In a prior post, I talked about wondering how those I had met through my own patients were doing, especially after my patients had passed on. I wondered if they were all right and whether they were able to move on. Well, I've been thinking about it again, though this time in the context of cancer survivorship.
The Office of Cancer Survivorship of the NCI Division of Cancer Control and Population Sciences "considers an individual a survivor from the time of diagnosis through the balance of his or her life. Because friends, family members, and caregivers are also affected by a cancer diagnosis, they are included in this definition, as well." If we are to adopt this all-encompassing definition of survivorship, then, I find myself wondering—when do I stop being someone's oncologist? Even after my patient is gone, do I have an ongoing responsibility to their families? friends? caregivers? "Should" I still have a responsibility to these other survivors of my own patient's cancer, or are my obligations complete once that doctor-patient relationship has ended?
I must admit, I have never felt comfortable addressing this aspect of cancer survivorship. Part of it lies in the cold, harsh reality of an academic/clinical practice—there is just not enough time. Patients need to be seen, their needs addressed; papers need to be written; students, residents, and fellows need to be taught; and junior faculty need mentoring. Coupled with quality-improvement initiatives, chemotherapy safety and monitoring policies, and the priorities of work-life balance (what's that?), where would one possibly find the time to devote to psychosocial medicine of cancer survivors? But, in addition, a part of it lies in the sad truth that I feel incompetent about how I could help them. All I have is the shared experience of caring for their loved one. I was (and still am) concerned that not only would I be unable to help, but all I would do is to serve as the reminder of all that has been lost.
I am thinking about this now as I read an article by Youngmee Kim at the University of Florida, published in the March 2012 issue of Psycho-oncology. In a prior study, approximately 2,400 individuals nominated by a patient with cancer filled out a survey at entry and of these, 1,218 (50%) repeated the survey at five years. They identified three groups: one comprised of individuals no longer providing care because the index patient was in remission, a second comprised of those whose index patient had died, and a third comprised of individuals currently providing care.
Their major findings were that: 1) current caregivers after five years had the lowest level of mental health of the three groups; 2) psychological distress was significantly higher among those who had lost someone to cancer and those who were continuing on as caregivers; and 3) spiritual adjustment was the most difficult among those who had lost someone to cancer and those continuing to care for someone with cancer at the five-year mark.
This study reaffirmed something that I inherently knew as well—cancer and its "scars" are long-lasting ones, as the battle rages on and yes, even after the war is over. After reading this article, I felt in a small way that cancer care (and I) had failed to recognize this critical aspect of survivorship, experienced from those not directly in our care.
As we look toward personalized cancer care and individualized treatment plans, this paper reminds me that the individual with cancer is actually a community—an interconnected mix of loved ones, family, and/or friends that in turn support and are themselves supported by each other. In oncology, we must recognize that the loss of one affects the others, sometimes profoundly. I think we are only beginning to understand just how hard and long-lasting that impact can be. As as result, we must begin to address what can and should be done to help.
The Office of Cancer Survivorship of the NCI Division of Cancer Control and Population Sciences "considers an individual a survivor from the time of diagnosis through the balance of his or her life. Because friends, family members, and caregivers are also affected by a cancer diagnosis, they are included in this definition, as well." If we are to adopt this all-encompassing definition of survivorship, then, I find myself wondering—when do I stop being someone's oncologist? Even after my patient is gone, do I have an ongoing responsibility to their families? friends? caregivers? "Should" I still have a responsibility to these other survivors of my own patient's cancer, or are my obligations complete once that doctor-patient relationship has ended?
I must admit, I have never felt comfortable addressing this aspect of cancer survivorship. Part of it lies in the cold, harsh reality of an academic/clinical practice—there is just not enough time. Patients need to be seen, their needs addressed; papers need to be written; students, residents, and fellows need to be taught; and junior faculty need mentoring. Coupled with quality-improvement initiatives, chemotherapy safety and monitoring policies, and the priorities of work-life balance (what's that?), where would one possibly find the time to devote to psychosocial medicine of cancer survivors? But, in addition, a part of it lies in the sad truth that I feel incompetent about how I could help them. All I have is the shared experience of caring for their loved one. I was (and still am) concerned that not only would I be unable to help, but all I would do is to serve as the reminder of all that has been lost.
I am thinking about this now as I read an article by Youngmee Kim at the University of Florida, published in the March 2012 issue of Psycho-oncology. In a prior study, approximately 2,400 individuals nominated by a patient with cancer filled out a survey at entry and of these, 1,218 (50%) repeated the survey at five years. They identified three groups: one comprised of individuals no longer providing care because the index patient was in remission, a second comprised of those whose index patient had died, and a third comprised of individuals currently providing care.
Their major findings were that: 1) current caregivers after five years had the lowest level of mental health of the three groups; 2) psychological distress was significantly higher among those who had lost someone to cancer and those who were continuing on as caregivers; and 3) spiritual adjustment was the most difficult among those who had lost someone to cancer and those continuing to care for someone with cancer at the five-year mark.
This study reaffirmed something that I inherently knew as well—cancer and its "scars" are long-lasting ones, as the battle rages on and yes, even after the war is over. After reading this article, I felt in a small way that cancer care (and I) had failed to recognize this critical aspect of survivorship, experienced from those not directly in our care.
As we look toward personalized cancer care and individualized treatment plans, this paper reminds me that the individual with cancer is actually a community—an interconnected mix of loved ones, family, and/or friends that in turn support and are themselves supported by each other. In oncology, we must recognize that the loss of one affects the others, sometimes profoundly. I think we are only beginning to understand just how hard and long-lasting that impact can be. As as result, we must begin to address what can and should be done to help.
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Comments
Eijean Wu, MD, MPP
Apr, 17 2012 4:18 PM
Hi Dr. Dizon, Thank you for this thought-provoking post. I believe oncology is a specialty area where we experience the complex social, political, and cultural interactions and environments of our patients, because we do follow patients for an extended period of time and are with them through some of the biggest challenges of their lives. Our multidisciplinary family meetings are constant reminders that we work with communities, not just individuals. However, there are concrete time and sanity contraints; afterall, we are only human and can't be everything to everyone, as you alluded to. I think one possible approach is to build care delivery systems that consider the needs of caregivers so that they have resources and ways to refuel along their journeys. We may not be the go-to person for them, but we can be a link to others more able to support them long-term.
Don S. Dizon, MD, FACP
Apr, 19 2012 9:18 PM
Dear Dr. Wu,
Thank you for your thoughts on this, which I am 100% in agreement with. Oncology is certainly quite a unique field, and draws what I believe are the most psychosocially minded physicians. I think too often we need to be in charge of the care plan, including ensuring all of the needs of our patients are being met. This"mission" becomes even more critical as one approaches the end of life. Once patients pass on though, we in turn need to concentrate on helping others—those who continue to require our attention and our help.
I do believe our health systems need to evolve to meet the challenges faced by caregivers, even after their "job" is over. The adjustment of life after someone dies of cancer must be difficult for those left behind and I think we as an oncology community owe as much to these survivors as our own patients. The task then is for leadership to evolve in this direction. We as physicians must recognize this as an unmet need and show we are committed to assisting them. It's not technically a paradigm shift in cancer survivorship is it? I see it more like expanding the proverbial tent to accomodate a wider breadth of people into its fold.
With assistance by the newer generation of oncologists like yourself, I know it is a challenge that can be successfully met.
D