Over one-third of New Zealanders (38%) are dying in residential aged care, bringing demand for end of life care in rest homes to an all-time high.
Already one of the highest rates in the world, these numbers are increasing.
Work by Professor Heather McLeod from the University of Auckland projects that by 2038, New Zealand’s annual death rate will have risen to 46,500, with close to half of all New Zealanders dying in aged care facilities.
This can present challenges to residential care staff who are often unprepared for their role in palliative care provision, says Dr Rosemary Frey, Senior Research Fellow and member of the Te Arai Palliative Care Research Group at the University of Auckland.
At the same time, many facilities are having a hard time recruiting and keeping registered nurses. Many rely on overseas-trained nurses who gain New Zealand healthcare experience in residential aged care but then move on to higher paid DHB jobs.
“They keep losing well trained staff which means it’s difficult to retain a skilled nursing workforce,” says Dr Frey.
She says this impacts the quality of palliative and end of life care.
“Facilities find themselves always reinventing the wheel with new staff who are less experienced in delivering palliative care.”
So how do we help the elderly in residential care die well – not just in the last days or weeks of life, but in the months or more leading up to their deaths?
Part of the solution could be a system change, says Dr Frey – hospices and residential aged care facilities (RAC) working together.
Her recent SHARE study (Supportive Hospice Aged Residential Exchange), in collaboration with Dr Michal Boyd, Dr Jackie Robinson and Prof Merryn Gott and delivered by Mercy Hospice and Hospice North Shore, demonstrates the benefits of hospice and RAC working together through the ongoing presence of hospice nurses to provide better care for elderly at the end of life.
While there are examples of palliative care integration into residential aged care facilities from many hospices, there are few consistent models of care throughout the country, says Dr Frey, which has led to an ‘ad hoc’ approach to the integration of specialist palliative care in RAC.
The SHARE programme is a collaborative model which ensures continuity of service by placing hospice nurses alongside residential aged care staff to better understand the challenge in providing palliative care for residents.
“While there is no magic solution to enhance care delivery in residential aged care, this research is evidence of a first step in that direction.”
The new model includes focused palliative care needs assessment, clinical coaching and role modelling to help RAC and hospice staff put new learning into practice.
“The goal of SHARE is to help clinical staff improve palliative care within residential aged care facilities and to improve specialist palliative care nurses’ knowledge and skill to care for frail older people,” explains Dr Frey.
“It’s a hands-on collaborative approach that builds staff capability through reciprocal partnership and understanding. Even though RAC staff may leave, the hospice nurse is always around for new staff, either by being onsite or at the other end of the phone.”
Dr Frey says that education initiatives developed to date have focused on short training programs concentrating on the traditional “chalk and talk” format. However, there is minimal evidence that nurse and support staff knowledge gained from this format is sustained in the long term. “Adults learn best from direct experience.”
SHARE also helps improve staff confidence in palliative care delivery, including the challenging task of having difficult conversations around end of life care with residents and family members.
“One of the key components of SHARE is that palliative care needs are identified earlier – in the last year as opposed to the last week. This means discussions can happen around what the person or their relatives would like in terms of end of life care. Having people on the same page is critical.”
And it’s not just the physical needs that are discussed; the cultural, psychosocial and spiritual needs and wishes are part of the SHARE goals of care plan, which should be reviewed at least quarterly.
In the goals of care plans observed in RAC during the SHARE study, only half had the cultural and spiritual needs section filled out.
“That aspect needs to be addressed,” says Dr Frey, who is undertaking additional research in this area, in collaboration with Dr Deborah Balmer from the School of Nursing. “It has to be a team response, with social workers, hospice and RAC staff working together.”
Funded by the School of Medicine Foundation, the Freemason’s Foundation and the Health Research Council, the three-year SHARE evaluation was undertaken in collaboration with Mercy Hospice and North Shore Hospice and 20 aged care facilities.
Dr Frey says the response from the hospices and the RAC involved in the study has been very positive.
“We have evidence that SHARE works. People in need of palliative or end of life care are being identified earlier than they would have been in the past, RAC staff have an increased level of confidence in delivering palliative care, and relatives interviewed felt they were kept ‘in the loop’ about their relative’s condition. They knew what was going on and were on the same page as staff.”
She says SHARE is very much a two-way learning process, with hospice nurses saying their knowledge and skill in caring for frail older people improved. (Dr Michal Boyd and colleagues in 2011 noted a lack of gerontology expertise for palliative care specialists from hospice who may have limited experience with the complexities of care for those with frailty and dementia).
“The hospice nurses reported a new respect and knowledge regarding the care that is undertaken in residential aged care.”
Relationships between hospice and RAC staff, and consequently facility staff and residents and their families, are the key to the success of the project, says Dr Frey. “It’s not sufficient to do a one-off education session – you need the sustained presence of a hospice nurse in a facility. Relationships are key.”
Simon Wallace, Chief Executive of the New Zealand Aged Care Association, says while Dr Frey’s report is helpful, it’s important to note the RAC industry and hospice have been working together for a number of years to improve the quality of palliative care for residents.
“While the relationship has been ongoing, in 2015 the government of the day put a significant investment into palliative care for hospice to work closely with RAC and many of those initiatives have been bearing fruit over the past few years.”