Remarks as Honorary Chair of the Last Acts - Feb. 13, 1997

Thank you, Dr. Schroeder. As many of you may know, I have a long-standing interest in the subject of caregiving, an interest that is deeply personal and goes far beyond intellectual curiosity. Caregiving has been a familiar part of my life since I was 12 years old when I helped my mother take care of my very sick father. Eleven months after he died, my grandmother died suddenly and my grandfather was left alone. My family hardly had a chance to come up for air when we realized that we had no choice--we had to find the strength to help my grandfather.

Over time, I became aware of the importance of caregiving and tried to learn as much as I could so that I could share some of the best ideas with my family and, through my book, Helping Yourself Help Others, with all Americans who want to know how they can help others most in need.

After all, caregiving is a universal subject. One of my colleagues once said, "There are only four kinds of people in this world":

• Those who have been caregivers;
• Those who currently are caregivers.
• Those who will be caregivers; and
• Those who will need caregivers.

That seems right to me.

Which brings us to LAST ACTS. Caregiving at any point, for any purpose, is a wonderful thing. But there is no time in life that it can be more precious than at the end of life--when caregiving is particularly important. And although there are millions of Americans who, every day, care for their loved ones, I am sorry to say that their care isn't enough to prevent many people from dying in pain and alone.

We know from the SUPPORT studies that the situation is more grim than we had imagined. Patients' desires only sometimes influence the care they actually receive. Most Americans experience pain, breathlessness, or confusion in their waning days. And beyond the studies, we all know that the subject of death-- particularly our own--is pretty much taboo in our society.

I agreed to be the Honorary Chair of LAST ACTS, because I stand firmly behind the coalition's goal of beginning a dialogue in this country about how to improve care at the end of life. I am very impressed with the breadth of the group, starting with the Robert Wood Johnson Foundation's commitment and involving not only the medical community, but the clergy, consumer groups, hospice organizations, and voluntary organizations like the Alzheimer's Association and the American Cancer Society.

I also am impressed with the vision of LAST ACTS -- to push for specific reforms that will demonstrate that change can take place, that dying can be a more fulfilling experience not only for the patient, but for the family as well. The LAST ACTS task forces will recommend how to put some good ideas into practice, ideas that will be directed toward policymakers, health care institutions, payers of care, and consumers themselves.

As Honorary Chair, I will try to help communicate what LAST ACTS is about and will encourage individuals and groups around the country to participate in this national dialogue. I want us to think very carefully about the principles that define a "good death," one that respects patients' wishes, reduces pain to the extent possible, involves caregivers throughout the process, minimizes financial burden, and encourages spiritual growth until the moment of death itself.

I will do my part by meeting from time to time with coalition members, writing on the subject, and generally lending my support to the coalition's activities.

I want to congratulate each and every one of my partners in this journey. We are undertaking a challenging and bold adventure -- one that can help bring peace and comfort to every American family. The greatest fears of sick people are about how they will live with their illnesses until they die. We need this coalition so that fewer people will die alone and in pain, with the result that more people and their loved ones can experience dying for what it ought to be-- the last act in the journey of life.

The task is enormous, but the timing is right. I can't think of a more noble undertaking than LAST ACTS, because the campaign will help people face death with the knowledge that they will be cared for on their own special and unique terms.

For me, it's a wonderful opportunity to help spread the message of caregiving in a new and potentially very powerful way.

Thank you.

Speech from http://gos.sbc.edu/c/carter.html