In 2009, California’s Right to Know Act became law – a bill that required doctors and care providers – particularly hospice – to inform their terminally ill patients about ways to relieve any pain they might be suffering.
Later that same year, a young mother from Los Gatos in the care of Vitas Hospice, one of the state’s largest hospice providers, suffered a very painful death from cancer. Michelle Hargett-Beebee died at the age of 43, without Vitas ever telling her or her family that she did not have to suffer in pain. They never gave her a chance to have her pain relieved.
As a result, Compassion & Choices, a nonprofit that exists to help people make fair and reasonable end-of-life choices, filed suit against Vitas last week charging that Vitas broke the law:
Her final weeks were underscored by terrible and almost continuous pain. Michelle was never told about her pain-management options, despite receiving care in California, where the California Right to Know End-of-Life Options Act requires health care providers to inform terminal patients, upon request, of all their end-of-life options.
Michelle’s parents were at her side advocating strongly for optimal care and pain management. Despite their advocacy and a state law designed to help patients make informed choices, she was never told that medications were available to her that would have eased her acute pain.
The issue here is whether Vitas broke the law in not offering “palliative sedation” as an option. Here’s what C&C says about “palliative sedation”:
What is “palliative sedation”? According to The Journal of the American Medical Association (JAMA), palliative sedation is the use of sedative medications to relieve extreme suffering by making the patient unaware and unconscious (as in a deep sleep) while the disease takes its course, eventually leading to death. The sedative medication is gradually increased until the patient is comfortable and able to relax. Palliative sedation is not intended to cause death or shorten life.
In this case, it’s not actually a form of physician-assisted suicide (not that there’s anything wrong with that). And California law makes clear that this is one of the “end-of-life options” that terminally ill Californians have the right to know about from their doctors or caregivers.
Why does this matter? Californians should have the right to make their own choices about their treatment. Corporate policies should never, ever trump the ability of people to be able to relieve their own pain – or relieve that of a dying, suffering loved one.
Because the law is so new, not all Californians know about it – especially if big corporate caregivers aren’t sharing that info. Whatever the outcome of this case, more Californians ought to learn about the Right to Know Act and ensure that they take charge of the conditions and terms of their own final days.