Role definition needed for nurses and GPs in pediatric palliative care
MedWire News: Primary care physicians (general practitioners [GPs] and community nurses) need to be more "actively anticipated" in the transition from active to palliative care for pediatric cancer patients.
In a study of children who died at home from terminal cancer, out-of-hours care, and role establishment were both a concern to GPs and nurses.
"Those contributing to palliative care to a child with cancer at home may often be working together for the first and only time," write Sue Neilson (Birmingham Children's Hospital NHS Foundation Trust, UK) and colleagues in the journal Family Practice.
"The newly formed team of professionals needs to rapidly develop effective working patterns, such as developing efficient communication pathways, if exemplary care is to be achieved," they suggest.
The research group evaluated the experiences of GPs and community nurses following their involvement in the care of a child with cancer who received palliative care at home. The team believes that these two types of healthcare professional "may be ideally suited to holding key roles" in the provision of such care.
In all, 10 GPs and 37 community nurses underwent one-to-one interviews, and five themes emerged: organization of care, out-of-hours care, teamwork, communication, and emotional impact.
GPs expressed concerns about feeling "out of touch" with the family since, in many cases, once the child had been diagnosed, GPs become involved in hospital rather than primary care. How to re-initiate contact with the families was also a concern for GPs.
By contrast, community care nurses often met the patients at diagnosis and offered "a practical and supportive role" through to treatment and palliation, say Neilson and co-workers.
GPs also made distinctions between whether their role was task-oriented or supportive, with supportive roles causing concern. Supportive contact was "culturally harder" according to one GP, who said that visiting families of children with cancer "with no reason" is hard without "a prompt or a prop".
Conversely, role uncertainty was not expressed by the nursing respondents whose interventions were mostly practical during active treatment and who, by the palliative phase of care, had developed "good working relationships" with the children and their families.
However, nurses did express concern about their ability to maintain or develop the skills necessary in a pediatric palliative setting. One nurse remarked: "I think we'd always be happy to help but it isn't ever going to be easy for us because we're not specialist children's nurses."
Out-of-hours care was a cause for concern among GPs and nurses, with both healthcare providers often providing this care themselves on top of their usual daytime regimes. Some GPs stated that they left families or contact centers their own personal telephone numbers, and worried that out-of-hours GPs could potentially be entering a "difficult emotionally charged environment often with limited background information."
However, the benefits of out-of-hours service providers was also highlighted, remark Neilson et al, as children are then able to be seen "with a fresh set of eyes," by the out-of-hours physician or nurse.
They conclude that although the rarity of childhood cancers make effective teamwork in the palliative setting challenging, "initiating a team meeting at the child's transition to palliation could prove to be the linchpin for not only clarifying the GPs role within the team but also re-instigating contact with the family through the organization of visits with community nurses."
By Sarah Guy