“When you don’t take your medication, you’re more likely to get sick.”
“I hear you doc, but I can manage this.”
Conversations like these can make physicians uncomfortable. When patients refuse recommended treatments, physicians are apt to worry not just about their patients’ health and if they are doing everything they can to help them, but also if they will be to blame if the patient suffers a poor outcome.
This problem is neither new nor uncommon. Patients have been refusing medical advice for as long as there have been doctors and they do so across the spectrum of care, from the outpatient clinic to the hospital to the nursing home. A dramatic example of this is when an inpatient leaves the hospital against medical advice (AMA). More commonly, conflicts can arise over other declinations of care, including non-adherence with medication, treatment, or screening recommendations, by disengaging with their health care providers, or failing to follow-up regularly.
Although the tendency is to frame these conflicts over rules, regulations, and legal liability, these dilemmas are primarily about physicians’ obligations and patients’ rights, and thus benefit from an ethical perspective. In general, ethical tension exists when a physician’s obligation to promote a patient’s best interests competes with the physician’s obligation to respect the patient’s autonomy, that is, a patient’s right to decide about what care they accept. Trying to balance these obligations without inappropriately favoring one of them can be a regular challenge for clinicians.
Physicians promote patient autonomy when they involve patients in discussions about their care. Still, simply providing a technical listing of the relevant medical information and standing aside so patients can decide is not what physicians or patients want. Patients want their physicians to contextualize the information and make a recommendation based on medical evidence and patients’ goals. At the same time, patients do not necessarily want their physicians to decide for them. Such paternalism, when physicians make unilateral decisions about what is best for patients, is no longer ethically acceptable. Where does that leave the clinician, who is trying to help patients promote their health but avoid being paternalistic? The answer lies in 1) engaging patients in the decision-making process, 2) respecting competent patient’s choices, and 3) promoting harm reduction when patients make choices that do not prioritize their health.
The most common reason patients decline recommended care is because they lack information.1 In these cases, a physician’s ethical obligation is to ensure patients understand exactly what they are declining. This includes clarifying the indication for the treatment, its risks and benefits, any alternatives, and the risks and benefits of the alternatives. Often, patients can be persuaded to agree to a beneficial treatment simply by identifying the source of their misunderstanding and correcting it.
If a physician has determined that a patient understands the available options but continues to decline the recommended option, the physician can try to understand how the patient arrived at his or her decision. Understanding the why behind the declination can create an opportunity to intervene. A clinician might say, “You told me you don’t want the surgery because ‘it’s just not right for me.’ What about it isn’t right? Are you worried about surgical complications? The anesthesia? Staying in the hospital after the procedure? Something else?” Creating space for patients to voice their concerns can help identify previously undiscovered reasons for declining a recommended option.
If a physician obtains a patient’s “informed refusal” (i.e., informed consent to decline the recommended treatment option), then the physician has honored an important ethical obligation: respecting a competent patient’s right to decline recommended care. But respecting a patient’s right to refuse does not address another core obligation of medical practice: how to help patients promote their health.
Harm reduction maintains the therapeutic relationship while helping to promote a patient’s best interests. It attempts to reduce the adverse health consequences that may come from a patient’s unhealthy behaviors while accepting that such patients are likely to continue these behaviors. This is practiced on large scales with needle exchange programs and on smaller scales in physicians’ offices with nicotine replacement therapy.
Practicing harm reduction means identifying other medically acceptable options that the patient is willing to accept.2 It does not mean suggesting treatment options that are not in accord with accepted standards of medical practice. Doing so would threaten the integrity of the medical profession because it would harm patients without a potential for benefit. Identifying other medically acceptable options that are preferable to the patient maintains the treatment alliance and promotes the patient’s health more than doing nothing.3 For example, a patient who wishes to leave the hospital AMA may be behaving in way that undermines his or her health. But if a clinician can arrange follow-up with the patient’s primary care provider in 24 to 48 hours, the patient may find that preferable to continued hospitalization and will keep that patient engaged in care.
Competent patients have a right to decline recommended treatments and physicians have an obligation to respect that right. Although it is frustrating to stand by when patients decline recommended care, it does not mean they wish to decline all help. Keeping patients engaged in their care allows physicians to help when and where they can.
David J. Alfandre MD, MSPH, is a health care ethicist for the National Center for Ethics in Health Care (NCEHC) at the Department of Veterans Affairs (VA) and an Associate Professor in the Department of Medicine and the Department of Population Health at the NYU School of Medicine in New York. The views expressed in this article are those of the author and do not necessarily reflect the position or policy of the NCEHC or the VA.
1. Appelbaum PS, Roth LH. Patients who refuse treatment in medical hospitals. JAMA. 1983;250:1296-1301.
2. Stratton K, Shetty P, Wallace R, Bondurant S. Clearing the smoke: the science base for tobacco harm reduction—executive summary. Tob Control. 2001;10:189-195.
3. Alfandre D. Clinical recommendations in medical practice: A proposed framework to reduce bias and improve the quality of medical decisions.” J Clin Ethics. 2016:27:21-27.