Second only to dementia, I fear being kept "alive," plugged into a machine that keeps the money meter running and prolongs my family’s misery . . . and mine. I’d be much happier spending my dying days in hospice care. Yet, this horror story seems to happen even to the most informed and knowledgeable patients and their caregivers. How can I make sure to get the "good death" I want?
Enter the Health Care Fiduciary
At the end of the New York Times article that prompted my comments yesterday, I saw a link to a blog post titled “Hiring an End-of-Life Enforcer.” It describes a new concept for the medical industry: the health fiduciary.
An article last year in The Journal of the American Geriatrics Society outlined the “health fiduciary” concept. The authors envisioned about a year of training for health fiduciaries, although people already familiar with medicine and end-of-life issues would need less. State government certification could follow.
Social workers, nurses, clergy, or paralegals might fill these new positions. They'd help clients prepare advance directives, meet with doctors to understand clients' prognoses and options. Clearly understanding what their clients want, they'd become well-informed and legally-designated advocates.
The Cost and Who Pays
The article suggests these health fiduciaries might charge about $100 an hour, less than an attorney or geriatric care manager. They might spend 20 hours initially to understand and document a client’s wishes, then consult with healthcare providers. There'd be follow-up every few years to determine if the client’s situation -- or wishes -- had changed.
The final tab might be about $3,000 over several decades, which is nothing compared to the cost of continuing useless life support for months or years, simply because no one is empowered to say: “Enough!”
Who would pay the fiduciaries? The article's authors suggest that Medicare, Medicaid, and private insurers might finance an independent agency to pay fiduciaries' fees and regulate their practice. Some clients (I'm raising my hand) would gladly cover some or all of the cost. The money saved by NOT ordering unwanted and ineffective operations, procedures, and treatments boggles the mind.
Count Me In!
Although the concept grew out of concern for people without family or friends to serve as end-of-life decision-makers, hiring a fiduciary might be a desirable option for others.
Despite campaigns encouraging us to discuss preferences and create advance directives, most people still don’t. These are painful discussions for family members. It might be easier talking with the hired help.
I’ve had conversations often with family, friends, and doctors. They know my conviction that quality of life trumps quantity, and that I don’t want unpleasant, difficult, costly, aggressive treatment to keep me alive. Still, I'd choose the healthcare fiduciary option, if it were available. Why burden my family with a pull-the-plug decision?
I'd better sign off before I get angry again about our inability to improve our dismal healthcare system. Where's my blood pressure log?