Ethics Forum: Physicians Face Ethical Quandary Discussing Poor Prognosis with Patients

Over the course of a month, you diagnose systemic sclerosis in two newly evaluated patients. Their responses to the news could not be more different.

Patient 1 is a previously healthy 55-year-old man who is an avid bicyclist and skier. He presents with a several-month history of rapidly progressive skin tightening extending to the proximal bilateral arms and legs, recent onset of shortness of breath and Raynaud’s phenomenon. You promptly confirm the diagnosis based on his clinical picture, as well as a positive ANA and antibodies to RNA polymerase-3.

Patient 2 is a 50-year-old college professor with a past history of anxiety, Raynaud’s phenomenon and skin thickening. Her ANA and anti-polymerase-3 antibody are also positive. Her primary care physician recently noted an elevation in her blood pressure on a single reading. When repeated in your office, her blood pressure is normal and unchanged from her baseline readings.

With each patient, you discuss the diagnosis of diffuse systemic sclerosis, its clinical features, the need for close monitoring, potential complications and therapeutic options at present. You also discuss the prognosis over the next few months and years.

What is striking is the vast variation in each patient’s response to the diagnosis: Patient 1 is calm and asks appropriate questions, which he asks rather matter of factly. “I hope I can ski better this season,” is his final remark. You wonder to yourself, “Did he grasp the gravity of the situation? Did he even hear me?”

Patient 2, meanwhile, was initially anxious and tearful and then crying inconsolably as she had suspected the diagnosis and read about it online. At the end of her appointment, she says, “I just wish I had cancer instead—at least people would support and grieve with me.” You wonder if this patient “knows too much for her own good.”

Questions

How do you direct the discussion about prognosis in each situation? For the first patient, do you stay the course and run with it, or do you prepare him for a more realistic future at the cost of depriving him of happiness today? For the second patient, do you offer her an empathetic ear and stay the course, or do you urge her to consider a best-case scenario as a possibility?

Discussion

These are examples of competing priorities that put the rheumatologist in an ethical quandary: the obligation to do what is best for the patient—beneficence—vs. the obligation to respect patient autonomy.^1-3

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

It should be noted that physicians may react to their own feelings about bad news. However, the priority of the clinician should be to understand the patient’s response to the news of the diagnosis. For both of these patients, the critical shared element is that the rheumatologist must listen and acknowledge the patient’s response and try to understand what meaning the patient attaches to the news. It is critical to listen with compassion and ask about sources of support.

How would you approach these cases?

When discussing a poor prognosis with your patients, what has worked well for you? And what has not?

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Rashmi Shah, MD, is a second-year rheumatology fellow at Oregon Health and Science University. She is also a board-certified geriatrician and was involved in providing complex care to community-dwelling frail older adults for four years prior to pursuing a fellowship in rheumatology.

Jennifer Barton, MD, is a staff rheumatologist at the VA Portland Health Care System and an assistant professor of Medicine at Oregon Health & Science University. She receives funding from NIH/NIAMS grant K23AR064372 and conducts research on patient–clinician communication in the rheumatic diseases.

Robert H. Shmerling, MD, is the clinical chief of rheumatology at Beth Israel Deaconess Medical Center in Boston and the chair of the ACR’s Committee on Ethics and Conflict of Interest.

References

1. Gillon R. Medical ethics: Four principles plus attention to scope. BMJ. 1994 Jul 16;309(6948):184–188.
2. Caplan L, Hoffecker L, Prochazka AV. Ethics in the rheumatology literature: A systematic review. Arthritis Rheum. 2008 Jun 15;59(6):816–821.
3. Beauchamp TL, Childress JF. Principles in Bioethics. New York: Oxford University Press, 1979:50.
4. Rabow MW, McPhee SJ. Beyond breaking bad news: How to help patients who suffer. West J Med. 1999 Oct;171(4):260–263.
5. Quill TE, Townsend P. Bad news: Delivery, dialogue, and dilemmas. Arch Intern Med. 1991 Mar;151(3):463-468.

Editor’s note: If you have comments or questions, or if you have a case that you’d like to see in Ethics Forum, e-mail us.