Neurosurgeon and palliative care specialist Jeff Hall on a new model of neuro-palliative care
“I like the immediacy of surgery, but now I see palliative care as a continuity of care… I want to look after patients better, longer, and more completely.”
By Devon Phillips. Jeff Hall recently took a year off from his neurosurgery practice at the Montreal Neurological Institute to complete a year-long fellowship in palliative care at McGill University. Despite some initial raised eyebrows from his colleagues, Jeff insists that the combined skills of palliative care and surgery are a good fit, and will greatly benefit patients with life-limiting or life-threatening neurological disorders. I met with Jeff at the MUHC in Montréal, Québec.
Q: I understand you have been working as an epilepsy surgeon at the Montreal Neurological Institute, or the “Neuro” for a number of years. Can you give me a snapshot of your practice and the patients you treat?
A: I came on as an Assistant Professor in Neurosurgery in 2004 after completing a Fellowship in the Surgery of Epilepsy. I was recruited for this expertise and to look after patients with brain tumors. Seizures can arise from many kinds of brain disorders ̶ it could be a birth defect, a vascular malformation, a tumor, an accident or an infection. We try to cure seizures through surgery. The core issue is to find the source of the seizures and understand if a surgery in that area can reduce or eliminate them, without a significant risk of creating a new problem or deficit. These are challenging questions to answer since the effect of the seizures as well as the risks and benefits surgery, need to be individualized with respect to quality-of-life issues specific to each patient.
About half of my practice involves neuro-oncology meaning patients with tumors anywhere in the brain. I often get referred patients who have a brain tumor in close association to eloquent areas so this can mean operating on patients who are awake (local anesthesia with intravenous sedation) in order to perform a maximal safe resection without causing any new deficits. These techniques developed from epilepsy surgery are equally important to treat brain cancer.
Q: Why did you decide to do a fellowship in palliative care?
A: To be honest, I felt like I was letting patients down with their aftercare. It became important to help guide them after surgery and discuss what their future would be like.
After neurosurgery, patients are sent to medical oncology or radiation oncology and allied professionals, but they will often come back to me as the neurosurgeon and ask my opinion on the treatment plan. I consider it a great privilege when the patients form this sort of bond, a kind of intimate relationship with their neurosurgeon. I wanted to personalize my relationship with patients and not completely medicalize the time that we can give them.
Q: So you felt there was a gap in care that led you to pursue further training?
A: Exactly. In order to fill this need, I required additional specific training. I treat patients with many types of life-limiting and life-threatening illnesses and because they specifically affect the brain, they affect cognition, communication and behavior. These illnesses are seen as difficult to deal with by other clinicians. At the Neuro, this is our special area of expertise. We have been recruiting for an on-site physician to be involved in neuro-palliative, for more than a decade, without success. I made the decision to further my training so I could apply this type of care to my patients. To my knowledge, the Directorship position for Neuropalliative Care remains unfilled, and so I have submitted an application.
Q: What did your colleagues think about your decision to pursue the fellowship in palliative care?
A: A few colleagues thought that palliative care was a bizarre thing for me to get involved in. The perception of the medical community at large is that palliative care is about end-of-life care only. This is not how I see it. I see it as a more comprehensive multi-faceted (bio-psycho-social and spiritual) care administered earlier on in any disease trajectory that might be chronic, life-limiting or life-threatening. When clinicians and patients understand that palliative care is much more than end-of-life care and is often referred to as “pain and symptom management” or “supportive care”, they see the potential applications to their practice. The vast majority of my colleagues have been overwhelmingly supportive.
Q: What has changed as a result of your training in palliative care?
A: Even after completing the fellowship year and being re-integrated into my neurosurgical practice, it is still very difficult to tell somebody who was completely healthy a few weeks ago, that they have a diagnosis that is life-limiting. There are priorities that need to be set, and these priorities need to come from the patient. What are the most important things for them? As a result of the fellowship in palliative care, I am thinking about this a lot more and able to dialogue with them on much deeper level.
I don’t want to suggest that we don’t do any palliative care currently at the Neuro, we certainly do. We now have a dedicated nurse, Justine Gauthier, and a number of physicians and paramedical staff who have expressed their desire to be involved. We have always had consult help from the MUHC which is critical, but we haven’t had anyone trained in a more holistic, whole person, family and patient-centred approach, on-site. This is the innovation that I am able to bring as a result of the fellowship.
Q: Did the fellowship provide you with specific skills or ideas that were immediately applicable to your practice at the Neuro?
A: I spent three months of the fellowship as electives in Lausanne, Switzerland to train with Dr. Gian Borasio. What a great mentor and a great experience! He was an ALS neurologist by training but is now a recognized leader in the nascent field of neuro-palliative care. ALS is where neuro-palliative care really began because this is a population where treatment options have been, and continue to be limited, so the focus had to be on high quality palliative care (excellent pain and symptom management) including an understanding of advanced care directives and the patient’s goals.
Unfortunately, the carryover of palliative care into all of the other neurologic disease populations in terms of stroke, chronic pain, neuro-oncology, dementia, Multiple Sclerosis, Parkinson’s Disease and many other important populations that we deal with has not followed the model of ALS so quickly. Here is where we have an incredible opportunity to support these patients, their families and caregivers more completely.
The disease trajectory is much longer in neuro-surgical and neurological patients compared to some of the other organ cancers. With some cancers, the course may be quite abrupt with lots of symptoms toward the end whereas with many neurologic diseases, the trajectory is over many years. I want to apply palliative care principles early on in the disease trajectory so we are looking at care through a different lens from the beginning. This is an innovative application of palliative care.
Q: Can you give me an example of what you mean by early palliative care?
A: If we look at someone who is initially diagnosed with a brain tumor or early stage dementia, instead of being solely focused the next treatment, we need to make place for a discussion with the patient and their family about what is likely to happen over time, even given the best treatments. What does the patient want to happen with the time they have left? While treatment gives hope and we have to treat to succeed, we also have to make sure this is aligned with the patient’s goals and priorities. We need to support patients in every way we can and I mean that in the true palliative care sense. It is not just about supporting their symptoms of nausea, pain, vomiting, anxiety and depression, but we have to think bigger in terms of their life and family goals.
Q: Why hasn’t early palliative care been adopted to date?
A: Some of the lay population physicians resist integrating palliative care because they associate it with end-of-life care only and are concerned that the patients will become depressed. They may not yet be aware the mounting evidence of high-quality studies demonstrating that palliative care has an added value with traditional disease-modifying treatment and that depression scores are lower when palliative care is involved.
Q: How does being a surgeon fit with delivering palliative care?
A: A few people have a hard time understanding this because they ask, “What does Dr. Hall want to do? He doesn’t want to be a surgeon anymore? He doesn’t want to look after his patients anymore?” No, this is not true. I want to look after patients better, longer, and more completely.
Initially it looks like palliative might not fit with surgery but to me the fit is quite normal and I have no trouble justifying this. When people really understand what I mean by palliative care, the integration of pain and symptom management to traditional medical care, they see it is a good fit also.
Q: What is your vision for the future of palliative care at the Neuro?
A: Research has shown that early involvement with palliative care in addition to standard care results in less aggressive interventions at the end of life, better quality of life, less depression and in some cases, longer survival. It’s critical that we develop this kind of service and that we study the outcome. Asking to build something substantial in an environment of budget cuts is not easy. On the other hand, the concept has a high degree of donor support and universal support from clinicians working with patients and their families.
I am in the process of applying for the Directorship of the Neuro-Palliative Care program at the Neuro. My vision is to create a program in neuro-palliative care which would include clinical, teaching and research services. In order for this novel endeavour to succeed, it will take the stalwart support of the MUHC and McGill Faculty of Medicine to promote the program and one day, hopefully soon, work towards the formation of Canada’s first “Chair in Neuropalliative Care”. Under these conditions, together with the impressive groundswell of support mentioned earlier, I believe the program has an excellent chance to succeed. I am expecting to have some indication regarding my dossier by late fall of 2017. I am hopeful for a successful outcome and I am excited to get started with the team!
Q: How do you see the Neuro working with other Montreal institutions?
A: I envision the Neuro developing a special expertise in neuro-palliative care which would integrate within the larger palliative care community in Montreal, at McGill and with the MUHC. To address this, I have asked to be promoted to Associate Professor and cross-appointed to oncology and palliative care. An enjoyable part of my fellowship has been getting to know the people at the MUHC, Mt. Sinai, and the Jewish General Hospital as well as the donors and volunteers. A few months ago, we welcomed Justine Gauthier, an excellent and experienced nurse in a new role for palliative care and pain and symptom management, based at the Neuro. I hope to take on a position of medical leadership but never to the exclusion of other sites within the MUHC; I believe it is important that we work together. I see the Neuro leading with special expertise in neuro-palliative made available to patients within the larger mission of Palliative Care McGill.