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An Advance Directive

by Marilyn Mitchell

 

An Advance Directive is a document that is meant to give health care professionals an understanding of your medical preferences if you cannot speak for yourself.  It tells them ‘in advance’ of needing treatment what you would most likely want to have happen.  Many people may know them as "Living Wills," but a Living Will may only address your treatment options and not allow you to appoint someone to speak for you if you are unable to communicate.  Another document that is useful is called a "Durable Power of Attorney for Health Care" and it allows a person to designate someone to speak for them if they are unable to speak for themselves.  The person is sometimes called a ‘surrogate’ or a ‘proxy’ decision maker.  Many Advance Directive documents combine the 'living will' portion with a portion that is a Durable Power of Attorney for Health Care.  Here is a link to the VA's Advance Directive, which is a fine version of the combined document: http://www4.va.gov/vaforms/medical/pdf/vha-10-0137-fill.pdf

Only about 20 percent of Americans have an Advance Directive, but I believe everyone could use one.  Some of the most famous bioethics cases arose from situations involving young women that had no Advance Directive (Karen Ann Quinlan, Nancy Cruzan, Terry Schiavo).  These women were young and had no intention of finding themselves in persistent vegetative states.  Keep in mind, it's not just a persistent vegetative state that may make speaking for yourself impossible.  There are a whole host of reasons why someone might be receiving medical treatment and they would be unable to speak, including many surgical situations.

Advance Directives have two purposes.  One is to let health professionals know what kinds of treatments you would find acceptable.  Many people find the thought of being placed on a mechanical ventilator for long-term existence unacceptable.  Others may find the idea of living with advanced dementia, dependent on a surgically placed feeding tube, something they would like to prevent.  Some want every possible treatment to be attempted, regardless of the outcome.  Often people decide whether they would like a medical team to attempt resuscitation (CPR) or to allow for a natural death.

The other critically important thing an Advance Directive usually does is to appoint someone specific to make medical decisions on your behalf if you are unable to make them.  It's vital to speak with that person about your values and expectations since it is a serious responsibility.  All too often in clinical settings, health professionals ask the person most likely to assist with decision-making what they think the person requiring treatment might want and they admit they have no idea.  The person named in the Advance Directive is meant to make decisions that are closest to what that person would want if they could speak for themselves.  It's not acceptable for people to direct the health care team to take actions based on their own values since those values may differ from those of the person in need.  Just as unacceptable would be for the health care team to decide what is best without knowing what the ill person would want.  This is the area where there seems to be a general lack of understanding.  We are not deciding what we think is best for the person; we are attempting to imagine what that person really would want done.  What is “best” is often very subjective in medical situations.

In emergencies, the default option is to do everything to save the person's life.  But there are situations in which doing that would not necessarily be in the best interest of the person experiencing the emergency situation.  For instance, an elderly person had requested hospice care and was nearing the end of their life.  The relative living with them panicked and instead of calling their hospice nurse, called 911. The elderly person was unsuccessfully resuscitated, which caused pain from having their ribs broken during the chest compressions and unnecessary stress at the end of their life.  They did not survive.  They did have an Advance Directive, but their relative did not follow their wishes to die a natural death.  It is very important to choose someone you think will commit to following your desires.

No one plans on getting into an auto accident, yet most adults have been in at least one.  With about 6 million auto accidents annually in the U.S.  and hundreds of thousands of injuries, it would seem reasonable for anyone that has a driver's license to be required to create an Advance Directive.  We all get to decide if we want to be organ donors at the DMV; why not also decide to designate someone to speak for us if we are unable to due to an accident?

Creating an Advance Directive may be very important for anyone's future; yet even more important are the conversations you have with family and friends regarding your wishes.  That way you will know that several people are able to communicate your wishes.  It may not seem like festive holiday banter, but discussions about these issues are becoming more important than ever because we live in an aging society. 

Helping a loved one create an Advance Directive if they’ve begun the process of dementia is still possible in the early stages.  Most people have fluctuations of their mental abilities as they succumb to dementia.  You may recognize that your loved one is more capable of speaking and understanding conversations at certain times of day.  Discussing an Advance Directive when that person is at their best time mentally would be ideal.

Discussing one’s Advance Directive with one’s primary care physician is also vital to the process.  They can help to explain any misconceptions and answer any questions about treatment.  Unfortunately in today’s medical world, primary care physicians are often not the ones in the hospital at your bedside if you’re admitted; it’s often a hospitalist­, a physician that specializes in inpatient medical care.  But having had the conversation with your primary care physician is essential for you to feel informed about your choices.  That way, if you are admitted unable to communicate, your Advance Directive will have been made with the consideration of information provided by your primary care physician. 
Next. You've created an Advance Directive; now what do you do with it?  It's important that it doesn't end up in your safety-deposit box where it will do no good if it's needed.  Send a copy to your primary care physician.  If your medical system is computerized, it will be scanned and added to your chart.  Keep a copy somewhere others can easily find it.  Give a copy to the person you named as your 'durable power of attorney for health care.' That way, they will know in advance what your wishes are.  It may stimulate even more conversation that could be very helpful if your surrogate is indeed called upon to assist a medical team with decisions for treatment.

Personally, I think every person that drives a car should write an Advance Directive every five years.  I recommend updating regularly because technology changes, and some of your choices may seem incorrect as technology makes life more feasible despite disabilities.  For example, there are some people that might write into their Advance Directive that they would rather not be kept alive if they are unable to speak, but there is research that makes the possibility of communicating using only your thoughts and a special computer very likely in the near future.  Every person over age 65 should be required to create an Advance Directive since it is very likely at some point they will be relying on health professionals to care for them.  Wouldn't you want your wishes known?


 

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