Originally created as three, hour-long audio documentaries for national radio broadcast, this wonderful education resource is now available on CD. It will make a great training tool for hospice volunteers, health care professionals, and anyone else who wants to learn about key issues in end-of-life care in an entertaining, easy-to-absorb format.
The series draws from over 80 hours of tape and includes remarkable moments with people who are facing death, their families and those who are helping them along the journey. While the stories are personal, the themes are universal as we all struggle to come to terms with the passing of friends, family members, and ultimately, ourselves. It examines the barriers to good care that arise from cultural misunderstanding, from fear over the use of morphine and other drugs, and from lack of funding to pay for good programs. It provides ideas, examples and inspiration for those who are searching for a good path on the journey to death.
"Heart-to-Heart" was produced and directed by Claire Schoen, who has made it possible for us to share some segments of the series with you on Growth House Radio. You can listen to the following excerpt on pain control that helps dispel common myths that many people -- including doctors -- have about pain medications:
What people fear most about dying is being in pain. And there is good cause for this fear, because a large percentage of Americans die in terrible and unnecessary pain. Richard Buike understands this well. His cancer has wrapped itself around his nerve cells causing unrelenting pain.
It is possible for almost everyone to be pain free at the end of their lives. The most effective remedy is an array of morphine-type pain medications. But the fear of addiction, the War on Drugs, government regulation and a lack of education keep doctors from using these drugs effectively -- or at all. While Richard's days are numbered, he still has a life to live. After a career as a dispatcher for the Southern Pacific Railroad, Richard now owns a model train store. He has found a doctor who is willing to put him on a level of pain medication that would be considered phenomenally high in any other situation. And Richard continues to hang out at the store with his railroad buddies.
Others are not so fortunate. William Bergman died a terrible death, consumed by pain, while his family stood by watching helplessly. After he died, the family complained to the Medical Board which refused to act. Then they took their case to court. A stunning verdict by the jury has helped raise awareness of the need to take pain seriously for people facing death.
We expect that children will get sick from time to time. But we don't expect them to die. The very idea of a child dying is so filled with emotion and pain that we don't even want to think about it. However, children sometimes do die. And they need our help to live -- and to die -- well.
Brittney is thirteen. Cystic fibrosis threatens to take her life before she has a chance to grow up. What choices can her family and doctors make to allow her a normal adolescence? And what rights does she have to make life-and-death choices of her own? Brittney faces the hard decision of whether to go on the "list" for a lung transplant. While a new lung might give her some additional years, the operation and its aftermath pose enormous risks. Lemontay does not make his own choices. He is five, but has the mental capacity of a 6-week-old baby. Severe and multiple medical problems make each sunrise a small miracle for this child. Lemontay cannot talk, he cannot move his body by himself. He has great trouble breathing. But he is surrounded by a loving and caring family. Is this a life worth living? What does quality of life mean? And who determines when this child has been through enough?
Children living with terminal illnesses provide a unique and particularly difficult challenge for healthcare providers, families and our society as a whole. Children are not "little adults". And solutions for children living in the shadow of death cannot be simply extrapolated from adult hospice programs. End-of-life care for children must not only manage the physical symptoms of the child, but address social and psychological demands of the whole family.
As we face our own death, or that of someone close to us, what we want and what we need depends on who we are. And, in the United States -- a nation of immigrants -- our cultural background, the language we speak, the religion we practice all influence our views on dying. The medical establishment has its own ideas on what a "good death" entails that may be very different and even at odds with what a patient may want. Assumptions and stereotyping on the part of doctors and nurses can result in inadequate care and sometimes even cross the line into discrimination.
A Chinese immigrant does not want to die at home because his spirit would return, bringing bad luck to the family. A young child is used as a translator to tell her grandmother that she has uterine cancer. A Latino man relies on a faith healer rather than taking the medications provided by his Western doctor. A religious woman feels she does not have to make medical decisions because God will provide the answers. A Zuni woman does not want to talk about death at all. An African-American woman says that her doctor's decisions about what treatment she will get are based on the color of her skin.
These are the issues faced by Americans every day. Solutions are complex and often subtle. While doctors need to understand and respect the values of their patients, patients and families also need to be educated about their rights and options. Communication can be a powerful tool in bridging the gap.