Don't Tell My Mom That She Has Cancer

Whose opinion matters when making treatment decisions?

Recently, a patient’s family asked to speak to me alone before a consultation.  In hushed tones, the adult children of my new patient requested that I refrain from telling their mom that she had cancer.  It will devastate her, they said. Or she will just give up. Sometimes when this happens, I am encouraged to use euphemisms for cancer like “growth” or “abnormality” as if the person in front of me has not been scanned, biopsied, poked and prodded for weeks prior to our appointment to determine what exactly is going on.  When I finally entered the room to meet my patient, I was surprised to find a wise elderly person who knew exactly what was going on surrounded by a loving family who was desperate to keep any bad news away from her.

I have handled this situation in two ways over the years and neither felt exactly right.  Sometimes, I have taken the legalistic view that I can’t administer radiation to a person without informing them of the reasons why I am recommending the treatment with a discussion of the risks, benefits, and alternatives. I have also danced around the issue, trying to walk the line between people who know the patient much better than I and be sensitive to cultural norms that I don’t understand. I felt dishonest, though, looking into the eyes of my patient. I believe patients understand more than the rest of us what is happening in their bodies and especially when faced with a terminal diagnosis, understand at a cellular level that they are dying. Who gets to decide is a question that seems easy until it’s not.

Historically, the primacy of the physician to make decisions as he saw fit was unquestioned. Medical decision-making occurred in a passive, patriarchal model. The physician (usually male) made a recommendation and the patient complied. In the 19^th and earlier 20^th centuries, husbands consented for their wives’ treatment often without ever telling the woman she had cancer. A woman operated on in 1917 by famous breast surgeon Dr. William Halsted wrote to him requesting information so that she could receive compensation from an insurance policy: “I have not heretofore had the courage to ask you nor any of the J.H.H. [Johns Hopkins Hospital] staff with whom I came in contact, whether the trouble in my breast was of a malignant type or not.”  Answering her a full two months after her surgery, Dr. Halsted replies, “The tumor in your breast was a cancer. I hope it will be a comfort to you to know that we believe it has been entirely excised and that you will see no signs of its recurrence.”  

What is not included in these letters is that the woman left the hospital with the characteristic Halsted scar running from her inner arm to her navel, could barely lift her left arm, and had developed debilitating left arm swelling, all without knowing if the surgery that left her that way was indeed for cancer. As recently as 1974, after a biopsy revealed First Lady Betty Ford had breast cancer, her husband, President Ford, and her teenage daughter were informed of her diagnosis before she was.

Did I have cancer? Photo from Late Results After the Radical Operation for Cancer of the Breast by William Meyer, 1920

Over the past several decades, shared decision-making and a robust informed consent process have (ideally) replaced this top-down approach. In shared decision-making, the patient’s desires and preferences for her care are taken into consideration alongside the recommendation of the clinician. Shared decision-making aligns the goals of the patient with the treatments offered by the physician. Recent research suggests, however, a new decision model that includes input from physicians, patients as well as care partners may be the way to go.

A care partner is the person who is present for most medical appointments. Often the cancer patient relies on her support as well as to pick up what she misses in our conversations. Although most care partners and patients agree that the final decision for care rests with the patient, care partner involvement in treatment discussions is critical. Higher care partner involvement, for example, is associated with improved patient satisfaction, increased adherence to a recommended plan of treatment, and less regret by patients that they have made the “wrong” decision.

Photo by Nani Chavez on Unsplash

I should note that although most patients want others to be involved and most care partners want to be involved, this is not always the case. In instances where the patient-caregiver dyad includes a child-parent, for example, the child defers most decisions to the adult. Some patients prefer to attend appointments alone.

Cancer does not occur in a vacuum so existing family conflicts continue and can be magnified during treatment. Patients who struggle with mental illness, incarceration, or addiction may be excluded from stable social support structures. Miscommunication or clashes among family members can also lead to differences between the patient, primary care partner, and others.

Some cancers impact potency and sexual pleasure in patients with established partners or create anxiety in patients seeking relationships. Cancers associated with human sexuality like breast, prostate, cervical or anal cancers may lead to changes in body image, inability to perform desired sexual roles, infertility, or bring feelings of shame in having cancer associated with these organs. These concerns are often unexpressed as the pair focuses on treatment but can flair up in survivorship. Changing roles, unmet needs, and uncertainty in the future add another layer to the decision-making process.

With all these competing interests on the table, who makes the final decision? 

I still choose the patient 99.999% of the time.  I am bound by oath and by choice to the vulnerable human with the disease.  I am a temporary guest at this family gathering, so I take my cues from the one who brought me. I can’t catch up on family history, love and trauma so I trust the patient to lead me, addressing the concerns of the care partner and/or family along the way. Care partner input is determined by the patient’s cues as we develop the doctor patient relationship together.

Credit: Stacy Wentworth

On my mind…

Fear The Walking Dead star and GIST survivor

Mo Collins

described how she felt when her cancer returned in a recent post: “Can I tell you what was so hard? Feeling like a failure as a “cancer survivor”. That TITLE! I lost my survivor cred!!”

I’m listening to the audiobook of Janice Nimura’s biography of the first female physicians in America. Weird fact: Elizabeth Blackwell lost an eye to chlamydial conjunctivitis that she acquired while cleaning an infected newborn in 1842. It’s absolutely astounding how far we have come in medicine in the past 150 years.

While visiting Seabrook Island, SC this weekend, I experienced transcended the Hall’s Chophouse Gospel Brunch. Five stars. Add it to your list.