Confidentiality and Its Limits

Multiple sclerosis is believed to be an autoimmune disease of the central nervous system. However, according to Italian physician Paolo Zamboni, it is related to cerebrospinal vascular insufficiency. Zamboni claims that MS can be treated by remedying this condition with venous angioplasty. This surgery is offered as treatment for MS in various countries—Poland, Bulgaria, and Costa Rica, for example. But the Medical Board of Quebec, Canada, does not allow its members to perform the surgery and strongly advises patients against seeking it elsewhere. This opposition is based on the lack of evidence to support the procedure and the serious risks associated with it (including venous thrombosis, stroke, and pulmonary embolism). As a result, many Canadian MS patients have traveled to other countries to receive the surgery. Quebec physicians have been reluctant to provide surgical follow-up for patients who undergo the surgery in other countries due to the lack of information regarding the procedure. No alternative treatments are effective to partially or completely cure MS, and so the treatments available in Canada aim only to manage its symptoms.

Jade is a forty-year-old Canadian woman with MS. She is on long-term disability leave, complains of growing fatigue and muscle stiffness, and has painful sensations in her limbs. She has been followed by an interdisciplinary team in a specialized hospital in Quebec for the past twenty years, since she was diagnosed. At her last appointment, Jade told her physical therapist that she recently underwent the experimental Zamboni surgery in Poland, despite her physician’s strong recommendation not to. Jade fears her physician’s reaction, so she asks the physical therapist to keep this information from the rest of her medical team.

Jade is shy and tends to distrust health care professionals. It took many years for her physical therapist to gain her trust and to develop a positive therapeutic relationship with her. However, the physical therapist knows that serious complications can occur in patients who have had Zamboni’s surgery. Not telling Jade’s physician about the surgery could result in harm; Jade could have complications that are not recognized. Providing the information to the rest of the team would allow them to adjust her treatment to respond to the surgery and give her information and postoperative education that she will need. Moreover, keeping this secret could threaten team cohesion and trust if they find out about it later.

Jade decided to undergo a risky surgery against her doctor’s advice in the hope of improving her quality of life. This was her autonomous choice. How should the physical therapist respond?

• Commentary
• Maude Laliberte (bio)

Laws and professional codes of ethics direct clinicians to respect their patients’ autonomy through confidentiality and informed consent unless there are compelling reasons not to do so. Health professionals are deeply committed to helping patients; above all, they want to avoid harming them. Therefore, a key component of this case is the possibility that respecting Jade’s desire to conceal information from the team may put her at direct risk if any postoperative complications are not detected, and at indirect risk if Jade’s trust in her medical team is undermined to the point where she turns away from them.

The physical therapist must determine if the possible physical risks to Jade are imminent and serious enough to go against her autonomous choice. One risk that can occur following Zamboni’s surgery is inflammation of a vein caused by a blood clot. This is a life-threatening situation (although it may not be a likely complication for Jade). But the physical therapist can teach Jade to recognize the physical signs that can alert her to this problem, giving her ample time to seek treatment. Thus, even though she may be in danger from a life-threatening risk, there may be ways to manage it besides violating her confidentiality.

The respect for autonomous choice is a crucial aspect of our democratic values. It promotes a process of exchange in the therapeutic alliance: the professional guides and informs the patient, but the patient is a partner in care planning and treatment. An important consideration in this process is Jade’s competency...