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HEALTH CARE WORKER: Hi, Barbara. Just want to give you some pain medication.
SUSAN DENTZER: Nearly 2.5 million Americans will die this year, some spending their last days like this patient, who asked us to use only her first name. She has multiple myeloma, a painful cancer of the bone marrow. She’s now getting good end-of- life care through this Washington, D.C., hospice. Dr. Matthew Kestenbaum is the medical director.
DR. MATTHEW KESTENBAUM, Medical Director, Community Hospices: Hospice is simply a way of taking care of a person with a terminal illness. And we focus primarily on goals of care, and what can we do to make you live life, or live life well until you die. We also focus very closely on pain and other symptoms that might prevent you from doing what you need to do to feel fulfilled during the last phase of your life.
SUSAN DENTZER: In the world of end-of-life care, all that is known as having a “good death.” Unfortunately, a report released this week suggests that only a minority of dying Americans are likely to have one. Judith Peres headed a team that produced the report.
JUDITH PERES, Deputy Director, Last Acts: Americans have, at best, only a fair chance of finding good care at the end of life. We have too few doctors and nurses who have the training to help people die comfortably. We have too few nursing homes and hospitals that have programs that would help people die comfortably. We have too few people who are using hospice.
SUSAN DENTZER: The report, called “Means to a Better End,” was produced by Last Acts. That’s a nationwide coalition funded by the Robert Wood Johnson Foundation, and consisting of more than 1,000 health care groups, policy-makers and others seeking to improve care near the end of life. The report examined eight key indicators of that care for which state-by-state data exist, such as hospice use. It concluded that most states come up woefully short in almost every category.
JIM TOWEY, Faith-Based Initiatives, White House: Taken as a whole, this report paints a pretty bleak picture. If my children came home with a report card like this, they would be grounded. I think we all have to ask ourselves some tough questions, that in a country that has the finest medical technology on earth, we haven’t made more progress on how we care for our people at the end of life.
SUSAN DENTZER: Among the criteria used to assess end-of-life care was where deaths in the various states occurred, and whether the location matched the preferences of the dying. The results were grim. Drew Edmonson is Oklahoma’s attorney general.
DREW EDMONSON, Attorney General, Oklahoma: If you poll any audience, 70% of them will say, as to their wishes at the end of life, that they would like to die at home with their family and friends nearby and without pain. And you can flip that statistic around. These studies show that 70% of us will die in a medical facility in pain and isolated from our family and friends.
SUSAN DENTZER: Another indicator the report examined was whether people age 65 and older used a hospice in their last year of life. Hospice use is considered the “gold standard” of end-of-life care because it’s usually high quality and cost-effective. But while hospice use is growing, use among dying people 65 and older still varies widely– from just 5% in Alaska, to 42% in Arizona.
On average, people only use hospice services about 25 days, even though Medicare and many private insurance programs will pay for up to 70 days of care. Coalition members said one reason may be that health care providers are not straightforward enough with their seriously ill patients.
COLLEEN SCANLON, Senior Vice President, Catholic Health Initiatives: Too many doctors and nurses wait too long to tell a patient that he or she is dying. Too few doctors and nurses inform patients of the ways they can stay home, obtain care to ease their symptoms and spend time saying good-bye.
SUSAN DENTZER: Within hospitals in particular, end-of-life care also falls short. The report said fewer than half of hospitals have pain management programs to help sick or dying patients, and only one in seven have programs on so- called “palliative care”– specialized care for the chronically ill.
DR. JOANNE LYNN, The Washington Home: Palliative care is that growing body of knowledge in health care– not just medicine, but nursing and social work and so forth– that helps you live well despite having a very bad disease.
All of our movies, all of our stories that we share have these very nice, compact little dying periods in which people who get sick, rail at God, and then make peace and die; and to make peace and die is only a month. And now, much more commonly, people are living with a bad illness for a long time. It’s more like walking a tight rope or walking on thin ice. You don’t know when things are going to give way.
SUSAN DENTZER: The reasons for these systemic shortcomings are complicated, so Last Acts called for a broad array of changes in state and federal policies. At the top of the list is reforming Medicare, which pays most of the costs for four out of five dying Americans.
DR. JOANNE LYNN: In Medicare right now, you can get any surgery for any patient at any time in any city, and you can’t get a home health aide, you know? So if those are where the priorities are, then we have to change the payment and regulation system to match.
SUSAN DENTZER: And with the nation’s population of people 65 and older expected to double by 2030, experts say there is little time to waste.