October 30, 2013

Could I Hire an End-of-Life Healthcare Enforcer?

Yesterday, I discussed a sad topic: how sick old people are subjected to endless, expensive, and useless medical procedures, even after they have specified in writing that they want no such thing. The documents they sign make it clear they want a peaceful, tranquil end to their days.

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.

The intriguing idea addresses the dilemma faced by the “unbefriended elderly,” who don’t have family or friends to make medical decisions for them if they become incapacitated. That lonely population is growing, as we live longer, have fewer children, and see families dispersed geographically like never before. A 2006 study reported that 16% of people in intensive care units had no designated decision-maker and no identifiable family who could fill that role.

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?

It's a great idea, but I don’t see a national program in my crystal ball. I’ve abandoned hope for any major new healthcare legislation from our pathetic do-nothing Congress. Maybe a few states will give it a try, or a private foundation might fund a pilot project.

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?

1 comment:

Anonymous said...

I will be 74 on Sunday and have had multiple sclerosis since age 35 and started showing symptoms of PD in 2009. DNA testing showed that I had a LRRK2 mutation from both parents, as did my brother, who had already been diagnoded with PD a year or so before, and a DatScan disclosed a dopamine deficit on the left side of my brain even before I developed a tremor in my right hand.

MS was not much of a problem, but my quality of life deteriorated rapidly when I began having postural problems, losing my balance and falling and particularly struggling go get up from a seated position and was unable to get in and out of bed safely. I ended up sleeping on my power recliner for more than a year and could barely get to the bathroom with my walker. Since losing my balance while trying to sit on my reciner and falling on my knees, causing injuries to my knees, feet and ankles, I have been confined to a hospital bed in my family room and completely dependent on a health aide with whom I have difficulting communicating.

I feel like a helpless overturned beetle! And since assisted death is not legal in my state for ANY reason, and I am otherwise healthy I don't see any way out of this dilemma. Since I am not terminal and have no cognitive impairment I don't see how having an advance directive would help me. And I have no family or friends capable of making decisions for me. If I were to write a memoir, I would probably title it "Condemed to Life." Yes, I enjoy some quality of life despite my limitations, but it is not enough to want to continue living indefinitely.