Family doctor involvement in palliative care: what’s its prognosis?

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.

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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.

22 thoughts on “Family doctor involvement in palliative care: what’s its prognosis?

  1. What a thought provoking piece. One that heightened my awareness and made my own insecurity and panic subside.
    Being a first year GP reg in a regional town for last year after coming from large tertiary hospitals- I really needed to go to palliversity.

    I managed two patients both end stage cancer at home both while my direct boss (supervisor) was on leave.I had the support of a palliative care nurse and a consultant in brisbane .

    I too felt the insecurity, it was fine to begin with but then I has to deal with increasing nausea, bowel obstruction and oedema… I think the worst part was my own initial reaction, to run away, hand it over… but there was no one else. .and I felt a sense of duty to see them through. Who else did they know who made bad jokes, ignored the smell of marajuana and brought the medical attention they needed week in and out?

    When did I get taught about this in medical school… I even did a 2 week pall care placement once 5 years ago as a student…but I still felt the gross sense of “imposterism” was overwhelming.

    The kind palliative care consultant after dealing with my hurried mumblings would say … It was “a privellege to help you today”. I would hang the phone up in disbelief that someone so expert could put up with my ongoing harassment and continued to do so for many months.

    It was a steep learning curve but both patients passed away comfortably… syringe driver bungles and all. It was my privellege and a wonderful learning experience and although grateful I do reflect about whether I’ll actually be better next time? I do feel like a 2 hr education session isn’t enough…I do feel like GP’s and budding GP’s need to know – it’s part of their scope of practice.

    I hope I get to do it again… but I too fear that if I’m back in a city it will no longer be my place to step in when the palliverse operates like a well oiled machine- without needing my poor mechanical skills.

    Liked by 5 people

  2. Dear Brett + S.Singh

    Excellent piece. I agree that for the most part, GP’s can feel like imposters in the area of Palliative care.

    Interestingly I encountered palliative care decisions and patients when I started my GP training here in Albany, Western Australia. This is moderately large country town but we are blessed with having an excellent palliative care team who provide insight and guidance and invite GP’s regularly to learn.

    This symbiosis has been really the main reason that over the last 4 years, my knowledge has increased and confidence in dealing with palliative patients has soared.

    I felt like a deer in headlights the first time the nursing home RN called to tell me that my patient was dying and needed some care. I called the palliative care team here in Albany to help and they were so helpful and through their grace I am learning.

    It will become very hard to ignore the need for the family doctor to have an interest/knowledge of palliative care as our population ages and we deal with multi-morbidity.

    Patients and their families will inevitably cross our paths for simple requests as scripts and referrals and right down to important documents such as advanced care directives. GP’s will need to provide care by safely guiding them through the network and offering their patients solid and balanced opinions of their options.

    If a GP is dealing with older patients or patients with chronic illnesses then they are in the palliverse. It is a journey of learning and we all start somewhere!

    Liked by 5 people

  3. This just confirms what my recent research has shown. Depressing.
    When I spoke at a GP conference, I asked how many had discussed end of life issues with their patients. I estimate less than 20% had enjoyed that meaningful discussion.
    The patient feels lost and confused.

    Liked by 2 people

  4. Pingback: Family doctor involvement in palliative care: what’s its prognosis? | Scotland's Communities

  5. Thanks Brett, what a thought provoking piece! I am one of those palliative care specialists and I do hope that I never make our GP colleagues feel guilty and inadequate. Palliative care peeps can NEVER do all the end of life care and symptom management in life limiting illnesses in our health system, we NEED our GPs to do it too.
    One of my excellent Medical School (and high school!) colleagues Dr Emma Greenwood has made the jump from GP to specialist in palliative care.
    You can find her insightful comments on our Facebook page https://www.facebook.com/palliverse/?fref=ts – have a look! She wisely recommended CareSearch GP hub http://www.caresearch.com.au/caresearch/tabid/3648/Default.aspx as a good resource for GPs.
    I loved the comment from the palliative care specialist about it being a privilege to take Dr Singh’s call. It is!

    Liked by 3 people

  6. Forgot to say…. an excellent engagement tool has been brought out in America, and I have found people very willing to use it in Scotland. Simple, straightforward and guiding the practitioner, it is an extremely thoughtful example of how to start these difficult conversations.
    When questioned as to its usefulness one respondent said:
    Quote: “I would question the sanity of anyone who did not(want to use it).”
    https://www.healthproxysite.com/

    Like

  7. Dear all, thanks very much to Brett and the other commentators for raising this important issue. There is so much to say.

    I’ll start by declaring my bias and my philosophy. I am a GP academic who fell in to palliative care through working as a GP in Ipswich, Australia in a time when no-one knew much about palliative care at all and the specialty did not exist. Researching and facilitating GP end of life care has become my life’s work. When the specialty came in to being I was highly concerned that end of life care would go the way of GP obstetrics – because there was a specialist round the corner they must do a better job than me so why try? This reflects a fundamental lack of self confidence found in many many GPs. As a generalist I could not possibly be able to do this work well enough. I have resisted this approach my whole professional life. I accept that I will make mistakes, but when I do I try to learn from them so they are not made next time. That is how we all learn.

    Now to my philosophy. If you want to maintain or improve a skill there are three requirements. The first is you need to want to do it. The second is that you need to have opportunities to do it, and third is you need to feel supported when you try. Corollaries of these principles are: 1. It is easier to want to do something if people around you encourage you to give it a go. 2.You can make your own opportunities or someone can encourage you to do so; and 3. Everyone has a responsibility to support people having a go.Who has never fallen off a bike whilst learning how to ride? Everyone needs to recognise that there will be rough patches at first. It takes a village to raise a child. It takes a professional community pulling together to make a proficient GP.

    Next philosophical point. Palliative care, end of life care, whatever it is called, is everyone’s business. The last time I looked the mortality rate of the human race was stubbornly stuck at 100%, with no prospect of improvement. Simply too many people die to make dying a specialty. So lets think about how we should organise the system to make the most of everyone’s skills. Most people who die do not have cancer. Most symptoms are manageable and when some become difficult there is a lot of advice to be had, both over the phone and in the form of resources. Caresearch has been mentioned, Therapeutic Guidelines Palliative Care is specifically aimed at GPs and other primary care professionals. Both are excellent resources. When a GP reaches the end of their competence, then go to specialists. What I would love the specialists to do then is to suggest some options for the GP to try and see how they worked. Or maybe a single consultation and return to the GP with treatment suggestions. Only if that does not work, then take over. OR share the care. I reckon this approach taken over years will ultimately reduce specialist workload, not increase it.

    The evidence shows that the older the GP is and the more exposure to end of life care they have, the more comfortable they feel about being involved in end of life care. So the lesson there is start early, expect to be the deer in the headlights and don’t feel that it is a personal reflection on your inadequacy. It is a reflection of your inexperience. To my specialist colleagues, I would say that you have an incredibly important part to play in getting GPs through this phase. EXPECT your GPs to be involved. EXPECT that they won’t do it perfectly and be there to support them through the questions and doubts. Praise them when they do a good job. Our profession is notoriously bad at that. Note Jonathon’s comments from Albany. On reflection he felt he had done well and enjoyed it and would do it again. He had great support but the specialists did not take over. That is what we should all be aiming to facilitate.

    Regarding being available out of hours: DO IT. I give my mobile number and home number to patients nearing the end of their life. Patients NEVER abuse this privilege. I might get a call 3-4 times a year. They know you are there for advice and much can be achieved over the phone. YOu might need to go out once or twice through the year. Many times patients never call, but knowing they are welcome to provides enormous security and relief of their anxiety.

    And if you think that you are anxious as a junior GP, spare a thought for the patient and their carers. Everyone is on edge in this situation. You know way more than them and sharing you knowledge eases their pain.

    Brett’s point that aged care and multimorbidity means that he is dealing with dying people is absolutely correct. It does not matter what it is called, end of life care is what is happening here. The only people who do not have contact with dying people are pathologists. Lets call out what is happening and make proactive and deliberate care at this stage of life an overt part of what we all do.

    To the specialists out there, I’d love to see a conversation amongst you about how you can incorporate this kind of approach into your daily work. Over to you!

    Liked by 5 people

  8. Thanks again Brett for a great piece and everyone for a wonderful conversation.

    I would agree with all of the comments, and particularly with Sonia’s comments about the limits of what specialist practice can provide. As with Jonathon’s comment so many of us are in the palliverse and are involved in providing (or receiving) palliative care even if it is not explicitly stated. Because so much of palliative care is fundamentally good person-centred care for someone with advanced illness it is easy to overlook the skills that many of us have and use without them ever being clearly acknowledged as “palliative care skills.” As a palliative medicine specialist I think my job is often to point out to GPs, other specialist doctors, trainees, nurses, and aged care staff that they are doing a great job already.

    In saying that I think it is also important to acknowledge that as a specialist I still get that feeling of discomfort at being unable to control these situations for patients and families. I don’t think that if you feel a bit at sea as a clinician supporting people at the end of life that that means that you are necessarily doing it wrong. While you get more confident with many aspects of managing death and dying with experience it never gets easy. I think with experience you do get more comfortable with being uncomfortable but we all need support in doing this work, even if it is just someone to run some thoughts by. With supports such as Decisions Assist (mentioned by Sonia above) increasingly all primary care clinicians can get access to specialist support by phone regardless of their local setup, which I think is an important step forward.

    As Brett points out the realities of our healthcare system mean that the high needs of a person approaching dying are difficult to meet without the support of a multi-disciplinary palliative care team. I wonder whether the challenge for us as clinicians is to figure out how to effectively integrate primary palliative care with specialist care so both clinicians and patients get the support they need. A good model of integration could also avoid the tensions around patient ownership between GPs and specialist services which I think lies at the root of some of the concerns Brett repeats from Geoff Mitchell’s article particularly those around a loss of primary palliative skills due to rampant “specialisation”.

    Meeting these challenges won’t be easy but I for one feel more confident of our ability to do it due to conversations like these. Thanks palliverse-peeps!!

    Liked by 4 people

    • An excellent piece Brett.

      Regarding your point about giving out your mobile phone number to patients – I have found the same.
      The patient feels privileged and never abuses this, and it is an excellent way of promoting engagement and Inclusion.
      Too many GP’s seem fearful, whereas having the confidence to go that extra mile will encourage and support the patient and it is interesting that such a small thing makes them feel valuable.
      It leads to a better and more trusting relationship, with a confident, and happier patient.

      More importantly, it signals that massive change of attitude from:
      THE DOCTOR MUST NOT BE DISTURBED
      to
      THE DOCTOR TRUSTS THE PATIENT.
      How I wish there were more like you, who practice with an enlightened eye!
      .

      Liked by 3 people

  9. Thanks so much for this discussion. I’m a GP (working mostly in out-of-hours services). My first job – nearly 30 years ago – was (by mistake, let me confess) in tertiary radiotherapy and oncology / and with AIDS patients in the years before there was any treatment for HIV.
    All the inpatients were dying, so I had to learn palliative care. It was a baptism of fire – but really good for my communication skills, and confidence in being with dying patients and their families.
    I don’t understand why it’s not compulsory for everyone!
    (Though hopefully a bit better supported than I was)
    But the reason I’m responding here is that last year I audited my own primary care out-of-hours palliative care work. Three things really stood out:
    1. Neighbours and families are amazing. Really AMAZING!
    2. Anyone who had discussed what sort of end of life care they wanted (not going to hospital etc) got what they had asked for (even if it took me ages). Anyone who hadnt had that sort of discussion was admitted if they were seriously ill. Even though I asked what they wanted, by the time they called an out-of-hours service, they weren’t coping to the extent that they wanted an admission. This is a real missed opportunity that all primary care staff could – and in my view should – be involved in, even if they dont want to do fancy syringe drivers etc.
    3. Quite a lot of patients didnt have a palliative care problem at all. They needed what I would consider basic primary care e.g. COPD patients who got lots better when I showed them how to use their inhalers effectively, someone whose GP had removed their GTN (dont ask me why, please!) and was now having their usual angina – but now untreated. I’m not sure how good specialist pall care docs are at this sort of thing (although obviously the regular primary care docs had often not won prizes either!)
    I’d also underline – and really agree with those who pointed out that there aren’t enough specialists – especially if patients with dementia and all the other non-cancer diagnoses are going to get the pall care they need

    Liked by 4 people

  10. Thank you Dr. Montgomery for your very thoughtful piece and for sharing this conversation with me. We were equally concerned by the findings outlined in our paper entitled “Are family medicine residents adequately trained to deliver palliative care” recently published in the Canadian Family Physician (December, 2015)

    Needless to say, I (a physician who originally trained in family medicine who now only practices palliative care) am unable to suggest a simple solution to this important yet complex problem. But I would like to briefly highlight some potential opportunities for improvement based on our study and the authors’ experiences.

    At the physician level, it should begin with a dialogue between the palliative care educator and the family medicine resident. For example, it’s important for palliative care educators to be transparent with family medicine residents about some of our educational challenges. Discussing the “hidden curriculum” and the potential that education exclusively by palliative care physicians can sometimes inadvertently decrease residents confidence do to this work on their own in the future is a key starting point. This open conversation with trainees can help start the conversation about how their experiences may be affecting their future plans and can also open up opportunities for educators to better collaborate and for family medicine residents to develop relationships with mentors who provide palliative care home visits while also maintaining their general practice. In addition, teachers need to also be able to provide learners with more than just pain and symptom management skills during their training. It is just as important to talk about how to actually incorporate palliative care in their practices (how to bill, how to set up call groups, how to access specialized help when needed, how to work with home care, and nurse practioners in the community etc.). Since palliative care providers working in specialized groups may not be the best at knowing how to incorporate palliative care into general practices, collaboration between both groups is key when designing and refining educational programs.

    At the system level, there is also much work to be done. A few examples include improving family physician access to palliative care providers around the clock for complex situations that arise (after hours on-call access via phone consultation), improving universal access to high quality palliative care education programs geared towards family physicians, and finally improving remuneration for family physicians to provide home visits during their busy practices while also adequately remunerating palliative care providers to provide readily accessible consultations to family physicians when needed. In Canada, there are several advocates that have been working on some of these challenging system level changes including some of the senior co-authors of our recent CFP study discussed by Dr. Montgomery.

    Liked by 2 people

  11. Thank you Dr. Montgomery for your very thoughtful piece. We were equally concerned by the findings outlined in our paper entitled “Are family medicine residents adequately trained to deliver palliative care” recently published in the Canadian Family Physician (December, 2015)

    Needless to say, I am unable to suggest a simple solution to this important yet complex problem. But I would like to briefly highlight some potential opportunities for improvement based on the study and the authors’ experiences.

    At the physician level, it should begin with a dialogue between the palliative care educator and the family medicine resident. For example, it’s important for palliative care educators to be transparent with family medicine residents about some of our educational challenges. Discussing the “hidden curriculum” and the potential that education exclusively by palliative care physicians can sometimes inadvertently decrease residents confidence do to this work on their own in the future is a key starting point. This open conversation with trainees can help start the conversation about how their experiences may be affecting their future plans and can also open up opportunities for educators to better collaborate and for family medicine residents to develop relationships with mentors who provide palliative care home visits while also maintaining general practices. In addition, teachers need to also be able to provider learners with more than just pain and symptom management skills during their training. It is just as important to talk about how to actually incorporate palliative care in their practices (how to bill, how to set up call groups, how to access specialized help when needed, how to work with home care, and nurse practioners in the community etc.). Since palliative care providers working in specialized groups may not be the best at knowing how to incorporate palliative care into general practices, collaboration between both groups is key when designing and refining educational programs.

    At the system level, there is also much work to be done. A few examples include improving family physician access to palliative care providers around the clock for complex situations that arise (after hours on-call access via phone consultation), improving universal access to high quality palliative care education programs geared towards family physicians, and finally improving remuneration for family physicians to provide home visits during their busy practices while also adequately remunerating palliative care providers to provide readily accessible consultations to family physicians when needed. In Canada, there are several advocates that have been working on some of these challenging system level changes including some of the senior co-authors of our recent CFP study discussed by Dr. Montgomery.

    Like

  12. Thank you Dr. Montgomery for your very thoughtful piece. We were equally concerned by the findings outlined in our paper entitled “Are family medicine residents adequately trained to deliver palliative care” recently published in the Canadian Family Physician (December, 2015)

    Needless to say, I am unable to suggest a simple solution to this important yet complex problem. But I would like to briefly highlight some potential opportunities for improvement based on the study and the authors’ experiences.

    At the physician level, it should begin with a dialogue between the palliative care educator and the family medicine resident. For example, it’s important for palliative care educators to be transparent with family medicine residents about some of our educational challenges. Discussing the “hidden curriculum” and the potential that education exclusively by palliative care physicians can sometimes inadvertently decrease residents confidence do to this work on their own in the future is a key starting point. This open conversation with trainees can help start the conversation about how their experiences may be affecting their future plans and can also open up opportunities for educators to better collaborate and for family medicine residents to develop relationships with mentors who provide palliative care home visits while also maintaining general practices. In addition, teachers need to also be able to provider learners with more than just pain and symptom management skills during their training. It is just as important to talk about how to actually incorporate palliative care in their practices (how to bill, how to set up call groups, how to access specialized help when needed, how to work with home care, and nurse practioners in the community etc.). Since palliative care providers working in specialized groups may not be the best at knowing how to incorporate palliative care into general practices, collaboration between both groups is key when designing and refining educational programs.

    At the system level, there is also much work to be done. A few examples include improving family physician access to palliative care providers around the clock for complex situations that arise (after hours on-call access via phone consultation), improving universal access to high quality palliative care education programs geared towards family physicians, and finally improving remuneration for family physicians to provide home visits during their busy practices while also adequately remunerating palliative care providers to provide readily accessible consultations to family physicians when needed. In Canada, there are several advocates that have been working on some of these challenging system level changes including some of the senior co-authors of our recent CFP study discussed by Dr. Montgomery.

    Like

  13. Comments copied from our Facebook page:

    Emma Greenwood: Thanks Brett. This was a great reflection piece. I was a GP and now I work solely in palliative care in a regional Victorian city. I work as the doctor with the community team and in the hospital. I am passionate about the importance of primary care, especially GPs. I was lucky to have a GP mentor in my GP registrar days that demonstrated true cradle to grave care. I would like to think that a large part of my current role is supporting/empowering GPs and not replacing their vital input.
    Like · Reply · 4 · January 6 at 9:08am

    Brett Montgomery: Sounds great, Emma.
    Like · Reply · 1 · January 6 at 1:38pm

    Joanna Bornshin: Thanks for pointing out Decision Assist Emma. I would also just clarify that in WA there is a separate service that has been in existence for ~10 years – WA Palliative Care Outreach Service through the WA health department. Also if you are based in WA and interested in palliative care then there are several options open to increasing your palliative care practice – 6 month rotations as a registrar within traditional hospice/tertiary hospital setting or 6 months with the solely community based Silver Chain (I think this is usually seen as more desirable for advanced GP trainees as it is not hospital based) which is listed with WAGPET. Alternatively some choose to increase their exposure by working as a GP with the Silver Chain managing a region of metropolitan palliative care patients with the support of specialised nursing/allied/medical staff. I wonder if the challenges highlighted by the Canadian research were partly as 4 weeks is too short to develop much competency, and whether another issue is the inadequate remuneration of GPs for home visits under Medicare.
    Like · Reply · 4 · January 6 at 11:52am · Edited

    Emma Greenwood: Do all the GP’s reading this know about the Decision Assist resources available to them in Australia? Phone support line for GPs 24 hours a day and a downloadable app called palliAGED. More resources including education events through http://www.caresearch.com.au

    Redirect
    CareSearch is an electronic resource for palliative care researches and clinical specialists providing care for people with a life limiting illness.
    CARESEARCH.COM.AU
    Like · Reply · 2 · January 6 at 9:14am

    Like

  14. Emma Greenwood has mentioned Decision Assist resources for GPs. The 24 hours 7 day a week phone line contacts GPs directly with a large specialist palliative care service. GPs can talk directly to a palliative medicine specialist – 1300 668 908.

    I am the manager for GP palliative care education and resources project, part of Decision Assist, a program funded to enhance the provision of palliative care and advance care planning services to the aged nationally.

    We have developed many educational activities and resources for GPs based on a palliative care framework of care developed by ANZSPM. The framework of palliative care is a tool that uses three prognostic trajectories, to support GPs to proactively manage their patients’ care as it transitions from curative to palliative and to facilitate a quality end of life according to patient preferences.

    Activities, accredited by RACGP and ACRRM, include a workshop, an online modulue available through RRMEO and gplearning (as an alternative to the workshop), an end-of-life clinical audit and an ALM. Other non-accredited activities include videos about managing 4 common palliative care symptoms (pain, nausea and vomiting, dyspnoea and delirium) plus an online case of the month discussion.

    An extra word about the end-of-life clinical audit. GPs are reporting that it is very useful and increased their confidence in managing patients at end of life. Interestingly, the average age of the patients in the completed audits is 81 and the majority of patients died from one or more non-malignant conditions.

    Activities are listed on http://www.caresearch.com.au/caresearch/tabid/3227/Default.aspx

    Like

  15. A great conversation started by Brett’s article, which is honest and reflective of many others’ views. Thank you for all the comments from the Palliverse community.

    I’m a Palliative Care Physician in South Auckland, NZ and here’s my take on the situation.

    Are we in specialist palliative care victims of our own success? We fought very hard to establish our speciality but now 3 decades later we are now in the position of needing to “sell” palliative care back to the generalists that are no longer confident to provide palliative care. Are we guilty of disempowering a generation of GPs and other generalists from providing something that used to be part of their core work?

    NZ’s Workforce projections for palliative care doctors and nurses are dire. We aren’t quitters though, we will hang in there, but we can’t do it without everyone else’s help. I agree that palliative care is everybody’s business, and we need to reach out to the others in our local communities and get to know each other. Concepts such as “turf war,” need to be retired, It’s not about who owns the patient, as they are OUR patients, that we SHARE.

    I like nothing better than teaching keen students, if you are keen to learn I am keen to support your palliative care provision. I may have more experience in dealing with complex palliative care issues, but you know the patient and their family much better than I do having looked after them over much longer periods of time. I have a supportive role to play in the health care team, but the GP remains the primary care provider. I believe that there is much that we can learn from each other.

    Palliative care provision is not easy work, it requires extra input, including home visits, to provide extra support to patients and their families going through possibly the worst time in their lives. You are unlikely to be highly paid for your efforts but there are other rewards. A job well done, trauma of dying decreased, making a difference in someone’s end of life will leave a lasting memory/impression in their families’ lives too. Providing palliative care may not earn huge amounts of cold, hard cash, but you do earn warm, grateful goodwill which is priceless. “My GP really took care of us, right until the end, and even afterwards,” as bereavement support may also be required.

    My dream is for Palliverse, the virtual community of practice, to be translated into real world communities of practice. Through building relationships, collaboration and increased engagement, we can make a bigger difference. Who wants to join us in our community palliative care/end of life care revolution?

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  16. Thank you Brett, for an excellent opinion piece. I am at the other end of the spectrum, having been a GP for 25 years. I have grown into my role in providing palliative care. I shudder to think of some of my decisions from long ago, but that is how we learn and improve, by reflecting on our practice.
    It is true that some Pal med specialists don’t see GPs having a role. I have encountered this first hand in my area. Also, there are barriers for GPs trying to gain accredited training. I have previously written to the RACP suggesting that the Diploma in Palliative Care shouldn’t have to be taken exclusively in a tertiary centre. Using the Diploma in Child Health as an example, I argued that there should be other ways for a GP to complete the Diploma in Pal Care. This can be important for GPs who have roles in public hospitals, as part of their credentialing. The reply from the RACP was negative. They weren’t going to consider any other option. This was back in 2010/11.
    As you age with your patients, you realise that you will want to help them die with dignity. I think that that was the impetus for me to improve my skills. The majority of palliative care is listening and talking, and I had to change my focus a little to allow my patients time to tell me what they want. It becomes easier to initiate conversations. Generally, as in other parts of medicine, the use of medications becomes reasonably straight-forward. The challenge is in communicating.
    Good luck with your practice, and with the support of like-minded colleagues, I am sure that your skills will improve immensely.

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  17. Pingback: Family doctor involvement in palliative care: what’s its prognosis? |

  18. It certainly does seem that Palliative Care can be an excuse for doctors and GP’s to abandon their patients. It seems in Qld ,it is very difficult for palliative care patients to get access to GPs and good medical care once they are labeled as Palliative ( Which often occurs too early destroying hope ). In our experience public palliative care patients are pushed on to early palliative care and are expected to rely on very inexperienced doctors, sometimes just nurses. You can be promised expert care only to find very poor care. Palliative Care patients are treated as a burden to the system and are encouraged to accept only the cheapest treatment. In Queensland most people take access to Gp’s for granted but yet many palliative care patients are discouraged from seeking treatment from Gp’s and other doctors. Many Gp’s are lazy and disgard patients as soon as they have a palliative care label. This is a system failure to provide good medical care to the poor. Our governments see care for the poor as a burden on the system. Palliative Care patients are treated as less then human. All patients should have access to qualified doctors and this is not happening in Palliative Care. Palliative care doctors that we met were very inexperienced and had very poor communication skells. It is extremely stressful to watch family members denied good care. I would wish that many GPs become involved in Palliative Care which should be a major function of any GP practive. People need experienced doctors who they know and trust. Why do GPs give up their role to allow patients to be cared for by inexperienced trainee doctors and nurses ? https://ourhealth.org.au/have-a-say/have-your-say-now/palliative-care/a-carers-response-statewide-qld-strategy-end-life-care

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    • Thank you very much for sharing your views. I’m so sorry to hear that your experiences with palliative care and GPs have not been as excellent as you or I would want and expect.

      I agree with many of your points. Labelling patients as ‘palliative’ is often unhelpful, especially if it destroys hope. Palliative care should never about labelling patients or destroying hope. In fact, the core of palliative care is about focusing on the whole patient and their family, rather than the disease they are often labelled with (e.g. the fellow with lung cancer in bed 12). Furthermore, good palliative care is about promoting hope for a better quality of life and death, rather than destroying it.

      In my own experience as a palliative care specialist, and from what Brett has written, I believe that most palliative care and general practice doctors and nurses are keen to do the best they can for their patients. However, as you have noted, the system often fails all of us, especially for the poor. If you can, I would encourage you to discuss your concerns directly with those general practitioners and palliative care doctors and nurses that you have mentioned in your post. You may find that many general practitioners would like to keep looking after their patients and meet their palliative care needs, but may not know how (as Brett highlights in his article).

      Finally, I would like to encourage you to contact your member of parliament, to share your story and concerns with them. A system-wide approach is needed and this needs the support of not just patients and consumers, doctors and nurses, but policymakers and politicians as well.

      Once again, thank you very much for sharing your views with us!

      Yours respectfully, Chi

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      • Thank-you very much Chi for your reply. I aggree with most of the theory but it is how it is used in the public health system that I dislike. People are referred as early as possible rather than when appropriate. I have attempted to speak to both state and federal health ministers and shaddow health ministers, this has been very dissappointing. It seems governments are only interested in taming rising health costs and I did not see much evidence of any genuine concern for the welfare of public hospital patients. The next step in reducing rising coats will likely be compelling vulnerable people to accept “voluntary” euthanasia rather than be a burden to the system and to their families. The most disappointing thing was my attempts to speak to senior palliative care doctors. I naively expected some understanding and compassion but saw only arrogance and an unwillingness to listen. They just seem to want to say “We know best” .

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