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The Unanticipated Price of Successful Cancer Treatment: Appropriate Health Care for Survivors
Jessie Gruman | February 22, 2012
Book review: Health Services for Cancer Survivors: Practice, Policy and Research
The day I completed treatment for Hodgkin Disease in 1974, my oncologist shook my hand, wished me luck and said good-bye.
'But how will I know if the cancer comes back?' I asked.
'Oh, you'll know. You won't feel well.'
And that was it. I was on my own.
He was wrong about not feeling well. Since then I have received three additional cancer-related diagnoses: two discovered as part of regular screening and one through the vigilance of a physician. ' Each time I felt fine until the moment I got the news. But he was also wrong to say good-bye without any mention of ongoing follow-up or even a reminder to check in with my primary care doctor.
Much has been learned since 1974. ' Research has produced useful evidence about the long-term implications and impact of the diagnosis and treatment on cancer survivors. That research, combined with the growing survivors population (currently 12 million), forms the basis of the argument that people who have been treated for cancer are at considerable risk for recurrence, new cancers, late effects of treatment and related declines in physical and psychosocial functioning. Many of these can be prevented, treated and managed should appropriate health care services become available.[i]
This argument has been made ' and evidence arrayed to support it -- in a number of reports by the Institute of Medicine, the most prominent of which is From Cancer Patient to Cancer Survivor: Lost in Transition.' The recent book Health Services for Cancer Survivors: Practice, Policy and Research[ii] revisits the IOM report's basic argument and updates it by providing a detailed snapshot of the state of the science and art of providing such care.
This book is a collection of well-sourced individual chapters that are both comprehensive and thoughtful. Reading straight through (a strategy not recommended for any edited collection!) sparked these observations:
People who have been treated for cancer need special health care services for the balance of their lives. The reason my original oncologist didn't talk about risks for recurrence or long-term effects of treatment was because very little was known about them. In 1974 I was part of a clinical trial that today produces a stream of evidence that influences treatment protocols and uncovers new risks and late effects of treatment as trial participants age. Registries and trials generate similar volumes of information about risk and late effects for many cancers.
This growing body of information ' when represented as guidelines and standards -- constitutes the evidence base for special health care services for cancer survivors.
Implementing health care services for cancer survivors appears to be hellishly complicated. Such care requires an approach that is novel for many primary care and specialty clinicians (i.e., planned, proactive monitoring and treatment over time vs. reacting to disease and symptoms).' It requires expertise in a broad range of issues: managing symptoms, regular checking for effects on multiple organ systems and addressing physical rehabilitation and psychosocial functioning. And of course, we survivors differ wildly in the complexity of our needs, which may ebb and flow throughout our lives.
What do clinicians need to be able to deliver care to the diverse and growing group of people who have been treated for cancer: Training? Time? Additional staff? Guidelines? Reimbursement? Quality measures? Administrative support? All these and more. ' At a time when health care services are increasingly constrained, the models of survivorship care presented in this book are generous'aspirational, perhaps?
The question of who will provide care to cancer survivors remains open. Clinicians must believe that special care for cancer survivors is important and learn how to provide it. The debate about whether primary care clinicians or oncologists are better suited or more willing to provide such care is described in multiple chapters. To re-cap: surveys have found that many primary care clinicians have doubts about their ability to provide this kind of care. Those doubts are shared by many oncologists, a good number of whom are not interested in providing care to survivors. Beyond this, however, the predicted shortage of both primary care clinicians and oncologists, documented in the book's chapter on building the workforce' to provide this care, raises doubts about the availability of clinicians to care for the majority of cancer survivors in the future.
The development of a treatment summary and survivorship care plan for each individual at the end of treatment is necessary to guide ongoing care. We need to know how to care for ourselves and exactly what care we should seek when we are through with active treatment. This is particularly important because many of us will be cobbling our care together ourselves, given our propensity to get 'lost in transition' when our treatment comes to an end. To date, there is only modest uptake by oncologists to complete treatment summaries, despite quality measures that reinforce doing so.' Survivorship care plans enjoy similar modest popularity.' Both are necessary if we are to act independently on our own behalf.
The National Coalition of Cancer Survivorship, the American Society of Clinical Oncologists the Lance Armstrong Foundation and others have developed web- and print-based templates for care plans and each has active outreach efforts to make sure people know they need a survivorship care plan, that they complete the plan in collaboration with their oncologist and that they follow it. Alas, only a tiny percentage of cancer survivors currently have one.
Recent health care reform initiatives include provisions that may make it more likely that cancer survivors can get the health care services they need.' Better access to insurance coverage, the prohibition of rescissions (cancellations), a ban on lifetime and some annual coverage limits, coverage of dependents through age 26, all part of the Affordable Care Act, remove some barriers to ongoing care for cancer survivors. Federal investment in the implementation of Electronic Health Records should also make it easier to locate treatment records.
Where the IOM's Lost in Transition report defined the terrain of health care for cancer survivors, Health Services for Cancer Survivors: Practice, Policy and Research provides a map.' Upon finishing the book, however, this thought still nags at me:
If special care for cancer survivors is the price of successful treatment, there seems to be a singular unwillingness to pay it.
While the diagnosis and treatment of cancer have vastly improved since my oncologist bid me farewell in 1974 with a handshake, too many Americans receive essentially the same when they finish treatment today. ' Primary care and specialty clinicians have their own unique reasons to eschew providing care for cancer survivors.' Federal research dollars devoted to exploring post-treatment care for cancer survivors remain paltry. Health plans balk at paying for specialized screening and psychosocial services. And many of us finish treatment and just walk away from our whole cancer experience or we stick with the monitoring for five years and then disappear if those years have been uneventful.
Those of us who have been treated for cancer and are alive today are the fortunate beneficiaries of the U.S. taxpayers' investment towards preventing and curing cancer.' Whether and how we and our clinicians monitor the risks that accrue to us, address the late effects of treatment we experience, and participate in the treatments of our second, third and fourth cancers are critical indicators of progress in that war.' Appropriate, evidence-based health care for all cancer survivors is the only way we will fully capture the value of our investment.
[i]' Cancer 'survivor' is more commonly used to describe individuals from the point of diagnosis for the balance of their lives. However, this book uses the narrower definition and focuses on health care following active treatment.
[ii]' Michael Feuerstein and Patricia Ganz (ed).' Springer, 2011.
More Blog Posts by Jessie Gruman
Jessie C. Gruman, PhD is president and founder of the Center for Advancing Health. Her experiences as a patient — having been diagnosed with five life threatening illnesses — informs her perspective as an author, advocate, and lead contributor to the Prepared Patient Forum blog. Her most recent book, AfterShock, helps patients navigate their way through the health care system following a serious or life-threatening diagnosis. You can follow her on Twitter @JessieGruman. | More about Jessie Gruman
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February 25, 2012 at 10:55 AM
this pushes the limits of my scientific knowledge but it does seem connected to whether or not one understands cancers in terms of them being a separate/invasive process like say with germs, or as a process of the functions of the body, or at least a process which fundamentally alters the functions of the body.
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