Is Death Better Than a Nursing Home?

They wanted control over their own end-of-life.

Posted Sep 15, 2011

Hospital patients have the right to refuse treatment. A doctor may want to operate, but the patient has the right to say ‘no thank you.' This is known as patient autonomy—the right to decide for yourself what you want done to you.

As I know from being on the ethics committee at Winthrop University Hospital, things sometimes get complicated. Lack of clear directives, disagreements on the part of families, different opinions on the part of specialists, and unique and unforeseen circumstances can hedge a patient's autonomy. Various interests can collide and in the face of life and death conditions, decision-making and a patient's rights become cloudy. But the principle is clear: A patient has the right to determine the course of his or her own treatment.

Patients' rights in nursing homes are even murkier, as the story of Armond and Dorothy Rudolph, who lived together in an assisted living facility, in Albuquerque, dramatizes. Years ago, they had made their wishes clear: in the case of irreversible illness, they didn't want extraordinary measures taken to keep them alive. They put this in writing and talked it over with their children, who supported their desire.

A few months ago, now in their 90s, the couple decided to stop all treatment for the various illnesses that had befallen them. They also refused all nourishment. They chose to die rather than attempt to live in the face of a life of decreased mobility due to spinal stenosis and what seemed to be, for both of them, the onset of dementia.

The assisted living facility balked. While the decision to refuse food and drink is legal, management called 911 to evict the Rudolphs who were wasting away. The facility wanted them transported to a hospital. The Rudolphs refused to go.

The administrators of the assisted living facility said that when a resident "requires alternate placement, medical attention, or a level of care beyond the facility's capabilities, we have an obligation to notify a medical provider."

A doctor from a nearby hospital was called in who interviewed the couple. "They were able to very appropriately and eloquently explain their wishes," the physician reported. "They didn't feel the need to go to a hospital. They detailed that they wanted control over their own end-of-life issues." The doctor continued, "I made a determination that our services were not needed."

Although the law appeared to be on the Rudolphs' side, as the facility needed to give 30 days' notice of discharge, the couple left the facility to avoid further conflict. They wanted to end their lives peacefully, with dignity. They rented a house and there, surrounded by family and with the care of hospice workers, they died.

A spokesperson for the National Center for Assisted Living said that this was the first case like this that he was aware of. But it won't be the last as the population ages and more people choose to meet death on their own terms. NCAL plans to meet soon with an advocacy group for end-of-life choices. Compassion and Choices is proposing a rider for assisted living contracts that states that a "facility will respect Resident's end-of-life choices and will not impede any course of treatment, or non-treatment, freely and rationally chosen by Resident."

This will make many uncomfortable, as death is still an uncomfortable topic in our society. But the reality of an aging population is upon us. The conversation can't be avoided much longer. If the Rudolphs have begun that conversation, we can thank them for that.