Treatment choice is ultimately the patient's
■ A column that answers questions on ethical issues in medical practice
The Ethics Group provides discussions on questions of ethics and professionalism in medical practice. Readers are encouraged to submit questions and comments to [email protected], or to Ethics Group, AMA, 515 N. State St., Chicago, IL 60654. Opinions in Ethics Forum reflect the views of the authors and do not constitute official policy of the AMA. Posted Oct. 4, 2004.
A patient who has cancer and a poor prognosis informs you he wishes to try alternative treatments including a macrobiotic diet, colonics, and positive imaging to purify his body of toxins and focus the healing powers of his mind. How do you respond?
Each individual has the right to determine what medical treatment he or she will receive, including what life-sustaining treatment will be provided for a terminal condition. It is the physician's responsibility to advocate for the patient's right to choose any therapy, including alternative or nontraditional treatments, that reasonably may be expected to improve the patient's quality of life.
In the case of this hypothetical patient with cancer and a poor prognosis, I would respond affirmatively to his expressed wish to use alternative treatments, including macrobiotic diet, colonics and positive imaging, as long as it will not further harm him. Even if there is no scientific evidence to support his choice, as long as the measures won't harm him or his family or worsen his quality of life, it is important for him to use therapies he believes will make him feel better. My purpose is to support my patient and to provide advice and information.
I won't be silent, however, if I believe that a therapy could cause harm to him or his family. If I believe it will worsen the quality of his remaining life, I will speak up. I will also tell him if there is no proven benefit, or if the treatment has been shown to have both beneficial and harmful effects.
A plethora of electronic resources serve patients over the Internet, and many are questionable but offer plausible and compelling arguments. Reputable scientific opinions are not always easy to locate. Physicians must help patients with sound, evidence-based information.
The choice of doing nothing must always be presented to the patient as well. A patient must be informed of the changes to his or her lifestyle and health that a treatment might present, as well as the benefits for the condition being treated. The patient should have an understanding of the option of doing nothing, compared to other treatment options.
The highest-quality health care is an outgrowth of a partnership between the patient, the family, and health professionals. Within the context of this continuing relationship, family physicians must seek the underlying causes for suffering at the end of life and then aggressively implement measures to correct them.
Physicians can go a long way toward alleviating suffering and improving care at the end of life by maintaining and updating their training with appropriate education in palliative care and medical management, advanced communication skills to discover the patient's wishes and value choices, and appropriate sharing of decision-making with the patient and the patient's family.
Use of alternative and complementary treatments has become so common that physicians must assume that all of their patients may be using one or more. It behooves us to learn about them.
Patients often hesitate to tell their physicians that they are using these options because they fear disapproval, or it does not occur to them that these treatments can interact with the medications their physicians prescribe. Therefore, physicians must be knowledgeable and must ask their patients if they are using treatments other than those prescribed, to assess both the dangers and the benefits, just as we ask if they are taking prescriptions recommended by other physicians.
Most of our patients have not been trained in the scientific method and most likely do not have the training to evaluate conflicting or biased information objectively.
Our responsibility is to offer balanced information and help them evaluate their options. Some alternative treatments are useful and helpful, but some are unproven and potentially dangerous. Our patients deserve to know that just because products can be purchased on the grocery store shelf doesn't mean they are harmless. They also deserve to know that their physicians are willing and able to help them fully and intelligently consider their choices.
Michael O. Fleming, MD, president, American Academy of Family Physicians
Four ethical issues arise with cancer patients who seek alternative therapies or use such therapies in an integrative manner with conventional care: autonomy, safety, efficacy, and hope.
Autonomy. Foremost is patient autonomy, expressed as freedom of choice and empowerment. If the patient is a competent adult, respect for autonomy is a pivotal value. If conventional medical therapy has failed or offers little hope, then communication, support, and seeking understanding of the patient's motivations are essential.
The use of such terms as "allowing" the patient to seek certain alternative therapies is inappropriate and reflects an authoritarian attitude that neglects the evolving model of health care referred to as "integrative medicine." The integrative model values the patient as an informed and empowered participant in selecting health care choices. The healing power of the body is acknowledged and encouraged through all available means. The physician acts as an expert guide, a consultant. Ultimately, however, the patient must choose, informed by the best knowledge of the doctor.
To help patients be truly informed and autonomous requires that we:
- Determine the patient's beliefs, fears, hopes, and expectations.
- Find out what conventional treatments have been tried or rejected and why.
- Explain prognostic factors associated with the stage of the disease and explain the potential benefit of conventional therapy as well as its risks.
- Assess the patient's ability to make informed choices, excluding the effects of neoplastic, organic, chemical, or depression-induced alterations in thinking.
- Acknowledge the patient's spiritual and religious values and beliefs and views of end of life.
- Discover what support the patient can rely upon from family, faith community, and friends.
We must determine why the patient is seeking alternative therapies in the first place. By creating a trusting relationship based on good communication between physician and patient, misunderstandings are avoided on both sides and the physician becomes an advocate to enhance informed choice.
Safety. A corollary to the dictum primum non nocere may be stated as "prevent patients from harming themselves." Due diligence is required in determining the safety of alternative therapies that a patient has selected. Is there an interaction between drugs the patient is taking and certain herbs or supplements? Is the therapy directly harmful; e.g., can colonics therapy cause infection, bowel perforation, or electrolyte disorders? Does use of the therapy harm the patient because it is replacing a proven and effective therapy? Is the cost and time of therapy a potential harm to the patient and his or her family?
Frank, nonjudgmental discussion with the patient is necessary to answer the question of safety. Assess the alternative therapies individually. Information is widely available in medical journals, reliable Web sites, and databases. It is not clear thinking to ignore iatrogenic deaths or to overemphasize the risk of alternative therapies just because they are not in the medical mainstream.
Efficacy. If a therapy is ineffective, the patient must be informed of this. Alternative therapies, by definition, have not reached the level of evidence of many conventional therapies.
Many cancer therapies, including chemotherapy, radiation therapy, and a number of plant-based agents, were once considered "alternative."
In this case, it is clear that mental imagery, macrobiotics, and even colonics have some support in limited trials. Indeed, evidence exists that safe and inexpensive mind-body therapies, like imagery, meditation, and relaxation, can enhance quality of life, reduce symptoms, and improve immune function.
As unlikely a therapy as colonics is currently under study with funding by the National Institutes of Health for advanced cancer treatment, based on a promising "best-case series." Presenting patients with the best evidence is sometimes the greatest service we can offer them. Arguing that they should not try an unproven therapy is unlikely to generate a good therapeutic relationship. It may even be cruel in a case where no better standard-of-care therapy is useful.
Hope. Providing hope, empathy, and compassionate presence is truly healing. The physician should address the patient's psychosocial and spiritual needs, the need for meaning in his life, and a means to deal with relationships, pain control and suffering. Such palliative care ought to encourage the self-healing that is accessible through the placebo or other nonspecific effects. Even if a cure is not possible, much can be done.
Alternative therapies often signify a symbolic choice arising from the patient's desire to re-establish autonomy, control, and hope. Using such therapies may fill a deep psychological and spiritual need, taking on a sacramental quality.
If the physician clashes with a patient about alternative therapies, it is unlikely that physician will be trusted to provide comfort or counsel in end-of-life matters.
One can disagree with a patient's choices while compassionately engaging and supporting the person. In this way, we fulfill our roles of caring, comforting, and healing, even when a cure is not possible.
Victor S. Sierpina, MD, WD and Laura Nell Nicholson Family Professor in Integrative Medicine and associate professor of family medicine and adjunct faculty of the Institute for Medical Humanities at University of Texas Medical Branch, Galveston, Texas
Acknowledgements: I appreciate the input of ethicist Harold Vanderpool, PhD, of the University of Texas Medical Branch Institute for Medical Humanities, who reviewed this essay. Support for this article was provided by the National Institutes of Health/National Center for Complementary and Alternative Medicine CAM Education Project: #IR25AT00586-01. The opinions expressed are those of the author.
The Ethics Group provides discussions on questions of ethics and professionalism in medical practice. Readers are encouraged to submit questions and comments to [email protected], or to Ethics Group, AMA, 515 N. State St., Chicago, IL 60654. Opinions in Ethics Forum reflect the views of the authors and do not constitute official policy of the AMA.