We Need to Confront Fears About Life's End

By Rosalynn Carter

USA Today

The Jack Kevorkian controversy, regardless of how we might feel about physician-assisted suicide, has put in the public eye, front and center, people's very real fears about dying: fears that the medical system will not respond to their pain and suffering, fears that no one will listen to their needs and anxieties, fears of being a burden for their loved ones, fears of being stripped of their dignity.

It doesn't have to be this way. I know from my own experience as a caregiver for my grandfather and now for my mother that life's twilight offers enormous opportunity for fulfillment and even growth. I am convinced that much can -- and should -- be done, short of assisted suicide, to improve care and caring at the end of life.

Kevorkian was found guilty Friday of second-degree murder. And I believe that the debate played out at his trial begged this important question: What can we as individuals and as a society do to ensure that our final days retain the dignity and comfort we all seek?

Answering this question necessarily moves away from the pros and cons of assisted suicide and instead focuses on the roles and responsibilities of families, clergy, doctors, nurses, hospitals, nursing homes, insurers and educators. Millions of patients and their families have found solace and peace when they have been in charge of decisions about care and treatment.

Patients want assurance that they will be comfortable and comforted. They want their spiritual needs addressed, to be surrounded by people who love them and are concerned about them. They want to know that their care does not place an intolerable burden on their families. Perhaps most of all, they do not want to die in pain.

These basic wishes are not pipe dreams. They are being realized in families all across our country, in hospice settings where "palliative care" -- care that provides support and comfort -- is emphasized over last-ditch, high-tech solutions that too often, against patient and family desires, leave people in pain, isolated and attached to machines.

Final-days alternatives that offer dignity

Indeed, hopeful signs can be found beyond individual families. Three examples:

* In Florida, a former associate of Mother Teresa is pioneering a very humane, nonlegalistic living will called Five Wishes that clearly is touching a nerve across the country. It goes beyond traditional medical and legal issues by asking questions such as: Do you wish to have your favorite music played until the time of your death? Do you wish to express forgiveness toward your family members and seek their forgiveness as well? Not surprisingly, more than 200,000 copies of Five Wishes have been requested since it became available last October (www.agingwithdignity.org).

* New educational programs are being set up in medical schools and hospitals to train medical faculty, students, residents and doctors in caring for dying people -- a subject that is understandably alien to those focused on saving lives, not on helping people die more peacefully. Most medical textbooks today barely mention the subject. Recent research found that among the 50 leading medical textbooks, many had no coverage at all of some of the topics that end-of-life experts consider essential.

* Recognizing that pain control needs to be improved, the entire Veterans Administration hospital system recently instructed its physicians and nurses to record pain as the "fifth vital sign" -- no less important than temperature or blood pressure.

As death nears, we all have same desires

People in my hometown of Plains, Ga., are no different from their counterparts in Chicago or Juneau, Alaska. We all want the same things. We want to trust that those who care for us are listening to us. We want to believe that doctors are doing all they can to relieve pain and other symptoms. We want to assume that care of our bodies leaves room for care of our spirits. And when we leave this life, we want to be surrounded by the love and comfort of our families and friends.

There is room for improvement on all these fronts. If Americans cannot see a better way, assisted suicide will continue to be a topic of public debate. Instead, we should be pointing to and building on the progress we are making in palliative care, so that at the end of life, we can have choices that are far more attractive than assisted suicide.