Claire M. Bastien, OpEd editor 

Published as an editorial in the Brunswick Times Record, March 28, 2001

Had there been a brutal murder at State Street Church in Portland last Friday morning, the news media would have been tripping over one another to get videotape and sound bites at the scene of the crime. When it is untimely, violent or celebrity, death leads the news.

But a rare public appearance by an internationally known expert on the natural phenomenon of death and dying – who gained renown for her ground-breaking efforts to raise awareness of the needs of terminally ill children and adults and who has been awarded more than 25 honorary doctorates from major universities and received the Modern Samaritan Award and Ideal Citizen Award – garnered very little attention.

This is how society generally deals with death and dying – as a news event that happens to someone else rather than an integral part of our own life's journey.

However, Dr. Elisabeth Kubler-Ross's 1969 book, "On Death and Dying, What the dying have to teach doctors, nurses, clergy and their own families," began a dialogue on the topic that has gradually changed and continues to influence how we understand and approach and learn from the dying.

She "simply" presented "an account of a new and challenging opportunity to refocus on the patient as a human being, to include him in dialogues, to learn from him the strengths and weaknesses of our hospital management of the patient. We have asked him to be our teacher so that we may learn more about the final stages of life with all its anxieties, fears and hopes," she wrote.

By telling the patients' stories, the psychiatrist hoped to encourage others not to shy away from the dying but to discover that tending them in their final hours could be a "mutually gratifying experience."

Many other books followed, translated into more than 30 languages. Her prophetic vision has inspired countless hospice programs the world over, like the Jason Program that sponsored her Portland appearance as part of the second annual New England Conference on Pediatric Hospice.

The Jason Program is a statewide initiative that creates a community of care for critically ill and dying children. It works to form local support networks to provide medical, emotional, spiritual and practical support for families and others coping with a child's life-limiting illness. Their work is unique in Maine. Jason Program executive director Kate Eastman, Psy.D., said Kubler-Ross has expressed interest in it as a potential model for pediatric hospice nationwide.

Here in the Brunswick area, we are rich in hospice services. Providing medically supervised professionals is CHANS Hospice, available with physician-referral and an estimated six-month prognosis, in your home or at many inpatient/residential locations. Payment is covered by Medicare, other insurance or on a sliding scale.

Hospice Volunteers in Mid Coast Maine provides non-medical support – such as companionship, respite care and transportation – offered by trained volunteers to anyone with a life-limiting illness or condition, without physician-referral, at no cost, anywhere.

Hospice Volunteers also offered grief support meetings for adults, meetings for grieving parents as well as Transitions, which is for children, teens and families.

CHANS Hospice Care and Hospice Volunteers services are available together or separately.

Kubler-Ross was honored with the Spirit of Hope Award on Friday. Knowing her love of butterflies, Dr. Eastman chose a glass hexagon encasing a number of beautifully preserved butterflies.

Kubler-Ross suffered a stroke six years ago and is now confined to a wheelchair. She said visiting Maine was her last "big trip" with one exception: She hopes to return to Switzerland to surprise her two sisters for their 75th birthday – they are triplets.

After that? "Pray I can go soon," she told the gathering of admirers. "Six years is six years too much and I don't like it anymore. I'm ready to take off so I can become a butterfly."

And she spoke of hope. "We have to get through to people that no one can live without hope. At the end it's a different quality, when the spiritual opens up."

She tells the story of a black cleaning woman who was concerned about going to heaven. Kubler-Ross told her that God does not discriminate; a cleaning lady and the director of a prestigious hospital were the same in his eyes. She asked the woman what she loved most to do and was told that it was gardening. "God is waiting for you in his garden," Kubler-Ross told her patient, who became and remained very peaceful.

"If you have hope with expectations, you will always be disappointed and will need to shrink at the end of life. I don't need to shrink," she laughed. "We hope for life, for treatment, for cure. If that does not happen, then it changes to something much better. I hope God will accept me into his garden."

The Jason Program: P.O. Box 336, Cumberland, ME 04021; phone 207-829-3537; 

Web Site: www.jasonprogram.org  E-mail: programdirector@jasonprogram.org

Hospice Volunteers of Mid Coast Maine: 45 Baribeau Drive, Brunswick, ME 04011;

phone - 207-729-3602; E-mail: hospvols@hospicevolunteers.org

CHANS Hospice Care: 50 Baribeau Drive, Brunswick; phone 207-729-6782.