ABCNEWS.com Moderated Chat

Death With Dignity
Chat With Dr. Ira Byock About Kubler-Ross and Hospice Care

Moderator at 1:59pm ET
Back when Elisabeth Kubler-Ross started the first hospice in the United States, people panicked that she was bringing a "death house" into the neighborhood. Now, hundreds of thousands of people every year choose hospice care for their dying days.
Dr. Ira Byock is past president of the American Academy of Hospice and Palliative Medicine and is currently director of the Palliative Care Service in Missoula, Montana. He's well-versed in Kubler-Ross's teachings and will take your questions about her influence on care for the dying, as well as the future of hospice care.

Ginny from [168.209.24.177] at 1:59pm ET
Have experts built on Dr. Kubler-Ross's work to discover any other "stages" of dying?

Dr. Ira Byock at 2:01pm ET
They certianly have. Kubler-Ross's work has been well-discussed. I have personally used her work a great deal in trying to elaborate a model of human development that incorporates advanced illness, dying and death within the life cycle of human beings. My work probably would not have been possible without some of the foundation laid by Kubler-Ross, as well as the work of developmentalists Piaget, Erickson, and Maslow. Building on Elisabeth's work, I've tried to talk about dying simply as another part of living.

John Ost from ny.access1.net at 2:02pm ET
Dr Byock,
How should one go about making sure if HE/She ever reaches the point of terminal illness that there wishes are respected concerning euthenasia? I also would like to know if a family member or friend assists you are they held accountable and prosecuted?

Dr. Ira Byock at 2:05pm ET
In all states euthanasia is illegal. Euthanasia refers to the termination of a person's life by another. In Oregon, under strict conditions, it is legal for physicians to presecribe a lethal dose of medication. The issue of control is one that everyone says they want, but few Americans do the basics that are required to achieve it. Nowadays, documents such as the living will and durable power of attorney for health care are widely recognized as legally valid, but they're too often not used. Most important is simply to talk with family and friends about your wishes. Without discussion, very frequently family members will choose to keep people alive and tell doctors and nurses to do whatever necessary to keep their loved ones alive. If your wishes are to allow death to come, it's important that those wishes are made known to others who will speak for you if you can't speak for yourself.

RCS from proxy.aol.com at 2:06pm ET
What do you do to help take the fear our of dying?

Dr. Ira Byock at 2:12pm ET
It is probably inevitable that people will fear death. It represents, after all, an annhilation of who we are as individuals. However, most often people fear dying or the process of dying more than they do death. And we know that reversing the isolation that we have from people who are dying tends to increase the comfort of those of us who are not yet seriously ill. Programs that break down the barriers to people with serious illness in nursing homes or hospitals and return this stage of life to a community setting reduce peoples' fears. Children who interact with elderly people in nursing homes or hospitals tend to grow up less fearful about aging, disability and death.

My own book, Dying Well, ends with a quote from Elisabeth Kubler-Ross which responds exactly to your question. Here it is:

"Children who have been exposed to these kinds of experiences -- in a safe, secure, and loving environment -- will then raise another generation of children who will, most likely, not even comprehend that we had to write books on death and dying and had to start special institutions for the dying patients; they will not understand why there was this overwhelming fear of death, which, for so long covered up the fear of living."

Cheryl from [149.79.22.217] at 2:12pm ET
Why is it that we treat our animals with more respect when they are dying or terminally ill then we do our terminally ill patients.

Dr. Ira Byock at 2:16pm ET
I don't think we do. If your question intimates that the highest respect we can have is to euthanize somebody who is ill and debilitated, I simply disagree. We euthanize sick horses, cats or dogs partly because we love them but also partly because they are not central to our lives. When it is a brother, a sister, a child or a parent who is seriously ill, we take off work, we change jobs if we have to, we move if we have to, in order too care for the people we love. That is the mark of ultimate respect.

I suggest that when you think about people who are seriously ill and utterly dependent on us, the analogy we should draw is not to sick animals but to infants in their total helplessness and even complete incontinence. Even though it is a "burden" to our lives, our schedules, our careers, we care for them because to do otherwise would seem unnatural. Why is it so different that at the end of life the person who was once an infant is now our grandmother or our father?

cori from [17.218.173.90] at 2:16pm ET
Do you foresee a growth in inpatient hospice care? Our family HMO stipulates it's only available for the "final days" ... my mother went in with that kind of prognosis, now has been hanging on for several WEEKS, and I hate feeling guilty that she's "outlived her expected stay."

Dr. Ira Byock at 2:20pm ET
Please don't feel guilty. Your mother deserves theh level of care she is receiving. The problem is that so many other people who also deserve it cannot receive this comprehensive level of care within the current health system. In-patient hospices, palliative care units, as well as residential hospice facilities and assisted living centers are all needed. Fairly dramatic changes in public and health care policy will be required to support these innovative models of caring. In the next few years, a strong consumer voice will be needed to effect changes in health care policy that allow all Americans to age in place and receive care that is not only medically competent but genuinely *caring.*

Greg from chickasaw.com at 2:20pm ET
What medications is a patient allowed to take under hospice care?

Dr. Ira Byock at 2:22pm ET
There are no medications disallowed by hospice care. If your question relates to payment, there are some disease-altering medications -- such as cancer chemotherapy -- that may not be covered by Medicare or managed care for hospice patients. Even this restriction is ultimately unnecessary and is a barrier that needs to be removed. But hospice patients still have the right to any medication that would benefit them medically. The focus of hospice is in assuring comfort and improving the quality of a person's and family's life. In the pursuit of that comfort, no medication and no intervention is excluded.