Jimmie C. Holland, MD, says that years ago, when she was admittedly more naïve, she had a fantasy that if scientifically sound research projects were undertaken and the results published, then oncologists and others involved in cancer care might start taking distress in cancer patients more seriously.
“My fantasy would be that it would be so much a part of the woodwork that it would just seem like, ‘haven't we just always done it this way? Of course, you're going to ask about distress because that's what people are going through,’” she said in an interview.
“I want distress recognized, and then if oncologists follow the guidelines above four [on a scale of 0–10 on a distress ‘thermometer’], they'll know to refer their patients based on the problem—to a social worker if it's practical, to a mental health professional if it's a mental health issue, or to a member of the clergy if people want to talk about their spiritual side. Someday I'd like to see the distress thermometer up on the wall of clinics like an eye chart, next to a list of phone numbers with people who could do the psychological care.”
It was 30 years ago that Dr. Holland established the first psychiatric service at Memorial Sloan-Kettering (MSK) Cancer Center, where she is currently Wayne E. Chapman Chair in Psychiatric Oncology and Attending Psychiatrist in the Department of Psychiatry and Behavioral Sciences.
Avoiding ‘Psych,’ the ‘P’ Word
She has received many accolades and honors for her work—including the American Cancer Society's highest award, the Medal of Honor—but said she still feels that anything in cancer care that contains the word “psych” will potentially meet with bias from both the oncology community and patients.
That's why she and her colleagues on the National Comprehensive Cancer Network's psychosocial panel decided to substitute the more normal word “distress” for the “p” word in their distress-management clinical practice guidelines; and why she will occasionally not mention to a patient initially that she is a psychiatrist and say rather, “I was asked to see you to see how you're feeling because someone says you're down; and once I break the ice they're less worried about that.”
She also said that the word “counselor” is frequently used by mental health professionals and MSK refers to its psychiatric services' site as the Counseling Center.
Changing an Ingrained Medical Mindset
But this is not just a case of changing semantics to more euphemistic, less objectionable terms—it's more a matter of changing an ingrained medical mindset, of getting physicians to confront their bias against what Dr. Holland said has been considered the “weak sister” science of psychiatry, and start measuring distress as the “sixth vital sign,” following temperature, pulse, respiration, blood pressure, and the fifth still-somewhat unofficial vital sign, pain (which also uses a 0–10 scale, with 5 indicating moderate pain).
Studies have shown that about one-third of cancer patients have significant distress that needs treatment, she noted.
We've developed a whole series of scales to help physicians get over their enormous bias that you can't trust what people say, that you can't trust subjective data. The first study I did with the Cancer and Leukemia Group B had patients measure their pain and doctors measure the patients' pain. When there were discrepancies, the doctors believed that what they thought was pain was a better indicator than what the patients said.
“Now we've also developed good quantitative scales that are validated as reliable, and can begin to measure pain, anxiety, depression, and fatigue more accurately, and they're improving all the time.”
Lack of Reimbursement Parity
Dr. Holland also points to the injustice of a reimbursement system that pays 50% for psychological services versus the 80% for other medical services.
First Psycho-oncology Textbook
She was senior editor in 1989 of the first textbook on psycho-oncology, The Handbook of Psycho-Oncology (Oxford University Press).
In 2000 she wrote a book for patients, The Human Side of Cancer—Living with Hope, Coping with Uncertainty (Harper Collins), with Sheldon Lewis, which explores the broad range of emotions experienced by cancer patients and their loved ones from diagnosis, through treatment and afterwards, and provides practical guidance.
Dr. Holland said that she hadn't originally decided to enter psychiatry when she enrolled at Baylor College of Medicine as one of three women in a class of 80, because she “was from Texas” (perhaps explaining her own bias against the field in the early 1950s), but during a rotating internship discovered that working with people who were coping with serious illness was fascinating.
Dr. Holland said she was never really interested in practicing traditional psychiatry with patients who were suffering from mental illness, but wanted to focus instead on how otherwise mentally healthy patients reacted to catastrophic illness, or “the psychological care of the medically ill.”
In 1956 she married medical oncologist James F. Holland, MD, currently Distinguished Professor of Neoplastic Diseases at Mount Sinai School of Medicine, and moved from Mass General where she was a resident to Roswell Park Cancer Institute, where he was Chief of Medicine.
“I went from Boston to Buffalo for Jim, who also began the Cancer and Leukemia Group B there with Tom Frei [Emil Frei III, MD],” she said. It was an exciting time in chemotherapy with Jim being part of the team that made the first real difference in acute lymphoblastic leukemia in kids, for which he got the Lasker Award in 1972 with the others [Dr. Frei, Emil J. Freireich, MD, and Donald Pinkel, MD].
These new drugs were coming down the pike, and I'd listen to Jim and his colleagues around the kitchen table, and say, ‘This is exciting, but don't you ask people how they're handling all this with all these side effects?’ And that's how I got interested.
“When Jim was head of the CALGB he had made the group multidisciplinary, and I figured that with his clout as chair, I'd ask him to start a psychiatry committee. And that's how it happened, and it wouldn't have happened if I hadn't been married to him, believe me,” she said.
In those early days, she would intermittently work part time while raising the five children she bore in eight years and a step-daughter, noting that that's what women in the 1950s were expected to do.
In the early 1970s the two Drs. Holland went to the Soviet Union for a year of research in their respective areas.
They then returned to New York City in 1974 when James Holland joined Mount Sinai, and Jimmie Holland was hired as a consultation-liaison psychiatrist at Montefiore where she was told she could do anything she wanted as long as she didn't tell patients they had cancer.
Dr. Holland said that when she was in medical school it was considered unethical to tell patients they had cancer because then they'd give up all hope.
She related a story that took place in 1950. An American Cancer Society volunteer and her friend both had breast cancer and thought it might be nice to get together with other breast cancer patients to discuss the experience.
When they tried to place an ad in the New York Times, they were told by the “society editor” that the paper could not publish the words “cancer” or “breast,” and recommended that they say instead that they were having a meeting about diseases of the chest wall.
The stigma associated with the “dread disease” cancer had always been quite powerful until it began to lose a little strength during what Dr. Holland considers the watershed year 1975, when public figures like Betty Ford and Happy Rockefeller announced they had breast cancer.
She also considers NBC Correspondent Betty Rollin's 1976 book dealing with her breast cancer, First, You Cry, as another milestone.
That was when people finally began to hear their diagnoses, and cancer started its slow creep out of the closet.
Introduction of Concept of Informed Consent
It was also a time of general societal upheaval, with certain unsettling events like Vietnam and Watergate confronting the American public and leading to various powerful social movements pushing for more rights for women, consumers, and patients, including the introduction of the concept of informed consent.
She credits the ACS for increasing awareness about the disease when the Society publicized the seven warning signs of cancer (a change in bowel or bladder habits; a sore that does not heal; unusual bleeding or discharge; a lump in the breast or other parts of the body; chronic indigestion or difficulty in swallowing; obvious changes in a wart or mole; persistent coughing or hoarseness).
3 Components of Coping
When Dr. Holland discusses the psyche of cancer, she talks about three components related to how an individual will cope with the disease: (1) the diagnosis, which patients aren't given any choice about regarding its stage and severity; (2) patients' personalities; and (3) society's view of the illness.
“You've got to look at how society has viewed the disease over the years and how it has impacted on people's responses to the disease,” Dr. Holland said.
She said she loves to relate a scene from Tolstoy's The Death of Ivan Ilyich, when everyone knows that Ivan is dying but pretends like it's nothing while talking about it behind his back, but only his servant is honest enough to not disguise the situation and to state simply, yes, it is very sad that you're dying.
Stigma of Mental Illness
Dr. Holland said that as cancer began to become de-stigmatized, her interest in the human side of cancer—how people dealt with it emotionally—brought another major stigma into play: the one dealing with mental illness.
In 1977 she was hired at Memorial Sloan-Kettering for what was to be her first full-time job, setting up a psychiatry service within the neurology department under Jerome B. Posner, MD.
Lewis Thomas, MD, was the cancer center president in those days, and was to be succeeded by Paul A. Marks, MD in 1980.
Dr. Holland said that if psycho-oncology were to grow as a discipline, it needed its own department, and she had some political fighting to do within the institution until Psychiatry and Behavioral Sciences finally rated departmental status about 10 years ago.
“Having established the department got me a seat at the big table and being part of the institutional overview has made a big difference,” she said. “The department now has a total staff of 100, with more than 20 psychiatrists and psychologists, all of whom have to be involved in research and patient care, and our program now has six psychiatrists in training a year.”
IPOS, APOS, and Psycho-Oncology
She was a founder of the International Psycho-Oncology Society and the American Psychosocial Oncology Society, which stress multidisciplinary membership, and share (with the British Psycho-Oncology Society), a journal founded and coedited by Dr. Holland, Psycho-Oncology—Journal of the Psychological, Social and Behavioral Dimensions of Cancer, published by Wiley.
She is proud of the peer-reviewed publication, which she notes is the leading journal in the field and addresses both the psychological responses toward cancer of patients, their families, and caregivers, as well as the psychological, behavioral, and social factors influencing the disease process.
The Journal doesn't have pharmaceutical ads, she added, speculating, though, that this is due less to editorial policy and more to the multidisciplinary content. There are probably not enough MDs prescribing psychotropic drugs who read the journal to interest the companies, she said, adding that pharma in general has pretty much ignored psycho-oncology and hasn't provided the educational grants that might make things like Distress Thermometer charts in clinics a possibility.
Distress is about a decade behind pain in acceptance and practice, and despite there only being four official vital signs in the United States, pain has probably become part of the normal readings taken by oncologists, she said.
“Canada recently recognized distress as the sixth vital sign, and psychosocial issues have been taken more seriously there and in the United Kingdom and Australia than they are here. I think attitudes change incredibly slowly.”
New IOM Report
Dr. Holland said she hopes that the field will receive a much needed credibility boost when the Institute of Medicine committee she sits on issues its evidence-based report on “The Barriers to Psychosocial Care of Patients with Cancer in the Community” (expected this fall).
She said the report will show the importance of integrating psychosocial issues into routine daily care, and promote the idea that quality cancer care is not being provided unless patients are being screened for distress to see if they need further evaluation and referral to social work, psychology, or psychiatry.
“We will recommend how to incorporate rapid screening into community practice, and provide a nice model of how oncologists should think about every patient, and how they can utilize services at a distance by setting up a virtual practice if they can't afford to create their own.”
The report will also address other problems facing psychosocial services such as finance, education, and self-management, and will include recommendations for policymakers, physicians, and the public.