Aged-care facilities face challenges in providing quality palliative care: as New Zealand's population ages, more people will die in aged-care facilities. These settings face considerable challenges in providing good palliative care for their dying residents.

Providing palliative care to residents of aged-care facilities is an increasing need within our health services. With an aging population--13 percent of the population will be aged over 65 by 2010, rising to 25 percent by 2051 (1)--this need will continue to increase.

In the last two decades, aged-care facilities have had to assume greater responsibility for the dying. (2) But the problems besetting the sector--lack of funding, staff shortages, particularly of registered nurses (RNs); high staff turnover; poor pay; limited education opportunities; inadequate access to after-hours medical care--make the provision of optimal palliative care within rest-homes a continuing challenge. Chief executive of Hospice New Zealand Mary Schumacher says people must receive quality palliative care no matter where they are. "But there are real issues with providing quality palliative care in aged care, where there are poorly paid staff and high staff turnover. There are very committed and dedicated people but very limited resources."

Specialist palliative care services are meeting the challenge to provide quality palliative care in aged-care facilities in their communities in a variety of ways.

In 2002, Te Omanga Hospice in Lower Hurt and the Hutt Valley District Health Board (DHB) began a partnership to enhance the "knowledge, understanding and acceptance of palliative care by health professionals in the Hutt Valley" (1) As part of the initiative, a palliative care nurse specialist educator Kate Gellatly was appointed. Something of a pioneer, she has been instrumental in developing palliative care education for aged-care workers. Hospice New Zealand developed two courses nationally, one for care assistants and one on syringe drivers, thanks to the work of Gellatly and a number of palliative care nurses throughout the country. Gellatly's main focus is now on the 24 aged-care facilities, with a patient population of around 900, in the DHB region. After consulting aged-care managers, lack of resources, education and after-hours care were identified as obstacles to providing optimal end-of-life care. "Caters do all the hands-an caring in aged-care facilities and that raises many issues. The intent to provide good care is there and I have great admiration for those working in aged care and for their contribution to the care of the elderly, but there are unskilled and untrained workers in some facilities. There are many constraints to providing good palliative care. The focus in aged care is on quality of living but then the focus has to change to quality of dying, which includes psychological, spiritual, emotional and family care. Our education with carers is focused on what they can do to make a difference."

The importance of communication

This includes initial education in care of the dying; the importance of communication and liaising with other caregivers to arrange extra time with the patient; the value of presence--"a quick pop in, even in a busy schedule can help in making a patient not feet abandoned"--and making the patient and family feel they matter and are important. Registered nurses in aged-care facilities had to be proactive in ensuring all was in place for the dying person, eg pre-planning and organising carers to be available, if possible, Gellatly said. GP input was vital in supporting the RN. She believes awareness of the importance of palliative care has increased and sees providing optimal end-of-life care in aged-care settings as a collaborative venture, rather than hospice staff being seen as "the experts". A significant challenge is providing care for "the fit and the frail" within the one facility. "In aged-care facilities it is sometimes difficult to know when a person is dying and when to begin palliative care, whereas people cared for within hospices normally have a more defined dying trajectory."

Gellatly was the driver for a new form of funding for those dying in aged-care facilities. When funding for disability support services for the elderly was transferred from the Ministry of Health to DHBs in 2003, she put a submission to the Hurt Valley DHB calling for funding for additional nursing services in aged-care facilities to provide individualised optimal end-of-life care to dying patients and to prevent their admission to hospital. The DHB accepted the proposal but ironically some aged-care facilities simply cannot get the extra staff needed to provide the extra palliative nursing care. Gellatly said there was also a need to communicate with the owners of aged-care facilities. "That is often where the barriers are in terms of resources and releasing staff for education. More understanding by owners about the extra care needed for some patients at the end of life is vital for future developments in this area." She believes aged-care facilities should be required to have a palliative care policy, which would then enable quality to be assessed. A 2001 survey of aged-care facilities and general practices asking them about their palliative care needs, prompted Arohanui Hospice in Palmerston North to expand its community team with the establishment of palliative care coordinator rotes and a community nurse educator. Bridget Marshall is the community nurse educator, a rate which provides an opportunity to meet the specific needs of the aged-care sector. She has developed several education opportunities specifically for aged-care workers. These include a resource network group which meets every two months with representatives from 17 aged-care facilities; workshops for primary care nurses; and delivering the syringe driver courses for RN and ENs and the care assistant courses. Marshall was on the Hospice New Zealand education subcommittee which developed the courses.

The specific educational issues for staff working in aged-care facilities are the increasingly complex care residents require, with many residents having multiple co-morbidities. "The nature of work in aged care is slowly changing, with the older person and their family staying within the organisation for a shorter time. Those being admitted have complex needs, and increasingly people are being admitted for end-of-life care," Marshall said.

Specific education includes guidance on symptom control, especially pain assessment and management, communication with patients and families, grief and loss, recognising dying, and end-of-life care.

Arohanui Hospice is also piloting the Liverpool Care Pathway (LCP) for the dying patient. The pathway was developed to transfer the hospice model of care into other care settings and is a multi-professional method of documentation that provides an evidence-based framework for the dying phase. (3) It is being piloted in three aged-care facilities and in two acute care areas at MidCentral DHB. A LCP facilitator has been employed to help implement the programme and to educate staff on how to use the LCP documentation and on the palliative care approach. Marshall is also involved in this education.

The LCP research involves looking at staff perceptions of end-of-life care before and after the implementation of the LCP. The research is not yet completed but, anecdotally, staff were very positive about the implementation of the LCP, Marshall said.

Arohanui Hospice also has a partnership programme with Compass Health, formerly the Manawatu Independent Practice Association. The core of the programme is education of both GPs and practice nurses, and more than 70 percent of practices are involved. An informal survey last year revealed increased knowledge and confidence in managing patients and familiarity and communication with hospice staff as positive aspects of the partnership.

Arohanui Hospice's work in the community seems to be bearing fruit. In 2003, 10 percent of hospice admissions came from aged-care facilities but this had dropped to three percent last year. "I'm not sure if this is statistically significant but it shows a trend that those in aged-care facilities are not being admitted to hospice as frequently. One could assume this is due to staff managing patients well in these residences, with more proactive support from the palliative care co-ordinators, underpinned by the education programme."

Marshall praised the work of RNs in aged care. "They work incredibly hard and often in isolation. They are often very passionate and committed to the work they do, with tittle recognition and remuneration compared with other sectors of the health system."

There is a growing awareness of the palliative care needs of those in aged-care facilities, according to the manager of Waikato DHB's palliative care services, Margaret Stevenson. But short staffing, high staff turn-over and limited support in terms of time and money for education, mitigate against the delivery of quality paliative care. "This is not a reflection of the skills or motivation of those staff but an awareness of the difficulties in recruiting and retaining staff. The rapid staff turnover in some aged-care facilities makes it difficult to feel there is a growing knowledge base." The recognition of the very specific needs of patients with dementia, for example, indicated the constantly growing demands on staff to identify and manage the palliative needs of a wide range of older people. "This group often has a wide variety of chronic health complaints that need to be managed through the palliative phase, which further increases the need for specific education of health professionals." In the Waikato region, hospice nurses and the DHB service provide input to aged-care facilities. "We see patients who have been referred to us. One of the nurse specialists visits local aged-care facilities reasonably regularly to see known patients, meet staff and encourage discussion or answer questions related to care. We also offer education opportunities as resources allow. Across the region, we endeavour to visit when in different areas, to build relationships to encourage staff to contact us for advice and assistance and to offer to visit for education purposes," Stevenson explained. Hospice New Zealand's education packages are delivered jointly by the DHB service and the local hospice.

Stevenson believes palliative care needs in the aged-care sector will be best met through educcation, support from specialist teams, and the ability to attract and retain appropriately qualified staff. She cites the Te Omanga and Arohanui models as successful ones and hopes similar projects can be undertaken in Waikato. Chair of NZNO's national gerontology section, rest-home manager Beth Kelly, said it was very important for aged-care staff to have good palliative care skills. "In my experience, most facilities have wonderful relationships with their local hospice staff who provide advice, support and education."

She said the Guardian Healthcare Group, which owns the rest-home she manages in Whangarei, provides nationally consistent training modules on cultural and spiritual awareness for staff in its facilities throughout the country and says palliative care education is included in the training programmes of most rest-homes and private hospitals.

Late last year, 70 RNs attended a one-day palliative care seminar in Whangarei, organised by the Tai Tokerau branch of the national gerontology section.

Staff in rest-homes had always cared for the dying but the palliative care movement meant there was now so much more they could do to help people towards a peaceful death, compared to 20 years ago, she said. Kelly believes experienced aged-care RNs can recognise when a person has entered the dying phase.

Rest-homes can care for the dying well

Staff at the rest-home she manages "do dying very well, particularly our Maori staff, who have a real respect and compassion for the dying". She acknowledges that is not always the case in aged-care settings. "There are varying degrees of skill and dedication but most rest-homes want to do it well. Rest-homes are the ideal places to care for the dying. With adequate training for staff and support from hospices, we can do it very well. Most rest-homes want to do it well but staffing levels and funding impact on how well someone who is dying is cared for." Gellatly sees rest-homes as the "hospices of the future" and believes blending the two nursing specialties--palliative care and gerontology--and increased funding to ensure adequate staffing, will ensure the best possible palliative care for those for whom aged-care facilities are home.

References

(1) Ministry of Health (2006) Health of Older People Information Strategic Plan: Directions to 2010 and Beyond. Wellington: Ministry of Health.

(2) Gellatly, K. (2003) Submission to the Hutt Valley District Health Board regarding aged-care funding. (Unpublished) Lower Hutt: Te Omaega Hospice.

(3) Jack, B.A., Gambles, M., Murphy, D. & Ellershaw, J. E. (2003) Nurses' perception of the Liverpool Care Pathway for the dying patient in the acute hospital setting. International Journal of Palliative Nursing; 9:9, 375-381.