Dementia & advanced care directives

There’s a reason that I subscribe to the New York Times – its exceptional coverage of issues around aging ever upward.  Consider today’s thought-provoking article on preparing a dementia-specific advance directive.

I like to think that the marjority of Americans are aware of the importance of  advance directives, documents outlining how a person wants to be cared for in case  a medical situation that impairs their ability to convey their wishes.  All ages are advised to have at least a living will & assigned medical power of attorney, both duly notarized.

Until reading the NY Times article, having a dementia-specific advance directive never occurred to me.  As the title says, one day our minds may fade, but at least we can have a plan.

Just as we suddenly find ourselves at our own retirement party or facing a physical limitation of aging ever upward, olders & their families “stumble into the advanced stage of dementia before anyone identifies it and talks to them about what’s happening,”  to quote Dr. Barak Gaster, the internist at the University of Washington who came up with a 5-page dementia-specific advance directive, written after working closely with specialists in geriatrics, neurology, palliative care and psychiatry.

John & I do not have any experience from our own families with dementia, but several of our older friends have or are facing it.  Only one of them was completely fearless about her memory loss, facing each day as a new adventure in aging – a remarkably courageous woman.  The others had concerns, questions, opinions & fears of what was to come & – above all – of losing control.

Some experts feel that a standard advance directive should cover situations & questions related to dementia, but Dr. Gaster argues the usual forms offer little help when it comes to dementia – – “The standard advance directives tend to focus on things like a ‘permanent coma’ or a ‘persistent vegetative state.’  Most of the time, they apply to a person with less than six months to live.”

Less than six months to live.”  If only.  Dementia is terminal, but death can take an interminably long time.  Dementia typically intensifies slowly, over many years.
At what point is a dementia patient no longer able to direct their own care?  It’s neither predictable nor obvious.

The challenge is that a dementia-specific advance directive might be very clear on what someone wants at 70, but not as years go by & they have more experience with friends & loved ones facing dementia.  I think about Atul Gawande’s dad, also a physician, who had very clear ideas on life-saving care, only to change his mind when the theoretical became the real.

If an 85-year old decides he or she wants care that goes against the dementia-specific advance directive, do you discount his/her choice & go with what’s notarized?

Consider the courageous elder who faced each day as a new adventure in aging – one of her advantages was coming from a family that communicated with her & each other on essential issues.  They knew what she wanted & she knew her opinion was sought, respected.  When her continuous care community staff recommended she move from independent living to personal care, the family had a conference with the staff – and included their mother, who convincingly argued that the day may come when the move made sense, but not yet.

Kudos to Paula Span for her always beautifully crafted “The New Old Age” writing.  Just as I was thinking, “I’m not sure about this...,” she introduced Ellen Goodman, who founded The Conversation Project,  which I discussed in posts many moons ago.   As Ms. Goodman points out, Dr. Gaster’s document is a patient-doctor agreement – it does not involve the family – –  “We need to have families involved.  No checklist on earth is going to cover everything you encounter. Most important is the conversation with the decision-maker. That person has to understand what you value and what’s important to you.”

Dr. Rebecca Sudore, a geriatrician, palliative medicine physician & clinician investigator at the University of California, San Francisco, makes a similar point.  Dr. Sudore, who directs the Innovation Center for Action-oriented REsearch (I-CARE) in Aging & Palliative Care , developed an online guide – Prepare for Your Care – that encourages users to back up their decisions with the reasons behind them because, “At the bedside, the ‘why’ is very important.”  (Her discussion on advance care directives is a must-see video!)

To me, the bottom line is the key is something too many people do less & less – – talk.  Talk to family friends ministers – and doctors – about opinions & deeply rooted beliefs around quality of life – what is acceptable & unacceptable, which interventions make sense & which don’t.  Don’t end with the discussion –  write down the key points, get agreement & signature, so everyone’s clear there’s mutual agreement about what was said.  Share the signed document with core family members, caregivers & especially designated decision makers, including physicians.  Yeah, doctors may consider you a total pest, but shake it off.

I think about a dear friend whose family could not accept the fact that their beloved gifted brilliant mother had dementia.  She was open – eager – to talk about what was happening, yet they shut her down because of their own fears & grief.  Praise be, she found a group of supportive friends who were able to hear all she had to share, who stepped through, with her, what was happening, as it happened.  Like our courageous friend, she accepted what was happening & made out of it special moments – moments her family shut themselves out of.

The bottom line of Paula Span’s article is that there IS a need to let people know what is & isn’t wanted in the case of dementia, that they should be recorded, duly documented & shared.

As the woman interviewed in Paula’s article, who did complete Dr. Gaster’s directive,  “I felt great relief.”  It gave her a sense of control, “and that’s really important to me, to be in the driver’s seat all the way to the end.

Author: auntdeev

playfulness coach, life enthusiast & general instigator, ENTJ, cat lover

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