What Surgery Can Learn from Palliative Care

Interview with Dr. Lauren Daley, MD, CCFP (PC)

Interview with Dr. Lauren Daley, MD, CCFP (PC) by Dr. Nicole Jedrzejko, PGY3


Surgery’s relationship with death is adversarial to say the least. A constant foe, we resect, suture, and drain with goals to reject the spectral presence of death in our patients’ lives. And yet “we’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being1.” A surgeon said these words, in fact Dr. Atul Gawande, author and general/endocrine surgeon at Brigham and Women's Hospital in Boston. His acclaimed fourth book Being Mortal on healthcare’s relationship with end-of-life, is a stark reflection on the limitations of surgery and medicine in providing care to patients at all stages in dying, from his patients to own father. Surgery has been slower to adopt patient care principles that has made palliative care one of the most valuable services available to patients at end-of-life. I sat down with Dr. Lauren Daley, palliative care physician at St. Paul’s Hospital in Vancouver to discuss the relationship between palliative care and surgery, and what we can learn from her world.


NJ: Why do you work in palliative care?


LD: When I was young, my mom died in a car accident. And that experience really showed the value of people looking out for you whenever you’re at your lowest point. That’s what drove me to medicine in general; hearing people’s stories, meeting people at horrific moments in their lives and supporting them through it. I naïvely thought that’s what medicine would be all about, then I got into med school and very quickly realized that it was entirely different than I anticipated. The focus was on putting people through things, rather than hearing stories and respecting their narratives. Medicine did lip service to narrative medicine and talked about what it meant to, “treat people the way they wanted to be treated,” but I wasn’t seeing that in practice. This isn’t what I was signing up for!


Early on in med school I did a rotation in palliative care, and realized these are my people! It was clearly an area that honoured their wishes, one of the few areas that didn’t make people worse before they became better, not just holding on through this treatment to the next step. So immediately I realized this is where I belong, and every experience since then has validated where I’m meant to be. I am passionate about patient stories and hearing people’s experiences, and trying to understand where they’re at based on the history they bring, not only alleviating suffering but leaning into suffering.


NJ: “Leaning into suffering,” I like that. As if suffering isn’t something to be frightened of all the time. Something you live with, instead of endure or fight through.


LD: Exactly. That’s the most valuable part of what we do. Yes, “palliative” [in Latin] means “to cloak,” “to protect,” to help diminish suffering whenever we can and for as long as we can. But soon in my career I realized removing all suffering is a utopian ideal, and to think we could do that is naïve. What we can do is not run away from suffering. Lean into it. Our presence through tragedy and grief is the most important thing we can offer, and I would argue that for us it’s more important than any technical skill we can offer. Patients will remember if they felt safe, listened to, and yes technical skill is important to any surgeon, but it isn’t everything.


NJ: What does a day in your life look like?


LD: I work in a lot of areas, so I’m in the Acute Palliative Care unit, I do consults throughout the hospital [St. Paul’s Hospital], and I also work in hospice. Maybe I can talk about a typical day on the unit?


My day starts a lot later than your day [laughs], which is great. I arrive on the ward, sit with our interdisciplinary team. We work with nurses, social workers, OTs, PTs, spiritual health, and we review the board and go through each patient. Similar to any other ward, we discuss any issues for the day. Most of our time on the Palliative Care Unit specifically is acute symptom management, it’s helping manage complex pain. Many people think it’s cranking up morphine until pain goes away, but it’s more nuanced than that. We need to understand the pathophysiology of the pain, where it’s coming from, what’s driving it. What receptors would be best to target. Are they opioid receptors or something else? We think carefully about interventions that may help, from IR to vertebroplasty to nerve blocks. Essentially, I go through a Review of Symptoms in order to nail down what makes patients unwell, and create a plan for each of them.


We are dealing with patients with serious, often life-limiting diagnoses, which comes with a huge psychosocial component of our jobs. We do a lot of discussions with patients and families on goals of care. After the physical care is dealt with, we have to learn what is important to them, and come up with medical recommendations to provide plans for what their values, wishes, goals are for the future. That takes up a lot of my day. Those conversations are worthwhile, but can be time-consuming. A lot complex family dynamics. These families are often grieving, and grief can bring many aspects of a person.


We do direct-from-community admissions, so if someone in the community has a life-limiting diagnosis or many symptoms, we get calls from home care nurses or community-based family or palliative physicians saying they need patients to come directly to the unit, to avoid the Emergency Department. We have up to 13 inpatients at a time. We liaise closely with Medical Oncology, the BC Cancer Agency. Many of our patients are still receiving medical interventions and we try to get involved early. We need to optimize symptoms so patients can continue to tolerate their treatment, if that’s what they want, so we need to coordinate with many of those teams. 


NJ: In surgery, we’re not often at the front of what’s happening in the community at all times.


LD: The community can be challenging, and it’s changing. Our role in acute care is to facilitate easy admissions to our unit. The last thing we want is for a patient in pain to wait in Emerg for 5hrs.


NJ: These discussions can be emotionally exhausting, sometimes the hardest thing we do that week, and it’s your day-to-day.


LD: It can be exhausting, but if you offer your full presence, it can be very fulfilling. Hearing these stories, offering literally nothing more than my ear, not going into the conversation with an agenda. It reminds me of the wonderful things in my life and delight in simple pleasures. My days aren’t long, but they can feel really long.


NJ: What do you find most patients are looking for at end-of-life? Is there a commonality, or pattern, that we should be aware of?


LD: It’s a hard question because each is very unique. Everyone carries different values, so if I were to generalize, it’s what people want throughout their whole lives. To be seen, to be heard, to feel like someone is paying attention to them, and that they’re not forgotten. It’s easy in medicine for people to feel like there is this arbitrary line, where is patients are no longer “curable” they crossed this line and there’s no role for medical oncology, or surgery, or gastroenterology, or you name it. And so many patients I see feel abandoned by so many people who have been involved in their care for a long time, because it’s felt like there’s no longer any…investment in their outcome.


NJ: That’s heartbreaking.

LD: And again, we’re all busy, and we understand, but that’s what I see. In general, what people want is to be seen, heard, and to know their voice isn’t any less because they have less time. Or are perceived to have less time. Well, we could all die tomorrow. I try to come back to patients as a person, to honour them, which is something we should all do.


NJ: I love the emphasis you put on not having a hard line between curative-palliative.


LD: It’s an archaic way of thinking. Palliative Care isn’t a very old specialty. It was the 1980s when it started gaining traction and became recognized as its own specialty, and yet that’s an old way of seeing palliative care. We are involved in cases where patients may very well be cured. Managing symptoms is beneficial for patients and we know patients do better when they feel better, and that’s backed by evidence.


NJ: From there, I want to talk about death. In surgery especially, it’s taken so personally. A death on your service often comes with feelings of failure, regret, and reflection. M&M rounds can be hard because on most days, it’s rare for our patients to die. To you, what does a good death look like? 


LD: I recently went to a conference in San Francisco about redesigning end-of-life. One of the speakers, Ira Byock, talked about how people talk about “good death” and linguistically it’s hard to define, because no one can report that. No one can tell us. In fact, what we should be saying is “good dying.” Death is an event that happens, dying is the process. In surgery it’s different, often it’s sudden, unexpected. In my mind, good dying is less about what it looks like and more whether we are offering treatment and care that aligns with a patient’s values. Taking the time to dissect that is more likely to provide an environment to provide good dying for that person.


It can look very different! I’ve seen beautiful dying experiences in the ICU, in palliative care units, in someone receiving chest compressions because we knew it’s what they want, with multiple antibiotics on board…it comes down to what’s reasonable and what the patient hopes for. But we have a role to be recommending things that are medically appropriate. It’s not like a restaurant menu, “I’ll have the CPR with a side of BiPAP,” that’s not how it works. We need to do our due diligence to match patient desires with what’s medically appropriate.


NJ: What do you see your role as for patients that are ambivalent in the “curative” vs. “non-curative” treatment arms? We can present risks and benefits, statistics on outcomes, and let the patient decide, but what do you see for patients who cannot decide?


LD: I start with no one can predict the future. We do what we can with available evidence and statistics to provide the best available option. We are often guilty of making a one-sided decision, based on the literature, but it often doesn’t consider patients as being experts in their own life. Where I start is typically “what does quality of life look like for you?” “What’s the ideal situation for next week, next month, next year?” Staying grounded in the context of their illness, and the bottom line. 


The Serious Illness Conversation guide2 is something every surgeon should know about. It’s a guideline being researched out of Dana-Farber [Cancer Institute], a standardized guide which involves patient-tested language to get to what’s important to people. It acts as a framework for our medical expertise and recommendations, a translation between what patients want and what we can offer. One of the question there is “what are you willing to go through for the possibility of more time, knowing more time is not guaranteed?” Their ability to eat? Use the toilet? Be mobile, bathe? Some people are happy to watch sports all day and eat ice cream. You’d be surprised how many patients have already thought about this. It’s our job to hear that and act accordingly. When people are ambivalent, it’s often because we haven’t asked the right questions. We also can’t be the judge of how much time is worthwhile. Sometimes in in Emerg and admitting a patient and calling another service, say Surgery, and the response is “oh, they’re going to the palliative care unit though? Are they palliative?” That term irks me because I don’t know that they mean by that. People use palliative as a euphemism for dying, and it colours the perspective of consults immediately if consults are worth their time, or certain types of interventions. We have people on our unit who undergo palliative procedures, bypass surgeries, diverting ostomies, it comes back to that patient. That person gets to decide what their time is worth going through.


NJ: In surgery we try to nonoperatively manage many of palliative care patients’ issues. Pain, nausea, constipation, wound healing, mobilization…what do you notice is a difference in the way surgically-minded providers manage those symptoms, and the way you manage them? 


LD: It all depends on clinical contexts. Postoperative pain management is different from chronic pain and from malignant pain. An understanding of how opioids work and how to prescribe them is important. That is a basic skill every doctor should be able to master. In terms of difference, for palliative care doctors, pain is my most important symptom to manage. Rightly or wrongly, for a surgeon, that is often secondary. An inconvenience. The value we place on those symptoms is the big difference. I know I may not be able to change the underlying cause of the symptom, so managing the symptom itself is my focus. Pain is terrible no matter the cause, and for the patient it is often the most important thing, so acknowledging it even if it’s second in your list of priorities is important.

NJ: You’re right, we should be voicing to all our patients.


LD: Exactly. Time is always a concern for us in healthcare. We are stretched to our limit, but the way I see it is frontloading our conversations so everything that follows is much more efficient. If we take time up front to explain what’s going on in their health, to gain their trust, everything else becomes so much easier. I often get consulted to help with challenging goals of care conversations, and I realize quickly that it spiraled into this crazy dynamic when all that was needed was more upfront time to get on the same page.


NJ: From there, what are some of surgery’s biggest misconceptions on what palliative care can offer the inpatient?


LD: I have a whole blog post3 on this! I was seeing a patient recently with cholangiocarcinoma who presented with gastric outlet obstruction. There was a lot of discussion on how to manage her obstruction, a venting g-tube or a palliative bypass. I went to the chart and someone from the surgical team wrote “either gastrojejeunal bypass or palliative.” As if it’s one or the other! The reality is we do both all the time. Our involvement isn’t dependent on whether or not this patient will have more interventions, even surgery. We send people to the OR often for issues that arrive during their hospital stay. That is one of the biggest misconceptions, the either or. It’s disappointing to me that we’re still having that conversation since that was palliative care 40 years ago.


I worry that even though palliative care is taught more frequently [in med school], we all get indoctrinated in the culture of our practice, which is dictated by our well-respected preceptors who are great at what they do, but may not have up-to-date knowledge on palliative care’s scope. Palliative care isn’t a euphemism for dying.


NJ: And confusing the two terms potentially withdraws options for patients.


LD: Yes. Some people think there is a magic time when we get involved at the end of life, which is false. We can get involved at any point. Another misconception is when we get involved, people die sooner. There are reasonable studies showing if we are involved early, and providing care along disease-modifying therapies, people live longer and have better outcomes, better bereavement. The landmark study is Temel’s RCT on patients with metastatic lung cancer4, as mentioned in [Being Mortal], about the outcomes of early palliative care randomized to patients receiving standard oncologic care, with patients receiving early palliative care getting less aggressive care at the end of life, but longer survival, better quality of life and mood. [Gawande] explains how if this was a drug, pharmaceutical companies would be all over it! 


People can think palliative care is holding hands, music therapy [laughs], soft medicine. But what we’re doing is a lot of acute medicine on our units. And most people from our units are discharged home.


NJ: That is amazing!

LD: Many people come for stabilization of acute symptoms and intense care planning, and then they go home. They can go off to the Cancer Agency, return to the unit as required. If they decide treatments aren’t helping anymore, we can help transition to end-of-life in hospice, or at home. It’s less likely they experience end-of-life on our unit. Even patients have that misconception, some arrive thinking “this is where I’m going to be when I die,” when typically, there stay for a couple days.


NJ: Do you feel patients receive differing tiers of care based on their socioeconomic status when accessing palliative services?


LD: Palliative care is an underresourced area of medicine, and yes, if you live in an area without these services, your dying experience will look very different. What has changed things is Medical Assistance in Dying [MAID] is now an option. I won’t comment on it today, but there are people across Canada who have access to MAID without the opportunity to access palliative care, which is troublesome.


NJ: You’re right, that’s a whole different conversation.


LD: Even in [Vancouver], there are huge differences in levels of privilege for our patients. I think St. Paul’s does a good job, but at the same time we know that just like in birth, it takes a community to help people in death. There are people who don’t have loved ones, family, friends, to be there. It makes me sad. 


NJ: What is a pearl of wisdom you’ve earned in your work that you’d like to share with our surgical community?


LD: The most important thing you can offer someone with limited time is your presence. Not just physical presence, but a small moment, whatever you have, where you’re not thinking about your list of patients, or your slate, or your labwork, but you’re with that person and see them as an individual. People feel that, and sometimes that’s all you need. It doesn’t take as much time as we think.


We also have to remember that dying is a more human than medical experience. We need to remember that as healthcare providers for people with limited time. Engaging in these meaningful interactions fills you up, and that point of contact, that extra time with a patient, is not a debt incurred. 


NJ: I regret not joining a bunch of St. Paul’s surgical patients in the TV lounge watching the Raptors game [laughs]. Thank you so much for doing this.


LD: Thank you for inviting me! We would be so welcome to having more surgery people working with us.





Dr. Lauren Daley is a Palliative Care physician based at St. Paul’s Hospital. She works on the acute palliative care unit, with the palliative care consult service, and in hospice. Lauren is passionate about elevating the general public’s awareness of end-of-life issues. This includes demystifying the often poorly understood world of palliative medicine. For more about Lauren and her work, you can check out her website at www.talkdyingtome.com or follow her on social media @talkdyingtome.


Resources


[1] Gawande A. Being Mortal: Medicine and What Matters in the End. New York (NY): Picador, Metropolitan Books, Henry Holt and Company; 2017.

[2] Serious Illness Care British Columbia Community of Practice – BC Centre for Palliative Care [Internet]. BC Centre for Palliative Care. 2019 [cited 27 July 2019]. Available from: https://www.bc-cpc.ca/cpc/community-of-practice/groups/serious-illness-care-british-columbia-community-of-practice/

[3] Daley L. 5 Common Palliative Care Myths Debunked [Internet]. Talk Dying to Me. 2019 [cited 27 July 2019]. Available from: https://www.talkdyingtome.com/new-blog-1/2019/4/23/5-common-palliative-care-myths-debunked/

[4] Temel J, Greer J, Muzikansky A, Gallagher E, Admane S, Jackson V et al. Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer. New England Journal of Medicine. 2010;363(8):733-742.





Serious Illness Conversation Guide

©2015 Ariadne Labs: A Joint Center For Health Systems Innovation (www.ariadnelabs.org) & Dana-Farber Cancer Institute. Revised Feb. 2018. Available at: http://www.bccancer.bc.ca/new-patients-site/Documents/SeriousIllnessConversationGuideCard.pdf