Palliative care at home: general practitioners working with palliative care teams

Most people with an advanced, progressive incurable disease wish to spend their final days in their own home.1 Indeed, 90% of the care of patients in their last 12 months of life occurs at home, with the support of a general practitioner and community nurse teams.2 While 25%–40% actually achieve this aim of dying at home,1,3,4 another 30% of patients remain at home until the final few days of life.2

As with other developed countries, Australia’s population is ageing. The demand on palliative care resources will increase markedly in the next two decades. Coupled with this, changes in the demographics and work patterns of the general practice workforce will lead to difficulties in achieving the goal of home care for most people with a terminal illness, unless structural initiatives are put in place.

To make it possible for terminally ill patients to remain at home for most or all of their remaining life, they should have access to:

• A GP knowledgeable in and skilled in palliative care, who is prepared to make home visits and provide after-hours’ cover;

• A specialist palliative care team to work with the GP; and

• Access to an inpatient facility to manage acute changes in the patient’s condition, or for respite purposes.

Palliative care began as a radically different way of caring for people with a terminal illness, and took many years to be accepted as a mainstream discipline. Over time, the outcomes that specialist palliative care teams can achieve have been clearly demonstrated. Such teams are better able to identify and deal with patient and family needs, and to provide access to other services. They can also provide improved pain control and symptom management.23 GPs have been wary of sharing care with specialist teams, but are more willing to do so once they have experienced shared management.24

For some GPs, the preferred model of care is one in which the GP coordinates the patient’s palliative care and works with other team members who assist in providing physical, emotional and spiritual care (unpublished data).

A major source of dissatisfaction for GPs is the problem of knowing what their role is and when they should defer to specialists.7,25 GPs require a meaningful role, good com-munication and clear role delineation to be comfortable working with palliative care teams.16 The GP’s preferred role is to be the advocate for the patient in the healthcare system, but all too often it seems that this role is neither engaged nor encouraged by the specialist or palliative care community. GPs need to be willing to take this role as their own, but palliative care teams also need to be willing to offer this relationship to the GP. The different working cultures of GPs and palliative care teams need to be acknowledged and innovative solutions found that marry these competing cultures.18 Several innovative models prove this can be done.

• In Western Australia, the Silver Chain Hospice Care Service provides, for the city of Perth, a multidisciplinary care team comprising doctors, nurses, allied health professionals, volunteers and spiritual and counselling support. The doctors in these teams are usually local GPs who have had additional training in palliative care.26 This “embedded” doctor model contrasts with other programs that prefer to use doctors attached to palliative care teams from hospitals, or hospices who liaise with the patient’s own GP.

• In Queensland, the Ipswich Palliative Care Network model incorporates a public inpatient unit, a general practice-run hospice, and domiciliary nursing services.27 GPs are expected to provide palliative care, and there are supporting mechanisms for education (evidence-based guidelines) and peer review (weekly case conferences with a palliative care specialist) to ensure patient care standards are maintained.27

The federal government is currently funding a range of different models of palliative care delivery in rural, regional and remote settings. The government also commissioned a national study into GP education and support needs for palliative care, which has just been completed.7 These initiatives should provide evidence-based strategies to improve palliative care training and facilitate palliative care in a range of settings, including general practice, with resulting improvement in patient care.

An invaluable member of the home-care team is the community nurse. If the nurse has palliative care expertise, teamwork between community nurses and GPs can provide high quality care for patients.23 Nurses can give the GP and other team members a “real time” assessment of the patient and family, and can also give advice on possible therapeutic interventions or the need for inpatient admission. Com-munity nurses are generally the “backbone” of a home-care program and, as such, need to receive sufficient skills training and team support to continue their work.

A crucial element of community palliative care is ready access to palliative care beds. In Ireland, one study found that 25% of GPs frequently experienced difficulty acquiring hospice inpatient beds for their patients.28 Anecdotally, the situation in Australia is similar. The pressure on all inpatient facilities has increased steadily over the years, and, in the event that home care is not going well, it can be difficult to give GPs and home teams a solid guarantee of a palliative care bed.

Very elderly patients who do not have a malignant illness but need palliative care present an emerging challenge that demands the attention of our policymakers and healthcare planners. These patients have an uncertain prognosis and variable care needs. Palliative care services with limited resources find it difficult to afford to care for these people in the same way they would for patients with cancer. Their non-linear illness trajectory and often complex treatment regimens lead to many practitioners taking a different approach to these patients.29 As a result, their palliative care needs may not be adequately met.