Interview with Dr. Kathleen M. Foley
Dr. Kathleen M. Foley is an Attending Neurologist in the Pain and Palliative Care Service at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City. She is Professor of Neurology, Neuroscience and Clinical Pharmacology at Weill Medical College of Cornell University, and holds the Chair of the Society of Memorial Sloan-Kettering Cancer Center in Pain Research.
Q: You're a practicing physician; you write extensively about pain control and end of life care; and you have been involved with the Project on Death in America since its inception. What are the most significant changes that have you seen in pain management, particularly at the end-of-life, since you became a doctor?
A: The one group of people who know best about pain management are nurses working in end-of-life care. Most of the practices that have translated from hospice and home care into hospitals and nursing homes have come from nurses. The hospice nurse is the "reservoir of expertise" in terms of understanding how to manage pain and how to utilize medications most effectively. These nurses often serve as educators to the doctors, and in some states, nurse practitioners can write prescriptions as well.
However, the carry-over has been slower in certain scenarios. Studies have shown that two-thirds of patients with advanced cancer experience significant pain. The expertise gained from hospice in dealing with these patients is beginning to be seen in other settings, primarily through nurses. It has not translated as well into these settings beyond cancer care.
There is data to clearly demonstrate that an extraordinary contrast exists between health care settings in terms of how pain and its symptoms are managed. Efforts to share this expertise can make a world of difference; for instance, the data shows that having hospice nurses in nursing homes raises the level of care overall. But the barriers to getting this expertise into hospital settings are inherent in the rotation and training schedule of doctors and nurses. Studies have shown that there is consistently a lack of training, a lack of information in textbooks, and a lack of role models in end-of-life care within the medical system.
Q: In an article in Ideas For An Open Society (October, 2002) you wrote that "Over 25 years of pain research has helped us redefine the important concepts of drug tolerance, physical dependence, and psychological dependence or addiction.This knowledge needs to be incorporated into the everyday practice of physicians to facilitate their ability to appropriately prescribe opioid drugs for patients." What are some tangible ways that this knowledge can be included in physician training, both for practicing doctors and those currently in medical school?
A: Initiatives both at the national and local levels are helping. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) has added pain as a vital sign, and they are beginning to focus on changing outcomes in pain management. In California, physicians are mandated to be trained in end-of-life care and pain management. And I see change happening differently in each discipline. For instance, the management of post-operative pain has improved greatly, due to the work of anesthesiologists and surgeons. When we move to chronic pain and illness, the level of improvement is not as high. The problem remains that making change requires expertise and role models; simple curriculum changes are not enough.
Hospice also serves as a model-its approach to pain management as well as emotional support for the patient has always been organized, sophisticated, and inclusive. Many nursing homes are now good examples of how these qualities can be translated into institutions. But hospice nurses and doctors do not really "cross-talk" with other professionals or go back into hospital settings as often as might help. As more hospitals form palliative care teams, that may change.
Q: How does the palliative care team operate at Memorial Sloan-Kettering Cancer Center (MSKCC)?
A: Pain and palliative care teams provide consultations at the request of the physician. They also offer supportive care, based on a 24-hour nurse-centered model. And the social worker's role is critical. In fact, one of the most dramatic changes that I've seen in palliative care has been in the role of the hospital social worker.
Q: What are some of the changes you've seen in the public's attitudes towards pain management?
A: In general, there is a greater awareness on behalf of the public. Studies have shown that 44% of households are dealing with someone with chronic pain. This has helped move issues of pain management out of end-of-life care into broader areas. One result that we have seen is that the strong fear of addiction that was often associated with pain control in terminally ill people has moved down the list of consumer concerns. Pain control, and the public's understanding of it, is becoming more sophisticated.
I always stress that patients should talk to their physicians about pain and symptom management. However, patients and families are generally poor advocates for pain control during times of crisis. Often they are not even sure what to advocate for. It's best to learn as much as you can and have these conversations early.
Q: What efforts have you seen that best educate laypeople about pain control?
A: There is always an ongoing need to educate consumers, but some groups have served as real leaders in this area. The initiatives of the American Pain Foundation have helped the public to see the need to argue for better education and pain management. They publish materials and run chat groups. Their work is especially helpful for issues of chronic pain, but it definitely carries over into end-of-life care.
The American Cancer Society has also been an important advocate for pain education. JCAHO has also included pain control and education as one of its patient goals and rights. The American Alliance for Cancer Pain Initiatives has built on a community-state partner model to further the public's knowledge about these issues.
Q: HFA's 2004 National Bereavement Teleconference will focus on Alzheimer's disease and related dementias. What are some of the difficulties in managing pain in patients that may not be able to communicate about their discomfort?
A: Different challenges exist depending on the severity of the illness. In a person in the early stages of Alzheimer's disease, the patient can usually report pain and discomfort. The issue here is often that the patient is not taking his or her medications properly or on schedule. The challenge here is providing adequate structure and supervision, without interfering with the more subtle issues of patient independence and autonomy. Medication management, including the use of pillboxes, timers, and even doses, can be safety issues in these situations.
In patients with more advanced Alzheimer's, the patient may become progressively mute or unable to communicate about pain. It is often difficult for health care professionals to differentiate between general moaning and moaning in pain for these patients. Some excellent assessment tools and strategies have been developed to help doctors and nurses "read" grimaces, moans, and even physical positioning to assess pain in these situations.
Q: In addition to your work at Memorial Sloan Kettering Cancer Center you served as head of the Project on Death in America. What have been some of PDIA's most innovative programs?
A: At PDIA, we saw a real need to model leadership within each discipline. We focused on creating leaders in nursing, social work, and medicine. A great debate that continues today is whether to train leaders from across the disciplines together, as that is how they must operate in the patient setting. For me, I found that the most successful programs of professional education and development at PDIA were ones that stayed within a discipline. As well as the interdisciplinary model can work in a health care setting, it is necessary to develop the expertise and leadership unique to each discipline, and then try to bring those leaders together in the institution.
In terms of moving forward, I am proud that PDIA was able to increase the number of experts in each of these fields, and would like to continue to find ways to model this leadership. The VA model that has developed is an excellent every-day practice model. Education is still critical; we are still so backward and old-fashioned in developing palliative care, and each profession is still fairly fragile in its expertise and understanding. The future should of course include interdisciplinary training and education, but identifying each profession's role is becoming increasingly difficult as they begin to blur, based on what each individual patient needs. We all "talk the talk" about interdisciplinary care, but most teams realistically tend to function by what the patient needs-for one, it may be intensive medical care; for another, it may be primarily emotional and social support.
Q: With the withdrawal of both PDIA and Last Acts from end-of-life grantmaking, what or whom do you see that might fill the vacuum for these types of programs?
A: We are at a critical, fragile time in this area. PDIA has put together recommendations for funders. (See below for link to full set of recommendations.) Many community funders and individual family foundations are beginning to support palliative care teams in local hospitals. The VA is supporting these initiatives in a broad infrastructure, and private companies like Kaiser are also seeing the value of these programs and developing leadership initiatives. More broadly, hospices are beginning to bridge the gap with palliative care teams. The hospice movement has benefited greatly from generous philanthropic support. I am hopeful that hospices will now encourage that support for broader end-of-life care initiatives. In general, funders should be thrilled about how the agenda has been moved forward, and be encouraged to expand upon those advances.
Editor's Note: Listed below are links to some of the resources mentioned above.
Ideas for an Open Society, Volume 2, Number 4, October 2002, Open Society Institute.