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Different paths, one end

Three different types of palliative care specialists discuss their roles and how to serve patients better. By Dallas Bastian.

The growing demand for end-of-life care is making the role of the specialist palliative care nurse increasingly important, those within the industry say.

Katrina Recoche, nursing lecturer at Monash University and vice-president of Palliative Care Nurses Australia, says specialist palliative care nurses are crucial, as the complex symptom management necessary when people are near the end of life requires highly skilled nursing management.

“Not all health professionals have these skills and at times the palliative care nurse needs to advocate for the patient and family to ensure optimum symptom management,” Recoche says.

Specialist palliative care nurses must be aware of both the physical aspects of a person’s illness and their emotional and psychological needs, as well as those of the family, she adds. “This is not dissimilar to other areas of care, but the needs are greater and often more acute in the palliative phase of illness and at or near the end of life,” Recoche explains.

What’s necessary to meet the needs of an ageing population and to ensure appropriate care, Recoche says, is a systematic program of education for all health professionals about the principles and practice of palliative care. She notes that palliative care nurses and nurse practitioners are already involved in supporting generalist healthcare professionals through consultancy, professional development and education programs.

Nursing Review spoke to professionals working in three different areas of palliative care about their ever-changing roles and the unique perspective that these specialists bring to patient care.

Jacquie Burton – Clinical nurse consultant for the Victorian Paediatric Palliative Care Program/Liaison Nurse

Jacquie Burton says a main area of her role is working directly with families that are facing either the new diagnosis of a life limiting condition or entering a phase of their child’s illness that may be more unstable or unpredictable, and end-of-life care, support and discussion about choices are needed.

She says the role of a liaison nurse is dynamic and depends on what the patients, family and care team require.

Unlike in adult palliative care, most patients (75 per cent) do not having an oncology disease, Burton says.

“Most patients we see have the diagnosis of degenerative conditions, which may or may not be genetic,” she explains. “Many children are known to our service for several years and we often meet them and their families following diagnosis and work with them over different periods of time.”

She says the nursing role has changed; more time is spent now providing support and education to the registrar’s role as the area of care is quite different from other rotations that registrars will have in their general paediatric training.

Burton says specialist palliative care nurses are crucial and good palliative care and symptom management are vital. “Death in our society is a taboo subject and therefore having healthcare professionals who can guide and support families through this time is essential,” she adds. “This is just as crucial for paediatrics because the death of a child is a much less common event than in adults and there are many dimensions of care that is required.”

She says when parents outlive their children, there is a large, emotional, grief and bereavement aspect to working with the children and their families.

“There are the issues of explaining death or dying to children, not only to the child who is dying, but to their siblings,” Burton says. “Families usually don’t want to meet us. Their child dying is too confronting and being referred to us makes this more real, so you learn quickly how to discuss difficult things with families in a non-confrontational way, and I have become a much better listener.

“Many times when we first meet a family we don’t talk a lot, we allow the family to tell us their story and how they have come to this point and sometimes this is enough to establish those first steps towards them trusting us to be involved in their child’s care.”

Burton says some of the most important questions she asks families are about what is most important to them and what scares them the most, adding that these queries can open up a range of directions for care.

“Families often report back to us [that it is] the little things that meant so much to them when their child was dying, the acts of human kindness – which may be as simple as making someone a cup of tea and getting them a sandwich when they don’t want to leave their child’s room,” she adds.

“What I enjoy the most about being a nurse is the dynamic way we can work and how we can look at the bigger picture for the patient and their family, trying to provide a more holistic approach to care provided.”

Sarah Coulson – clinical nurse consultant, community palliative care, Tasmanian Health Organisation – North

Sarah Coulson provides support and advice to primary healthcare providers, their clients and their families.

“These roles are evolving … we are seeing people with a broader range of life-limiting illnesses, which requires us to expand our knowledge of symptom and disease management,” she says, adding palliative care specialists are meeting people much earlier in their disease trajectory.” The uptake of early referral to palliative care services has resulted in specialists knowing people longer, which Coulson says results in nurses adjusting their approach to care delivery in some ways.

Coulson’s team has experienced a significant increase in the number of clients it is seeing. She expects many more changes in the future.

“The only way to approach the future of healthcare is with an open mind and a strong emphasis on the fact that the patient/client consumer needs to be at the centre,” she says.

However, she adds that she and her team are carrying out their roles under continuous, if not increasing, pressure. “These pressures are from time constraints, financial constraints, maintaining and up-skilling on the run – all the while trying to deliver high-quality patient care,” she explains.

Coulson says the development of specialist palliative care nurses requires mentoring, a can-do attitude and a reduction in gatekeeping around the roles.
“We need to be able to articulate, at a national level, what an SPCN is and does,” she says. “We need to be able to articulate what the expectations are and how nurses can get there.”

Clear career pathways established within individual organisations are also necessary. “We need to ensure the integration of palliative care skills and knowledge, and death literacy, are embedded into undergraduate and non-tertiary training programs for carers and such,” she says. “We should not, and cannot, afford to be paternal about palliative care, it is everyone’s business, a lot of what we can do as SPCN is share our skills and breakdown taboos that surround dying.”

She adds the development of the nurse practitioner role has provided great career opportunities for nurses to progress clinically within palliative care.

Peter Jenkin – Palliative care nurse practitioner, Resthaven

Peter Jenkin is a palliative care nurse practitioner for aged and community care service Resthaven and previously worked as a specialist palliative care nurse for a community service in Adelaide.

Jenkin provides specialist support in residential and community aged care, helping with symptom management and advance care planning. He also takes part in research, external education activities and teaching postgraduate studies at university.

He says his role also focuses on assisting the elderly and their families with potential emotional or psychosocial distress and providing information and support for families and staff.

“Often people are frightened and scared about things simply because they don’t know what’s going on and a lot of my time is spent providing that sort of education,” he says. “It’s also providing advice to the nursing staff and GPs and other health professionals about providing care for someone as they approach the end of their life.”

He says the increasing number of people with dementia and an ageing population in general are continuing to affect his role, as there is a bigger call for the service.

People are also being kept more independent for longer, meaning they’re entering aged care with more medical problems and a higher dependency. Jenkin says this is going to increase the complexity of care as well as the number of people who need it.

“It’s reasonably well known that palliative care or end-of-life care isn’t being … done particularly well in aged-care settings and there are a lot of reasons for that,” he says, citing staffing numbers and the skill mix as factors. “There just aren’t enough registered nurses and enrolled nurses in most facilities to be able to provide that care and also there is a specialist element to it. End-of-life care is not something that everyone is comfortable with or knowledgeable enough about.”

He says a significant issue for nurse practitioners is that the Medicare reimbursement isn’t nearly enough to cover a salary by itself, meaning an organisation has to decide to spend its own money to provide that service.

“The need for specialists to help guide and educate and provide that end-of-life care is going to be more and more important,” he says.

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