Worse than death?...Dependence

by Ross Albert

Every so often, you come upon a study that validates your clinical practice and approach. This was my feeling when I read the research letter “States Worse Than Death Among Hospitalized Patients With Serious Illness.” This study out of Philadelphia surveyed 180 hospitalized patients with serious illness on their views of various health states, and how severe or unacceptable they considered them. What was fascinating was that the scale used was based on death as the benchmark on their Likert scale—“worse than death, neither better nor worse than death, a little better than death, somewhat better than death, or much better than death.”

The study revealed that in this group of patients with advanced cancers, heart failure, and COPD, health states with significant dependence on machines and on care from other people were frequently deemed “Worse than death.” Greater than 60% of respondents rated bowel and bladder incontinence, bedbound state, and ventilator dependence equal to, or worse than death. For comparison, their findings showed that wheelchair bound state, constant moderate pain, and being home bound were deemed equal to, or worse than death less than 15% of the time.

How can we incorporate this study into our practice? The study and author discussion remind us that discussing goals of care in the context of simply being alive or not is insufficient. When providers continue treatments that at best would lead to a state of living that patients and families would find worse than dying, they are not practicing person-centered care. As any card-carrying palliative care provider would note, goals of care discussions must continue to focus on patient’s values and preferences, hopes and worries. This study helps to validate our approach, and continues to build the literature base in our increasingly evidence-based field.

Reference:
Rubin EB, Buehler AE, Halpern, SD. States Worse Than Death Among Hospitalized Patients With Serious Illness. JAMA Internal Medicine. Published online August 1, 2016.

Dr Albert is the chief of the division of palliative medicine at Hartford Hospital, and the medical director for the Hartford HealthCare at Home Hospice teams, in Hartford CT.

Photo Credit: "handle with care fragile do not drop" by Jenny Johnson via Flickr CC-AT-NC