Too Much Focus On Young Attractive Patients
By James Coyne
William Schofield’s provocative book, Psychotherapy: The Purchase of Friendship was written while I was in high school, but it was still being debated in bars and smoke-filled rooms when I was in graduate school. It continued to be discussed in my seminars when I was an Assistant Professor at University of California Berkeley. Fifty years after its publication, Schofield’s book is a bit dated and probably not discussed much in the training of mental health professionals just entering the field. But the book has unrecognized relevance to understanding inequalities or social disparities in the psychosocial care for cancer patients. And the ideas of the book might be used to generate some caution about what to expect in efforts to reduce the considerable gap between the proportion of cancer patients who report heightened psychological distress and the minority who actually get psychosocial services.
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William Schofield’s provocative book, Psychotherapy: The Purchase of Friendship was written while I was in high school, but it was still being debated in bars and smoke-filled rooms when I was in graduate school.
It continued to be discussed in my seminars when I was an Assistant Professor at University of California Berkeley. Fifty years after its publication, Schofield’s book is a bit dated and probably not discussed much in the training of mental health professionals just entering the field.
But the book has unrecognized relevance to understanding inequalities or social disparities in the psychosocial care for cancer patients. And the ideas of the book might be used to generate some caution about what to expect in efforts to reduce the considerable gap between the proportion of cancer patients who report heightened psychological distress and the minority who actually get psychosocial services.
• Young, early-stage breast cancer patients are overrepresented among cancer patients who use psychosocial services. They are very receptive to psychological counseling, and their distress tends to reduce overtime, regardless of whether they received counseling.
• Most cancer patients who are psychologically distressed do not receive psychological services. That is considered a problem by organizations promoting routine screening of cancer patients for distress. Screening is considered the solution because it is presumed to increase detection of distress and referrals.
• But it would be a big mistake to assume that the cancer patients who are distressed but not receiving services are just like the young early-stage breast cancer patients who predominate among service users. Most probably these patients not receiving services not be as interested in counseling. Many have complicated medical comorbidities and social problems that require something else.
Closing the gap between proportion of cancer patients who are distressed and those who receive services is probably not going to involve a lot of mental health counselors or therapists.
We need to better respect and reward the unsung heroes of psychosocial care for cancer patients. These are the points that I am going to address, and if that is all that interests you, you can stop here.
But I encourage you to read on and learn about the YAVIS bias; similar biases in the portrayal of cancer patients in the media; and the difficulties in dealing with the meetable unmet needs of cancer patients who do not fit the stereotype of young, early-stage breast cancer patients. And just who are the unsung heroes of psychosocial care.
Ideal Psychotherapy Patients
YAVIS is an acronym for young, attractive, verbal, intelligent, and successful. Schofield’s yavisbook was more philosophical than empirical, but he did cite his study of over 300 mental health professionals in which he asked about “the kind of patient with whom you feel you are efficient and effective in your therapy”. Most preferred married women, aged 20-40 with at least some college and a professional/managerial occupation.
On this basis, Schofield railed
“What is there in the general theory of psychodynamics or psychotherapy to suggest that the neurosis of a 50 year-old commercial fisherman with an eighth-grade education will be more resistant to psychological help than a symptomatically comparable 35 year-old, college-trained artist?”
“It seems likely that there are pressures toward a systematic selection of patients, pressures that are perhaps subtle and unconscious in part and that, in part, reflect theoretical biases common to all psychotherapists. These selective forces tend to restrict the efforts of the bulk of social workers, psychologists, and psychiatrists to clients who present the “YAVIS” syndrome — clients who are youthful, attractive, verbal, intelligent, and successful.”
Inverse Care Law
The Purchase of Friendship and the notion of a YAVIS bias were much more popular with grad students and junior faculty than with the senior faculty who correctly recognized an attack on their way of doing things.
George von Hilsheimer got it right in noting that:
“In 1966 it was already a cliché that the patients who did best in psychotherapy were those who did not need it. The YAVIS criterion was an inside joke. Young, attractive, vital, intelligent, successful individuals benefit best from psychotherapy. In other words, the patients we work best with are the ones who need us least.”
Ouch! Sarcastic, yes, but von Hilsheimer was stumbling upon a finding in health services research so robust that it is considered a law, “the inverse care law.”
The availability of good medical care tends to vary inversely with the need for it in the population served.
Decades of efforts to address social inequalities in access to mental health treatment, as well as recent mental health parity and health insurance reform have increased access to psychotherapy. But inequalities still persist, associated with being older, being a member of a minority group, and having low income and low educational attainment.
In the US, anyone who tries to find mental health treatment in the community for a medical patient quickly discovers that many private practice clinical psychologists and psychiatrists reject low income patients who have only Medicaid or Medicare insurance.
They prefer patients wealthy enough to pay out-of-pocket and many do not make exceptions. The only option for non-YAVIS patients are often public community mental health centers. Patients have who are referred there can be left feeling quite discouraged and disrespected. And even in countries with more universally available health insurance and less inequality in income, like Scandinavia and the Netherlands, the inverse care law still holds.
Younger, early-stage breast cancer patients disproportionately receive psychosocial services. Because of early detection of their cancer and modest increase in the effectiveness of treatments, these women tend to have excellent prognoses and are increasingly unlikely to die from their condition. They tend to have to have heightened emotional distress because cancer represents more of a threat to age-related goals, like raising small children and remaining employed.
Fortunately, much of this distress resolves within a few months of diagnosis.
Six months after their diagnosis, women with early-stage breast cancer overall have less distress than women of a comparable age without cancer selected from a primary care waiting room.
The following chart comes from a study of over 500, almost entirely early-stage breast cancer patients. The study replicates other findings that from a third to a half of breast cancer patients initially have clinically significant levels of psychological distress.
But it goes beyond the initial adjustment to breast cancer and traces the course of that distress, breaking it down into groups identified by cluster analysis of their trajectories of distress.
One implication of this chart is that even among the minority of breast cancer patients who are distressed after diagnosis, the trajectory of their distress is such that it will be difficult to show that that psychological intervention has any advantage over their simply remaining in routine care. Think of these trajectories as representing the control groups in randomized trials of psychological interventions for distress among cancer patients.
Media Portrayal of Cancer Patients
Most cancers are detected after age 65.
It is simply not true that the typical cancer patient is a young attractive woman with young children. But that is the typical portrayal of cancer in the media. A study of portrayal of breast cancer in popular magazines found:
In 84% of vignettes (144 of 172), women were diagnosed before 50 years of age; in 47% (80 of 172), women were diagnosed before 40 years of age. On the basis of the age-specific incidence of breast cancer in the United States, the expected percentages would be 16% and 3.6%, respectively.
The vignettes included 25 women who were reported on primarily because they were celebrities or otherwise newsworthy. For example, several articles discussed a group of breast cancer survivors who climbed Mount Acongagua in South America in 1995.28–30 The ages of women in the newsworthy vignettes ranged from 21 years (a former Miss Oklahoma31) to 66 years (Virginia Kelley, mother of former U.S. president Bill Clinton32), and the mean age did not significantly differ from that in the remaining vignettes (42 and 41 years, respectively).
Portraying breast cancer as threatening the childbearing and sexuality of young women has proven a very effective fundraising and political strategy.
But it has also had adverse effects for the directing of research funds and specialized services to breast cancer patients versus other cancers or other diseases. Somewhat dated statistics that probably still hold:
The National Cancer Institute (NCI) devoted $572.4 million researching breast cancer in 2007. Other National Institutes of Health (NIH) funding for breast cancer boosted the total spent on the disease to $705 million. Plus, the Department of Defense operates its own breast cancer research outfit at a cost of another $138 million in fiscal 2008.
By way of comparison, in 2007 the NCI spent $226.9 million studying lung cancer, the leading cancer killer in the U.S., and $73.3 million studying pancreatic cancer, which kills nearly as many patients as breast cancer, usually within a year of diagnosis. Cardiovascular disease, the biggest killer of both men and women, received $381 million.
Younger, early-stage breast cancer patients predominate in intervention trials of psychosocial intervention for distress.
When researchers recruit patients for randomized trials evaluating interventions for psychological distress, they do not usually specify that patients have to be distressed as an inclusion criteria. Only a small minority of studies actually require patients have some minimal level of distress. As a result, studies typically end up with a sample of women with early-stage breast cancer patients who, as a group, have insufficient distress to register an improvement.
From the trials I have looked at carefully, I estimate only about a third or so of the women enrolled are distressed.
Psychosocial studies of cancer are often biased to younger patients, with the modal patient being recruited to intervention trials being young women with early-stage breast cancer, high functioning and good prognosis and a level of psychological distress that presents a floor effect on identifying any efficacy.
This creates an odd situation: it is difficult to demonstrate in a controlled study that interventions have clinically significant effects on the distress levels of typical cancer patients. The typical study does not show an effect, but illusions can be created by
• Concentrating on subgroup analyses, although if the subgroup of patients being considered are distressed, the analyses will be underpowered.
• Selecting outcome measures after results are known and focusing on the one with the best outcomes.
• Other flexible rules of design and analysis.
A number of psychosocial intervention trials for cancer patients widely cited as positive actually had null findings, but were well spun to appear positive and be cited as such.
I rail about this often, and will not get into it here, except to cite two prime examples, which I have discussed elsewhere. Why are early breast cancer patients drawn to psychological counseling treatments if they are not distressed?
For the same reason that they are disproportionately drawn to support groups. They are probably not there to reduce distress, but to get support and an opportunity to talk about their situation. Such opportunities are increasingly scarce in cancer care driven by the need for billable procedures and time-efficiency. If patients want to talk to someone on a regular basis, they have to go into counseling or to a support group, even if they not primarily seeking reduction of distress.
Breast vs. Lung Cancer
The distress of early breast cancer patients is quite genuine.
Cancer poses real challenges to completion of life stage tasks that are very important to them. Their being diagnosed with cancer threatens their spouses and children. But they mostly soon learn these are manageable issues. We have to be careful about making comparisons between patients with different kinds of cancers and implying there is something devious and unfair in patients with one type of cancer getting with services that patients with another type. But there are striking disparities between breast cancer and lung cancer.
• Lung cancer causes more deaths than the next three most common cancers combined –colon, breast and pancreatic.
• In the late 1980s, lung cancer surpassed breast cancer to become the leading cause of cancer deaths in women.
• Lung cancer patients receive almost none of the attention that breast cancer patients get in terms of their psychosocial needs.
• Lung cancer patients have among the highest levels of psychological distress, yet lung cancer patients are the lowest utilizers of support groups and similar services.
• When is the last time you saw mobs of people running through a park seeking a cure for lung cancer?
As I have mentioned before, the prevailing notion in the psycho-oncology literature is that we need to screen distressed cancer patients not receiving psychological services, show them their scores on the distress thermometer, and convince them to accept a referral.
But we need to be careful about generalizing to lung cancer patients from the breast cancer patients who were more likely to receive services. One study found that:
• 57% of distressed lung patients who did not access mental health services did not perceive the need for help.
• The most prevalent patient-reported barrier to mental health service use is wanting to manage emotional concerns independently (58%).
• 75% of patients preferred talking to a primary care physician if they were to have an emotional concern.
• 42% had received mental health services prior to their lung cancer diagnosis.
• 33% reported that they had received mental health services since their lung cancer diagnosis.
• Only a few patients without a history of mental health service use accessed these services following the lung cancer diagnosis.
So, most lung cancer patients do not think of their predicament as a mental health issue, unless they have a previous history of using the health services.
Older Cancer Patients
Older cancer patients actually experience less distress than younger patients.
But when older patients are distressed, their emotional state is more likely to reflect physical comorbidities and limitations in their functioning. Distress among older cancer patients is also more likely to represent psychiatric disorder for which they will have long-term risk of relapse and recurrence. And older patients pose more difficulties in obtaining the kind of monitoring of treatment and follow-up any depressive or anxiety disorder they may have.
We need to keep in mind that most diagnosable psychiatric conditions are chronic and recurring, with a first episode in adolescence or early adulthood. By the time older patients get diagnosed with cancer, any risk for depression or anxiety disorders has probably expressed itself and that have probably been some episodes of treatment.
But having a physical condition like cancer means that subsequent episodes of depression or anxiety are going to be more frequent and last longer.
The issue is not initial detection, but of arranging continued care and follow-up in general medical care, where routine care is quite inadequate. So, why concentrate our efforts on detection and referral, if it only means that more patients will get in adequate care in the community?
Older patients experience their cancer in the context of other physical conditions and limits on the physical functioning. These problems may get noticed in repeated visits to a cancer center for treatment of their cancer, but are difficult to treat in such settings. And yet, being diagnosed with cancer and being treated in a specialized cancer center often cuts off older patients from their primary medical care and reprioritizes their goals as dealing with their cancer.
In health services research terms, a diagnosis of cancer often transfers patients out of their usual healthcare and into specialized cancer care, where the goals of medical care are reorganized. Addressing other physical conditions requires complex care coordination. This figure represents the kind of complex care coordination that a 71-year-old patient actually needed. The lines represent telephone calls, emails, and patient visits.
Discussing the Issues
Older patients tend to be poorer than younger patients, because of inadequacies in retirement savings and pensions.
Many older patients grew up in an economic system that did not expect them to live so long. As a result of being poorer and old, they are likely to have complex needs for social services, but also to have more difficulties accessing these services.
Again, while these problems are likely to be noticed in repeated visits at a cancer center, this is not where these needs can most readily be met. We are back to the issue of complex care coordination, unless we are going to ignore these issues.
The medical and social needs of older patients not readily resolved in time-limited sessions of counseling. And these patients are probably less interested in discussing the emotional experience of having such problems than in getting them resolved.
But psychological counseling is what is being advocated by those who promote routine screening and referral.
The assumption is that screening will identify needs that can be met with counseling. For instance the European Partnership Action Against Cancer Policy Statement on Multidisciplinary Cancer Care states:
In addressing other care objectives, patients should always have ready access to counseling for psychosocial support; patient distress is particularly important and should be screened for from diagnosis onwards.
And from one of the leading advocates of screening:
Interventions usually assume one of four common forms: psychoeducation, cognitive-behavioral training (group or individual), group supportive therapy, and individual supportive therapy.
Older patients pose more difficulties in obtaining the kind of monitoring of treatment and follow-up any depressive or anxiety disorder they may have.
Most at Risk
Resolution of the needs of nonYAVIS cancer patients requires discussion, negotiation, and follow-up, often with multiple frustrations dealing with bureaucracies and medical care and social services outside the immediate cancer setting.
These tasks are left to social workers and nurses who cannot bill for them as counseling. Consequently, in cash conscious, profit-centered cancer care, the activity of talking to patients and those who provide to talk are devalued. Think of it:
A social worker or nurse who accurately records the three hours spent getting home visits and MealsonWheels for a housebound, inarticulate older widowed cancer patient
A similar amount of time by the same professional delivering mindfulness therapy to well insured patients who were quite able to pay out of pocket anyway.
Who is more important? Who is most at risk when cutbacks in staffing and funding are considered?