Interview with William Lamers, MD
William Lamers, MD, is one of the first physicians to develop a hospice program in the United States; he also helped establish the first program to train people to develop hospices. He served as the Chair of the Standards and Accreditation Committee of the National Hospice Organization. He developed the curriculum for Peer Educators and conducted the "Train the Trainer" sessions for HFA's Hospice Medicaid Education Project.
Q: You began your medical career as a psychiatrist, but have been involved in hospice in the US since its inception. Tell us what drew you from psychiatry into hospice and end-of-life care.
A: Much of my interest in end-of-life care came directly from what I observed in my psychiatric practice in the early 1970's. I would estimate that 30-40% of the patients I saw were dealing with unresolved bereavement issues, even if they were not aware of them or had not come to me to discuss them. I started to think, "Why am I picking up the pieces for these patients, sometimes 20 years after the fact? Why has no one been able to help them confront these grief issues sooner?"
Around the same time, a number of other factors impacted my life and my profession. Within one year, three men I knew developed cancer and asked for my help. One day I saw my friend Ed at a meeting; he seemed the picture of health. The next day he called me from a hospital, where he had been sent after his doctor diagosed him with inoperable cancer. He called me because he understood his prognosis and wanted to leave the hospital, but the doctor said no, because he wouldn't make housecalls. As Ed said to me, "I want to go home. I'm not sick; I'm only dying." I called Ed's doctor and asked if I could visit him each day at home and report back; the doctor said okay, and we took care of Ed at home until he died. Through experiences like this, I could see that the health care system was failing people who were facing terminal illness, and I wanted to help. Through these experiences, I began training other professionals and helped to found Hospice of Marin around 1974, the first Medicare-certified hospice in the country.
Q. What changes have you seen in hospice and end-of-life care?
A. A major change has been in the area of pain control. I began doing research on opioids in medical school during the 1950's. I was fascinated with the connection between opiods and addiction, and then began to see how fear of addiction influenced pain management. This has been a major focus in my own professional life-I've taught State and Federal Narcotics agents, and have testified before Congressional committes on the subject.
Q. What about changes in the professional community, especially among physicians?
A. Physicians are becoming much more aware of the appropriate use of opiods and how they relate to pain management. I am part of the California Attorney General's task force on pain management. A new law requires that each physician in California must have twelve hours of training in pain management every time his/her license is up for renewal. This number is much greater than most states; I hope that California will serve as a leader in this field.
I'm also pleased to see that medical students are generally getting better training in these areas than when I was in medical school. I teach at the Keck Medical School at the University of Southern California on how to communicate with dying patients, and I remember one student who sat quietly through the class, and then didn't leave afterwards. When I spoke to her, she told me that she was seriously considering changing her specialty (which was cardiology) because she couldn't imagine ever being able to have these discussions with her patients. To have a medical student face the serious nature of the doctor-patient relationship was a very exciting thing to see.
Q. Hospice utilization has grown steadily since its inception; some of this must be due in part to consumers becoming more aware of the hospice option, and demanding better end-of-life care. To what do you contribute these changes among consumer attitudes towards death and dying?
A. A significant factor is that our population is aging, so there is an increased need for better health care at the end of life. I'm delighted that more people are talking about these issues, and it seems to come at least in part from a willingness to face some of the fears about dying: fear of losing control, and anxiety about decision-making, concerns about pain and symptom management, fear of becoming a burden to loved ones. These fears have always existed, I believe-they are now just being brought into the open. And efforts such as those sponsored by the Robert Wood Johnson Foundation, especially The Last Acts Campaign, have also helped significantly. For instance, the Last Acts Writers Project has worked to see that issues about death and dying are dealt with on television shows, in front of millions of viewers.
One point I'd like to make about the growth of hospice use.While the numbers have grown over time, I think the statistics belie one of the most exciting facts about hospice. The penetration is much wider than the number of patients served each year [700,000 patients were admitted to hospice care in 2000, according to NHPCO] because the bereavement support reaches an untold number of family and friends related to each patient.
Q. What do you think has been the impact of the Internet on end-of-life decision-making?
A. I think it has been primarily a positive one. I've participated on "chats" with a number of Internet health sites, such as WebMD, and have been continually amazed at the questions people ask. Consumers today are much better equipped with information. I like to call this a time of "get informed or get out"-with all of the information available, there's really no reason to say to your doctor, "you just do whatever you think is best." I believe we're leaving the era of what has been called "benevolent paternalism." There's nothing like an informed patient to keep a doctor on his or her toes.
Q. What advice do you have for consumers who are using the Internet to search for medical information?
A. I often like to quote the poet who said, "A little learning is a dangerous thing." People must be dedicated to following through with a search and getting as much information as they can; not just stopping at one Website or one article. Health care professionals must be prepared to answer any questions that patients bring to them, and to present them with other information, either verbally or in writing.
One Website that I find extremely helpful is the National Library of Medicine; the Library of Congress also has an excellent resource section. In addition to the Internet, I'd like to remind everyone that their local Medical School Library can be an excellent resource for tracking down articles and information.
Q. One of your roles as HFA's Medical Consultant is to assist in answering questions that we receive through our Website. Can you identify any trends or frequently-asked-questions that you have seen?
A. Frankly, no. Each person's situation is unique and different; that's what makes this work so rewarding and challenging. When I receive an e-mail from someone asking about an end-of-life situation, even two or three small details can help me immensely in offering advice. We try to help people learn how to communicate with their doctors, so they are better able to clarify their questions and address their specific concerns.
Q. What types of questions do you answer from the HFA Website?
A. The types of questions we receive cover a wide range of topics, from both professionals and laypeople. We receive many questions about the physical changes that accompany the dying process, as well as questions about treatment options. Some questions touch on complex ethical and even legal issues. And many of them are about bereavement-how to communicate with children about death, how to find support in one's own community. Many of these correspondences have led to e-mail relationships that have continued for months, which I think attests to the need for, and power of, ongoing grief support.
We're living in the age of consumerism, and websites with interactive features built in, like HFA's, can really make a difference in providing information and help to those facing difficult situations.
We invite you to share your story about your journey through illness, death, and grief.
Editor's Note: Listed below are links to some of the resources mentioned above.
Hospice of Marin (now Hospice by the Bay)
The Last Acts Campaign [Note: this project has ended]