Background
New Zealand, like many developed countries, has an ageing population. By 2035, it is expected that almost 25% of New Zealand’s population will be over the age of 65 [
1]. Increasing age often includes multi-morbidity and frailty and an increasing need for more comprehensive and complex care, especially at the end of life [
2]. From 2003 to 2007, 38% of deaths in New Zealanders aged over 65 were in residential aged care (RAC) facilities [
3]. In New Zealand (Aotearoa), the term RAC covers a range of long-term aged care services, based on level and type of care need including 24-h hospital care, rest home care, and dementia/psychogeriatric care [
4]. The RAC ownership model within New Zealand is dominated by large privately owned facilities [
3]. At the end of 2019, New Zealand had 39,000 residential aged care beds [
1]. This number is only expected to increase, with an estimated 52,000 RAC beds being required by the end of the decade [
1]. Overall, if current patterns continue, the majority of deaths for people over the age of 85 will be in RAC, accompanied by increased complex geriatric, frailty, and multi-morbidity care requirements being more complex as time progresses [
5,
6]. As a result, there is a growing burden for New Zealand RAC facilities to provide good quality palliative and end of life care [
7].
Palliative care is defined as care for a person with a life-limiting illness that aims to optimise the quality of life for the person, as well as support their whānau (family) caregivers both during illness and after death [
2]. Palliative care is one component of an overall health care plan and may be more needed than a purely treatment focused plan at the end-of-life [
8]. Palliative care is delivered by both generalists as a part of standard clinical practice by any healthcare professional and by specialist palliative care professionals who have undergone specialist training in palliative care [
2]. Hospices provide both in- and out-patient, palliative care for those with a terminal or life-limiting diagnosis [
9]. However, for many older adults in RAC, palliative care will be required in the context of multi-morbidity, in particular chronic non-malignant illnesses [
10]. It could be argued the RAC facilities are one of the main providers of palliative care, often without the support of Hospice [
3,
10,
11]. For RAC facilities to deliver high-quality palliative care, facilities require adequate resources, adequately trained staff, and access to specialist palliative care [
2]. However, RAC facilities in New Zealand are faced with the challenges of organisational conditions characterised by increasing workload, low staffing levels, and high staff turnover [
12].
In New Zealand, as in other developed countries, the growing patient population means there is an urgent need to invest in the development of “generalist palliative care” [
13]. As defined by the New Zealand Ministry of Health [
13] generalist palliative care is care “provided for those affected by life-limiting illness as an integral part of standard clinical practice by any health care professional who is not part of a specialist palliative care team”. However, health professionals often feel ill-prepared to provide effective palliative care, especially surrounding the discussion of death and dying, and being able to communicate effectively with families during the end of life period [
4,
14,
15]. Advance Care Planning (ACP) is one example of these hard to have conversations, which involves shared planning between the RAC resident, their family and the RAC health professionals on the important values and wishes for the end of life, and includes incorporating these into the resident’s care plan [
4]. Having healthcare professionals unskilled in these areas can compromise the care provided to residents and their families, as well as create added stress during the end of life [
14,
15].
Traditional educational interventions (e.g. short training courses, online modules) have had varied success [
10,
16,
17]. In New Zealand, healthcare professionals within RAC settings work within a context of too few staff and high turnover [
17]. The burnout that results from these conditions, can negatively impact the uptake of these didactic courses [
18]. Furthermore, didactic courses have proven to be unsuccessful in producing sustained knowledge transfer [
4,
18,
19]. The Supportive Hospice and Aged Residential Exchange (SHARE) intervention sought to fill the gap in palliative care education for RAC staff.
SHARE involves the following activities led by a hospice nurse specialist from the hospice: 1) weekly visits over 1 year to each RAC. At the initial visit, all residents were reviewed to identify those with palliative care needs using the Clinical Frailty Scale [
20] and the Supportive and Palliative Care Indicators Tool (SPICT) [
21] in collaboration with a RAC nurse. The list of residents with palliative care need became the focus of discussion for subsequent visits; 2) clinical coaching and role modelling of palliative care and gerontology skills and knowledge (this is a reciprocal process of shared learning between hospice and RAC staff); 3) in partnership with staff in RAC learning needs concerning palliative and end of life care were identified and a program of teaching developed by hospice; 4) guidance and role modelling of advance care planning conversations with RAC nurses and 5) debriefing with RAC staff surrounding resident deaths [
22].
SHARE builds on the strengths of current palliative care practice in RAC by combining new learning with existing skills and knowledge. SHARE also improves specialist palliative care nurses’ knowledge and skill in gerontology by working collaboratively with the RAC nurses. A qualitative analysis of written reflections by the specialist palliative care nurses indicated that sustained relationships with RAC staff (registered nurses, healthcare assistants) was a key factor supporting the implementation of this palliative care educational intervention [
4]. The SHARE model of care thus provides a mechanism to support knowledge exchange between hospice staff and clinical care staff to improve palliative care delivery within RAC facilities.
The SHARE intervention was implemented over a year in 20 urban RAC facilities across two district health boards (DHBs) in one urban centre. This paper forms part of a larger mixed-method evaluation of SHARE which included quantitative assessments of staff palliative care delivery confidence, a records review of residents identified as benefitting from a palliative approach to care, as well as qualitative interviews with staff, general practitioners (GP’s), facility managers and bereaved families [
23].
Role of families
Families play a key role in a resident’s ongoing care and also act as the closest link to residents’ views of care received [
24,
25]. Previous research has identified shortfalls in the management of the transition to palliative care in RAC from the family perspective [
26]. In particular, research has identified RAC staff members having difficulty communicating information about residents’ likely prognosis to family members [
27], as well as engaging families in care planning [
26]. Additionally, families have expressed dissatisfaction due to a general practitioner’s inaccessibility and/or changes in the general practitioner responsible for the care [
28]. These difficulties create barriers to the formation of a ‘partnership’ between staff and family which could enhance the quality of care [
29], of particular importance at the end of life. The SHARE intervention was designed to improve palliative care delivery for residents and their families. Given the key role that family members have in a resident’s care, this study explored changes in bereaved family perceptions of palliative care delivery. This study sought to identify potential areas to be addressed during subsequent implementations of SHARE.
Discussion
Findings indicated that good communication can play an integral role in the family experience of palliative care for their relative [
40]. Poor communication has been linked to detrimental outcomes for families including increased difficulty in decision-making and a lack of preparedness for a relative’s death, impacting on bereavement [
41,
42]. At the start of SHARE and consistent with previous research [
43], bereaved family members of RAC residents, felt uninformed about the residents’ health and felt that they were not given information on what to expect at the end of life. In line with previous research [
26,
44], bereaved family perceptions of quality of care appeared improved at the finish of SHARE by earlier communication among residents, family members, and health professionals about prognosis, options for care, and assessment of support and coping resources.
Interviews after a year of SHARE indicated that more communication and collaboration between Hospice and RAC facilities led to positive responses by families regarding the quality of care for their relatives [
4,
8]. Reflecting previous research [
8] a poor relationship between hospice and RAC facilities was a source of family concern before SHARE. After a year of SHARE, the collaboration between hospice and RAC promoted bereaved family members’ confidence in the care of their relatives. Post-SHARE none of the families expressed dissatisfaction with the communication processes and all commented that the actual end of life moments were peaceful and calm. This is a change from interviews before SHARE which indicated a need for improved staff communication. This change may be attributable to the increased attention that has been placed on end of life and improved documentation by the nursing staff, as well as modelling of advance care planning conversations by the hospice nurse specialists. Recall that after SHARE many family members reported making advance care plans, alongside an RN. However, while SHARE includes debriefing of staff following a death, future implementation of the intervention should include extending RAC support to relatives post-bereavement as well as RAC wide post-death rituals and practices [
45].
Communication with GPs, as perceived by bereaved family continued to be an area of difficulty. A recent study looking at the experiences of family members as their relatives transitioned to palliative care supports these results [
24], that better communication at the end of life, especially with GPs, would have improved their relative’s experience at the end of life. However, evidence suggests that for families or RAC residents, contact with GP’s is limited [
10]. There are many potential reasons for bereaved families’ expressed dissatisfaction in communication with GPs. Firstly, time and cost restraints preclude communicating at length with families [
46,
47]. Many of the cases of poor communication and care from GPs from families in this study focused on how communication was handled, and the extent to which GPs showed respect for residents and families. Recent research has found that training in the care of dying RAC residents consists primarily of informal mentoring among GP’s [
47]. Literature suggests the lack of palliative care training available for GPs, compounded with time pressures, leads to a lack of effective communication skills at the end of life, and can negatively impact the level of care felt by residents and their families [
48]. It should be noted however, that SHARE was an intervention directed at improving the palliative care knowledge and skills of the RAC nursing and health care assistant staff and not GP’s. Future implementations should incorporate greater involvement of GP’s from the start of SHARE.
While care quality continued to be seen to be good, bereaved families continued to express concerns about low staffing levels and staffing changes after a year of SHARE. Poor staffing levels, high turnover, and associated time pressures can threaten the continuity of care within RAC [
49]. Since relationships between residents, families, and staff are at the heart of good palliative care, time pressures and increasing staff turnover created barriers to the formation of enduring relationships between families, residents, and staff. Continuing family concerns over the stability of the workforce may impact upon both confidence in RAC staff and the sustainability of the intervention. The continued presence of a hospice nurse specialist mentor takes on even greater importance given the growing resourcing and staffing issues within the sector. Relationships between hospice and facility staff, and consequently facility staff and residents and their families are seen as key to maintaining the successes of the intervention.
Strengths and limitations
Only the views and experiences of bereaved family members are included in these findings. The views of registered nurses, GPs, healthcare assistants, and hospice nurse specialists have been presented elsewhere [
4,
47,
50]. Nevertheless, the experiences of these bereaved family members provide both a unique insight into the benefits and challenges to the implementation of SHARE [
51]. Interviews were carried out within 12 months of a relative’s passing to both lessen the burden on the interview participant, and to ensure they could recall details from their relative’s passing [
52]. A further limitation was the absence of Māori and Pacific Island representation. It is well established that Māori and Pacific peoples suffer historic and institutional health disparities [
53]. In a New Zealand context, Māori and Pacific Island perspectives and experiences are imperative to ensuring the SHARE project has equitable outcomes.
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