By Kathryn Tucker
Director of Legal Affairs for Compassion & Choices
Compassion & Choices is dedicated to improving care and expanding choice at the end-of-life. We believe that patients are able to make the best choice for their care when they are fully informed of all end of life options. We support the enactment of policies and laws that ensure comprehensive counseling regarding end of life care options, including laws referred to as “ Right to Know” laws.
Right to Know laws ensure that patients can receive information about all of their legal end-of-life options. These options generally include refusing or directing the withdrawal of life prolonging care(such as a ventilator, feeding tube, cardiac device, medication etc), voluntary stopping of eating and drinking (known as VSED), palliative care, aggressive pain and symptom management, including palliative sedation, and where its legal, aid in dying.
Two states in the US have enacted Right To Know laws: New York and California. The California law requires physicians to provide counseling if the patient requests it. The New York law requires providers to offer terminally ill patients such counseling.
The right of patients to make their own informed end-of-life decisions, and to have those decisions honored, is a basic human right. Dying patients deserve to have the broadest range of choice and care, and the autonomy to decide what they want for themselves. Unfortunately, there’s still much to do to ensure that patients have the information they need to make informed choices.
A study published in the New England Journal of Medicine shows that despite an ethical and legal consensus that patients have the right to refuse life-prolonging treatment, dying patients in US hospitals often receive unwanted care. Terminally ill patients rely on their health care providers to share timely and informative information on their care. Unfortunately, there’s often a lack of communication between health care providers and their terminally-ill patients. For example, many patients benefit from being referred to hospice earlier rather than continuing curative treatment. But nearly two-thirds of dying Californians receive hospice services for less than one month, well below the national average.
Information and counseling regarding end-of-life care options is essential for terminally ill patients and their families. It can help the patient weigh all of their options and make an informed decision that best meets their needs and is consistent with their values and beliefs.
Dying patients deserve information about all of their options. Right to Know laws facilitate this empowerment.