TALLAHASSEE, Fla. -- Last week brought sad news of the death of Elizabeth Edwards. Her cancer had spread to the point that aggressive treatments would no longer be beneficial. By all accounts, Mrs. Edwards spent the last days of her life surrounded by the people she loved, receiving excellent hospice care to maintain her comfort and making the most of each day. Sadly, most of us, and our loved ones, do not have this opportunity.
The majority of Americans spend their last days of life in hospital intensive care units or nursing homes, sometimes hooked up to tubes and machines they would not want. Often this happens simply because so many of us have not talked about what we would want - or not want - in this situation.
A large and growing body of research shows that when people are sick and near the end of life, they want what Elizabeth Edwards got: to be at home, surrounded by loved ones and free from pain. They want to express matters of the heart like love and forgiveness. They want someone to pray for them or to hold their hand. Her "good death" ought not be the exception.
For the past three decades we have heard more about the concept of living wills and advance directives, but few people (about 20-30 percent) say they have filled one out. Maybe it's because these documents created for the legal and medical realm mostly deal with legal and medical issues related to life support, ventilators and feeding tubes. Perhaps all these years we've been asking the wrong questions.
There is a better option. Rather than asking families to talk about care at the end of life in the language of doctors and lawyers, family conversations should instead focus on what is meaningful to them and describe it using their own words. For many of us that will include discussion of family relationships, spirituality, comfort and dignity. To do anything else seems to miss the reality of what families experience surrounding the death of a loved one.
Of course it is also important for every adult to name a person they trust to be their health care agent - a person to speak on their behalf if they are not able, and to give some instructions about the types of medical treatments they want and do not want. But we make a mistake if we leave it there. Also think about what you would want people to know, where you would like to be cared for, the people you would like at your side and how you would like to be remembered.
A woman who lived much of her remarkable life with grace in the public spotlight has a lesson for us all. In her final public statement, Mrs. Edwards wrote that she had been sustained throughout her life by three saving graces - "my family, my friends, and a faith in the power of resilience and hope." What is important to you? Especially during this holiday season when families are together, talk with your loved ones about what good end-of-life care means and document those decisions. Don't leave it to chance.
