While Advance Directives are supported by state laws, there is still no clear process to allow an individual’s wishes to be known and ensure that care is tied to those documents. A study found that nearly a third of terminally ill participants did not want cardiopulmonary resuscitation, but less than half of their physicians knew of their preference.
Even when patients had written advance directives, their instructions had been discussed with a physician in only 42 percent of the cases.
A key part of the problem is our society’s denial of death and dying, and of being in a circumstance in which we are unable to make our own decisions and speak for ourselves.
“We don’t really acknowledge the waning days of life like we do with a birth,” says Judith Peres, MSW, a policy consultant in palliative care and long-term services. “Denial about death does a disservice of not dealing with life-review and life closure issues that some people would choose to do if they were thinking about dying as part of this last phase.”
Despite a strong preference for quality of life at the end of life, many Americans worry about potential conflicts between palliative care and doing whatever it takes to extend a patient’s life, a poll found. Almost half — 47 percent — of respondents said they worry that emphasizing palliative and end-of-life care options could interfere with doing whatever it takes to help patients extend their lives as long as possible. One way around end-of-life denial has been to discuss palliative care (which may or may not involve end-of-life care) much earlier.
The majority of Medicare beneficiaries of all racial and ethnic groups say that in the event of a terminal illness with less than a year to live, they would want to die at home and would not want to receive life-prolonging drugs with uncomfortable side effects or mechanical ventilation.
However, researcher Amber Barnato, MD, MPH, and colleagues have reported differences in the distribution of preferences for end-of-life medical treatment by race/ethnicity.
For example, compared to Caucasians, African-Americans are more likely to die in the hospital and to use intensive care and life-sustaining treatments, according to research.
African-Americans also incur higher medical care costs in their last 12 months than Caucasians. While some of these differences are due to regions with higher end-of-life care treatment costs, some differences may be due to minorities’ lower usage of hospice services and Advance Care Planning documents.
Reprinted courtesy of the Centers for Disease Control
This article originally appeared in Everyday Compassion magazine. To browse full issues of the magazine, click here.