I feel like such a fraud. What am I doing writing a guest post for Palliverse, when I am a doctor who rarely provides palliative care? My justification for writing here is that it’s this very sense of uncertainty and underqualification that I’m feeling which is the subject of my post.
I’m a “general practitioner” — a “GP” as we’re called here in Australia. If you’re reading this post from North America, think “family physician” — it means much the same thing — but for convenience I’ll use the term “GP” today.
GPs have a special place in many health systems. We’re the primary care doctors. We’re often the first point of contact for people in the health system. We welcome patients regardless of age or gender. We don’t just diagnose and treat disease; we try to prevent disease too, and also act as coordinators of care for patients with complex health needs. Our work emphasises continuity of care — we build relationships with patients over time, which helps to build trust and enrich the care we provide.
Ideally, we treat whole people, not just diseases, and we see our patients in the context of their family and their society. Of course, good doctors from other disciplines will do this too, especially good palliative care specialists — GPs don’t have a monopoly on this sort of holism. But if we’re not practicing like this, then we’re arguably not being good GPs.
I mention all of the above to summarise some of the defining features of general practice. But many would argue that providing palliative care is also an important feature of well-rounded general practice. John Murtagh, in his classic textbook on general practice, writes:
The GP is the ideal person to manage palliative care for a variety of reasons — availability, knowledge of the patient and family, and the relevant psychosocial influences. A key feature is the ability to provide the patient with independence and dignity by managing palliative care at home. Someone has to take the responsibility for leadership of the team and the most appropriate professional is a trusted family doctor.
But are GPs embracing this challenge? Decreasingly so, it seems. The rate of home visits halved in Australian general practice between the nineties and the noughties; I think it’s a fair bet that GP home visits for palliative care fell in some similar proportion. In 2007, a quarter of Australian GPs surveyed said they were not involved in palliative care, and these GPs tended to be younger, working part-time, and not practice owners. These demographic features are becoming more common, which invokes the spectre of GP palliative care participation falling further.
Roger Ladouceur, troubled by even more dramatic figures from Canada, wrote last month:
How is it possible to be a family physician who espouses the 4 principles of family medicine but refuses to visit patients at home when they are too sick to come to the office? How can we say that “family medicine is a community-based discipline” or that “the family physician is a resource to a defined practice population” if we refuse to provide care to patients in their homes — especially end-of-life care?
All of this is enough to make me feel guilty and inadequate. I don’t personally have a blanket rule against doing palliative care or home visits, but I admit these happen rarely for me. My home visits are usually to longstanding patients who used to see me in my clinic, but who have become incapacitated by multimorbidity, often after an acute exacerbating event that has seen them hospitalised, then precariously discharged. (Indeed, for some of these patients with poor prognoses, I’m arguably providing a type of palliative care — the sort that exists “beyond cancer” — though I tend to think of this work as “GP geriatrics” rather than “GP palliative care”.)
But for patients with advanced cancer who are clearly going to die of their disease, referral to a palliative service is my usual action. I am lucky to practice in a region where quality palliative care services are available and responsive. If I tried to provide comprehensive palliative care myself, I fear I’d feel unsupported and like something of an imposter. Sure, I can try to prescribe analgesia rationally, to understand my patient’s goals, and to embark on conversations about symptom control instead of cure. But will I feel out of my depth as opiate doses escalate? Will I remember to screen for symptoms other than pain? What if these symptoms are refractory to first-line treatments? Will I know what to do? Will I fail to consider some available palliative options, like radiotherapy for bony malignancies? I’m not part of a palliative team, sharing rosters with other doctors, and working alongside experienced palliative nurses. Is it realistic to go it alone? Do I have to be “on call” for my patient and their family around the clock? What does this mean for my availability for my own family? Won’t my patients get better care from people who do this often, together, rather than from someone who does it infrequently, alone?
When I refer my patients to pallative care services, I don’t mean to abandon them. I remind them that despite this referral, I will remain their GP and am happy to see them as needed. But in reality, I seem to see these patients on few further occasions, and have little if any input into their palliative care.
My anxieties are not unique. The survey above found that barriers to GP palliative care participation included perceived lack of knowledge, a disinclination to do home visits, and difficulty being available out-of-hours due to family or personal commitments. Geoff Mitchell and colleagues discuss such barriers further. In terms of knowledge, they describe the sporadic nature of palliative cases in general practice, the evolving palliative care evidence base, and competing educational priorities as conspiring to diminish GP’s knowledge and confidence. They identify barriers to home visiting including safety concerns and time and cost inefficiencies. GP undersupply or maldistribution is another possible barrier they mention. And they also cite the “specialisation” of palliative care as another barrier: an “unclear role definition for GPs in specialist palliative care service environment or among multiple service providers with palliative care brief”. All of this rings true to me.
Other barriers aside, perhaps I’d feel more confident in my knowledge if I’d had dedicated palliative care experience as a junior hospital doctor, or during my GP training years. It’s tempting to think this would be true. But research published last month in Canadian Family Physician calls this into question. Interviewed after a 4-week palliative care term, family medicine residents reported feeling discouraged from future palliative care work. This was not because it was a bad educational experience — on the contrary, they praised its usefulness in reinforcing communication skills and improving their knowledge of symptom management at the end of life. But they were left lacking in confidence in their ability to do this sort of work independently, because it was seen as specialised and highly skilled. To quote the authors:
“Our findings also highlighted that despite the curricular goal of new graduate engagement in palliative care, the delivery of the curriculum has the unintended effect of discouraging family medicine residents (FMRs) from incorporating palliative care into their future practices. Our study suggests that this disjuncture might … result from a misalignment between learners and the most appropriate mentors. A palliative care rotation created for FMRs in which educators are part of a specialized program might reinforce the notion that palliative care is best offered by palliative care specialists.
…Additionally, minimal exposure to family medicine preceptors who incorporate palliative care into their practices contributes to residents’ disempowerment in the provision of palliative care.
…When combined with feelings of discomfort stemming from insufficient palliative care skills and lack of clarity around how to integrate palliative care into a family practice, FMRs were faced with a dilemma: Although they greatly valued the physician-patient relationship that developed over time, many FMRs also felt obligated to refer their dying patients to specialized palliative care programs, which were perceived as providing better care owing to more expertise and appropriate infrastructure.”
These are important and disappointing findings for those who hope to see greater GP engagement with palliative care.
What are the solutions? If budding family doctors are to feel inspired and confident, perhaps palliative care needs to be role-modelled by experienced family doctors, rather than palliative medicine specialists. But opportunities for this role modelling may be scarce, given the infrequent engagement in palliative care of most GPs.
Is the prognosis for GP palliative care terminal? For the classical palliative care we see in advanced cancer, in regions where specialist services are easily available, the outlook is at best uncertain. Does this matter? Some patients may prefer the availability and expertise of a specialised service. Others may have preferred the continuous care of a known doctor — one who is a specialist in them, if not a specialist in palliative care.
In regions (particularly rural areas) with less access to specialised palliative care, I suspect GP involvement in palliative care work will remain very important. And as for palliative care “beyond cancer”, many GPs may already be doing more of this than they realise, even if, like me, they have been framing it in different language.
Where to from here? I don’t have the answers, but I look forward to the conversation. What do you think?
Ed: Thank you so much for this very thoughtful piece, Brett.We’d love to hear what the rest of the Palliverse thinks.
Brett Montgomery is a GP based in Western Australia. He shares his workload between clinical and academic work. He is a self-confessed evidence-based medicine nerd and can be found on Twitter @brettmontg.