"Too often we enjoy the comfort of opinion, without the discomfort of thought."
—John F. Kennedy
In 1980 Elisabeth Kubler-Ross, MD, asked me to come to California to work with her. Her first book, On Death and Dying, offered insight and understanding to the medical community as well as to families of the terminally ill. Until its publication in 1969, our culture seemed to have abandoned the dying patient. Elisabeth reached out to help the terminally ill improve their quality of life in their final days. She also promoted in the U.S. the new hospice approach to healthcare for the terminally ill that had been developed in England.
The 1970s was an exciting decade as our culture shifted in how we treated terminally ill patients. It was not a morbid time, but rather, a refreshing focus on relieving suffering. Hospice excluded the use of extraordinary life-saving measures for terminally ill patients. It provided the best pain management for patients, whether they remained in their own homes or in a hospice facility.
Still, there were too many terminally ill patients suffering from pain that was not under control. It is a severe challenge for family caregivers to be with a loved one who cannot get pain relief and who begs for help to hasten death. The Hemlock Society and other worldwide Right To Die organizations were created for this very purpose: to provide education for terminally ill patients who wished to hasten death. It is not against the law to commit suicide, but it is against the law in most states to physically assist a person who wants to do so.
In 1983, after I had finished my work with Elisabeth Kubler-Ross, a medical doctor asked if I would consider staying with his patient, Mary, who had decided to take her own life. I asked for a meeting with the patient, her doctor, and her family, to make sure Mary’s children understood and supported their mother’s decision. She lived in her own home with the support of 24-hour care. Her excruciating pain was not under control, and her bones were brittle and broke easily. After celebrating her 95th birthday with her three daughters and numerous grandchildren, Mary announced to her daughters that she had decided to end her life by refusing food, medicine, and water.
Mary’s daughters were devoted to their mother and found it very hard to watch her trying to endure this long-term suffering. Each daughter sup-ported Mary in her decision to end her life but none felt she could watch Mary through the dying process. The doctor said he would not prevent Mary from hastening her death but he could not help her end her life. How unfortunate that she had to endure such pain and take her life into her own hands. And how unfortunate that her kindly doctor could not have assisted her by ending her suffering and hastening her death.
Mary died with the grace with which she had lived her life. It was a privilege for me to be helpful to Mary during her dying process. I believe at birth our spirit comes from the source I call God, and we return to that source at the time of death. There is a presence of God with us as the dying patient slips into unconsciousness and a sense of release when the spirit leaves the body as the transition is completed. Being with dying patients has been one of the most spiritual experiences I have had.
When terminally ill patients commit suicide they are accused of playing God. Can the same be said when a doctor keeps a terminally ill patient on life-support machines preventing a natural death? Or, when life support is discontinued. Who is in control of death? What constitutes a natural death?
Terminally ill patients consider taking their own lives mainly because they are afraid of long, suffering pain. Sadly, even today, there is no basic standard for pain relief from state to state. In California, inadequate pain management in terminal illness is professional misconduct and a form of elder abuse.
The medical profession is willing to discontinue artificial life support for terminally ill patients, knowing that removing life support will hasten death, and it will likewise allow terminally ill patients to withdraw from eating and drinking water. Palliative Care specialists can increase medication to control pain for terminally ill patients, knowing the patient may become unconscious and therefore unable to eat, shutting down the body’s life functions and leading to death. Yet our culture has not arrived at the point of supporting the medical profession with the intent to relieve suffering and hasten death.
Douglas Aberg wrote in an article, "Hospice, the Right to Die Movement, and the Liberty in Between":
In the field of hospice care, there is a credo that states, "Hospice neither hastens nor postpones death." We in hospice care live by this credo. The hospice philosophy believes that one need not end their life via suicide, as we in hospice have the knowledge, skill, and presence to ease the suffering caused by the end stage disease process. . . . With the use of medication and education, we are able to manage physical suffering in greater than 95 percent of the terminally ill patients that we treat. Those 5 percent will suffer despite the medical, psychosocial, and spiritual love, compassion, and support we have to give. Of those 5 percent, there are those who request to have their deaths hastened. . . . We have already determined that we may not ever be able to end their physical, emotional and/or spiritual pain. What do we do now? Do we allow them to suffer despite their plea for help? . . . It is my opinion that the greatest gift we give to those who are dying is the ability to choose."
The failure to maintain a pain-free existence for the terminally ill continues today. It is a national scandal. Compassion In Dying wants to turn this deplorable situation around through public education campaigns and legislative reform. Terminally and hopelessly ill people who do not wish to suffer have turned to organizations like the Hemlock Society, renamed End-of-Life Choices, and Compassion In Dying for education to ensure a peaceful, dignified death. If state regulations were in place requiring making palliative care pain management available to every terminally ill patient everywhere, there would be less occasion for patients to become desperate enough to take their own lives.