Some thoughts on Advance Directives

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Every emancipated adult should have an Advance Directive. Once a child is emancipated, parents can no longer make medical decisions for them by default, should the offspring become incapacitated. Often we limit our conversations about Advance Directives to Elders, thinking they are more likely to become cognitively impaired. However, the age cohort often overlooked are young adults between 18 and 30 who are at risk for devastating traumatic brain injury (TBI) — due to motor vehicle accidents, recreational accidents or substance abuse.
Preceding the Patient Self Determination Act (PSDA) was the tragic, 1970’s case of Karen Ann Quinlan, which attracted sensational media attention and brought the controversy between family desires, medical opinion, ethics and law into the cultural conversation. I have no doubt that her case, and those that followed, helped propel the PSDA into being. Shortly after the Quinlans lost their appeal to have their daughter’s life sustaining treatments revoked, I found myself working in a “convalescent hospital”. There I had the unforgettable experience of caring for a high school classmate, not even 21 at the time. Shortly after graduation, while walking on a lonely road late at night, he was struck by a car. Suffering spinal cord and traumatic brain injuries, his quality of life was undeniably impaired.
I don’t think revoking heroic measures was an option in California in 1978, and this encounter, so close to heated debates about terminating life-support, left an impression on me. In recent years, I have had conversations with young adults that include thoughts about accidents and injury. They are quite clear “I don’t want to be kept alive if there is nothing left of ‘me’”. Youth are as important to include in the conversation about Advance Directives as are their Elder relatives, and for similar reasons. Loved ones can’t act on your behalf if they don’t know what you want.
We don’t like to talk about death and dying, about end of life mystery or transition. Life seems brighter if we ignore the shadow side and go merrily on our way. For us, it might be. If we’ve become incapable of making decisions for ourselves, chances are we won’t care much. Some won’t talk about death because they don’t want to upset their families or those that they love by “making them think about it”. The irony is that by trying to protect those we love by ignoring this reality, we force them into making decisions about us which they are ill-prepared to make. Some people don’t understand what Advance Directives are or how they can help.
I have watched this process when families are unprepared. It is often grueling and painful. The second-guessing about what “mom wants”, the contention between those mature enough to let go and those clinging to hope or fearing death can devastate a family that needs to support each other and prepare to grieve.
Most departments in my hospital, which serves a large retirement age population, assertively broach the topic of Advance Directives, and in my specialty clinic new patients are educated and offered a copy of our state’s Advance Directives workbook.
AD pamphlets read very similar from state to state. They are dry and medically oriented. Recently, I was introduced to a stellar revision of the standard Advance Directives, entitled “5 Wishes”. It reads very similar to the more bland AD pamphlet with three notable exceptions – “How comfortable I want to be”, “How I want people to treat me”, and “What I want my loved ones to know”. Those tools could soften and gently personalize the conversation about end-of-life decision-making.
Those three wishes give the powerless – those who can only stand by while someone they love is dying – specific tasks to perform to enhance the quality of the last days and hours and instill a sacred dignity to the art of dying. I wish that they had been a part of my own mother’s AD process. At 88, however, she was not very open to talking about what she wanted (besides that she didn’t want her children to hurt). Baby Boomer Elders may be more forthcoming about what would make their final passage sacred and meaningful, (or even fun and joyful!) My Depression Era mother was not. We had to guess. How much gentler it would have been if we had known what was important to her, to enhance her comfort.
There are few reasons for any emancipated adult to not have the discussion about end of life wishes — from medical care choices to what music you want playing when you are unconscious or passing — and legally initiate appropriate Advance Directives. Perhaps more people would engage in them if they knew that:
1. They can be revoked at any time by the issuer.
2. They only go into effect if the issuer cannot make medical decisions for themselves due to inability to communicate their wishes.
3. It alters the responsibility for making life-to-death medical decisions to the issuer, having had a discussion about their values and desires with their appointed representative. It is an act of personal empowerment — one is less “victim” to the end-of-life passage, and more a participant.

4. The process of reviewing the choices one must make when completing their advance directives opens the door to conversation valuable in any relationship, “what to do when I am dying”.
5. It is kind for the family to have decisions articulated and communicated in advance.
Inadequate understanding is a barrier to completing Advance Directives. The concept that it is somehow a “death sentence” or supported by “death panels” can link Advance Directives to one of the most emotionally charged phrases to come from the detractors of the Affordable Care Act, though the PSDA precedes the ACA by more than a decade. For those wishing to engage in all means of life-sustaining treatment, it is still important to appoint a representative to direct medical care and long term care choices from home health, nursing home to hospice. The idea that Advance Directives are only for those wishing to halt life-sustaining treatment is a common misunderstanding of it’s purpose.
There is a risk of exploitation and that needs to be guarded against, and is, by the stipulation that the appointed representative cannot be a caregiver or employee of a facility where the issuer receives care. It is possible to appoint the wrong person for the wrong reasons. A representative should be someone the issuer is confident will follow their wishes, who has knowledge of the care they have been receiving and their medical history, as well as their values and desires.
Life is short, the time is now to think about what you would want and who would be your voice if you couldn’t make your desires known. Have the conversation with your children and your folks.

For more information on “5 Wishes” visit

The bumpy road of expectations

Expectations. We all have them. We expect the people around us to be kind, sometimes lie to us and stroke our egos. We expect the world to have some sense of fairness and folks to follow the most basic rules of conduct. We expect the opportunity to make a living, to be accepted for who we are. And, somewhere in this “youth culture” milieu, we expect to not change, not see our physical or mental abilities diminish, not have our “privileges” imposed upon.

When reality dope-slaps our expectations, disorientation and disappointment ensue, and depending on the severity of the disappointment, the process of grieving begins.

Dr. Elisabeth Kubler-Ross identified five stages of grief as related to patients and families coping with terminal illness: Anger. Denial. Bargaining. Depression. Acceptance. We don’t always follow this in order, and sometimes when we are grieving (and really, isn’t disappointment a minor stage of grief?) we revisit feelings and behaviors we have coursed through already.

This morning, I’m not talking about death and dying. I’m talking about disappointments that come from the subtle but real expectation that we aren’t going to “get old”. Our reaction time will stay the same, our vision won’t really fail, our ability to concentrate won’t become scattered. We will always be able to drive – safely.

Driving. Our steel horses that carry us away to where ever we want to go. Power at our feet and finger tips. Freedom. Our youth culture is built upon it (as is our economy).

Then, one day, that freedom is gone without warning.

A letter from DMV comes in the mail. “It has been brought to our attention that your ability to safely operate a motor vehicle has become impaired…” There is no trial. No jury to convince. No charges filed against anyone. Someone saw you weaving or slowing down abruptly and called in your license plate number and now you have to prove that you are not impaired.

Worse, you might have to admit that you are.

This is a real scenario. Of all the expectations that leave one’s sense of worth and independence shattered on the rocks of despair, losing the driver’s license and the freedom we cherish, is near the top of the list. You can lose a spouse, but still, you can drive yourself to the market, church, the widow’s group. Your health can fail, which makes driving all the more important. When vision fails, well, then, that’s not your fault and people will help – but to accept the idea that you have become addled or incompetent to do this most basic thing – drive a car safely – tears at the independence upon which we have so much pride.

Anticipate this. For your parents. For your auntie, and for yourself. Start the dialog now. “Hey mom, have you ever thought about how you’d get around, or where you’d want to live if you weren’t driving anymore?” It’s a loaded question, but it begs proactive thought. If it makes you uncomfortable, you can always start with, “I was reading this blog today, and an interesting question was posed….” I don’t mind. I’ll be your scapegoat. Know your resources. Know your parents’ thoughts about their future independence. Bette Davis is quoted as saying “aging isn’t for sissies”. I’d add “it’s no time to stick your head in the sand”.

Talk. Plan. Avoid crisis.

Happy Sunday everyone! Call your mother (or dad or auntie)!

Peace and laughter,

“The antidote to disappointment is gratitude”.

(I’m sure someone has said this before me, but I’m saying it this morning! 😉