Meeting the demands of rural palliative care nursing: providing palliative nursing care over a large rural area poses very particular challenges.
Palliative treatment (Management)
Palliative treatment (Demographic aspects)
|Publication:||Name: Kai Tiaki: Nursing New Zealand Publisher: New Zealand Nurses' Organisation Audience: Trade Format: Magazine/Journal Subject: Health; Health care industry Copyright: COPYRIGHT 2011 New Zealand Nurses' Organisation ISSN: 1173-2032|
|Issue:||Date: May, 2011 Source Volume: 17 Source Issue: 4|
|Topic:||Event Code: 200 Management dynamics Computer Subject: Company business management|
|Geographic:||Geographic Scope: New Zealand Geographic Code: 8NEWZ New Zealand|
How do you provide a palliative care nursing service to a
population of 30,000 and growing, clustered in small towns and scattered
across remote rural areas in a region of more than 11,000 square
kilometres, much of which is mountainous, with just a handful of
district nurses and one dedicated palliative care bed?
That's the considerable challenge facing the nursing services manager (NSM) for Central Otago Health Services Ltd, Debi Lawry, and district nursing charge nurse Carolyn Dobson, both based at Clyde's Dunstan Hospital. There's been a Dunstan Hospital since 1863 but the current facility bears scant resemblance to a rural "cottage hospital". It was extensively refurbished in 2005, with a new wing added, which houses the 24-bed acute medical unit, Vincent Ward. This includes a three-bed high dependency unit, a two-bed assessment unit and a one-bed palliative care unit. The palliative care bedroom, which has an ensuite, opens onto an enclosed garden and affords glorious views of the surrounding countryside. A family room opens off the bedroom and has full kitchen facilities, a sofa bed, two lazy-boy chairs, a small table and a flat screen television.
The hospital is the hub of a wide range of services to its far-flung population. Central Otago Health Services Ltd is the community-owned, not-for-profit company responsible for providing these health services, largely funded through Southern District Health Board contracts.
Lawry has been the NSM since 2007, a migrant from Auckland, now living in Wanaka. Before taking up her role at Dunstan Hospital, she had a nursing leadership position at Dunedin Hospital and in Auckland was the clinical nurse consultant for the neonatal unit.
Palliative care at the hospital is provided through a team of enrolled nurses (EN) under the direction and supervision of the charge nurse or associate charge nurse. "We have four very experienced ENs who provide continuity of care for our palliative patients," Lawry said.
How is it that ENs provide the backbone of the in-patient palliative care nursing service? "Well it has evolved over time. One of the ENs, Anne Moore, has had a very long-held passion and interest in palliative care, including completing some postgraduate work. Together with the other ENs, she provides a practical, caring and supportive service to palliative patients and their whanau," Lawry explained.
The hospital does not provide hospice-level care. "It is a real issue for us - how do we provide the support the hospice in Dunedin provides for patients? We provide symptom control and end-of-life care. But we can't take on patients for extended periods of time because we are very much an acute medical ward. So sometimes patients who need palliative care for extended periods have to go to Dunedin, which is three-and-a-half hours away for a Wanaka-based patient--that's a major dislocation."
An Otago Community Hospice co-ordinator, Catherine Lynch, spends a good deal of time in Central Otago and offers support to the inpatient and community palliative care nursing services and to the region's GPs.
The hospital has a palliative care committee, which decides how donated money should be spent. "The community has a real sense of ownership of the hospital so it is very well supported through donations, hence we have excellent palliative care equipment and patient information and education resources," Lawry said.
But Lawry would really like more community palliative care staff. With just 4.5 FTE district nurses, the time requirements of quality palliative care, the challenge of the region's geography and weather, and the need to maintain excellent communication with the region's 26 GPs in seven medical centres, which can be compounded by distance, providing quality palliative care nursing is always going to be demanding.
In Lawry's ideal world, she would love to employ a palliative care nurse specialist, with advanced education, to work with patients, families and hospital and community staff. "This nurse could also link with the other agencies involved, with GPs, provide high-level clinical support and promote consistency of care, and oversee the needs of those in the community. I think it is a critical position. Our district nurses do a brilliant job but their workloads are already really full. Our community misses out, as there are no longer-term hospice beds locally and sometimes that is what these people need."
There is an average of two palliative care patients every week in the region.
Lawry says despite their geographical isolation, nurses have access to good education through a variety of means. A Christchurch-based palliative nursing specialist, Anne Morgan, runs study days; a Dunedin Hospital palliative care nurse specialist, Helen Cleaver, provides education sessions via a telehealth service; a retired local GP, Hettie Rodenberg, who worked with Elizabeth Kiibler Ross, has worked with the staff, emphasising the importance of staff caring for themselves; the mobile surgical services bus, which visits every few weeks, also delivers telehealth education. A 0.3 FTE nurse educator organises all the education. Whitireia Community Polytechnic also provides week-long block courses towards postgraduate study. And Lawry says there's a great deal of knowledge and experience among the very stable staff.
Lawry and her staff continually work to improve the service. An evening service is being developed at present. "We are developing the criteria for the service at the moment. If a family needs a district nurse visit to ensure everything is as good as possible for the night, we want to be able to provide one. It had started in an ad hoc way, with a nurse popping in on their way home to check on a patient. We are not entirely sure how we are going to manage such a service. How do we do it in Wanaka, where there are only two nurses, who have a hugely busy workload as it is? How do we do it when it is only required intermittently? These are interesting dilemmas we are trying to work through."
Dobson is a rural representative on NZNO's College of Primary Health Care Nurses and chair of its policy and communications standing committee. She is also part of a strong southern district nurses' network and has tapped into her many contacts for suggestions about setting up such a service. Lawry says ideas have been "pouring in" about how best to provide the evening service.
Co-ordinating community palliative nursing care falls to Dobson, who works four days a week and often plugs the gaps in the palliative service. She's been in the role for seven years, having worked in a number of rural hospitals and as a practice nurse in Alexandra for seven years. "This role is totally different from the nursing I had experienced. It has made me realise what challenges rural district nurses face daily. They are often working and living in the same community, they are in people's homes for all manner of reasons and they have to be a jack of all trades--I see them as generalist specialists."
How the tyranny of distance impacts on their work is exemplified in a 200-kilometre round trip a district nurse made each day on a weekend to flush a PICC (peripherally inserted central catheter) line. Or a nurse travels 50 kilometres, only to discover the patient does not have enough drugs at hand and the nearest pharmacy doesn't stock the required strength of morphine. "Every car has a palliative care box but we don't have access to drugs, so sorting out those issues can take a lot of time," Dobson said. "Being organised and foreseeing such problems helps, but streamlining everything, including all the communication needed, can be quite difficult." She estimates between 0.4 and 0.6 FTE district nursing time is devoted to travel.
The hospital runs a chemotherapy clinic and two of the district nurses also work there. Often staff have been working with a patient on their cancer journey before the palliative phase.
Palliative care referrals come from GPs, the hospice or the hospital. "Most patients are cared for by the family but we are there to provide the intensive nursing at the end of life - checking skin integrity, ensuring nausea and pain are under control, ensuring the patient has enough drugs on board and is comfortable, managing continence issues, making sure the family has the right equipment in place and they can get some breaks. I see us as the 'sweepers', waiting for the right moment to enter the home, the moment that suits everybody. Sometimes we begin too early, sometimes too late," Dobson said.
She believes the duty of care for a dying patient should be shared between GPs and the district nurses, with the hospice as a back up if required. She is glad of the hospice care co-ordinator's specialist role. "She provides knowledge, back-up and support, which is invaluable."
Dobson cites the case of the mother of two young children, who wanted to die at home - "a cottage in the depths of winter" - and to be cared for by her family and particular nurses. "Her family cared for her wonderfully and the GP provided her with everything needed for symptom control. I visited twice daily to change her syringe pump, wash her and monitor her. One day she said she wanted to have a bath. It was impossible for me to do that on my own so I called on Catherine, who came to the cottage with me on her day off. As well as being able to help with a bath, she was able to give expert advice and was a great support to me in a very tender situation."
Palliative care nursing can be very emotionally draining--"I think it is the dissipation of hope that makes it so sad and such a hard job."
Many people retire to Central Otago from major centres and expect the same level of services as those they left. But there is a lack of infrastructure, resources and qualified staff to provide 24-hour palliative care nursing. "Trying to meet demand and expectation with an already overloaded district nursing service is exhausting and challenging, but it is also rewarding, if it can be achieved," Dobson said.
The nurses can have a daily caseload from 15 to 22 patients in one area and more often than not there are two or three palliative cases at once. "A lot of the onus falls on families. Often they are put in a position where they don't know how to, or even nescessarily want to, nurse their loved one. Carer fatigue is very common. If a family member is a nurse that is a help but if the family has never cared for anybody before, it can be very difficult. We try as hard as possible to respect the patient's wishes but sometimes admission to hospital is the best option. We tell the family it is not about failing - it is almost as though we can give them permission to come into hospital. And it is a very nice place to be. It can be very difficult to monitor a patient at home and give them the palliation they need. Sometimes they can go into hospital and, once their symptoms are under control, they go home again," Dobson said.
Another challenge of living and working in the same community is that nurses are sometimes contacted by friends or relatives after hours for advice or help. "Nurses often feel obligated to be involved inadvertently and this can leave the nurse feeling vulnerable and the nurse/patient boundary can get very blurred," Dobson said.
She believes two nurses and two hours is required for a palliative care visit. "As well as the nursing and personal cares, the potential for drug errors is high and the family usually has lots of questions. We can usually call back in the afternoon or at the end of the day - there is some flex in terms of visiting when people are dying but trying to work out the balance can be a real challenge."
Dobson says a good work/life balance is essential. "When there are no palliative patients we get a break and our reserves go back up again. All the district nurses are part-timers. This means different nurses visiting patients. Patients don't always like this but it prevents burn-out. All staff try to support each other and debrief regularly. A counselling service is available. There is no formal clinical supervision but it is available if needed."
Dobson is realistic about the level of service the district nurses can provide to those who are dying. "Some deaths go really well and others don't. There is still work to be done to ensure every death goes as well as possible. Despite the challenges of working in this large rural region, the district nurses often go beyond the call of duty to facilitate excellent palliative care. But there are times I feel our shoulders aren't broad enough for the job we have to do."
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