Recently, a nice older woman came to our Specialized Oncology Care & Research in the Elderly (SOCARE) clinic with her husband and daughter. She is in her 80s and has pancreatic cancer.
She had been scheduled to start chemotherapy, but on two separate occasions had been too weak to do so. The combination of a loss of appetite and diarrhea sapped her strength and caused her to lose weight.
She was referred to us to evaluate whether we could get her strength back to a point where she could tolerate chemotherapy, or should she be transitioned to hospice care.
When I walked in to see her for her visit, she was lying on the exam table, draped with her coat, which was reversed like a blanket, feeling weak, and unable to sit up comfortably.
Her husband held her hand, looking concerned and sad; her daughter sat nearby, teary-eyed. I started to construct my, “Let’s-talk-about-care-goals” speech in my head as I introduced myself.
The patient’s first response to my question about how she had been doing was, “I’m not sure. My memory is not so good.” She was on medications for her memory problems. She also has diabetes and a few other conditions.
As I began asking her and her family about their expectations, it was clear that they wanted, if at all possible, to pursue chemotherapy in hopes of controlling her cancer.
But they understood that this may not be possible, and they also understood the benefits of hospice care based on personal experience. She had received care from a combination of providers before being seen in SOCARE, and she was in transition between oncologists.
They felt frustrated by the challenges of seeing multiple providers, none of whom seemed to know the “full picture” of her health condition.
A System in Crisis
This patient represents the current face of cancer – older adults, possessing many other complicating conditions, with multiple symptoms affecting quality of life, and with care that is fragmented across multiple specialists in multiple settings.
A new report from the Institute of Medicine, entitled Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis, is the first large-scale attempt to acknowledge and address this new reality of cancer care.
As the report summarizes, “Cancer care is often not as patient-centered, accessible, coordinated, or evidence-based as it could be.”
To those of us who have been warning about the coming crisis – doing our best to raise concerns, gathering the necessary evidence to highlight our fears, and treating this rapidly-growing group of complex patients — it is gratifying to see the attention the IOM report is generating, especially in the social media world.
Excellent summaries can be found from bloggers, such as Amy Berman, a cancer patient herself and senior program officer at the John A Hartford Foundation, at the Health AGEnda site, from WonkBlog contributor and University of Chicago Professor Harold Pollack, and from the more skeptical Lancet editorial.
Even ASCO’s Chief Medical Office, Richard Schilsky took note via Twitter:
Cancer care crisis. http://t.co/pM93QZ2a7S
— Richard Schilsky (@rschilsky) September 11, 2013
Recognizing the problem is the first step toward solving it.
A New Model of Care
The fundamental issue here is “individualization” of care – but a different sort of individualization than the type more commonly discussed targeting cancer therapies to the genetics of the patient.
It’s the kind of individualization that is often overlooked – what I like to call “staging the aging”.
In essence, this is organizing cancer care to take into account the full context of each patient’s medical situation, including their age, other medical conditions, social circumstances, and their overall care goals.
It is only through integrating the first kind of personalizing with the second kind that we will be able to adequately care for cancer patients in the future.
The principles that will allow us to address this crisis are embedded in the report, reflecting the composition of the multidisciplinary authorship committee, which includes geriatric-oncologists, palliative medicine experts, nurses, health economists, including Ya-Chen Tina Shih, PhD, associate professor of medicine at University of Chicago, and cancer survivorship professionals.
The principles include: engaged patients; a coordinated workforce; evidence-based care; appropriate IT systems; appropriate metrics for quality evaluation; and accessible, affordable care.
Currently, our national care system is nowhere near ready to match these goals with appropriate action.
There are clearly a variety of providers with a range of expertise that will be needed, particularly in my own fields of geriatrics and palliative medicine. Unfortunately, the number of older adults needing this type of care is growing rapidly, and we’re already too late to train enough providers in these two fields to catch up.
Instead, we will have to use those already in these areas to help train others in the principles of care. I urge everyone to at least read the executive summary of the report to begin the process of learning those principles and seeking out those who can help implement them.
Fortunately, at the University of Chicago, we are ahead of the curve thanks to the foresight of our institutional leaders, such as Everett Vokes, MD, the chair of the Department of Medicine, and Schilsky, MD, former chief of hematology/oncology in the Department of Medicine here and head of the University of Chicago Medicine Comprehensive Cancer Center before going to ASCO.
These leaders supported geriatric-oncology and palliative medicine for many years.
This includes a palliative medicine consultation service that was created here more than seven years ago, and now sees 30-40 patients a month, led by Associate Professor Stacie Levine, MD, director, Geriatrics and Hospice and Palliative Medicine Fellowship Program.
The SOCARE geriatric-oncology clinic, started in 2006 with one physician, now has four providers seeing nearly 50 patients a week. We have now produced more dually trained geriatric-oncology fellows than any institution in the country.
With a recent grant from the Coleman Foundation, Levine has led a city-wide effort to spread palliative care principles throughout Chicagoland. The recent creation of a supportive oncology group here that includes nutrition, psycho-oncology, physical therapy along with palliative care and geriatrics is the next step in this evolution.
The New Model in Action
Returning to the patient, we instituted some initial measures based on geriatrics and palliative medicine principles.
We started pancreatic enzymes to help with digestion, we started medicines to help stimulate appetite and reduce inflammation, liberalized her diet to improve caloric intake, and minimized other medications that might be contributing to her diarrhea.
We talked with her cancer doctors about her chemotherapy, agreeing that a “start-low, go-slow” approach was most appropriate. We moved her next appointment to a day when she could be seen by both SOCARE and GI oncology. And we alerted a hospice organization about the plans, starting much earlier in the process to plan for her care.
Each of these things is inline with the new IOM report.
She returned the next week, looking remarkably better. She had gained 5 pounds, her diarrhea had resolved, and she was no longer nauseated. Although she could not recall her issues over the past week, she announced that she was “ready to start her cancer treatment.”
Her husband agreed, thanking me with a tear in his eye for our “remarkable” help in improving her health. Oncology decided to start chemotherapy, but with a single agent, to be escalated if she tolerates this first phase. We will continue to coordinate her care as she receives it.
I would humbly suggest this is how cancer care will be approached in the future if we follow the advice in the IOM report.
William Dale, MD, PhD, is an Associate Professor of Medicine and Chief of the Section of Geriatrics & Palliative Medicine at the University of Chicago Medicine. A geriatrician with a doctorate in health policy and extensive experience in oncology, he has devoted his career to the care of older adults with cancer — particularly prostate cancer. Dr. Dale has a special interest in the identification and treatment of vulnerable older patients who have complex medical conditions, including cancer. He is actively researching the interactions of cancer therapies with changes associated with aging.