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 2003–2007, 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-hour hospital care, rest home care, and dementia/psychogeriatric care (4). The RAC ownership model within New Zealand is predominated 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 care (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). Hospice 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 for a chronic non-malignant illness or age-related diseases, rather than specific life-limiting diagnoses (10). It could be argued the RAC facilities are one of the main provider of palliative care often without the support of Hospice (3, 10, 11). In order 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 in New Zealand is 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). Advanced 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 residential aged care staff. SHARE included focused palliative care needs assessment, clinical coaching and role modelling by hospice palliative care nurse specialists which sought to support RAC registered nurses (RN’s) and health care assistants (HCA’s) to put new learning into practice (20). SHARE used a reciprocal model enabling the palliative care nurse specialists to also learn from RAC staff about the palliative care needs of older adults with chronic conditions(20) The components of SHARE include: clinical coaching by hospice palliative care nurse specialists, support with the development of care plans that reflect the palliative care needs of residents with a life-limiting illness, role modelling of conversations with families related to palliative care, and debriefing amongst all RAC staff following a resident’s death. The building of relationships between Hospice and facility staff, and consequently facility staff and residents and their families, underpins successful implementation of the intervention(21).
The SHARE intervention was implemented over a year in 20 urban RAC facilities across two district health boards (DHBs) in Auckland. This report 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(21).
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 (22, 23) Previous research has identified shortfalls in the management of the transition to palliative care in RA from the family perspective (24). In particular, research has identified RAC staff members having difficulty communicating information about residents' likely prognosis to family members (25), as well as engaging families in care planning(24). Additionally, families have expressed dissatisfaction due to a general practitioner’s' inaccessibility and/or changes in the general practitioner responsible for the care(26). These difficulties create barriers to the formation of a ‘partnership’ between staff and family which could enhance the quality of care (27), of particular importance at the end of life. It is the experience of palliative care delivery for residents and their family members that the SHARE intervention was designed to improve and therefore is a fundamental aspect of SHARE as a whole. Exploring bereaved family perceptions of palliative care delivery for their relative during SHARE is key to developing improvements in the intervention.