When do I stop being someone’s oncologist?

When do I stop being someones oncologist?I recently 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.

Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.

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  • disdiscuss12

    Don:

    Dr. Kim and you have touched upon an issue that has been ignored until lately.

    My belief is that the oncologist’s responsibilities are:
    - Treat the disease and related medical issues
    - Provide appropriate medication or treatment suggestions for the psycho-social dimensions of active treatment to both the survivor and primary care giver(s).
    - Provide appropriate resources and referals to the survivors and care givers after active treatment.

    I believe that both clinical practice and applied clinical research indicate that oncologists should check both the survivor and their care givers for clinical stress, anxiety, and depression. Initial treatment for these diagnosese are well established and can be comfortably provided by an oncologiest. If initial treatment fails, then the oncologists should refer the individuals to appropriate specialists.

    The question about deeper engagement or long term engagement is not that difficult in my mind. As I state above, the oncologist should be making appropriate referals to survivors and their caregivers. Many facilities providing oncology care have social workers who are specially trained to work with cancer survivors as do many hospices (often offering these services to those not in hospice care). Most communities have psyco-social professionals who have subpractices focused on survivors. The oncologist or their office should remain aware of these and make appropriate recommendations and not treat.

    It is beyond a short comment to discuss the potential role of social media for long term relationships with survivors. Clearly this topic is important and worth further discussion.

    Daniel I Shostak, MPH MPP
    16 year survivor

    • drdondizon

      Dear Daniel,
      Thank you for your thoughts, and I must say, I agree with what you see as the oncologist’s responsibilities. I believe we serve our patients and their social networks best when we too are supported so we can provide a more inclusive and longitudinal care model for cancer survivors- all of them. I suppose part of my post goes back to my own personal feelings of inadequacy when it comes to survivorship care of the caregivers. I would love to continue a social relationship with those that I have met, yet feel it would be inappropriate. I wonder if I would serve as a reminder of the person lost to cancer, rather than an impetus to move forward. I bet it’s a feeling that is shared by many of my colleagues. I must always remind myself though that the experience of cancer is one that changes us all, from the long-term survivor as yourself to the person newly diagnosed, and all of those involved in your life. I use it as an impetus to advocate for the best care for my patients and to teach others that these folks coming to see me are not cancer. They may have cancer but they are also friends, parents, children, and loved. It’s so easy to reduce someone to a cancer diagnosis- we must (myself included) continually remember that they are not. DSD

  • James deMaine

    Very interesting comments, thanks.  In Critical Care, I “lost” patients all too frequently in the ICU, Hospice, post-transplant, etc.  I tried to send a condolence note to all the families, and make a phone call in a week or two to answer lingering questions and to show that we cared.  Occasionally, I attended services and a few times spoke at memorials.  But this doesn’t really address the issue of long term grief issues in the survivors which can be profound.  We need to be able to offer support groups, mental health referrals, and whatever form of outreach is feasible.  One grieving husband I know has a running blog about his beloved wife with many contributors helping to support him.  I’m sure others have found unique ways to deal with their own personal grief.

    • drdondizon

      Dear Dr. deMaine,
      I believe your comments reflect just how universal the issues related to caregiving in medicine are.  The attention to long term grief is one that physicians cannot take on first-hand. Like I said in my post, time is a precious commodity these days, no matter the practice type. However, building support systems with an eye towards long term grief is perhaps only now coming in to focus. Work by Kim and colleagues is helping us clarify how big an issue it is. And yes, I think the key is to help caregivers utilize social media and their own community resources to continue to heal long after their loved one has passed on. Still, I wonder how we (in the role of the “primary” physicians) see themselves in these networks- will we remain involved or will we have moved on to assist those patients who actively require our attention? D

  • http://dinosaurmusings.wordpress.com/ #1 Dinosaur

    I am a Family Physician. My scope of practice includes diagnosis and treatment of acute, self-limited conditions, monitoring and management of long-term chronic diseases, identification and referral for management of severe and/or life-threatening conditions (like cancer) beyond my ability to manage, and ongoing, longitudinal care for patients and their families.

    Your role as the Oncologist is to treat the patient with cancer. I do not deny that this includes providing education and support to their families and caretakers. But technically, your responsibilities end with the patient’s demise (which includes the acute sequelae such as sympathy cards, condolence calls, and possible service attendance.)

    You are confused because you are trying to do my job. Just as I do not have the expertise to provide chemotherapy, neither do you (or should you) try to manage the longitudinal care of people who do not have cancer. Once you’ve finished your job, send them back to me so I can do mine. 

    • drdondizon

      Dear #1 Dinosaur,
      I sense that my post offended you but I am not quite certain why. I do think it is an over-simplistic view of Oncology to suggest that we “should” care only about treatment and assume we should no longer be expected to be involved after that. 
      Trust me when I say, personally speaking, I am not capable of providing longitudinal primary care for my “active” cancer patients nor am I suggesting that we should assume a primary care role for their caregivers. If that was the impression my post left you, I apologize. I see my role as a specialist to complement the larger role of the primary care physician. I think when specialists work alongside primary care physicians, the patients (and their loved ones) are much better off. In fact, I refuse to assume the primary care role for my patients- even those in active treatment. 
      The issue I wrote about concerns the well-being of caregivers, and those that we in oncology do get to meet during the longitudinal journey of cancer survivorship. To suggest that the oncologist’s “job” is done when the patient is no longer under treatment is not an accurate view of oncology today- particularly as we seek to improve the quality of cancer care and cancer survivorship. DSD

  • http://www.facebook.com/profile.php?id=100001032944142 Paula Zagone Kraus

    As a cancer survivor and someone who is advocating for quality survivorship programs for cancer survivors, I am glad to see that you now recognize how critical this arm of the cancer journey is. Fighters, survivors, and caregivers have known this for a while now and the time has come for the medical professional to understand the importance of survivorship programs.
    There are several pieces of legislation, HR 3705 (CCCI) and S 2097 that could use the voice of the medical and cancer community to help get co-sponsors and the discussion moving along at the state and federal levels. I urge any and every one to research the bills and urge your representatives to sign on as a co-sponsor.

    • drdondizon

      Dear Paula,
      I too am glad to see survivorship come into its own as a relevant and important topic, thanks to the work of pioneers in our field (Dr. Patti Ganz comes to mind) and the countless number of cancer survivors who have advocated for this as well. I hope all of us heeds your call to action. I appreciate the work you do on behalf of the oncology community- all of us. DSD