Monday, August 10, 2009

Advance Directive

On those few occasions when a patient had an advance directive, it was terrifically helpful. To me as their surgeon, to other caregivers, to the family, and, of course, to the patient. Which is why the outrage over a plan to assist people in making them (and cover the cost of counseling) is as cynical as it is ill-founded. Cynical, because people are turning it into "they're coming to kill grandma." Unfounded, because it actually puts people in control, not caregivers or government.

My parents serve as two examples.

Like most people (or so I assume), my dad had always said he'd never want to be kept alive by machines, and had a directive that put it in writing. Yet when he entered the hospital for what turned out to be the final time, after months of physical decline that had made his life only about the rudiments of existence, when the chips were down he opted for the ventilator. Which is an important point: nothing in his directive prevented him from changing his mind, as long as he could express it. At the time, his world had shrunk entirely, barely extending beyond his skin, having formerly been a man of superior intellect, a voracious reader, adviser to governors and senators, a mayor himself, a judge. Leading up to his death, he'd become unable to get in and out of bed on his own, needed help in all forms of personal care, had not the strength nor will to talk about anything but his own decline. He was miserable. And yet he opted for entry into the critical care unit, where he remained, kept alive, for two futile weeks, until he died. Even having had an advanced directive to the contrary, his wishes at the time were honored, as they should have been. (It did, however, make it easier for everyone, when the futility was evident, to take the steps to discontinue aggressive care. An important point.)

My mom, likely past the midway point in her descent through Alzheimer's disease, also has an advance directive. Composed with the help of her very caring doctor, who gently and carefully went through all the options, it directs that all reasonable measures be taken to prolong her life. Now well past the capacity to consider or reconsider, she gets wonderful care. With her strong heart and good genes, her body will likely live long after her mind is gone entirely.

Whatever else they might mean, these two cases illustrate, at the very least, that making advance directives available is hardly a step down the road to euthanasia.

They also illustrate something else: directives are not for people who retain their ability to make their own decisions. The intent is to carry out people's wishes when they're unable to express them. It's the opposite of euthanasia: it's giving PEOPLE -- not governments or others of evil intent -- legal control over their own fate!! THEIR OWN FATE!!!

The misinformation, willfully disseminated to the vulnerable by those who stand to profit from keeping things as they are, and by those whose only goal is to regain political power no matter the damage to people who need better care, is appalling. But effective. People are scared. They're becoming distrustful of the very thing that allows them to call their own shots beyond the time they otherwise can.

It's the perfect example of how people are being tricked into agitating against the very things they need. That, and the anti-reform protester who was injured at a town meeting, who's now asking for donations. To cover the health care he lost when he lost his job! Simply amazing.


Brandy said...

Thank you for putting understandable and knowledgeable words behind what a care directive should be and how it's handled.

We are young ourselves but we want to have things in place for the "what if's" that come up in life.

I want to control if I'm put on a ventilator, if I have a ton of stuff done etc etc, I want to control my body in a way that I see fit.

Anonymous said...

I cannot understand why people who are receiving Social Security, Medicare, Medicaide, VA benefits, or disability assistance are now upset about universal health insurance because it is "socialism." I am afraid that the ruckus they are raising right now will cripple the cause. Perhaps if we specify that anyone who is receiving the above-listed help is forbidden to demonstrate against health reform for the rest of us.

My congresswoman and my Senators are Republican and no matter what letters or emails I send, they will vote against a single-provider universal healthcare bill. I feel disenfranchised and frustrated that my "representatives" do not represent me.

Silvia said...

I love advance directives for the same reason you do: it gives the patients power to say what can/cannot be done to themselves when they are unable to express it. I think everyone at the age of 18 should be required to fill one out, and then the huge legal battles would finally end (for those family memebers who chose to pull the plug when others didn't).

rlbates said...

I was very thankful that my mother had told her children (all of us) what she wanted done, so that when the need arose in May we could follow her wishes when she could no longer speak for herself.

It's not good enough for the discussion to be between physician and patient. It needs to be between patient and family members as well.

Nice post, Dr Sid.

tom said...

Excellent post-not sure how anyone could find fault with individuals giving some thought to what they want , IF they are unable to speak for themselves.

I got a call one night from a Nurse advising me that Mr. Smith was becoming extremely short of breath and had decided to "change his mind" about being put on a ventilator. Seems that he had an Advanced Directive that stated "No Ventilator" and the Nurse wanted to know if he could change his mind? Duh.

I believe that very few families ever discuss the topic of "what to do if". Resulting in much confusion and perhaps poor decision making when families try to agree on what "Dad would want"

People generally agree that there is value in financial planning, estate planning, why the bfd about end of life planning. Perhaps we need a country western song "Alive but not living is no life for me".

Glad you are back at it!!

Anonymous said...

Sorry class of 65, while your heart is in the right place, your mind isn't. If we "forbid" any of those people from expressing their opinion, then we are robbing them of their constitutional rights.

I have an AD. Here in the south we call it a Living Will. Got it as soon as I got married, along with a regular Will.

Anyway, I just wanted to read some stuff from Sid, because all of the negative news out there about protesters and "union thugs" and such is really getting me down. It's as if they're actually winning, and it's scaring me.

mibsphil said...

Thank you for this. My husband just died a month ago, and we had made sure that we made all the necessary plans well in advance: health care proxy, living will, will, etc. His doctors and I, as well as the nurses and doctors in the hospital, knew that he did not want to be intubated and that when it became obvious that he wasn't going to get better he wanted to be allowed to die in comfort. And that's what I did for him--comfort care, according to his wishes, so that he could die peacefully in his sleep with me by his side and caregivers who treated him (and me) with compassion and dignity. We had many conversations with his doctors about this, and I am grateful for those conversations. Everyone needs to do this, and people need to be educated about it so they understand that it brings more peace of mind, not less, and puts each of us in control of our own destiny.

Anonymous said...

Well said,Sid...


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