Bringing the Humanistic Approach to Palliative Care: From Diagnosis and Throughout Disease Course

A Conversation With Teresa A. Gilewski, MD


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Teresa A. Gilewski, MD

If we can integrate the humanistic aspects of care into the scientific aspects of care, it is likely that both patients and physicians will benefit. Both of these components of medicine are part of a lifelong learning curve.

—Teresa A. Gilewski, MD

For much of her career in oncology, Teresa A. Gilewski, MD, has sought to bridge the science of medicine with the humanistic aspect of care. She has created the Art of Medicine lecture series at Memorial Sloan Kettering Cancer Center in New York, where she is a medical oncologist on the Breast Cancer Service in the Department of Medicine. Dr. Gilewski has also written, produced, and directed four films focusing on humanistic care, including The Physician as the Patient, which was shown at ASCO’s Annual Meeting in 2007.

At this year’s ASCO Annual Meeting, Dr. Gilewski will convene the event’s first Humanism in Medicine book club. The book featured for discussion is Mountains Beyond Mountains: The Quest of Dr. Paul Farmer, A Man Who Would Cure the World by Tracy Kidder (Random House, 2003).

The ASCO Post talked with Dr. Gilewski about the importance of practicing humanism in palliative care.

Integrating Science With Humanism

Please describe the humanistic aspect of palliative care.

I view the humanistic aspect of palliative care—and oncology care in general—as the practice of medicine that highlights the interactions between human beings. It encompasses the personal interactions between the physician and the patient, the physician and the family members, and other professional caregivers and the patient.

 

Please explain the importance of initiating palliative care soon after a cancer diagnosis.

Palliative care has historically been viewed as end-of-life care. However, if patients are experiencing symptoms such as nausea, vomiting, or pain from treatment or their cancer at any stage of their disease, physicians will palliate these symptoms. So palliative care is really a continuous approach to care throughout a patient’s illness.

Palliative care includes not only the use of drugs, but also interactions with patients that may focus more on the humanistic side of care. For example, one of my colleagues who has been ill noted that he searched for a physician who was “in it for him.” He wanted a physician who would go the extra mile for him—not only someone who would try to find the best treatment for his disease, but one who would convey that he really cared about him. I think that the optimal approach to patient care is really the integration of science with these humanistic components.

Part of our responsibility in the practice of medicine is to alleviate suffering—not just physical suffering, but also, at times, a broader level of suffering that may include emotional, psychological, and existential suffering. Caring for the whole patient should ideally be second nature to us, but that is often a challenge for oncologists. In addition to developing the best drug regimen, we need to identify strategies that may alleviate patients’ emotional and physical pain.

Barriers to Humanism

What are some of the barriers to practicing humanism in oncology?

There are many. First, there is the perception that being humanistic requires a lot of time. While on occasion that may be true, for some patients it may only take a few minutes to convey a sincere interest in their well-being.

A patient’s daughter once told me that when her mother visits the doctor, the usual initial question is, “How are you feeling?” But it is the next couple of questions the doctor asks, “How was your weekend? How are your grandchildren?” that actually mean the most to her mother. Those few inquiries about a patient’s life express a concern about the patient as a human being and are viewed very positively.

Also, the business of medicine today does not really encourage physicians to focus on the humanistic aspects of care. It’s relatively easy to submit a bill for reimbursement of chemotherapy or for a procedure. It’s much more difficult to get reimbursed for the humanistic aspects of care.

Another major challenge is overcoming a level of professional discomfort, because the humanistic approach to medicine thus far is often not evidenced-based or easily measureable. There is also discomfort on a personal level, because some oncologists may feel that this humanistic component of medicine chips away at the protective mechanism they’ve put in place and could result in a huge emotional toll.

Moreover, sometimes physicians just might be having a “bad day,” and they may fall short of their best intentions. It is challenging to achieve a balance between these humanistic elements and the day-to-day practice of medicine, but we can’t view humanism as an all-or-nothing approach to care.

We learn such a tremendous amount from patients—and not just about science. There are so many profound moments in our interactions with patients that may really impact on how we perceive life in general and how we face our own mortality. As physicians, we are so privileged to have the opportunity to experience these interactions with patients. If we don’t allow ourselves to take advantage of these opportunities, I think we miss out on what it means to be a physician.

While the science is incredibly important in determining treatment and evaluating potential outcome, these other parts of patient care, while harder to quantify, are equally important. I would even go so far as to say that at certain points in a patient’s illness, the humanistic aspects of cancer care supersede the scientific.

Greater Focus on Humanism

What has to happen to make humanism a more integral part of palliative care and oncology care overall?

One suggestion is to include these other aspects of care in the programs for our scientific meetings. When we don’t spend time focusing on these humanistic parts of care, there is an implication that they are not as important as the scientific parts of care.

One of the things we can do as a community in ASCO is to include sessions on the humanistic approach to oncology care as part of the routine agenda at the ASCO Annual Meeting. This would acknowledge that while advances in science to improve patient outcome are critical, these humanistic issues are also of significant value. If we have regular sessions on this topic, emphasis on the humanistic components of patient care may become more ­commonplace.

Articles in the Art of Oncology section in the Journal of Clinical Oncology (jco.ascopubs.org/cgi/collection/a007) and the Piece of My Mind section in JAMA (jama.jamanetwork.com/­collection.aspx?categoryid=5766) also provide a venue for thought-provoking insights into the challenges and experiences of patient care with an emphasis on these humanistic issues.

If we can integrate the humanistic aspects of care into the scientific aspects of care, it is likely that both patients and physicians will benefit. Both of these components of medicine are part of a lifelong learning curve. ■

Disclosure: Dr. Gilewski reported no potential conflicts of interest.

 

Palliative Care in Oncology is guest edited by Jamie H. Von Roenn, MD. Dr. Von Roenn is
ASCO’s Senior Director of Education, Science and Professional Development Department.


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