Ongoing involvement of a patient’s doctor could vastly improve end-of-life care for people with terminal illnesses.
End-of-life care, or palliative care, is an approach to care that supports a person with a serious and progressive illness to die with as much comfort and dignity as possible.
The care can be provided by a range of professionals and either at an inpatient unit or at the person’s home.
While many GPs continue to be directly involved in planning and providing end-of-life care for their patients, others never get involved or cease involvement after the patient has been referred, despite the benefits and expectations from family that their doctor will be part of the care.
Associate Professor , a practising GP and researcher with the University of Wollongong’s School of Medicine, interviewed GPs and specialist palliative care clinicians in New South Wales and Queensland to understand why GPs are not more involved, particularly when evidence shows that proactive GP involvement contributes to patients being cared for and dying in their preferred place.
“It makes sense that when we die, we die well,” Professor Rhee said. “Instead of sweeping it under the carpet, we think about end-of-life care and help people to prepare and plan for it.
“Unfortunately, only about one in three people who ought to receive palliative care actually receive it, and only a small proportion of people manage to die in the place of their choice.”
The study, , revealed several barriers to GP involvement, including differing views on the precise role a GP should play.
These include the relationship with the patient, not having the right skills and experience in end-of-life care, and long work hours at their clinic that limit their capacity to be involved.
GPs were likely to be involved if they had a strong relationship with the patient and family, which made a big difference in talking about the subject of end-of-life care.
On the other side of the care equation, the specialist palliative care clinicians thought GPs had a vital role to play in care planning and referring to palliative care services, as well as being the primary clinician looking after the patient’s overall care.
Suggestions to encourage more doctors to be involved included education and providing practical experience in the field.
Crucially, structural issues such as inadequate Medicare funding for GPs delivering end-of-life care, especially for home visits which are an essential part of effective end-of-life care, and communication between hospitals and GPs were areas that many participants in the study identified could be improved.
“Where GPs do play a role and make end-of-life care work, this is often due to the GPs’ personal and professional commitment to their patients,” Professor Rhee said.
“Unfortunately, the health care system doesn’t help them. In fact, if anything it makes it more difficult. We need to change the system so that it doesn’t punish or discourage the GPs trying to do good work looking after their sickest patients.”
Professor Rhee said the study highlighted a new interpretation of the traditional role of the family doctor in “cradle-to-grave” care, particularly as the population ages.
He said that while the specialisation of medicine and conceptualisation of general practice as a business-hours walk-in service had reduced the extent of home visits, after-hours care and GPs visiting patients in hospital, the fundamental need for GPs to continue providing end-of-life care to patients was growing.
“We still need the GPs to offer ‘cradle-to-grave’ care – a ‘reboot’ if you like – through effectiveness partnerships and collaboration with specialists, nurses, allied health professionals,” Professor Rhee said.
“The days of each doctor being on-call 24 hours a day and providing home visits to all their patients may be gone, but in its place we need to ensure that sick patients including those with end-of-life care needs are able to access medical care at home by doctors, nurses and other health professionals who they know and trust.”
Professor Rhee pointed to the patient-centred medical home, first developed in the United States, which patients can see as their “medical home”, a place where they can turn to if they have any health problem including after-hours or if they have an urgent need and a place that helps to coordinate their care.
“This is currently being trialled in Australia. If it works, it could bring about a lot of benefits, including better outcomes for patients through better coordination of care, improved access to health services, and possibly at reduced cost to the taxpayer.”
