Honoring Wishes : Law Gives Patients Power Over Their Own Medical Treatment
I am an ardent coward when forced to confront pain. I take Novocain in the dentist’s chair, and when a doctor suggests a new procedure, test or treatment, my question is always the same: “Will it hurt?” Each time, I make my fears known. Each time, I speak up, loudly and clearly.
But what if I am unable to speak up? What if a doctor makes decisions without my participation, because I am unable to communicate? If, for example, I am fatally ill, in a coma and suffering pain, will doctors keep trying to reignite my spark of life? Or will they let me die peacefully, as I would wish?
The time has come when we as patients can offer guidelines to our doctors regarding treatment, particularly when we are very ill or incapacitated. Or we can invest loved ones with the authority to speak up for us when our bodies can no longer tolerate the assault of medical procedures.
Federal and state laws now spell out our right to exercise self-determination. These legal documents protect both the patient and the family.
Nationally, the Patient Self-Determination Act helps patients become more involved with determining health treatment. It gives health care providers a mechanism for advising patients of legal rights and options for refusing or accepting treatment if they become incapacitated. This act, which became effective Dec. 1, 1991, applies to all health care facilities receiving funds from Medicare/Medicaid programs.
Scripps Hospitals in Encinitas and La Jolla, Palomar Medical Center in Escondido and Tri-City Medical Center in Vista are among those mandated to provide us with information on this subject.
In California, “The Natural Death Act Declaration,” frequently called a “living will,” allows us to instruct doctors regarding treatment that prolongs life. It is a doctor’s legal obligation to follow the instructions; the doctor is protected by law in doing so.
In addition to this specific declaration concerning medical care, the law provides, alternatively or additionally, for the appointment of an individual to make health care decisions for the patient.
The requisite form for this is a “durable power of attorney.” Any adult relative or friend can serve as this surrogate, but it must be someone who can stand in your shoes, someone who understands your wishes and can be trusted to make an appropriate decision when you are unable to do so.
North County hospitals are working to further understanding and implementation of the new law.
Tri-City Medical Center has sponsored community education classes on the subject and is planning to sponsor more, according to Michele Luna, director of patient care review and risk management. The hospital works with volunteers as well as with employees to clarify the issue. It encourages its personnel not only to be helpful to patients in facing this matter, but also to think about it in relation to their own lives.
The hospital provides information, forms, brochures and the opportunity to discuss one’s personal situation with a staff social worker.
Palomar Medical Center is also involved in a community education program in and out of the hospital. Trained staff members take the program to residential care facilities, for example, where they offer understanding, brochures and forums.
June Orler, director of patient and family services at Palomar Medical Center, emphasizes that patients do not have to sign a declaration. The law mandates that the hospitals and health care facilities must inform patients of the right of self-determination. The ultimate decision is the patient’s.
Richard Sheridan, general counsel for Scripps Memorial Hospitals, believes it is best for individuals to discuss these matters while they are well with their personal physician. The stress of being admitted as a hospital patient can be exacerbated by having to discuss life-and-death decisions.
I am grateful for these new laws. I remember when, 35 years ago, my mother underwent exploratory surgery that revealed a painful, inoperable cancer. She closed her eyes and slipped behind the veil of a coma. We turned to her doctor in helpless confusion and he answered our unasked question: “If she were my mom, I would open the window and pray for pneumonia.” We understood his message and urged him to keep her comfortable, but no life-prolonging, painful procedures. Mother died quietly, within a few days. We did not assault her tired and helpless body with hopeless measures.
At that time, the wall of malpractice suits had not been erected. Doctors and relatives spoke to each other openly; family members could speak up for an ailing loved one, and doctors could respond without risk.
Things are different today. Discontinuing aggressive medical care, halting lifesaving procedures or stopping recommended medication can lead a family and its doctor to court, to a battle that leaves the decision-making to a judge who does not know or understand the patient.
Several years ago, an 82-year-old relative of mine entered a hospital with severe kidney problems. As a child she had suffered poliomyelitis; as an aging adult, her muscles lost their strength and there appeared to be a resurgence of the disease. She was physically helpless and mentally exhausted. At the hospital, she told the nurse and her companion, “I want no dialysis . . . no surgery; just leave me alone.”
When treatment decisions were being made, the staff prepared to put her on dialysis, despite knowing there was no hope of her recovering. Because her wishes were delivered only orally, they had no legal authority. We, the family, were furious, but without power. While we scurried in search of a legal loophole to fulfill her wishes, she died.
Her anxiety and our sense of futility would not have occurred had the present law been in existence. None of us need experience such emotions any longer. Durable power of attorney and living wills are our protection. These documents can be specific or general, and they can be altered as we grow older. If our doctor does not bring up the subject, we have a responsibility to do so.
By the time we reach our “shades of gray” years, we are not so much afraid of dying as we are afraid of losing control over our lives.
