Photograph courtesy of MidPeninsula Pathways Hospice
Laurie Warren, R.N., on the staff of the MidPeninsula Pathways Hospice, instructs hospice client Hisako Mizota, now deceased, in the use of medical equipment.
Bill Moyers' new PBS series will explore end-of-life issues
By Rita Baum
"Little Fly,
Thy summer's play
My thoughtless hand
has brushed away.
Am not I
A fly like thee?
Or art not thou
A man like me?
For I dance
And drink and sing,
Till some blind hand
Shall brush my wing."
William Blake penned these words as part of Songs of Experience, one of the most famous collections of poetry of the 18th century. Unlike most people in our society, Blake was not afraid to ponder death's mysteries. The subject of death makes us uncomfortable--people don't die, they "pass away" or "pass on" to a better place. Woody Allen sums up the attitude of most of us, when he quips: "I'm not afraid to die, I just don't want to be there when it happens."
Dr. Elisabeth Kubler-Ross, a prolific writer and expert on the subject of death and dying, refers to Americans as a society bent on ignoring or avoiding death. Led by Kubler-Ross and others, there is now an effort to reverse these tendencies. Media coverage of death-related events is playing a major role, forcing Americans to think about end-of-life issues. A prime example is the court case of Karen Quinlan, whose parents fought to have life support removed from their brain-damaged, comatose daughter. This was one of the earliest events that focused attention on end-of-life rights and issues.
And more recently in the headlines is Dr. Jack Kevorkian's assisted suicides of terminally ill patients between 1991 and 1999. Kevorkian was sentenced to 10 to 20 years in prison for second-degree murder for his physician-assisted suicides.
Media coverage about the deaths of public figures has also focused our attention on "advance decision-making." Former president Richard Nixon prepared a living will stating his wish that at the end of his life "nature be allowed to take its course." Jacqueline Kennedy Onassis, after learning that she had terminal cancer, also executed a living will declaring her wish that her last hours be spent at home, not in a hospital.
California was one of the first states to establish a Living Will to deal with the issue of artificial life support. A new Advance Health Care Directive, Section 4701 of the California Probate Code, effective July 1, 2000, combines the old "Durable Power of Attorney for Health Care" and the "Advance Directive." This document allows a person to name another person to act as a health-care agent or surrogate in the event of becoming incapacitated. It also allows one to specify end-of-life instructions regarding withholding or withdrawal of treatment to keep one alive, wishes regarding pain relief, and the selection of a primary care physician.
End-of-Life Resources: Places to turn to help cope with end-of-life issues.
All health-care facilities that receive Medicare and Medi-Cal payments must provide patients with written information concerning their rights to accept or refuse treatment and to prepare advance directives. (The law does not require making an advance directive, but it is a good idea to have one prepared to avoid making that important decision at an inopportune time.) An advance directive gives reasonable assurance that end-of-life wishes will be carried out. It also lifts the decision-making from a family member. Failure to comply with a patient's advance directive is a violation of Medicare rules that could put a hospital at risk of losing its Medicare certification.
Perhaps the most ambitious media coverage on the subject of death will occur Sept. 10 through 13, when PBS runs a four-part series called On Our Own Terms: Moyers on Dying. In this intriguing series, journalist Bill Moyers and his wife Judith will discuss the social, legal, spiritual and physical challenges of dying. Their goal is to help us meet death on our own terms and to assess the values we hold most dear.
In Part Two of Moyers' series, he will introduce the concept of palliative care, which hospice has practiced since its beginning. Webster defines palliative as "to abate, reduce the violence, to cloak." Hospice defines it as "comfort care," a comprehensive approach to treating terminal illness that focuses on relieving suffering and caring for the physical, psychological and spiritual needs of the terminally ill patient, including dementia patients, and family.
Many patients and their families do not know that hospice care is available, or that it is covered by both Medicare and health insurance. Hospice representatives say that no patient is turned away for lack of funds. Chuck Grassley, chairman of the Senate Committee on Aging, reports that end-of-life Medicare funds are underused, and he is working to increase the knowledge and use of hospice benefits. Medicare spends $50 billion annually on beneficiaries who are in the last year of life, but only 11 percent of families use the Medicare hospice benefit.
Soon after Moyers' final show, Hospice, local hospitals and others will co-sponsor follow-up community public service programs called Continuing the Conversation. Local PBS stations KQED in San Francisco and KTEH in San Jose will air their own follow-up programs on death and dying in the Bay Area. (See sidebar for dates and details.)
Nurses, physicians and social workers all need better training in end-of-life care, pain and symptom management, and model programs for home, hospital and nursing home end-of-life care. Yet not a single physician interviewed by Moyers had been given a substantive course in end-of-life care. More than half of nursing home discharges occurs between one week and one month after admittance; as many new residents are admitted either for post-hospital extended care or to receive care for terminal illness. In spite of the large number of patients admitted for terminal illness care, nursing home personnel are generally not trained in palliative care.
Polls tell us that most people don't want their lives prolonged by artificial means, and would like to die quickly while doing something they enjoy, such as playing golf or listening to a favorite piece of music. Most dread the thought of dying in the sterile environment of the hospital intensive care unit, where family visits are limited. While most people say they want to die at home, the majority die in hospitals or nursing homes.
Moyers learned that most terminally ill people wanted relief from pain, but also wanted to "experience the experience and did not want to be too drugged up." More than 70 percent of people believe aggressive treatments at the end-of-life may do more harm than good. They agree that doctors should be better prepared to deal with the pending death of patients, stop using "medspeak," and be able to use controlled substances on the dying.
No amount of technological control can interfere with the perfect order and natural course of death. As the organs slowly and systematically shut down, the body no longer needs, accepts or can process nourishment. Energy and movement decline. If the pain present in some diseases is properly controlled then the body and spirit can quietly wait and prepare. The end of this Blake poem sums it up succinctly:
"If thought is life
And strength is breath,
And the want
Of breath is death:
Then am I
A happy fly,
If I live
Or if I die."
Los Gatan Rita Baum has a degree in gerentology and has more than 20 years experience in the field of aging.
Saratoga, California Since 1955
