Prognosis Disclosure in Spinal Cord Injury.

No one likes to deliver bad news, including doctors, who often have to discuss a poor prognosis with patients and their families. The subject of prognosis disclosure has been well-studied in the oncology literature [1-3], but less so in rehabilitation. For many life-limiting diagnoses, cancer and dementia, for example, prognosis disclosure is confounded by the uncertainties of disease course and response to treatment. Spinal cord injury (SCI), on the other hand, is a life-changing diagnosis with more certainty about outcomes and prognoses based on a patient’s American Spinal Injury Association Impairment Scale [4]. In theory, this should make prognosis disclosure easier, but it is not necessarily so. In all cases of disclosing a “poor” prognosis, the goal is to maintain hope, promote shared decision-making, and engender trust. It is important to pay attention to what question thepatient is asking andattend to their emotional and cognitive needs [5]. The questions “when will I walk again?” and “will I ever walk again?” are very different and require the physician to first acknowledge where the patient is in his/her understanding of diagnosis and proceed with expertise, honesty and compassion. In the face of a patient and family experiencing the emotional after effects of a trauma, this is often easier said than done. For this column, I have asked several experts to give their perspectives and reflect on their experiences of prognosis disclosure in SCI. Dr. Joyce Fichtenbaum, psychologist at Kessler Institute for Rehabilitation, and Dr. Steven Kirshblum, Director of Spinal Cord Injury Services, Kessler Institute for Rehabilitation and Professor, Rutgers New Jersey Medical School, have published on this topic and offer us some general guidelines and a case study in prognosis disclosure. Dr. Lisa Ruppert, Assistant Attending of Rehabilitation Medicine Services at Memorial Sloan Kettering Cancer Center and Assistant Professor of Rehabilitation Medicine at Weill Cornell Medical College, has dual specialization in Cancer Rehabilitation and SCI medicine, and has unique experience and insights on the difficulties of prognosis disclosure in patients with metastatic SCI. Finally, Ms. Thea Flaum, president of the Hill Foundation and founder of the FacingDisability.com website and an advocate for people with SCI, shares some personal reflections about how prognosis disclosure affected people with SCI.