OncologySTAT Editorial Team. 2011 Oct 17, Interview by L Scott Zoeller
Dr. Jimmie Holland is Wayne E. Chapman Chair in Psychiatric Oncology and Attending Psychiatrist, Department of Psychiatry and Behavioral Sciences at Memorial Sloan-Kettering Cancer Center.
OncologySTAT: Would you give us some background and context to the work you have been doing in the area of psychosocial care in patients with cancer?
Dr. Holland: Let me start with the fact that I’ve been doing this for about 35 or 40 years now. I’ve been at Memorial Sloan-Kettering for 35 years, and I’ve seen the evolution from the time when there was nobody representing patients with psychosocial issues except for social workers in cancer hospitals; I was the first full-time psychiatrist to be appointed in a cancer center. We had the chance to start back in 1977, and it has had a ripple effect. Today, it would be hard to find a major center that doesn’t have some formal psychosocial or psychiatric unit.
We began to use psychotropic drugs and to use different kinds of counseling, and we were able to show that people felt better after our interventions. Oncologists began to see a role for us, although we’ve always had an uphill battle because people and doctors have negative attitudes about psychological issues, which are stigmatized, even in illness. Bringing science to this area was new because of the concept that patient’s self-report of symptoms was not a valid measure. So, really, the first goal that I had was to figure out how to measure these psychological states, since the conventional wisdom of the scientist was that there isn’t any science in social science, and they used to say that you can’t measure anxiety, depression, or even pain.
Our first task was to develop instruments to measure so that we could put a quantitative number on emotional states, which meant we had to develop validated scales, which we did. You can now measure, with numbers, pain, fatigue, anxiety, depression, delirium, and quality of life—that’s been a big one. We were then able to say, okay, now, we can quantify these symptoms. If we do an intervention, we can actually show that we changed the score and, therefore, had an impact on fatigue, on pain, or whatever. So, that was the first step; we had to get validated. Then, we had to do the research. We have a whole body of evidence-based data now, which show that our interventions are effective. We first put those interventions into the National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines
1 in 1997, and we set up a multidisciplinary panel through the NCCN to look at psychosocial issues and what the barriers were to implementation of better psychosocial care.
I still chair the committee and the panel. We talked with oncologists, nurses, and social workers, and everybody agreed the big problem is that nobody likes the word “psychiatric” or “psychological,” or they feel it’s a stigma for a patient to be asked, “Do you have psychological problems?” So, we decided that we needed a better word than “psych” anything. We came up with the word “distressed.” Anybody would agree that it is normal to be distressed if you have cancer; but, you can be at a normal level of distress, or you can be distressed so much that you can’t sleep or eat.
So, we used that word “distressed,” and the term we used was “distress management in cancer,” which we coined to try to eliminate the stigma. We put together these guidelines and based them on data, on research when we could, and on consensus when we didn’t have data. The guidelines are updated every single year, and, every year, we add what’s new, such as an antidepressant that works, and so on. That was the first really major step forward.
Then, in 2005, the National Institutes of Health (NIH) allocated $1,000,000 to the Institute of Medicine (IOM) to look at the barriers to psychosocial care. The IOM formed a committee on which I sat for a year, and we examined the quality of the evidence base for these interventions. We researched the kinds of services available. What kind of professional people do we need? Are they being trained right?
We put together a year-long study, and out of it came a book, a report in 2008 called Cancer Care of the Whole Patient,
2 which discusses incorporating psychosocial needs into cancer care. The work here has been an enormous step forward because what we determined is it takes no more money to do this; it’s just an attitudinal change. Just as you measure pulse and temperature and respiration, you ask about pain as a fifth vital sign. And distress should become the sixth vital sign. You must ask about, or measure, pain and distress, just as you do the traditional vital signs.
We’re beginning to make an impact in this area. For example, Paul Jacobsen, as part of the American Psychosocial Oncology Society (APOS), was involved in the development of criteria by which we can audit a community oncologist practice.
That work is being done through the Quality Oncology Practice Initiative (QOPI), through ASCO as a way of self-improvement for community oncologists. We have been able to validate this auditing process, and we can now audit someone’s practice and determine the level of quality of their psychosocial care.
In fact, the QOPI audits now include two questions about psychosocial care, so we’re getting data on the quality of the psychosocial care in practices that participate. We’ve found that when you provide feedback to an oncologist to say, “You’re not doing too good of a job here. Let’s try to help you with that,” you can improve the psychosocial care.
This is how we come up with ways to impact clinical care. We also put a grant application in to train the mental health members of oncology teams through a curriculum which will be given at the APOS meeting. The idea is that we train the mental health people on what can be done. They will take what they learned home to their community oncology teams, we hope. Over the course of 4 or 5 years, we will have trained a pretty good-sized cadre of people, who may make an impact on the quality of care offered by their oncology teams with the simple idea that you just must ask about it; you must incorporate psychosocial care into your total care of a patient.
The IOM gave us this language that basically says quality cancer care today must integrate psychosocial into routine care, and that has been the best thing that ever happened to our field. It gave us credibility from a policy body like the IOM, which we never had before. We’ve been using that to put pressure on cancer professional organizations. And, we are taking this to the international arena. We have gotten buy-in from the International Union Against Cancer, the International Pediatric Oncology Society, and the Lance Armstrong Foundation.
3 Fourteen international organizations have bought into the statement that psychosocial is a part of routine care. I am going to our International Psycho-Oncology Society meeting next week, where we are going to try to form an international network to do similar kinds of things to what we’ve done in the US. It is a time for change and it is a time with some momentum, and I’m trying to keep that momentum going.
It’s not like we don’t have a lot of barriers. It’s not like it’s rapid, but it is happening. Now, my real task is to figure out to operationalize this. How do we take that new standard and get it to the clinic? That’s the task. There’s something now called the science of implementation. How do you get an idea—a new drug, a new kind of management concept—from bench to bedside and used in the clinical setting?
OncologySTAT: Are there data on how prevalent and to what different degrees oncology patients have psychological distress? How many of those patients are actually getting active management either in a large cancer center or out in the community?
Dr. Holland: Well, I can answer the first question; the second is harder to answer. A big study was done at Johns Hopkins of 5000 patients coming to the cancer center.
4 The investigators used the Brief Symptom Inventory,
5 a widely used, validated scale of patient distress levels. Approximately 35% of these 5000 patients showed levels of distress which were clinically significant, such as depression or anxiety. Up to 40% or 45% of people with brain, lung, and pancreas tumors had the highest distress levels, which isn’t surprising. So, I would say that at least one-third of patients have distress sufficient enough to be clinically important at some time during the clinical course of their disease. Of that 35%, maybe 5% receive care for the problem.
Now, what we’re finding when using the “distress thermometer,” which is what we call our 0 to 10 scale, is that a lot of people would say, “Oh, I scored an 8 that day, but, you know, I was just upset then; I feel fine today.” Although not everyone needs help—if you ask that one question, “How is your distress level on a scale of 0 to 10?”—the scale also screens out people who don’t need any help. If a patient scores <4, he’s okay. If a patient scores >4, he/she really should be asked another question or two, to find out what’s causing the problem and if he needs a referral for psychological care. The idea is that the distress thermometer would identify the people in need and exclude people who don’t have a problem.
OncologySTAT: Why do you think that the NCCN guidelines aren’t being adhered to as tightly as you would expect?
Dr. Holland: I think the issue is time. I think clinics are awfully busy. Screening for psychological distress has not traditionally been part of what oncologists think is very important. So, how do you change an ingrained attitude? Of course, some oncologists are better than others; some are very interested in this. I think if we can get it down to, “This isn’t going to take you much time. This is really simple and you can refer the patient to another practitioner in your community.” Also, many physicians aren’t familiar with community resources. Not knowing where to refer the patient next may become a barrier to asking the questions to begin with. We need to bring this all together, and we have through APOS. We have a toll-free help line available for patients, where they can call in (866-276-7443) and we will help them find a counselor in their community who knows about cancer.
I think that this is an important service, and I think if oncologists knew about it, they could just use us and we would help their patients find somebody in the community; but, we haven’t gotten that point across too well yet.
OncologySTAT: Do you think that the role of assessing psychological distress and referring patients for counseling is something that should only be fulfilled by the medical oncologist or is this also the role of the primary care physician?
Dr. Holland: Well, I think the goal is that survivors go back to their primary care doctors. So, the screening applies equally well in primary care as it does in oncology care. The oncologist needs to collaborate with the primary care physician, so a lot of these issues could go back to the primary care doctor.
OncologySTAT: Are there are certain milestones or certain events along the continuum of cancer care that should trigger an evaluation or re-evaluation?
Dr. Holland: Our thought is that people should be re-evaluated. It’s going to be done initially. However, re-evaluation should occur at any time there’s a transition in care—for example, when treatment ends, when at disease recurrence, or when palliative care has been initiated. These are all points of transition.
The NCCN distress management guidelines incorporate all of this. They give a picture of each point along the continuum and highlight the points at which people are most likely to be distressed.
OncologySTAT: We touched on the question of where there is room for improvement. But how do we go about improving psychosocial care for cancer patients in a way that is practical and effective? What do you see as the barriers?
Dr. Holland: I think there are plenty of places for improvement. The culture is different in every single outpatient clinic and office. So, my hope is that we can train the mental health person on that team—maybe it could be the nurse or social worker—and get them, in the context of the culture of their particular clinic or office, to look at ways to incorporate screening. You can’t just come in and say, “Hello! We’re going to start screening everybody for psychosocial issues!” because the buy-in will be about zip. You really have to do some spadework. You have to get the nurse involved. You have to get the oncologist involved, the administrator involved. Because, otherwise, they’ll feel, “Oh, this is crazy stuff. It’s just taking my time and how do I know what those scores mean anyway?” And it will be crossed off the list. So, planning it and putting it together appropriately is a key piece of it all.
OncologySTAT: Are there good continuing education courses to which a practice could send one of its nurses?
Dr. Holland: You bet. APOS has 20 lectures online that are free (available at
http://www.apos-society.org/professi.../webcasts.aspx). So, you can do an online course and never leave your office; you can take an exam at the end and get a certificate. Practices can also send people to our annual APOS meeting. It is in Miami in February, which includes health disparities as its primary topic. There will be workshops on all kinds of topics—sexuality, teenagers, childhood cancer problems, grief problems. We have all kinds of special interest groups; there’s something for everybody if they choose to come. We’d love to be training people from all disciplines; we’re a multidisciplinary organization, with social workers, nurses, chaplains, psychiatrists, psychologists.
OncologySTAT: What about the patient’s family members or caregivers? How should they be assessed, and should the care of the medical oncologist extend to them? How do you think that would be best managed?
Dr. Holland: I think, without any question, we have been neglecting the family caregivers, and there are more and more studies showing that they neglect their own health. They are under a great deal of stress, and we need to be looking at them more closely. We are suggesting that possibly the distress thermometer might work with the caregivers; it would help to see which family members need some assistance.
When we see a patient, we always look at the whole family and see how they are all functioning, but that’s not common in oncology care. So, we need to be raising the level of awareness about how important family members really are and how their psychological needs are not being met. I mean, they’re so stressed out, working, trying to manage the household, managing the sick person—it’s not easy.
OncologySTAT: Caregivers may even want help in understanding what to say and what not to say to the patients under certain circumstances; sometimes it’s confusing. You wrote about how people use to say, “Don’t tell the patient what her prognosis is, because you’ll get her upset.” So then, the caregiver would carry this burden. It sounds very archaic, but, I think in some situations, caregivers are still confused about this.
Dr. Holland: Yes. It’s still happening. If you go back a little to a prior era, we didn’t even give patients a diagnosis. People were not told the word “cancer” because it was too frightening. Only the family knew the diagnosis, and they were not supposed to tell the patient. We’ve come a long way—candor, openness, and sharing where things really are. I often say to the patients, “You’re the ones who have to educate people, to take the lead a little bit.” If people say something to you that’s really crude, or blunt, then you have to say, “You know, that’s not very helpful. I would hope you would treat me just like you did before I got cancer; talk to me just the same. Let’s talk about the baseball game. Let’s not talk about my illness.” I refer caregivers to a book by Lori Hope called “20 Things People With Cancer Want You to Know.” People have told me they found it helpful. Another book I think is helpful is one I wrote called “The Human Side of Cancer.”
References
1.
http://www.nccn.org/professionals/ph...asp#supportive
2.
http://www.iom.edu/Reports/2007/Canc...lth-Needs.aspx
3.
http://www.livestrong.org/
4. Zabora J, BrintzenhofeSzoc K, Curbow B, et al. The prevalence of psychological distress by cancer site. Psychooncology. 2001a;10:19–28.
5. Derogatis LR, Melisaratos N. The Brief Symptom Inventory. Psychol Med. August 1983; 13(3):595-605.
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