NEWS

‘Mother of Psycho-Oncology’ Discusses Field’s Need for Parity and People Power

Rabiya S. Tuma

Jimmie C. Holland, M.D., is often referred to as the mother of psycho-oncology. After 26 years, she has stepped down as chairman of the Department of Psychiatry & Behavioral Sciences at Memorial Sloan-Kettering Cancer Center, New York, but continues to lead the field in both the United States and throughout the world. Her goal is to make behavioral care more accessible as well as to increase research in the field.



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After 26 years, Jimmie Holland, M.D., stepped down as chairman of the Department of Psychiatry and Behavioral Sciences at Memorial Sloan-Kettering Cancer Center. She is often referred to as the mother of psycho-oncology.

 

How did you get involved in psycho-oncology?

I went into psychiatry, but I found myself interested in how people who are psychologically healthy face catastrophic events in their lives, like serious illness. I then married and stayed home with children. Meanwhile, my husband Jim [James Holland, M.D.], who was chairman of the Cancer and Leukemia Group B, would bring colleagues home to dinner and they would talk about the new treatments and protocols that were on-going. I would ask, "But how do these patients feel about this?" and they would say, "We don’t have time to talk about how they feel. We have to look at the toxicities in terms of the blood and kidneys, and so on." It was then that I vowed that when the children got a little bigger and I had more time, I would look at this.

At that time, there was virtually nothing going on [in mental health for cancer patients] at most places. So when I came to Memorial I was able to set up the first full-time academic service in a cancer center, certainly in the United States and probably in the whole world.

Around 1977, we began in this country to see better cancer treatments, to begin to see people being cured of cancer, and we began to tell people their diagnosis and treatment options. The taboo and stigma had diminished enough that we could talk about it. We began to see books written about cancer. We saw [Margaretta] Happy Rockefeller and Betty Ford as public figures announce that they had breast cancer. These were all just extraordinary changes. We really began to be able to have a subspecialty of psychology at that time because we could finally ask people, "how do you feel about this?"

You have been in the field for more than 25 years, what are the most significant changes you’ve seen?

I think there is an enormous change in the culture of cancer care. There is much more of an acceptance that it is a team that takes care of the patients. Today there is an acknowledgment that every person on the team—the nurse, the social worker, the mental health person, the chaplain—all have different roles to play with the patients and they may all be needed in the care of any particular patient.

We still deal with the stigma of mental illness and the taboos that go with that. There is still the feeling that with an illness you have to be strong, and if you need some psychological help, that is a sign you are a wimp or your will isn’t strong enough to tolerate the stress or the pain. Although that attitude is diminishing, it still prevents some patients from admitting to psychological stress and from asking for help or being willing to come for counseling.

You mentioned that cancer care is a team process. Do most medical oncologists accept the value of psycho-oncology?

I think so. If a patient has significant depressive or anxious symptoms or has problems that are complicating his or her ability to tolerate their treatments or adhere to them, I think most oncologists would see a need to bring in a member of the psychosocial team to consult and to follow the patient and intervene as appropriate.

Not every institution or oncologist’s office has the luxury of having a mental health person, but we are in the process, through the American Psychosocial Oncology Society, of developing a help line so we can identify counselors in different parts of the country, including in areas where oncologists might not have someone or might not know who was available in their geographic area.

What would you say have been the biggest hurdles the field has faced during your tenure?

I think the biggest impediment at the outset was attitudinal, the idea that there was no place for mental health in the care of patients with cancer. We had to show that there was a role for it and that it made it easier for the oncology team to take care of patients.

We had to bring to the field the idea that patients’ quality of life—by that we mean how they are functioning in physical, psychological, social, and sexual domains—as related to health is as crucial as any other aspect of care. We began to get it across when we first began to measure quality of life back in the early 1980s in the Cancer and Leukemia Group B. I think we were the first group to try to measure quality of life.

We continue to face this attitudinal hurdle in that reimbursement for mental health counseling is quite low, and we need parity in health insurance reimbursement policies.

We will continue to lobby to get parity for mental health services because when people are physically ill, they have a series of issues to cope with that make it crucial that counseling is available to them, and it needs to be part of their medical health insurance, not as part of a behavioral carve out, which is the way many employers have organized their health insurance.

As it stands now, you can be working in a hospital and taking care of a patient and all of their care is reimbursed—then you hear that there is no reimbursement for the psychological/psychiatric consultation. That has to be done by somebody across town 2 weeks later. And yet here is this person, ill, agitated, in the hospital, and climbing the walls. It is really detrimental for hospitalized patients and it doesn’t make any sense.

Why are clinical practice guidelines so important?

Right now there is no institution that audits or monitors for psychological care. There is nothing that says you should have X number of social workers or mental health counselors in a group. The only thing that guides people is their conscience.

We have written guidelines for the management of distress, and this is the beginning of defining the expectation that psychological care is part of total care and that there is a benchmark in this area the same as there is in other aspects of care.

Once we have that benchmark, we can begin to monitor performance in the treatment of distress, as we have in pain, bioethics, and informed consent. Until then, we are not going to get people moving toward giving adequate psycho-social care.

At a recent symposium on psycho-oncology, one of the researchers expressed concern about a lack of methodological and statistical rigor in the field. Is that something you see as a problem? Is it getting better?

I think what has happened is that this is a new field, and we have had to develop new assessment tools for a lot of phenomena that we study. All of the phenomena we study are subjective, from pain to anxiety to depression, so we have had to come up with validated scales to measure them. Meanwhile, the field has been under-funded and we don’t have, as yet, enough well trained researchers to address all of the methodological and research design issues.

We have tended to have too small studies and to use different instruments in different places, and that has made it look like a hodge-podge of outcomes and data that can sometimes be contradictory. We can address this by encouraging the field toward larger multisite trials that will meet statistical power to draw conclusions. We need to use a core set of assessment tools so that we can look across our studies. We will then begin to have the possibility to look at meta-analyses, which has been difficult up to this point.

I think we need more rigor in the field, no question about it. But we’ve come a long way in 25 years.

What are the major barriers to providing cancer patients with adequate psychosocial services at this point in the United States?

The biggest barrier is in adequate reimbursement. We have to go to philanthropy. We have to get the institutions to take a loss on it. Oncology practices that want psychologists to work with them in their clinic have to find money to pay for it out of their clinic, whereas their own income comes from reimbursement for services.

There is simply not enough reimbursement for our services so that we can pay for ourselves in most settings. We need to somehow get across the need for having these services as a part of total cancer care and reimbursed in the same way and at the same rate.

How do you go about doing that?

Part of my goal at the moment—no longer being chairman and having a little more time—is to have the American Psychosocial Oncology Society become a vehicle for giving us a louder voice. My goal is that it will be similar to the American Pain Society. We plan to bring in nurses, social workers, chaplains, psychiatrists, and psychologists all into this one organization and work with the wellness communities and the advocacy organizations, which are so powerful and vocal.

I think that unless we can begin to get a louder voice and lobby we are not going to change things. We are having our first national meeting for the multi-disciplinary group at the end of January in Orlando.

What is happening at the international level?

We formed the International Psycho-Oncology Society in 1984. We will hold our 6th world congress in Copenhagen in August, and we are petitioning the World Health Organization to consider the society as a nongovernmental organization.

It looks like one of our first projects with WHO will be to try to help them develop guidelines for what the psychosocial aspects of cancer care should be in [countries with different levels of development]: What should they be in the Western world? What should they be in the emerging nations, like eastern Europe, and what should they be in Africa? When there is so little in the way of resources and therefore nothing much to do for their cancer, then treatment aimed at comfort becomes key.

Is there anything else you would like to add?

The comment I would make is that there is an enormous need for support for training in this field, we need to bring people into the field but to do that we need incentives for predoctoral students, for doctoral training, with fellowships and so on. There is an enormous amount of work to be done now that we have overcome some of those initial attitudinal barriers, and there is enormous opportunity for making some leaps forward with better designed studies and with more randomized controlled studies and better evidence-based practice guidelines.



             
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