Why a Patient-Centered Approach to Clinical Pathways Must Include Palliative Care
An interview with Geoffrey P Dunn, MD, General Surgeon, UPMC-Hamot, Pittsburgh, PA
With the development of ever improving treatments for cancers of all types, the relative 5-year survival rate for all cancers has drastically improved over the last few decades, from 49% in 1975–1977 to 68% in 2004–2010.1 Still, the treatment of cancer can come with debilitating side effects and a profound economic burden. For these reasons, in order to give patients the highest quality of life, palliative care is often a better option than treatment for patients with poor prognoses.
The focus on palliative care has been relatively recent. Medicare coverage began to expand to end-of-life care facilities in the early 1980s after continued pressure from health care professionals.2 Only as recently as 2008 did the American Board of Medical Specialties begin offering Hospice and Palliative care certification for qualifying physicians.3 There are now over 6,000 certified physicians in the US.4 Since 2011, hospitals have been able to achieve accreditation for palliative care after demonstrating “exceptional patient and family-centered care and optimiz[ing] the quality of life for adult and pediatric patients with serious illness.”5
Geoffrey P. Dunn, MD, general surgeon, UPMC-Hamot, was one of the founding members of the American College of Surgeons Committee on Palliative Care and helped pave the way for the palliative care profession with a landmark series of articles published in the Journal of the American College of Surgeons on treating patients when a disease cannot be cured. Dr. Dunn serves on the editorial boards of a number of palliative care and surgical journals. Journal of Clinical Pathways spoke with Dr. Dunn about the growth of formal palliative care programs, the role of palliative care in patient-centered medicine, and the need for clinical pathways to incorporate patient values and quality of life considerations in order to ensure that recommended approaches are those that best serve the patient.
You were at the forefront of developing an accreditation program for palliative care. Can you tell us more about how that came about?
In the early 2000s, I was the editor of what became an influential series of articles, published in the Journal of the American College of Surgeons, that introduced surgeons to the whole concept of palliative care. I authored one of the articles in the series,6 which was about how we take a larger view of the entire landscape of surgery through the optic or vantage point of palliative care.
How has palliative care evolved since that series was published?
The article series came out only 2 months after we started the committee of the American College of Surgeons, funded by Robert Wood Johnson. What we wanted to do was begin mapping out how we were going to get the principles of palliative care practice integrated into the whole spectrum of surgical care, whether it is the operations we perform, the way we have discussions with one another, the way we identify supportive services, or the way we measure outcomes and the impact of the things that we do.
So you were helping to develop standards of practice that other health care providers could use.
Exactly. What happened over the ensuing years was that we became more formally embedded in the American College of Surgeons, because we believed that it was the one organization that could tie together the historical, social, political, and scientific strands that were relevant to practicing in the United States and Canada. The series, which was originally only going to be 10 articles, grew to continue on for 3 years, with numerous other papers being published on what deliverables should be expected for surgeons operating under this standard, venturing into territories of advanced illness, terminal illness, and, more recently, critical illness, which may or may not be terminal depending upon what decisions are made.
So that’s a quick explanation of where we started. Since then there have been some big developments outside of surgery. One was the agreement in the mid 2000s by the American Medical Board Specialties to create a specialty certification in hospice and palliative medicine. And this was unusual, because they got nine other boards to subscribe to this and be willing to offer certificates in hospice and palliative care under their egis. Then, they started issuing the certification exams in 2008. So that was the first time we had surgeons who were certified in palliative care and palliative medicine.
Now the grandfather period is over and you actually have to earn a fellowship of 1-2 years to sit for the exam. So we have really come a long way in terms of the institutional integration to now certification. It’s very much like other specialties with clinical trials on the impact or lack of impact of care, which is very relevant to surgeons. If we put a feeding tube in an older woman with dementia, are we really doing her any favors? Or are we just running up the bill with a horrible quality of life and morbidity? Those are the questions we’re now asking. Or, what operations really help in advanced conditions, when the goal is not necessarily correction or elimination of the disease but to control symptoms such as pain, leakage, and bad smells? And that is a big shift from disease-focused management to patient-centeredness.
The rules of engagement are also different. The old model was that if you fix the problem, the person is going to have some benefit in terms of survival or quality of life, but what we’re learning is that there are a lot of problems you don’t really fix. So it’s really, how do you mitigate them, how do you coexist with things, how do you play with the hand you’re dealt rather than just get rid of the hand? And that’s more and more relevant in dealing with the diseases most common in the aging population: cardiovascular disease, emphysema, dementia.
How difficult was that shift in thinking, away from treatment and towards palliative care?
My goal was always to demonstrate that this idea that may seem new is actually consistent with and well-established in even ancient principles of surgical care, which maybe we have forgotten about. We’ve forgotten how to be present with people, to understand their feelings and empathize with them about the repercussions of their treatment. So, at first, as you can imagine, there was a fair amount of skepticism, but I think by the early 2000s there was a growing awareness that we’re really not doing well with advanced illness. The hospice movement had been very successful at that time, and the topic of physician-aided suicide was being hotly contested. And my feeling about that was, “Gosh, how impoverished are we as thinkers and doctors that that’s the only thing we can come up with?” Because, all the legal and ethical issues aside, that really isn’t a very good clinical solution. So my pledge was that I’m going to do everything I can to refocus surgery’s lens on these things, but I have to do it in a way that’s intuitive. Because every surgeon will say that they aren’t someone who would abandon their patient.
How do you think patient-centered approaches to care are continuing to evolve?
Patient navigators are a great example of a kind of convergent evolution, of another important supportive service that may not be fully appreciated yet. I don’t think this is as widely developed and organized as palliative care. You can see that patient-centered care and patient navigators haven’t been widely implemented just yet. They’ve mainly been for specific disease states like breast cancer.
In the late 1970s, a cancer surgeon named Harold Freeman, who is still living, was one of the first people to show with his research that poverty is a risk factor for cancer outcomes. He found that by having navigation services, you have better compliance for screening and check ups while decreasing rates for morbidity and even mortality. That’s a very powerful vote for having navigation services, and what’s happened over time is that these services have become more formalized and available, to the point where having navigation services is almost expected for the accreditation of cancer centers. Then, the institute of medicine came out identifying this as a valuable service in 2007. And the Institute of Medicine’s good housekeeping seal of approval is very important in medicine.
The principles of navigation are a patient-centric health care delivery model, which is basically to help the individual negotiate the whole health care system. That serves to virtually integrate a fragmented health care system for the patient. So really what you’re talking about is just to have someone who can guide you through all the steps. The core function is to get rid of the barriers that prevented someone from getting access to timely care across all lines of the healthcare continuum, from screening to post-operative, to post-treatment follow-up. So you can see it’s very much a supportive function, a little different from palliative care which is directed at managing symptoms and effective communication.
So treating the patient instead of the disease?
Yes, exactly. And by patient, what we mean is the patient’s experience. In palliative care, we think of a person’s treatment as being within four dimensions: physical, psychological, socio-economic, and spiritual. You’re going to be able to put whatever is bothering someone into one of those four buckets. That’s the rationale; it’s a team service in palliative care, too. It isn’t just a physician; the core group is made up of a physician, a registered nurse, a social worker, and a chaplain or someone with experience in spiritual care. That’s the core team, but it can be expanded to include other experts, such as nutritionists. Each person adds something to that core group.
As a surgeon, how helpful is it to have a patient navigator on hand?
It just helps hospitals and patients get things done effectively. And, many times, these people provide fantastic emotional support as well for patients, which is often undervalued. Also, it’s a really important message to the minority community, for whom this program was originally designed. One of the things I’ve suggested before in my writing is that this is a good idea for anyone who is disadvantaged because of their socioeconomic status or because they’re just so psychologically or spiritually devastated by the illness they have. It started where the need was greatest, and now, well, the “ball is rolling,” so to speak.
When you deliver poor prognosis, what kind of needs do you try and address with patients to ensure a patient-centered approach?
I let the patients show me the way. I hold the pen, but I don’t write the story. I can tell you what medicine and what medical treatments can accomplish for you, I can tell you when they’ll be helpful and when they might make things worse. I can tell you how to access what you’ll need along the way that goes beyond what I can do for you, such as the social worker to figure out your benefits or the psychologist to talk to your family. Whatever it takes for us to “complete the mission,” I let them tell me that. I want the discussion we have to be about them, not about their medical problems or outlook. What does that patient want or expect?
I’ve spent a lot of time doing hospice care at homes where almost everybody was aware that they had a prognosis of less than 6 months survival and that they were in the last stage of their disease. And what I noticed in a lot of them was that their sense of hope actually improved even as their physical function declined. What I learned from that is that hope is something you can keep alive as long as you’re willing to redefine what your target is. To me, hope doesn’t mean that you insist on the same outcome day after day, no matter what is happening; I think it is a more pliable and plastic type of thing that changes when you walk into a cancer center. People who walk into these cancer centers are maybe thinking that they have a 60% chance for a cure. If you aren’t part of that 60%, then perhaps you’re hoping for a really long remission. For some folks, especially older adults, that remission might be longer than the life expectancy of their other illnesses. So, that’s almost as good as the real deal, as getting cured. And, when that’s not possible, which you may find out sooner rather than later, that hope is replaced by the hope that there will be a decent enough remission that something can get done before the end. When that also doesn’t work out, then the tradeoff becomes, well at least I won’t be miserable in my last days. And then there is also hope beyond that, in the final days: “Well, I hope my life hasn’t been a waste. I hope that what I’ve left will grow and prosper once I’m gone.” I call that the continuity of hope. Even though there is a trade off in what we’re hoping for, the feeling is the same. Because, let’s leave illness behind for a second. You can see someone with everything in the world, healthy as a bull, and they can still have less hope than someone in their final days.
Are there any special considerations given to a patients’ economic status?
Absolutely. We now have good data to show that advanced illness, chronic morbidity, and critical illness (which is a whole new thing we’ve created) are all financially devastating to families. There are pretty good statistics about what personal bankruptcies are health-related, loans that are taken out for health care costs, even with patients who have insurance. Because, now we’re finding all of these hidden copays, coverage gaps, and all that kind of stuff. So, you’re doing a patient and their family a very big service by talking to them about this information. I have a social worker who is very, very attuned to what the potential cost burden will be to patients, and that is a very big part of the equation on how care is going to proceed. Because, really, without that information, there are a lot of questions physicians and patients can’t answer. Are we going to get private duty nursing? Are we going to bring dad home? Will we have to go to a nursing home and put more money down for him to stay there? Is dialysis really going to be worth it for a couple months if it means having to go 120 miles to a facility that will do that in accordance with their other needs? You can see how complicated this becomes very quickly, and sometimes patients don’t even understand that until they’re in the thick of it. So, when we’re talking about treatment costs, this has to be something that’s brought up or we don’t really allow our patients to make the decision they want to make.
Is there ever a situation where it might be beneficial to forego treatment?
Oh, all the time. I could take you through the medical ICU and find maybe 15 of 60 patients that aren’t going to be alive in a year no matter what happens to them. This is the current dilemma Medicare finds itself in. This is where the vast majority of Medicare spending is happening: the last 6 months of life. In a lot of cases, the medications and procedures are very expensive, and you aren’t getting a lot back. Many of the decisions I have made about ongoing medical care or aggressive treatments in the ICU have been made by thinking about what the quality of life was like in the year before they first came to the hospital. If that’s been something that has been downhill, usually people, or the family speaking for them, don’t have an appetite to do more interventions. However, you have to be able to explain that to them. More often than not, when you give people all the information available to them, they will say they’d rather not have that treatment.
How do you see clinical pathways relating to patient-centered care?
Well, clinical pathways are our way of leveling the playing field. With clinical pathways, it’s very easy to identify what works and what doesn’t. What we have learned is that, yes, if there are reminders, if there are standardized ways of doing things, this makes it easy for teaching since there is more consistency. In the old days, medicine and surgery was a cult of personality, where you had a lot of guys sticking to a certain way of doing things because it was the way they’ve always done things. But, if you compared how you treated something to the way 3000 others treated it, you might start to realize that your way isn’t the best method of doing things. So, clinical pathways allows for those kinds of comparisons.
But we have to make sure that physicians are able to make exceptions to their pathways. That’s what their medical education is for. Ninety percent of the time you don’t have to be a doctor; we have a lot of nurse practitioners and physician assistants who can do a lot of this stuff as well or better than a lot of the doctors. The value added as a physician is knowing when the exceptions are occurring. In fact, it’s even more than education; it’s the experience. There are some decisions where I wouldn’t be as comfortable if a physician in his or her first year made as opposed to one in his twentieth year.
Do you think that pathways do enough to take into account social, economic, and quality of life considerations?
I’ll put it this way: I think there is more awareness that pathways need to be including those things in their development. I looked at the literature available before the late 1990s in surgery, and quality of life is hardly even mentioned. Now I think those considerations are just about everywhere. I think the same thing is really happening to clinical pathways. People are starting to realize that we have to include these things when we’re talking about care.
1. American Cancer Society. Cancer Facts & Figures 2015. American Cancer Society Website. Atlanta: American Cancer Society; 2015:1-3. Available at: http://bit.ly/1tMudoF. Accessed January 13, 2016.
2. History of Hospice Care. National Hospice and Palliative Care Organization Website. http://www.nhpco.org/history-hospice-care. Updated July 23, 2015. Accessed January 13, 2016.
3. Certification for Hospice and Palliative Medicine Specialists. American Academy of Hospice and Palliative Medicine Website. http://aahpm.org/education/certification. Accessed January 13, 2016.
4. Number of Certified Hospice and Palliative Medicine Physicians by Cosponsoring Specialty Board. American Academy of Hospice and Palliative Medicine Website. http://aahpm.org/hpm/number-certified. Accessed January 13, 2016.
5. Facts about the Advanced Certification Program for Palliative Care. The Joint Commission Website. http://bit.ly/1PbXrB2. Published April 17, 2015. Accessed January 13, 2016.
6. Dunn GP. Patient assessment in palliative care: how to see the “big picture” and what to do when “there is no more we can do.” JACS. 2001;193(5):565-573.