synthesis of qualitative research (ENTREQ) [5] was used for the qualitative evidence and relevant elements of the Preferred Reporting Items for Systematic Reviews (PRISMA) [6] was followed for the quantitative evidence.

Analytical theme 1: The importance of staff in the provision of high standard quality care

The personal and professional traits of hospice personnel contributed greatly to the overall value attributed to hospice care. Patients and family-caregivers valued the personal qualities of staff, their experiences and specialised knowledge and skills, and development of a close rapport amongst staff, patients and their families. The importance attributed to these qualities was further evidenced with typical comments regularly referring to how staff had “turned out to be friends” [7]. The specialised knowledge and expertise of hospice personnel also resulted in the enhanced ability of staff to empathise, use their initiative, anticipate the changing needs of the patient and their families and provide proactive responses. This, however, would not have blossomed without continuity, specifically, regular contact with designated key personnel. Through regular and consistent contact, staff members were able to learn the small nuances of individual patients and their family-caregivers and provide the necessary support, tailored specifically to them. To illustrate, staff awareness of family-caregiver support needs ensured that respite care was often offered before families fatigued [7], preventing unwanted hospital admissions.

Analytical theme 2: The importance of the role of social engagement and participation in social activities in the maintenance of relationships and their sense of normality

Many patients expressed the value associated with a sense of community that was created in the day units by bringing people together who were in the ‘same boat’ [8, 9]. The hospice promoted a community ideology within which individuals were not judged on their actions and were given the freedom to sit and be accepted without feeling the need to contribute [10]. Frequent use of collective terms such as ‘we’ and ‘us’ only serve to strengthen this notion [10]. Day-care provided an environment which enabled patients to hold open discussions with each other about how their illness had affected their lives [8]. This was of value because it enabled patients to share their stories regarding their treatment, symptoms and personal experiences thus resulting in a reduction in their social isolation. Often patients would maintain a façade when in the presence of family and loved ones to protect them from greater emotional distress (See Quote 4 in Additional file 8). Peer support proved to be the overwhelming value of day care.

Analytical theme 3: The importance of the comfort gained from the availability and accessibility of the hospice

Both family-caregivers and patients placed value on the availability and flexibility of the hospice services and its staff [9, 11–13]. Availability and flexibility was comprised of multiple facets, each of which has an individual value to service users. Patients and caregivers were quick to note that the availability of staff members [13], and the 24-h support they provided [11], coupled with other influential factors such as open visiting hours [14] and access to a wide range of staff and services, were central to a sense of security [7, 15]. In particular, the provision of phone support, addressment of worries, general support, reassurance, validation, and help with practical tasks had been a significant help to families in continuing with their caregiving role [16]. Many caregivers suggested they had willingly taken on the role in order to facilitate the patients’ wish to die at home [12]. This, however, had detrimental effects on their physical and psychological wellbeing largely due to the stress created in trying to care for their loved one [12, 17]. For this reason, significant value was placed on the provision of hospice night aides-hospice staff members who provided support to patients and family-caregivers through the night [11]. Although value was placed on the availability of daytime hospice aides, the presence of night aides, particularly in times of crisis, was reiterated throughout [16] (Quote 11). The time immediately after death was often reflected on by family-caregivers as a period of difficulty due to the number of tasks that arose following a home death, such as arranging funerals, returning medical equipment and difficulties seeking bereavement support [13]. For caregivers of patients who died in a hospice inpatient setting, or supported by the Hospice at Home service, the burden associated with the aforementioned tasks, in many cases were alleviated by the hospice. Caregivers noted the value of this.

Analytical theme 4: The importance of the role of the hospice in helping promote patient and carer autonomy through the provision of various support mechanisms

Through the provision of both carer and patient support, hospices enabled patients to fulfil their wish to die at home, which was highly valued by patients [13]. The ability to fulfil the patients’ wish to die at home, however, was influenced by the carers’ ability to cope. It was evident that family-caregivers were often concerned that they would be unable to support the ever-changing needs of the patient [13]. Family-caregivers often associated a patients’ end-of-life experience with their own ability to address the needs of the patient [13]. The support provided by the Hospice at Home service was an invaluable source of support and reassurance during times where carers were struggling, which in turn helped foster patient autonomy (Quote 14) [18]. This support was provided through a range of mechanisms including but not limited to physical, psychological, social and financial help. Respite care, provided by the hospice enabled family-caregivers to have time to themselves during which they could relax and complete other day-to-day chores [11] and regain a sense of normality. It was apparent that the provision of domestic-related support was highly valued and, on occasion, it was noted that hospice night aides completed domestic chores on behalf of family-caregivers [18]. The benefit of this was twofold, not only ensuring that practical household activities were accomplished, but it also helped alleviate the burden that caring often entails [11]. During periods when carers felt unable to cope, knowing that scheduled visits were arranged gave them the confidence and determination to continue with their caring role [11].

The quality of care provided

The high standard of care provided by hospices was of great comfort and value to patients and caregivers. When compared with other health care service providers (home care, care homes and hospitals), the number of bereaved caregivers categorising the quality of care as excellent was highest when provided by a hospice setting [19]. This was further supported across this synthesis as carers consistently reported high levels of satisfaction (91–97%) regarding the quality of care hospices provided [20, 21]. Caregivers’ perceptions of quality were further ameliorated by the knowledgeable [20, 22], courteous and approachable staff [22]. These positive traits associated with members of the hospice team endowed both patients and caregivers with high levels of confidence in their capabilities [23–28]. Whilst findings suggest differences in the provision of care specifically the various health care providers (hospital, care home and home care), Parkes [29] found minimal discrepancies between hospice and hospital staff in relation to friendliness, approachability and helpfulness from spouses’ perspectives.

Availability of the hospice and its staff

The value associated with the availability and accessibility of the hospice and personnel were inferred by the emphasis placed on this facet of care with patients agreeing that they had access to an adequate amount of staff [20, 23–27]. Most caregivers felt that they could reach the hospice medical team when necessary and this was reflected by Lucas et al. [20] who found that 82% of carers had no difficulties obtaining medical support. In addition, 95% of carers felt that the Hospice at Home service was able to provide the help requested for their loved one [22]. This adds to the perception that staff availability is greater within a hospice, [28, 29] however, it is worth noting that less than 60% of respondents had received access to 24-h support [21]. In contrast, findings demonstrated substantial disparities associated with the availability of staff within the hospital settings. The disparities that exist between hospice and hospitals were further accentuated by Parkes [29], as spouses reported that they were more likely to talk to a wider range of staff whilst at a hospice. When asked “How many other members of the institution staff did you get to talk to?” 68% of participants at other hospitals said ‘none’ compared to only 15% at St Christopher’s (P < 0.002) [29].

Provision of information

Both patients and caregivers reported high levels of satisfaction pertaining to the receipt of adequate information whilst under hospice care [20, 28] as 90% of respondents felt that they had been kept suitably updated by Hospice at Home [20]. 75% of respondents felt that hospice doctors and nurses were able to explain the deceased person’s condition, treatment and tests in a clear and comprehensible way [20] whereas only 46% of respondents, by contrast, felt hospitals were able to do so [28]. Addington-Hall and O’Callaghan [28] noted that caregivers within their study were twice as likely to ‘always’ be kept informed within a hospice as opposed to a hospital setting (90% versus 44%).

Patient and carers views on their involvement in the care

Within the hospice day care setting, the percentage of those ‘very satisfied’ with their involvement in the planning of their care ranged from 57.3–70%, whilst in the inpatient setting this ranged from 66.8–71.2% [23–27]. This particular area, however, has fluctuated across the years as a reduction in the percentage of day care patients reporting the highest levels of satisfaction was shown [23–27].

Whilst hospices were shown to have involved carers in the shared decision-making process thus ensuring they were fully informed, hospitals waivered in comparison [28]. This was evidenced as findings highlighted how 11% of carers within the hospice setting compared with 21% within a hospital setting felt that that decisions had been made which their loved one would not have agreed with [28].

Bereavement support

Parkes [29] identified that no systematic attempt was made by their included hospice to support bereaved spouses. Some respondents, however, highlighted that they had been informally asked to remain in contact, an invitation accepted by just under a quarter of respondents [29]. This is in stark contrast to the findings in more recent studies which showed that the 81% of respondents received a follow up call as a minimum level of support [21, 30]. Other services varied from monthly memorial ceremonies which had high attendance rates (87%), a volunteer bereavement support service [30] and a bereavement information evening [21, 30]. Bereavement information evenings were evident in two studies, attendance at the bereavement information evenings were relatively low with an attendance of 33% at one hospice [30] and 11% attendance at the other hospice [21]. The reasoning behind this could be explained as a consequence associated with a lack of awareness as some of the respondents (28%) explained that they were unaware of the support networks available [21]. Bereavement support was also extended to patients in some cases [23–25]. In many instances, the percentage of patients who felt extremely supported rarely surpassed 50% [23–25]. This was a prominent issue within the day care setting [23].

The accessibility and quality of food

Within the day care setting at one hospice, the “welcome on arrival with tea and scones” was considered by many patients (61%) to be the most valued activity [18]. Lunch time itself was valued by half of the patients (50%) [18]. When asked about the quality of catering, the percentage of inpatients who considered the quality as excellent ranged between 65.1–72.7%. In the day care setting the percentage ranged between 69.4–72.7% [23–27]. Evidence also demonstrated that a large proportion of patients are happy with their access to food outside of set meal times (55.4–69.6%) [23–25]. Between 75 and 81% of carers within the survey conducted by the Office for National Statistics [19] believed that their loved one had received the necessary support needed to alleviate hunger and thirst. A small proportion (13%) of carers, however, felt strongly that the patient had not received adequate support to address these needs [19].

Respect and dignity

Addington-Hall and O’Callaghan [28] found that most carers (92%) believed hospice patients were ‘always’ treated with dignity within the hospice environment. This received further support from both the National Survey of Bereaved Carers [19] and McKay at al [21] who reported that most carers (97%) believed that patients’ dignity had been maintained. In contrast, only half of the respondents felt that the patients’ dignity was maintained in the hospital setting [28]. The percentage who felt they were always treated with respect in day care and inpatient ranged from 90.4–94.3% [23–27].

Symptom relief

Whilst Addington-Hall and O’Callaghan [28] found no significant difference (p < 0.01) in pain control measures between the hospice and hospital from the perspective of bereaved relatives, differences in the effectiveness of pain relief were noted. Carers were more than twice as likely to report that the patients’ pain had been relieved ‘completely all the time/ completely some of the time’ within the hospice setting opposed to a hospital [28]. The effectiveness of pain relief was a finding which was concurrent with other studies, as carers’ felt that the relief of symptoms far exceeded their expectations [21]. Similarly, Parkes [29] demonstrated how spouses at a hospice were less likely than those elsewhere to worry about a patients’ pain or its relief (9% vs 36% p < 0.05).

The provision of hospice transport

Questions relating to punctuality, comfort and safety of hospice transport were asked in surveys [23–27]. Across all the domains, the percentage of individuals who rated these areas as excellent always exceeded 55% [23–27]. Kernohan et al. [18] discovered that 38% of patients most valued their journey to the hospice and 31% felt that their journey home was the most valued activity.

Visiting hours

Open visiting arrangements were appreciated by both carers and patients [23–27] with carers taking the opportunity to visit the patient every day [29]. Some carers (53%) spent in excess of six hours a day visiting which was comparably higher than the time spent by carers within the hospital setting (9%) [29].

Respite

One reason for referral to day care was to provide respite to carers [18]. McKay et al. [21] demonstrated how respite care was found to be beneficial to a large proportion of carers (85%). Whilst Skillbeck et al. [17] determined that five showed improvements in their relative stress score, three demonstrated no change and four had a negative change in their scores post respite.

Social opportunities

The provision of social opportunities was of considerable value to both patients [18, 31] and carers [17] with the latter confirming that their social life had been considerably affected by their caring role [17]. The hospices helped to facilitate a “quiet time to chat” which was valued by more than half of the patients [18] with a further 42% citing the opportunity to meet with others in a similar situation as a reason for referral [18]. The opportunity to meet people was a recurrent finding as Goodwin et al. [31] found that just under half of respondents believed it to be the most valued outcome within day care.

Overarching finding 1: Equity in the provision of support is an essential value to ensure patients and their family caregivers are receiving timely interventions day or night

Through the integration of both quantitative and qualitative evidence, the value of the Hospice at Home service is irrefutable. For instance, McLaughlin et al. [22] identified that most of the carers within their study believed that the Hospice at Home service had played a vital part in ensuring their loved one remained at home. This finding was further supported by Jack et al. [16] who found that several participants discussed how the service had prevented unwanted hospital admissions. There were, however, varying levels of satisfaction associated with some components of the Hospice at Home service. Whilst some participants left nothing but positive accounts relating to the support provided [16], others reported accounts of abandonment in times of need [12]. These conflicting accounts perhaps demonstrate the inequities of the available services, such as access to out-of-hours support due to geographic variations. A lack of awareness of the services provided by the hospice could also cause the inconsistencies in accounts [12].

Overarching finding 2: Carers appeared to place high value on bereavement support but the reactive nature of the service resulted in carers foregoing support

Carers placed high value on bereavement support but did not always receive it. The most common criticism evident within the literature associated with the bereavement needs of caregivers was the lack of contact from the hospice following the death of a family member [21]. Whilst some respondents felt that the support from the hospice ended abruptly after the passing of their loved one [29], evidence suggests that others were accessing post-bereavement support [30]. The domains of support evident within the included studies ranges from an initial follow-up call to monthly memorial ceremonies [30]. The proactive nature associated with the bereavement follow-up contact evident within some hospices resulted in a large proportion of respondents benefitting from the service [21, 29, 30]. This is in line with caregiver preferences as evidence demonstrates how carers value proactive contact from the hospice [30, 32]. This could also be considered as the minimum level of support necessary to ensure the gradual readjustment to a life without hospice involvement. This gradual adjustment could also be facilitated through the provision of pre- bereavement support whereby interventions delivered prior to death can help enhance the caregivers’ preparedness and acceptance [22].

Overarching finding 3: Carers appeared to place high value on proactive support but they did not always consistently receive it

The value associated with staff acknowledgement of carer needs was clear [7, 12, 16]. In some instances, the value that carers placed on respite care, was especially high during the terminal phase. Some evidence suggests, however that the provision of some support mechanisms were likely to be reactive as opposed to proactive, although not openly acknowledged by carers. This is reflected in the following exert: “the family was beginning to suffer from ‘sitting up’ [22]. This statement demonstrates how the family had already begun to feel the strain associated with caring for a loved one, particularly at night, before support was offered, thus demonstrating the reactive nature of the service.

Overarching finding 4: Choice was a consistent value to patients thus creating a need for a wide range of activities

It becomes apparent that patients place significant value on having access to a wide range of activities, however, since 2005 patient satisfaction seems to have dwindled [23–27]. Within the day-care setting specifically, patients highlighted that the least satisfactory area of service were the activities available to participate in [23]. This becomes a crucial finding as it was not just considered to be the sole reason for referral for some [18] but also one of the critical components of day-care as evidenced by the substantial research focus [18, 33, 34].

Throughout the included studies, reference is made regarding the need to consider the entire person and to meet their physical, emotional, spiritual and social needs. Whilst it is abundantly clear that a patients’ emotional and social needs are being adequately met, in reference to the physical needs, evidence does not go beyond the remit of the alleviation of physical symptoms. This shortcoming left some respondents indicating that they would like access to activities to help keep fit [18].

Overarching finding 5: Carers valued the provision of social opportunities and could therefore benefit from access to official social support networks

Whilst a large proportion of caregivers highlighted that the help they received had a positive influence on their ability to cope [7, 9, 11, 12, 16], there are notable areas for refinement and improvement, especially in relation to the availability of social support. Evidence suggests that caregivers were not accessing official social support networks prior to the death of their loved one [31]. Caregivers are under tremendous amounts of psychosocial pressures, with caregivers regularly discussing exasperated feelings of social isolation as a result of their role [7]. Whilst it is acknowledged that need for social support is often met through the social interaction and relationships with immediate or extended family, for some caregivers, the ability to converse with family members can be challenging [7]. These challenges can range from the difficulties derived from a patients’ physical condition to the altruistic nature of the caregiver themselves, where they do not wish to burden their loved ones [11]. The provision of a support network which extends beyond the family is seen to provide increased benefits [30]. This is further evidenced by Williams and Gardner [35] who demonstrated that caregivers would often take advantage of the social opportunities resulting from shared rooms.