Strange indeed….

1. You should select strong and assertive proxies,
who will make the contents of your Advance Directive known
and make sure that your wishes are fulfilled.

2. You should attempt to get your doctor to agree in writing
to follow your Advance Directive.

3. You should not sign consent forms for any unwanted services.

4. You should assure doctors that there will be no adverse consequences
for them if they follow your Advance Directive
—but that their refusal might have adverse consequences.

5. You can appeal to an institutional ethics committee
if the doctor does not seem to be following your Advance Directive.

6. You can threaten to withhold payment for unwanted services.
To make this work, you need to make it clear to the hospital and doctors
that specific bills will not be paid because the services were not authorized.

7. You can threaten to inform the Department of Health and Human Services
if federal funds are paying for care you do not want.
(Doctors fear even having to answer such complaints.)

8. You can sue the doctor in civil court to enforce your Advance Directive.

We would hope that the milder forms of enforcement would work.
But some doctors might need to be reminded that we have
stronger measures at our disposal if they do not cooperate.
Sometimes it works better to put the case in writing
to the legal department of the hospital,
which might have more influence over the doctor’s behavior
than the request of the clients and/or their proxies.

A few lawsuits about failure to follow Advance Directives
will put everyone on notice that ‘living wills’ are legal documents,
not just expressions of opinion that can be easily ignored.

An Advance Directive written in cooperation with your doctors
should head-off any such unfortunate misunderstandings and conflicts.
And your terminal care should go as you want.

####################

The summary above is used by permission of the author, James Park.
This section is called: ENFORCING YOUR ADVANCE DIRECTIVE.
See the outline of the whole book here:
http://www.tc.umn.edu/~parkx032/AD-OUT-NET.html

Here are eight open-ended Questions I have addressed in my own Advance Directive:

Question 12: When should all curative treatments be ended? 118

Question 13: When should Do-Not-Resuscitate orders
be written for you? 122

Question 14: How long should you be maintained by life-supports? 138

Question 15: Should food and water ever be withdrawn or withheld
in order to shorten the process of your dying? 142

Question 16: Do you endorse more active means of ending your life?
Do you believe you have a right to die?
Voluntary death? Merciful Death? 144

Question 17: Under what conditions would you request death? 146

Question 18: Do you wish to join the One-Month-Less Club? 150

Question 19: Which definition of death should apply to you? 152

Sometimes doctors and hospital administrators must interpret
very brief statements about what kinds of terminal care we want.
But if we create comprehensive Advance Directives for Medical Care,
then most of that need for interpretation of vague phrases disappears.

Further explanation of the 8 Questions above will be found here:
http://www.tc.umn.edu/~parkx032/AD-OUT-NET.html
Or search the Internet for “Your Last Year”,
from which these Questions are quoted.

Another section of this book explains specific actions we can take,
including withholding payment, if we are being treated against our will.

It is both ingrained behavior AND fear of being sued if they do not do every possible thing, no matter how absurd, to keep the patient alive that often causes doctors and hospital staff to ignore advance directives. If you confront this issue up front, assuring every last person you can reach in the hospital,certainly including nurses and hospital staff that the entire family wants what the patient wants, but more than that, that the courts will absolutely support what is done in furtherance of the document, you can often times be heard.

Finally, one way around this ignoring of “the document” is to instead give someone your Health Care Power of Attorney. Then that person, who is often the closest living relative or friend, will be able to march into the hospital waving the appointment papers and letting everyone know just what should and should not be done and, once again, reminding hospital staff that you will sue anyone who violates the patient’s wishes as you express them.

I’m a retired lawyer and so help me I am loath to say it, but you have to be agressive and proactive to get your loved one what they really want. And in this instance threatening to sue in capital letters is just necessary. And of course some hospitals/nursing homes perform rediculous and rediculously expensive “end of life procedures” and the motive is simply profit. Its degrading and heartbreaking. And it happens to those who have no voice, or no money, or no power. Their dying becomes a commodity often fought over by the competing medical entities.

If we had a law that medicare would not pay for heroic end of life procedures until proof is given that the patient wanted such heroic procedures, I do agree that the problem would virtually “fix itself”. It would, as already suggested, remove the profit motive for these services. One can only hope, but until then, advocate and be agressive.