Easing the journey to death: palliative care nursing has undergone a revolution in the past two decades. Nelson Hospice and palliative care nurse Gael Deaker have been part of the changes.

There's a calmness as you enter the Nelson Hospice. The ambience is far removed from the sometimes frantic air of a hospital ward. At reception there are raffle tickets for a load of firewood, and letters to Health Minister Pete Hodgson calling for funding for fair pay for hospice nurses are at the desk for visitors to sign--reminders that adequate funding is a constant struggle for hospices around the country. The purpose-built four-bed unit, which shares three rooms with the adjacent not-for-profit private surgical hospital, opened in 1999, some 12 years after the first patients were accepted into Nelson's hospice-at-home service. As with many hospices around the country, community demand was a driving factor in its establishment and community support a decisive factor in its continuation. In the early 1980s, the writings of Elizabeth Kubler Ross about the stages of dying were attracting attention and the hospice movement was gaining momentum. As hospice chief executive Bev Parkes said, there was a groundswell throughout many communities in New Zealand. "People were wanting better services, better symptom control and better family support for those who were dying."

Hospice-at-home service established

Parkes, who had been drawn to cancer care from her nursing student days when she had been disturbed at the treatment of dying patients, and a physician at Nelson Hospital, John Emmanuel, had visited the United Kingdom and believed the hospice-at-home service would best meet the Nelson community's needs at that time. A bequest in 1985 from a woman who had died of breast cancer, Sally McCormack, assisted in realising the dream of a hospice service. Throughout the '80s, the hospice-at-home service developed, with a full-time nurse and part-time education and volunteer coordinator appointed in 1986. In the following years, the service expanded further with the appointment of administrative staff, a bereavement co-ordinator, a social worker and more nurses.

After years of continued lobbying a hospice unit was opened in 1999 on land leased from the private hospital, at a peppercorn rental. Community services relocated to the Manuka Street site as well. That year also saw the Nelson Region Hospice Trust, established in 1989, take over full responsibility for the service from the Nelson Marlborough District Health Board. The service continues to expand, with the appointment of a rural liaison nurse, based in Golden Bay, late last year and hospice bed numbers will be boosted to eight later this year. There are plans to establish an outpatients clinic once the new wing is operational.

No hospice in the country could run without volunteers and the Nelson team has grown to more than 200. They work in different parts of the service: some with families at home, eg giving the primary caregiver a break; in the hospice doing whatever is required, eg re-stocking linen, taking a patient to the movies, or simply talking with patients; providing administrative support; the "bed team" which moves the special electronic beds in and out of homes as required; and the biography volunteers who record patients' stories. "If we didn't have volunteers we wouldn't be able to offer the quality of service we do. They are wonderful people who are so supportive of the staff," Parkes said.

The hospice has around 25 admissions a month, with two registered nurses (RNs) on each shift. Twenty-two nurses, all part-timers, make up the staff of the hospice and one RN position rotates through the inpatient unit (IPU) and the community.

Four RN care co-ordinators are the anchors for the service in the community, with all staff rostered on an on-call basis.

Gael Deaker has worked in the IPU since it opened. Since her training days at Nelson Hospital in the early '70s, Deaker has witnessed a revolution in the care of the dying. "When I was a student on the surgical wards, there would be talk of an 'open and close' operation and of the 'Big C', but it was never talked about openly. Patients were often kept in the dark about their diagnosis. People would say 'We can't tell Mum, it would kill her if she knew;" Deaker said.

Something better for cancer patients

She wanted something better for cancer patients and her first trip overseas was expressly to undertake further oncology nursing training. London's Royal Marsden Hospital was a leading oncology nursing centre and Deaker completed the year-long course there. "That was an enormous learning experience. The hospital had a terminal care ward and working there cemented my desire to work in oncology."

She returned to Nelson in 1981 and worked in the developing chemotherapy outpatients' clinic and was then appointed to the newly-created position of oncology nurse, based in the district nursing service. "This involved follow-up and support of patients after chemotherapy and for those returning to Nelson after radiotherapy. There was no palliative care service at that time. Terminal care was provided by the district nurses, with GPs responsible for symptom management. By then, people were more open to talking about their cancer but didn't like to use the word. People referred to tumours or growths or would say 'things aren't looking too good;" she said. Before the development of the syringe-driver pain pump in the early '80s, district nurses would visit patients every four hours to provide regular pain relief. And if a person was in the terminal stages, the district nurse would visit throughout the night.

Deaker and many other others saw the need for specialist home-care services and that led to the development of the hospice-at-home service. Deaker left nursing to have her first child and then returned to district nursing. Once the hospice was built she applied for a position and was one of the inaugural IPU nurses. Deaker did not find the transition to hospice care difficult and continues to be amazed at the acceptance of most patients and their families. "Journeying with people to a peaceful death is one of the great rewards of this work, as is caring for their families on that journey. In the majority of cases people do achieve a peaceful death. Usually there is good symptom control which allows them to maintain a quality of tile until their death, which is the essence of the hospice philosophy."

A specialist oncologist and four GPs with palliative care training provide the medical cover at the hospice.

Working at the hospice gives Deaker a greater appreciation of life. "Some of the situations we deal with are really really sad and it makes you realise the importance of appreciating the life you have. It has also given me more of an acceptance that there is a finality to life."

Strong professional boundaries are important in palliative care. "We feet for people and their pain and can cry and laugh with them. They share a tot of things with us, but we have to maintain some emotional detachment. It is part of your role as a nurse to be aware of your boundaries. We can all sense when we are becoming too emotionally involved and will take a break from caring for that particular person. We can share our feelings with colleagues and we all have access to professional clinical supervision,and there is the opportunity to discuss any issues at the weekly multi-disciplinary meeting."

One of the most difficult aspects of the work can be coping with deaths where symptom control has been difficult to achieve or where there is deep disharmony within the family. "Our work can be quite physically demanding as well as emotionally draining so it is important to maintain a balance between work and our lives outside work. I try not to take my work home. I have a full life outside work and that certainly helps."

The hospice employs a chaplain who is also a counsellor and who is available for staff.

The day is shaped by patients' needs, with medication the only routine. Family and friends come and go throughout the day and night and can stay overnight. Patients choose how to pass their time. The physical surroundings are homely and comfortable.

All after-hours calls are triaged through the IPU and, if the unit is not too busy, one of the nurses will visit patients in the community. The nurses are rostered on call from 5.30pm to 10.30pm for two or three days every four weeks. If a community patient requires urgent attention during the night, the IPU nurse will usually go to the patient. This is possible because there is extra RN cover in the adjacent private hospital.

As we talk, a family member comes and says her grandmother wants some morphine. Deaker and a colleague draw up the morphine elixir and administer it. An understanding of medications, their use and side effects, of "multi-pharmacology", ie the combination of drugs needed to attain symptom control, is an important part of the a palliative care nurse's knowledge.

Deaker lists compassion as one of the most important qualities needed in a palliative care nurse. "We need knowledge and grounding in all aspects of palliative care but compassion is also a necessity. A sense of humour is essential. And you must be a good listener, able to pick up on cues and to have empathy. Being an advocate for patients and their families is also very important."

She and her colleagues keep abreast of developments in palliative care through studying towards the postgraduate certificate in palliative care from Whitireia Community Polytechnic, with some studying for their masters. Hospice New Zealand provides some inservice education, with a monthly "breakfast lecture" delivered to hospice staff throughout the country via a nation-wide teleconference.

That palliative care is now a nursing specialty, with its own education pathway, is one indicator of just how much things have changed since Deaker first began working in oncology. Another is the openness with which many people now face their illness and impending death. "Discussion is so much more open now. Some patients plan their own funerals, right down to the details of the service, the music, their plot. Local funeral directors wilt visit patients here to talk about funeral arrangements. That makes it so much easier for their loved ones afterwards."

Deaker believes the greater openness is due to increased community awareness, thanks to the hospice movement, to having an actual building and to ongoing fundraising efforts. "We have tremendous support from the Netson community. So many people have had some contact, or have known somebody who has had contact with the hospice."

The local DHB provides 53 percent of the hospice funding, well short of the 70 percent target of the former Health Minister Annette King. The shortfall means $900,000 annually has to be found from other sources such as grants and fund raising in the community. "This community is very supportive but it is not a bottomless welt," according to chief executive Parkes. Deaker, an NZNO delegate, was out on Nelson's main street collecting signatures during the hospice days of action in March (see story p18). "We got tremendous support which was very affirming but funding is always going to be an issue. It wilt be great if we get pay parity, but pay is not the only issue. If it was, we'd all be up the road [at Nelson Hospital]. But I have a real interest in my work, I have great work colleagues, we have very supportive doctors and I continue to take courage and inspiration from many of the people I meet."