For Patient 1, beneficence could translate into allowing the patient to hold onto his optimism and the activities he values highly. He is upbeat, and despite the recommendation to avoid cold exposure, he seems uninterested in altering his lifestyle in the face of this potentially progressive illness. To step to the side would be the path of least resistance and may be a reasonable approach during your initial visit as you establish the patient’s trust; after all, too much information on the first visit could overwhelm him.
However, in the interest of patient autonomy, he should be fully informed about his condition so he can make his own decisions about changes in lifestyle and treatments.
Thus, it would be important to ensure this patient has a reasonable understanding of expected complications and knows he should be vigilant about reporting them. For example, he needs to know about the importance of having regular blood pressure monitoring and reporting consistently high readings given his risk factors for renal crisis. The other concern is that the patient should understand the risks of cold exposure during ski trips, the risks of triggering ischemic injury and preventive measures he can take.
Patient 2 seems devastated by her diagnosis and has imagined a worst-case scenario for herself. Beneficence could translate into trying to maintain hope by trying to convince her that things are not so dire and that she should consider the possibility of a best-case scenario (or at least something better than she’s envisioned). Although this may help calm her in the short term, it may risk instilling a false sense of hope; it would be easy to paint a rosier picture than the reality warrants.
Out of respect for patient autonomy, you may offer emotional support, fully discuss the clinical picture and emphasize the poor predictability of prognosis and significant variation from individual to individual. As with the first patient, it may take time to establish trust and to understand what support the patient has and how she prefers to receive information. With an appropriate social and emotional support system in place, this high-functioning, intelligent woman may be able to process all of the information and make a well-informed decision about the subsequent steps in her care despite her initial reaction.
Learn from Colleagues in Palliative Care
Rheumatologists can take a page from the palliative care literature on how to deliver bad news and incorporate the basic principles for the initial breaking of bad news. These include advanced preparation, allowing emotional ventilation, achieving a common perception of the problem, addressing information needs, responding to immediate medical risks and ensuring a basic plan for follow-up.4,5
