Talking to Your Doctor When You Can’t Speak
Unimaginable, isn’t it? The idea that we could be facing a life-and-death decision about our own health care — but we are mute, unable to speak or communicate in any way.
Yet this scary, unimaginable event happens to millions of Americans every year. And because most of us haven’t given the prospect any advance thought, decisions can be made for us that we wouldn’t make for ourselves if we had any say.
If we’re suddenly stricken unconscious, we can count on getting emergency care to keep us alive and revive us to normal consciousness if possible.
That’s not the issue.
The problem is with what happens next — the “Then what?” of health care — when the patient cannot speak for himself or herself, and family members are confused or in conflict.
There are good simple solutions to this problem that require only minimal advance planning. We talk about them here.
This is part three of our conversation about health care conversations. We started two issues ago with the core idea of medicine: that every patient can and should exercise the right to decide what happens with his or her own body. It’s called “informed consent,” and it’s all about having a good conversation with the doctor or other provider, to help us form a bond and get the best care. Last month we continued with a discussion about how good questions to the doctor can prevent misdiagnosis.
These are conversations that can truly save a life: yours or a loved one’s.
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Some Eye-Opening Numbers about Your Odds of Landing in an ICU
Anyone tempted to stop reading this newsletter with the idea “it can’t happen to me” should read these numbers first.
Five million Americans are admitted to intensive care units every year. Most of them are unconscious or unable to communicate in any meaningful way. ICU care is about the most expensive part of American health care — accounting for about thirty cents of every health care dollar. ICU care is also prone to error and patient injury — not because of incompetence, but because of the sheer intensity and number of things going on for each patient. So every one of those five million Americans needs a good advocate for them in the ICU.
Elderly Americans are especially likely to spend time in an ICU. On average, one in nine spends at least a week in the ICU in the six months before death, and the numbers in some parts of the country are as high as one in four elderly persons spending a week in the ICU before they die.
So if not you personally, then the odds are that at least through an elderly relative, you will experience intensive care in a hospital at some time in your life. And decisions will have to be made.
The Health Care Power of Attorney
There are two ways you can plan for the day when you cannot make your own health care decisions.
One is to appoint someone to make the decisions for you. That’s called a health care power of attorney or health care proxy.
The other way is to prepare what’s called a “living will.” In a living will, you describe your goals for medical treatment, your religious or spiritual beliefs, and any guidance you want to give about your preferences for medical treatment in various circumstances.
You can do either or both. But I recommend everyone fill out a health care power of attorney — aka “durable power of attorney.” It’s a simple form that accomplishes one basic important task: it appoints someone to speak for you if you cannot speak for yourself. And it takes effect ONLY IF you cannot speak for yourself.
The format of the document couldn’t be simpler. In most states, you write something that says “I appoint [fill in name] to make health care decisions on my behalf when I am unable to make those decisions myself.” You sign it and have two people witness your signature, and then you give copies of the document to various important people.
Even easier: Download a free, state-specific form for the health care power of attorney from this website, a project called Caring Connections, from the National Hospice and Palliative Care Organization.
You should especially have this done if you’re not close to your legal family members and someone else has a much better idea of what you’d want done for your own health care.
Read the next section for some specifics you might want to consider adding to the power of attorney by way of a “living will.” But these are optional. If you trust the person you’ve designated to be your decision maker, you don’t have to do anything more than appoint him or her.
(And don’t worry: It’s easy to appoint someone else if you change your mind or circumstances prevent your first choice from doing the job.)
The Living Will — and Some Questions to Think About
Do we pummel Grandma with everything modern medicine has?
Maybe so, if she’s been alive and vibrant until a day or two ago. Maybe not, if she has advanced dementia and several of her body’s organ systems are already failing. It all depends, and Grandma can help us make the right decision by alerting us in advance about her wishes.
It’s called a “living will” — and it’s usually best set up as an advisory document that gives guidance but not hard-and-fast dictation. Because “it all depends” on the actual circumstances, and it’s hard to know that in advance.
Here’s an excerpt from a “living will” form put together by the National Hospice and Palliative Care Organization. The idea of the form is to check off your preferences during a calm and considered time so that your family members won’t be left to guess:
If my doctors certify that I am in a persistent vegetative state, that is, if I am not conscious and am not aware of myself or my environment or able to interact with others, and there is no reasonable expectation that I will ever regain consciousness:
_____ 1. Keep me comfortable and allow natural death to occur. I do not
want any medical interventions used to try to extend my life. I do not
want to receive nutrition and fluids by tube or other medical means.
_____ 2. Keep me comfortable and allow natural death to occur. I do not
want medical interventions used to try to extend my life. If I am unable to
take enough nourishment by mouth, however, I want to receive nutrition
and fluids by tube or other medical means.
_____ 3. Try to extend my life for as long as possible, using all available
interventions that in reasonable medical judgment would prevent or delay
my death. If I am unable to take enough nourishment by mouth, I want
to receive nutrition and fluids by tube or other medical means.
The person writing a living will might want to think about some related issues:
* Do we surgically implant a feeding tube into the stomach to take over for the swallowing mechanism that doesn’t work any more?
* Should a respirator be used to take over breathing?
* Should CPR be used if my heart stops — shocking the heart with paddles, and pounding on the chest to squeeze blood from the heart, along with various medications?
* Should I be put on a dialysis machine to take over for my kidneys if mine have failed? (Dialysis is a particularly overused treatment for hopelessly ill patients in the last month of life, probably because Medicare covers the full cost of it.)
In every one of these particulars, one issue is going to be the prospects for recovering a normal or near normal life if heavy-duty care is provided. That’s why my advice is not to place any specific hard-and-fast restrictions on what you want, but just outline general concepts for guidance, and rely on the good sense of your designated decision maker to make the right choices.
Come Visit Our New Office!
Patrick Malone & Associates is in spacious new digs. Our building is at 1310 L Street NW Suite 800 Washington, DC 20005.
Give us a call when you’re in the neighborhood, and stop in.
To your continued health!
Patrick Malone & Associates