On Their Own Terms BILL AND JUDITH MOYERS' NEW SERIES MAY BE THE LAST WORD ON THE FINAL SUBJECT. THEIR GOAL? TO SHOW US THAT DYING IN AMERICA SHOULD NOT BE AS PAINFUL AND EXPENSIVE AS IT'S BECOME. LET THEM TELL YOU WHY.
(MONEY Magazine) – We're chilled, of course, by the merest thought of death. We'd rather not talk of it; we'd prefer not to plan for it. And yet, that national culture of denial leads us into extraordinary physical, emotional and financial suffering--a fact that Bill and Judith Moyers well understand. For the past two years, they have been reporting On Our Own Terms, a six-hour series on dying in America beginning on PBS on Sept. 10, accompanied by an extensive outreach program at www.pbs.org. It's not ordinary television. Viewers will watch decent people--real people--dwindle away on-screen. They may find, though, that those stories illuminate some dark places; they can show us how to stave off the chaos of terminal illness, for instance, and what's required for good end-of-life care. In August, Bill and Judith spoke with MONEY senior editor Jon Gertner in New York City. Their remarks, in the edited conversation below, also set a good example: Before anything else, we need to start talking.
Why do a series on death and dying? And why now?
Bill Moyers: There were several currents that flowed into the decision to do it. A couple of years ago, as journalists we saw a story that needed to be talked to the surface, and it was this growing movement to improve end-of-life care. We saw the baby boomer survey that talked about how boomers were now talking about mortality instead of retirement as their first issue. We watched for years as the AIDS epidemic brought death into the open in a way that it hadn't been before. We watched the Kevorkian controversy swirl in the mainstream media, where it was presented very simplistically. And personally, we faced death in our own family.
Judith Moyers: Bill's mother was in her nineties. My mother had died already but after a long Alzheimer's illness, much of which was at our house. We had both lost our siblings early--Bill's brother was 39, my sister was 54.
BM: We like to do subjects that are both satisfying and important professionally, journalistically, but that also involve life--the life we live or people around us live. My own mother was 89 when she stopped aging and started dying. I was there, I saw it; she just physically changed. It took her three years to die. And even though I'm a relatively world-traveled man and fairly au courant about matters, I made a lot of mistakes in that period of time. I mistook the inscrutability of the doctor for authority and didn't challenge him when he didn't give my mother enough pain medication.
I knew almost nothing about hospice, which had been growing up all around us--but I had not paid any attention. And the hospice workers and volunteers who came in to look after my mother taught me so much about the experience of dying. I didn't want that experience to be lost on other people.
But we don't like to think or talk about death.
JM: It's sort of the last taboo. But once it's on the table, then I think things will change. Some of the surveys that our producers found showed that people do not even discuss dying with their doctors, and their doctors typically do not know what they would want in a terminal situation--or even in an emergency situation. [People] don't discuss it with their spouses, they don't discuss it with their clergy people.
BM: We are a nation of the future, and we don't like to think that there are limits and boundaries to that future. Well, death is the ultimate boundary and the final limit. Death draws a distinct boundary around the boundless potential of America. So there's a subconscious conflict in America in talking about this. And then we all think we're going to live forever.
What did you discover about the difference between how we'd like to die and the actual reality?
JM: Well, you know, we can't fool ourselves into thinking that death is easy or pretty. It probably isn't going to be. But you should be able to make the choices up to the very end if at all possible. As it is now, you have to answer the questions: Whom do you want to make the choice for you? Do you want your doctor to make these choices? Do you want the state to make these choices? Do you want the insurance company to make this choice for you? I think almost any person would say, "I want to decide, and if I'm incapacitated, I'd like to be able to say whom I want to give my proxy to." And yet very few of us have made those plans and taken that action. And that's another result we hope for here--that people will make known through all the legal documents that are available in different states, in different settings, what they actually want. Get those papers signed, talk to the people who are involved, like the doctor, the family.
BM: When I was interviewing around the country for the series, I asked people to imagine their death. Most people said they imagined dying at home, surrounded by people who loved them and whom they loved, peacefully, free of pain. But 80% of the people in this country will die in either a hospital or a nursing home or some other institution outside of home. And far too many will die in unnecessary pain. Most people don't know they can ask for better pain management. And doctors on the whole don't know how to provide better pain management. Doctors are trained to cure, not to comfort, and that's an old habit that sticks with even the best doctors.
Some of the people you spent time with--Bill Bartholome and Kitty Rayl, for instance--had made a plan. Did it make a difference?
BM: There are exceptions, but as a rule the people who prepared for death died more easily and more peacefully. They had come to terms with it. The particular trivial necessities of preparing for it helped them to see how concrete and real it was. And they were able then to approach their death more maturely and more easily. Now, whether that's Bill Bartholome or Kitty Rayl, it wasn't easy for either of them at the end, but it was easier knowing that they had talked about it.
None of your readers would think of taking a trip that they hadn't prepared for right down to the last detail. If I'm going to go to Greece today, I'm going to pack appropriately; I'm going to take a trip that's really well planned and well designed. Something may happen on that trip, but the better prepared I am, the more I can deal with unexpected contingencies. And yet, here is the most certain of all trips, the most difficult of all trips, and most people never think about planning for it the way they plan a trip to Europe or Yellowstone Park or Hawaii. And therefore when things happen they didn't expect--like a financial crisis, a medical emergency, the failure of a friend or a kin to come to aid, a crisis in the night, existential panic--they're not prepared for it. And I think that's an apt analogy. You cannot go gently into the night unless you plan for it.
JM: Right. In the program Dr. Joanne Lynn down in Washington says, "I don't necessarily advocate that we need to put more money into Medicare. We simply need to reallocate the money that's there so that it's possible for families to take care of their loved ones or friends to take care of them in a home setting." We as a culture [need to] support that in the same way that we support people being sent to ICU. It seems that we're willing to pay--both through our health-care system that we taxpayers support and through all kinds of insurance schemes--for high-tech medicine, which is very expensive. And yet we are not convinced that it's cost-effective to cover the far less expensive home care, the sort of comfort care, the palliative care and so on.
After two years of working on this series, is there any clear answer to whether we can approach death on our own terms?
BM: There is no way to guarantee a good death. I'm not even sure death is good. It can be a release, it can be an escape, we can make of it what necessity dictates. But we can have a better death if we plan for it. And by that I mean [if] we address the financial, physical and existential needs that we all face at death. Financially, that we not bankrupt our families and burden our families. Physically, that we have pain management, that we take advantage of the pain management that is available. And existentially, that we give it meaning, that we are able to die with as few regrets as possible, and with as few misgivings as possible.
Somebody says, and I quoted them in a speech to the AARP: "I just want to be able to say thank you, forgive me, I love you and good-bye." You could plan for that. Because the process of death can become a tyrant who exercises sovereignty over your every emotion and physical sensation. But if you have a chance to go through that process of saying thank you to the people who have served you, and forgive me to the people you've wronged, and I love you to the people who need to hear that, and good-bye to those you care about, it helps. And you can take steps, even though there's no way to assure that what happens at the end of death won't rob you of the last dignity that you seek.