The unspoken sentiment towards patients with advanced cancer

The unspoken sentiment towards patients with advanced cancerI have been thinking about the cancer experience—what it must be like to be on the receiving end of a cancer diagnosis, to live with cancer, and to experience the treatments; to receive the news that treatment worked or that it didn’t. I also have been thinking about what it must be like to “carry” a diagnosis of cancer around. When I began in oncology, I never gave much thought about the use of a cancer diagnosis to characterize my own patients, particularly when discussing them among colleagues. “Do you know my leiomyosarcoma patient, Mrs. X?”

I often wonder if this happens outside of the clinic? When my patient goes home and resumes her role as a member of a wider social network (as mother, daughter, co-worker), has cancer become a “label”? Is it permanently associated with her? When her friends speak about her, do they use the same “diagnosis as descriptive”?

“Do you know my breast cancer friend, X?”

I have come to realize that while the use of a cancer diagnosis to describe a patient is common, it can also trigger assumptions that may not be correct, which may result in terrible consequences. Beyond the care and compassion rendered in oncology practices throughout the world, there may be an unspoken sentiment within society and within other realms of medicine that treats patients with advanced (or chronic) disease as “hopeless” or “terminal,” regardless of where they are in their disease state.

I recall a patient under my care that developed shortness of breath and fevers at home. She required emergency evaluation and was brought to a local ER.

“Is this metastatic ovarian cancer patient under your care?” the ER resident had asked me.

“Yes,” I said. “I am Mrs. ___’s oncologist.”

“She has pneumonia and she is pretty sick. The cancer is metastatic, so I assume she is DNR?”

“No, she isn’t a DNR. Just because her cancer is metastatic doesn’t imply she is terminal. You understand this right? Patients with cancer get pneumonia too. Please do all that you can to get her through this,” I replied.

I have since learned to emphasize a patient’s clinical status first, then their diagnosis. I have also made it a point to teach our fellows that it is our patients who have cancer, and they should not be perceived as “cancer patients.” Cancer is a noun, not an adjective, and perhaps it should not be used as such.

On a practical point, I have discovered doing so makes a difference. When sending patients to urgent care, I describe them functionally first, then give the history: “Mrs. ___ is a 48-year-old mother who works part-time, with a performance status of 80%. She is being treated for metastatic ovarian cancer.” I find I argue less with those on the other end of the phone call to get the appropriate level of care for my patients with cancer.

In an ideal world, all of us are defined by who we are, who we love, our passions, and our accomplishments. I do not believe any of us should be described by whatever medical condition we happen to face. In oncology, it is an ideal that we should embrace, to ensure quality care for those who have entrusted us, literally, with their lives.

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

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  • Wendy Harpham

    Excellent. Thank you. A small change in the way physicians talk can provide profound benefits for patients and the clinicians who care for them.
    With hope,
    Wendy S. Harpham, MD

    • Guest

      True

      • Mary Byrnes

        As a parent of a 19 year old leukemia survivor is is often difficult to “forget’ about the horrific route my son had the past 3+ years. He received a stem cell transplant which made life even tougher. As an educator heading back to school this week, I often think about when I talk about my family at “Meet the Teacher” night. Do I mention that my son is a survivor? I am not proud of his cancer but amazed he survived. He hates when I mention it to anyone. He wants it behind him and maybe that is the route I should take. Thank you for your compassion and for writing.
        Mary

        • drdondizon

          Dear Mary, One thing I have learned is that there is no singular approach that our patients take following treatment (especially successful treatment!). While some embrace being a cancer survivor, others (like your son) prefer to note it as a historical event, and look forward as a man (or woman). As a parent myself, I am trying to learn to take the cues from my children and encourage their development as individuals. I agree with you– the path that your son takes as “someone who once had cancer” should only be decided by him. I applaud your support of the path he chooses. I think realizing his experience is also yours, makes you a cancer survivor as well. Best of luck and life, always. D

    • drdondizon

      Hi Dr. Harpham, I appreciate your sentiment and am in total agreement. Physicians deserve more and as an oncologist, communication across specialties needs to take into account a better method of imparting real information that relates to the individual, not boiling all of us down to a diagnosis. Cancer patient or not, we all deserve better. Best to you and have a safe holiday, Don S. Dizon MD

  • http://medexaminer.wordpress.com/ the Daily Medical Examiner

    Well put. The words that we choose shape our perceptions… Your comments remind me of the Osler quote that “It is much more important to know what sort of a patient has a disease than what sort of disease a patient has.” Thanks for the reminder!

    • drdondizon

      Thank you for your comment! I appreciate it greatly. D

    • Molly_Rn

      Dr. Osler’s wisdom is as true today as when he was alive.

  • houriganterry

    If anyone wants to spend the time, there is a 1992 movie which comes close to stepping
    into someone’s shoes who has had the dx: “The Doctor”. An arrogant surgeon is forced to
    cross the bridge and face cancer. To be treated as he has treated patients in the past.
    To feel the price they paid in his shadow. To know that existence. It’s a revealing and a
    valued education to know what he experiences and what he thinks, (rather than getting what
    our patients present,edited). If you haven’t seen it, suggest you put it down as cme.

    William Hurt, Christine Lahti, Mandy Patinkin.
    It is available at many libraries.

    • drdondizon

      Thanks Terry, as always. I would hope that we as providers do not need the experience of being a cancer patient to learn how to listen and empathy. I have seen “The Doctor” though and agree, it is a movie worthy of revisiting. D

      • Guest

        Drdondizon, After stating the way to address a patient with cancer, this statement then refers to ‘a cancer patient’………Why the double standard..

        • drdondizon

          To Guest: I could craft an excuse about my response above, but as you point out, I used cancer as an adjective in my statement above. It is a reminder to myself to be more careful, and evidence of how easy it is to revert back to “medical short-hand” (for lack of a better phrase). My apologies, and thank YOU for calling me out on this one. D

    • http://www.facebook.com/heidi.schlossberg Heidi Schlossberg

      OMG: As I was reading these posts I was thinking ,” I should post the link to the movie
      Doctor with William Hurt. It should be mandatory. Along with one of my all time favorites , patch Adams http://www.imdb.com/title/tt0129290/ and Awakenings http://www.imdb.com/title/tt0099077/

  • Kate

    I am a doctor (and a wife, daughter, sister and friend). I go to work and look after frail elderly people in a hospital. I am also terminally ill with a rare aggressive sarcoma. I would hate to think of my patients as disease entities and if I ever caught my Oncologist calling me the DSRCT girl he would get a piece of my mind. We are all human beings and should be treated as such. Great article.

    • drdondizon

      Dear Kate, thank you for your comments, particularly because they are poignant and personal. At the end of the day, we are all human beings. I wish you peace and serenity, and the same for your family and friends. DSD

  • Jenn

    I’m a pharmacist and a lymphoma survivor. There is only one thing I hate more than clinicians identifying patients by their diseases: the practice of saying that a patient “failed” some sort of therapy. It’s pervasive in the medical lexicon. “The patient failed induction” or “The patient failed drug X” or “The patient failed this protocol.” As if the patient did something wrong, or didn’t work hard enough. The treatment or the medication or the protocol failed THEM, not the other way around.

    • drdondizon

      Hi Jenn, there is much in the lexicon of oncology that deserves to be re-looked at. I wrote a separate piece about the power of words for my ASCO blog, and it was posted with kevinMD (with my thanks). You are not alone in feeling this and I am hoping we can change the way we communicate about cancer.

      http://www.kevinmd.com/blog/2012/05/power-words-cancer-care.html

    • Susan Rustad

      So true, and thanks for posting this. It indeed is the treatment that fails, not the patient. We fortunate St. IV pts. learns from our doctors no to blame ourselves, but the pervasive terminology makes that hard.

      • drdondizon

        Thanks for this Susan! Truly appreciated. We need to work on the language, but these discussions are an important way to continue the conversation. D

  • http://www.facebook.com/victoria.ford.564 Victoria Ford

    Having a metastatic diagnosis is like passing to the ‘dark side’, especially for those of us with metastatic breast cancer. Breast cancer is ‘curable’ to many people and no worse than a broken leg, it is ‘pink’ and all about ‘survivors’. However the survivors do not really want to acknowledge us because we spoil the image. A friend was told not to say she had mets when she went to a support group and ended up giving support to those with early stage BC, though there was no support for her. She died 10 Oct 2010, on her daughter’s birthday. Another lady told how no one would speak to her after she said she had mets at a support group; she didn’t go again.
    We are NOT dead, we have a life, and it is a life we probably appreciate far more than many others. The lack of any form of hope for metastatic patients is in many ways worse than the diagnosis, and sadly most of us have to find hope for ourselves because we are offered none. I have lived with MBC since January 2008, and it should have been diagnosed in September 2007 when I was first diagnosed. We should be treated as individuals who just happen to have a disease that is considered incurable … wait a minute, isn’t that life itself? The world’s worst sexually transmitted disease with a 100% mortality rate. Treat me as a person, not a stage of cancer.
    http://wp.me/s2DKRl-focus
    http://www.facebook.com/?sk=lf#!/groups/InspiredMBCAdvocacy/

    • drdondizon

      Dear Victoria, yours is a very important message and a very powerful post. The term cancer survivor should encompass all patients who have had and are living with cancer, yet we are still struggling with how best to provide survivorship care. The fact is that metastatic cancer is not another term for terminal, and oncology is slowly turning metastatic disease in to a chronic disease process. One of the lessons I impart to my fellows is that even for a disease as ominous as recurrent ovarian cancer, women can live for years, not days.
      For all patients with cancer, regardless of stage, though- your last statement is one that should be universally embraced by healthcare providers- Treat all people with cancer as people, not a stage, and not a cancer.
      Thank you for posting. DSD

      • http://www.facebook.com/dian.corneliussenjames Dian Corneliussen-James

        Dr. Dondizon, I appreciate your response to Victoria’s very poignant and true comment. But I must question your use of the term “chronic” in conjunction with our disease. Ultimate survival for MBC is still only 1-3% with an average survival of only 18-24 months or 19-30 months, depending upon which report you read. Five-year survival statistics ranging from a high of 23.7% to a low of 15% — also showing no improvement for a decade or more. We are told we are living “longer and longer” but when we look at new drugs approved, we see that they increase our lives by only 2-3 months … sometimes a bit longer, … but certainly not anything even remotely resembling a year. And since each drug is only relevant to only a given circle of patients with precise conditions, it is not as though all of us are getting repeated increases of 2-6 months … far from it, which is why our survival has hovered around 18-30 months for decades. Diabetes is a chronic disease; MBC does not even come close. While I greatly appreciate the desire to be positive and upbeat, especially for the patient; and while I certainly believe no patient’s needs should be disregarded with the attitude that they do not have long to live; I think it is exceedingly important that the public not be lulled into a false sense of security that MBC is a disease now under control, which is implied by the word “chronic”. It is not. And to perpetuate the use of the term chronic only serves to further deflect away from the great need to increase MBC research from the paltry 2% it hovers around today in the US, to something that could actually make a difference for the stage IV community.

        • drdondizon

          Dear Dian,

          The statistics you cite are definitely correct and I understand exactly what you are saying- they are quite sobering. However, as I am sure you know, people are not statistics and this is most certainly the case with metastatic breast cancer. Patients with metastatic breast cancer constitute a highly heterogenous community, which accounts for the bell-shaped curve of mortality. While the “median” you cite are correct, there are people at the tails as well- folks who will live far shorter, and others who will live far longer than even the best oncologist can predict. As I advocate for the view of patients with metastatic disease as having a “chronic” illness, it is to ensure that those living with “metastatic” disease are not viewed as automatically “terminal”– this I believe can be more damaging to the individual living with this disease.
          The other point you allude to, though, must be remembered by doctors, patients, and everyone else involved in healthcare. The prediction of prognosis is not static, but changes as circumstances change. Even chronic conditions like diabetes and congestive heart failure can result in a terminal phase. It is the communication between doctor and patient that must be honest and open, o help all of us deal with an unpredictable trajectory in metastatic disease.

          Finally, the tension between research funding within oncology and within medicine in general is a reality, unfortunately. We must advocate for better funding to ensure options expand in hopes we can cure cancer, and for those living with it, control cancer too. I’ve dedicated much of my academic career to treatment of recurrent disease and this continues to be my passion. However, let’s keep both foci in mind as we move forward- one that advocates for the patient living with metastatic cancer, and one that advocates for improved funding against it.

  • Michal Poe

    To say metastatic cancer is a chronic disease is another way of ‘pinking’ up our image. To make us not quite so scary. The statistics say otherwise and not that much has changed these last 40 years for breast cancer. Especially the more rare type such as TNBC or IBC. Personally I would rather not become friends with my oncologist, and I really don’t care how she/he addresses me. I look to her for honest answers about the efficacy of certain chemos, answers for clinical trial suggestions for any alternative treatment she has heard about. Being in a busy practice and dealing with the scientific results of things, renders her useless in all but the ‘chemo’ or ‘radiation’ questions. I had to find the three clinical trials I have participated in myself. They have extended my life for 2 more years, though they caused further physical disability to my body.

    When speaking to another Doctor, I would like to think my Doctor would give a brief outline including functional status and/or DNR status, in order for the other Doctor to not make assumptions. But all and all, I don’t want my Doctor to be so much as a kind GOD but as a Powerful God. Your essay is good in that it asks physicians to treat stage IV cancer patients more humanely, but really what most of us look to you for is the CURE.

    • drdondizon

      Dear Michal Poe:

      Thanks for your post, and above all else, I wish you well. As with every busy practice, my own patients differ in what their needs are as patients. Oncologists can only do their best for their patients by understanding them and their personal approach to their cancer. While some lean towards an “agressive” approach with early drug developmental trials (phase I) or multi-modality treatment, others choose “quality of life over the quantity of life”. How each approaches cancer requires my respect of their wishes and their objectives.
      While we search for the cure, patients with metastatic cancer are not curable. They can/should be treated, though, and as long as I believe I can help treat their cancer, it is my philosophy that therapeutic options should be discussed and administered in keeping with the patient’s desire.
      However, from my vantage, oncologists must be aware of the novel treatments that are in development (and may be newly available) AND humane. There should be no reason to choose between them. Oncology is a practice that requires mutual respect and collaboration. Physicians are not god and it would be wrong to assume as much. We are above all, human.

      DSD

  • Susan Rustad

    Thanks yo Dr. D. Please continue spreading the word!

  • http://twitter.com/melee_me Mel

    Great insightful article.. recognise the person first, their medical needs next and their cancer as a medical consideration last.

    • drdondizon

      Thank you Mel. Words to live by- D

  • dr steven klayman

    Some alternative therapies are effective. The true face of Sloan Kettering was shown in the 70s when the results of B17 were shredded.
    Ralph moss refused to
    keep quiet about its efficacy.
    Now with the internet the secret is out.

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