Advanced dementia is a terminal illness needing palliative care. Unfortunately, there is a great divide between this statement of the world as it should be, and the current reality of the world as it is.  Rates of pain and shortness of breath are high for patients with advance dementia.  Patients with advanced dementia often reside in nursing homes, and few nursing homes offer specialized palliative care services.

And, as we can see from an article in this month’s Journal of the American Geriatrics Society, communication about prognosis and goals of care is still lacking.

In this study, Elizabeth Mann and colleagues asked health care proxies (generally family caregivers) of nursing home residents with advanced dementia a series of open-ended questions about do-not-hospitalize orders.  Hospitalizing patients with advanced dementia is often (though not always) more  harmful, leading to potentially burdensome and painful interventions (feeding tube insertion, needle sticks, restraints). All decisions to hospitalize must be made in the context of the patient’s goals and the risks and benefits of hospitalization, and alternative, namely, ongoing treatment in the nursing home.

A do-not-hospitalize order is appropriate for a patient whose goals are focused on comfort and maximizing quality of life without returning to the hospital.  The health care proxy for every nursing home resident with advanced dementia should have a discussion about the goals of hte patient, the patients prognosis, and treatment options.

Dr. Mann and colleagues interviewed 16 health care proxies.  They found:

• 10 nursing home residents had a do-not-hospitalize order.  None were on hospice.
• Many did not understand what a do-not-hospitalize order meant.  Three thought they had placed a do-not-hospitalize order when they had not.
• Many were not aware that their loved ones with advanced dementia would inexorably decline.
• “Right now she’s not on physical therapy, which they took her off … She’s not walking … She used to walk.  So I would like to get her walking again.”

There was also some justifiable concern that a do-not-hospitalize order would mean do-not-treat.  Some people were concerned that the order may be too limiting — that there would be some situations where hospitalization would be appropriate, like for hip-fracture:

I could not imagine my mother  falling and breaking her hip and not going to the hospital … Because I think that would be very painful for her.  And [it] would be cruel.  And someone could say well what’s the difference between having pneumonia and not going to the hospital and breaking an arm and not going to the hospital.  And I don’t know that I can answer that except in my mind there is a difference …

We wrote about this exact scenario in a piece for JAMA Internal Medicine recently — an elderly women with dementia falls and breaks her hip, her advance directive states do-not-hospitalize, but her doctor and surrogate feel hospitalization and surgery give her the best chance of recovery of function and quality of life.

There are two issues here.  The first is the need for doctors to ascertain and document the degree of flexibility or leeway that patients give proxies for situations like this.  For example, “I don’t want to be hospitalized for any reason.  Period.  If I break my hip, just keep me  comfortable in the nursing home.”  Or, “Let my husband decide.  No one can predict for sure what will happen in the future.  Do I want to stay out of the hospital?  Yes, of course.  But I can’t say never.”

The second major issue is the suboptimal understanding of health care proxies of nursing home residents with advanced dementia about prognosis and risks and benefits of hospitalization.  In many cases, this misunderstanding results from a proxy-clinician communication failure.

Plenty of room for improvement.

Alex Smith is an assistant professor of medicine, University of California, San Francisco who blogs at GeriPal.