November is National Hospice and Palliative Care Month, and the theme of this year’s observance is “We Listen. We Care.” As I wrote in my last post, Compassion & Choices listens to those facing life’s end, and our response is guided by our principles for patient-centered care. The third key component of our mission is action. We work to make people’s aspirations for the care they receive in their final days a reality.
Physicians cannot listen to the needs and desires of their terminally ill patients without time. Writing in The New Yorker, Atul Gawande quoted palliative care specialist Dr. Susan Block on the complexity of discussing end-of-life choices with patients and family members. “‘You have to understand,’ Block told me. ‘A family meeting is a procedure, and it requires no less skill than performing an operation.’” We continue to support federal policy to provide Medicare reimbursement for doctors who spend time in consultation with their patients to discuss end-of-life preferences.
And physicians must give patients full and honest information about the pros and cons of all treatment options, both those directed at the patient’s illness and others for pain and symptom management. Compassion & Choices advocates the passage of patient-centered consultation acts (PCCA), like the laws passed in California and last year in New York. A PCCA ensures that terminally ill patients learn about all legal end-of-life care options in the state. These laws encourage patients to ask for, and doctors to provide, information about end-of-life care options.
These laws reinforce the principle of informed consent, required for most medical procedures. Informed consent is more than a patient’s signature on a consent form; it is a process of communication between a patient and physician, an ethical obligation and a legal requirement. Now, these laws specify that such a discussion can include:
• The potential risks, benefits and likely outcomes of various treatments proposed, as well as potential risks and likely outcomes of refusing these treatments;
• The patient’s right to pursue, or refuse, continued treatment targeting the illness;
• The patient’s right to refuse or terminate life-sustaining treatments (such as a ventilator, feeding tube, cardiac device or medication) and their likely outcomes;
• The patient’s right to receive comprehensive pain and symptom management, and other care options such as hospice for palliation of symptoms and for supportive care.
Compassion & Choices worked hard for passage of these laws; we continue to work to implement their application appropriately within law and medical practice. They are important tools for empowering patients to experience final days that match their values and beliefs.
This month, we renew our commitment. We will listen to dying patients. We will help them get the care they wish for. We will act to ensure they have the broadest range of choice and care, and the autonomy to decide what they want for themselves.