“There’s nothing more we can do.” For too long, for too many, medical professionals have used these words when they believe they cannot cure their patients. Facing, as each of us must, the nearness of death, terminally ill patients too often speak of abandonment by their doctors. Trained to cure, most doctors remain untrained in caring for those they cannot cure. For decades, when patients sought support and information and found their caregivers uncomfortable with their quest, Compassion & Choices has stepped into the breach.
It is unacceptable to abandon dying patients to their agony. Compassion & Choices’ End-of-Life Consultation Service is, thousands of times each year, the non-judgmental friend who listens, gives counsel and information, and never abandons patients or their families. In my experience at the bedside, I learned that merely having a conversation with someone about anticipatory suffering, how that might be managed or might be escaped, often transforms their attitude toward life and their remaining time in the material world. Time and time again, we see spirits lifted. People reengage with life. The family calls us and says, “You won’t believe the change in Dad. He slept through the night. He ate breakfast. He told a joke. For whatever time is left, we have Dad back because Dad feels like a person again. He feels as though he has regained his ability to chart his own course.”
But as I have said our mission is not only to provide service to the few we can reach directly. We seek to transform the practice of medicine to insure a future where provider do not abandon their patients.
Now, thirty years after one of predecessor organizations was founded, we are beginning to see signs of that transformation. Today, five states have substantial legal protections for patients facing the end of life.
Two years ago, Governor Arnold Schwarzenegger signed the California Right-to-Know Act. We championed this law to address a major concern for terminally ill patients and their families, who often face the most important decision of their lives — how to live their final days — without understanding their legal rights and medical options. When a patient diagnosed with a terminal illness asks a physician, “What are my choices?” the Right to Know Act instructs the doctor to answer the question. Knowledge empowers patients and gives them comfort.
Last month, New York followed with “Right to Know” legislation, even stronger than the law in California, on which it was modelled. Unlike in California, the New York Palliative Care Information Act places responsibility to start the conversation on the doctor or other health care provider. This is a huge victory for patient-centered care, and will protect patients who are reluctant to pose difficult questions to their doctors. Beyond New York’s own large population, the medical schools and hospitals of New York are also the training ground for much of the nation’s doctors.
Washington and Oregon.
The citizens of these states passed initiatives that made physician aid in dying an accepted, legal part of end-of-life care. The question so many want to ask when they learn they are terminally ill is, “If it gets too hard for me to bear, is there something I can do to escape?” In both these states, terminally ill, mentally competent adults know they can ask their doctor for a prescription for medication they can, if they choose, ingest to achieve a peaceful death. Hospice workers in Oregon testify after twelve years’ experience with the Death with Dignity law, while few actually consume life-ending medication, the quality of conversations between physicians, patients and families has greatly improved. Under the law, Oregon has continued to be exemplary in its access to hospice.
On December 31st, 2009, the Montana Supreme Court ruled terminally ill Montanans have the right to choose aid in dying under state law. Compassion & Choices brought this case, continues to fight against lawmakers who would overturn it and is working to make sure every Montana doctor, nurse, social worker and citizen understands this newly-affirmed choice.
Five states, as diverse as they are far-flung, have taken steps to ensure their people will not feel abandoned and disempowered at the end of life. Five states where patients receive the power of information, choice and autonomy. Medicine is changing, as these laws give dying patients the ability to steer their own course. These five states provide a far better chance for “Dad to feel like a person again,” and for whatever time they have together, the family has Dad back.