Palliative medicine: a new perspective from the other side of the fence
I never dreamed that after retiring as a clinical hematologist I would fail at retirement and fall into an encore career in palliative medicine.
Although this article may appear as biographical, I mean it to reflect my career that spans the divide between the practice of hematology and the practice of palliative medicine. I have been on both sides of the fence now, providing for me, my colleagues and my patients an important, if not different, perspective. It is my hope and observation that this experience represents a transition from an approach to cure to an approach to comfort, a necessary bridge that could benefit patients, their families and the physicians caring for them. As the American Association of Hospice and Palliative Medicine (AAHPM) button proclaims: Actually, there is something we can do.
In the beginning
My training started at Boston City Hospital with Drs. William C. Moloney and Jane Desforges. It remains a mystery in retrospect why I chose to become a hematologist at a time when we could offer very little to our patients. We could not cure any hematologic malignancies and even supportive care was of limited benefit. Not only were we helpless, but we understood so little.
The advancements made over the past 50 years are truly astounding. To have witnessed and participated in these transformations is gratifying and as the kids say: Awesome! The 33 years spent as a clinical hematologist at the Gundersen Clinic in LaCrosse, Wisc., provided the opportunity to take advantage of this progress. It also taught me the value of direct patient care from diagnosis to treatment, to support, and all too often, to death. The strength of the doctor/patient relationship over the months or years of illness offered a special comfort and meaning that only that kind of commitment could provide. When all else failed there was the security, the familiarity, the comfort of the relationship, the awareness or promise that the patient knew he would not be abandoned, that everything possible would be done that could be done to prevent his suffering.
It was only after formal retirement and then failure of retirement that I discovered palliative care or it discovered me. After running an outpatient hematology clinic at the Veterans Administration Hospital, I learned of a new palliative care service at the University of Minnesota Medical Center-Fairview, loosely associated with the department of hematology/oncology and transplantation.
Suddenly, I was observing a different perspective. In the past I treated, but now I questioned. Before I was responsible for making decisions and implementing therapies, now I was a consultant trying to help patients and their families understand their dilemmas, counseling and supporting them as best I could and working with, and not against, their hematologist/oncologists to reach a meaningful and realistic course of action.
From my own experience, I could appreciate the need of the hematologist/oncologist to always offer another drug(s), to always look for ways to not give up, or abandon hope. I knew that sensation, that pressure; I had felt it myself. Now, I could better appreciate the risks and benefits, the limitations to aggressive therapies, the obligation to understand and respect the patients goals, and to redefine hope and treatment.
I dont remember ever being taught (other than by example?) how to communicate with patients, how to break bad news, how to run family and provider care conferences, how to talk about hospice and how to talk about death. My contemporaries and I just did it sometimes well, and other times probably not so well.
I hope I showed compassion. I knew it was important to be honest and open. I promised to never walk away from the patient and his problems, but rather to appreciate the therapeutic strength of a long-term relationship, to remain to those patients and families a familiar face, their doctor.
I surely had little, if any, formal training in symptom management, especially pain. In retrospect, it remains a source of discomfort, if not remorse, that there were those patients that may have suffered from inadequate pain control; for that I atone.
It was in palliative care that I was introduced to opioid therapy, its pharmacology, dosing and side effects, all those factors that influence effective and timely relief. I know this condition to be true, because I still see all around me inadequate pain control. There is now the opportunity and responsibility to teach others particularly medical students and medical residents to continue to improve this necessary science.
There have been articles published recently directed to the approach of oncology and palliative medicine. The authors have raised the appreciated tension between aggressive and less aggressive therapies. There is no question that the decision to offer aggressive therapies can be difficult, if not problematic, and may be driven by many forces, including patient demand. The difficulty that a therapist has in not offering chemotherapy after careful deliberation is immense and often is more difficult than agreeing to do something, anything.
These articles strive to comprehend the relationship of these specialties as they pertain to optimum patient care and patient satisfaction, but also the behaviors of those practitioners involved in the interactions. There is now evidence to support decreases in costs with palliative medicine consultations, hospital-based palliative care units and services, and home-based hospice care. More importantly, the benefit to patients when their therapeutic options are put into perspective, when undue toxicity can be avoided, when their goals are explored, and means of achieving them are pursued.
This is not to say that palliative care enthusiasts cant also be at risk proposing a provider-centric orientation and not necessarily a patient and family-centered approach. Well-performed objective studies are critical to the advancement of palliative care, to document and demonstrate efficacy and avoid the feel good subjective perception of the palliative care community.
Studies have even evaluated the variations in approaches to end-of-life care among oncologists. The obvious questions and challenges relate to the modification of such behaviors by education and/or mentoring. Why some of us get it and others dont is a critical question and what we can do about it is the challenge. I have tried to comprehend the reluctance of some oncologists to request consultation from the palliative care service. Could it be the discomfort to ask for help, the concern that a nononcology service could possibly contribute on such a difficult clinical decision, that it reflected on the competence of the oncologist? I remember well those times when there were no discernible answers, when symptoms and angst were overwhelming. How I would have appreciated the assistance of an interdisciplinary service to help my patient, his family and me. Surrounding oneself with help seems like such a simple and necessary idea and yet it is often not requested. Who suffers?
It should always be stated that there is something we can do. That something, that therapy, is focused on providing comfort, relief of symptoms and may include chemotherapy. But it needs to always be labeled as palliative and not curative, except when truly appropriate. Furthermore, it must provide far greater benefit than risk. Those risks not only include morbidity, but costs, inconvenience, length of time of/for treatment, delay in getting home and delay in attaining goals of care.
Many new chemotherapeutic agents offer an additional month or so of survival at tremendous expense to the patient and family. Some patients might prefer not depleting their resources as it may be more important for their peace of mind and their familys well-being than the extra month of life, a month that may be associated with suffering and not necessarily the desired quality of life. Not undergoing an expensive toxic treatment could even be construed as a gift to ones family.
Office visits for therapy, whether it be chemotherapy or radiation therapy, may be logistically difficult, if not impossible, for many patients and their families, especially if they are frail and have to travel far. Negotiation with radiation oncology, for example, to shorten the course of treatment for palliation is necessary, as often the difficulty of frequent treatments and travel lead to premature discontinuation of treatment. Furthermore, chemotherapy and radiation therapy can represent a hindrance to enrolling in hospice programs and in so doing delaying an opportunity to be at home for that necessary period and quality of time that hospice represents.
When confronted with a difficult diagnosis, encouraging or at least informing patients of the options of participation in clinical trials is important. Not only may there be treatment-related benefit, assuming the informed toxicity is proportional and tolerable, but there may be patient satisfaction in participating and contributing to improvement in disease management. For example, consider those trials of platinum-based therapies for testicular tumors or antibody-targeted therapies for lymphoma that led to such important advances. Such participation must have been associated with a level of personal satisfaction as well as benefit.
Crossing the bridge
In conclusion, palliative care for patients with malignant disease should not be an either/or option. The interdisciplinary approach of the palliative care team in conjunction with a committed and involved hematologist/oncologist would seem to be the ideal approach for all concerned. The recent decision of the ACGME and ABMS to make palliative medicine a recognized subspecialty combined with the increasing appreciation of the benefits of palliative care to the health care system has provided an exciting and rewarding advancement for those who labored so long to make this possible.
For me, to have bridged and experienced this evolution/transformation is rewarding, if not humbling. To share this experience and perspective with medical students and residents is a challenge and an ethical and professional mission. So with all these efforts, we aim to be what physicians have always strived for, to be healers in every sense of the word.
Rudy Keimowitz, MD, is a Palliative Medicine Physician with a Palliative Consult Service and a liason to the Department of Hematology, Oncology and Transplantation at the University of Minnesota, Fairview, and is a member of the HemOnc Today Editorial board.
For more information:
- Arch Intern Med. 2008;168:1783-1790.
- JAMA. 2008;299:2667-2678.
- JAMA. 2008;300:1665-1673.
- J Clin Oncol. doi:10.1200/JCO.2008 17.7568.
- J of Pall Med. 2008;11:893-906.
- J Clin Oncol. 2008;27:1-2.