Since that summer day, I have a heightened awareness of this question. I see it everywhere. Twenty years ago I don’t remember hearing it. But now you can hardly have any encounter with the health care system without encountering this question. It is on every admission form for hospitals, clinics, doctors’ offices — even some dentists!
What has happened to bring this about? And what should we think about it?
While living wills are not a new thing (they were first proposed in 1969), they have become increasingly talked about. It was the Patient Self-Determination Act of 1990 that first required health care institutions to promote and support them. They started appearing on admittance forms shortly afterwards. What better way to raise people’s awareness than by putting a question before them every time they went to the hospital?
More recently, the Affordable Care Act of 2008 began to pay physicians to counsel their patients in the intricacies of advance directives. This dangerous practice raised the specter that the very people who might financially benefit from your death would be in a position to encourage it.
Thankfully, that particular provision of the ACA was voided in July of 2015. But before you could blink, new rules were created that effectively did the same thing. All of these federal rules, coupled with sophisticated and well-funded public relations campaigns have succeeded in making living wills, advance directives, and DNRs household words.
With the passage of Colorado’s suicide law last Tuesday (Prop. 106), I thought it would be a good time to ask and answer a few questions.
• Are we required to have an advance directive?
No. You are not required to set up either a living will or an advance directive. But while the question is simple and the answer is definite, learning this fact took a good amount of time and persistence.
There is such a public push to encourage advance directives, that the actual law is obscured and reduced to fine print. When I Googled the question: “Do I need an advance directive?” I was led to the website for Patients’ Rights Council. This seemed like a great source to find out my rights as a patient. But on the site, I could not find any reference to the law. Instead, at the top of the page I found this question asked and answered three separate times with the an unqualified “yes.” Further down the page, they even told me it was “absolutely essential.”
If I’m going to take their word for it, I had better execute an advance directive right away. No wonder people are confused. More than once I have had people come to me with an advance directive form they got at the doctor’s office. The questions on the form are worded in suggestive ways that leave them bewildered. They seem forced to make choices without all the necessary information.
Since these forms are part of a dizzying stack of papers to read, sign and initial, many people are convinced that they have to fill it out and hand it in as a condition of their treatment.
But this is not the case. While any number of official-sounding organizations might say otherwise, the actual Federal Law says that a health care provider cannot “condition the provision of care or otherwise discriminate against an individual based on whether or not the individual has executed an advance directive” (42USC1395cc). It seems the Patients’ Rights Council is more interested in advocating their opinion than they are about informing you of your actual rights. But, are they right in their opinion?
• Is it a good idea to have an advance directive?
That depends on what you mean. Advance directives cover a wide variety of issues including Power of Attorney, treatment options, DNRs, and organ donation. Some of these issues you will want to settle in advance. Others you will want to settle only when all the facts are in. Let’s look at some of these.
Durable power of attorney
This is the first and the most straight-forward of advance directives. When you are incapacitated and unable to make medical choices for yourself, who would you want to make them? Every state already has laws in place that answer this question in a variety of situations. These laws are necessary so that doctors and emergency medical technicians have legal protections when time is of the essence and the situation is fluid and confusing.
While the state already has a way of determining who will speak for you, you should look at Wyoming law for yourself to see if it matches your wishes. There are a couple of reasons that you might want to override it. For one, the law may designate a person to speak for you against your own wishes. This is easily corrected by designating durable power of attorney.
Other times the law might require agreement among multiple family members who see things differently. If they argue for too long, treatment options may be lost simply because of the delay. Specifying for yourself a single person to have durable power of attorney can give the doctors legal authority to get quicker decisions.
Treatment options
When people think about advance directives, they are usually thinking about these. People tend to have an irrational fear of being kept alive on machines for an infinite length of time. But it is never a good idea to make decisions out of fear — much less pre-emptive decisions. Besides, there is no medical treatment that can keep you alive indefinitely.
Questions about whether or not to receive a breathing tube, a feeding tube, an I.V. or a jillion other treatment options can never be adequately answered without knowing the whole picture. How many of us know people whose lives were saved by such medical wonders so that they lived for decades afterwards? Would our world be better if these people had died?
There will, of course, be situations when such treatments are no longer useful for restoring health. In such sad situations, a person with the durable power of attorney can affect their removal. But if you direct in advance that certain treatments cannot be used, you may tie the hands of your loved ones from ordering some care that is perfectly reasonable and hopeful for your full recovery.
Do not resuscitate
This advance directive is known by the initials DNR. We are often tempted to specify this ahead of time in order to prevent our family from incurring medical costs, or being forced to make difficult decisions for us. However, there are problems with this advance directive.
For one, it often cannot be followed. For instance, if you experience a medical problem at home and somebody calls an ambulance, the EMTs are bound by law to stabilize the patient and transport you to the hospital. In effect, any DNR that may be on the record is voided once you pick up the phone.
A second problem is like that above. How can you preemptively exclude resuscitation before you know the exact circumstances? Not only does our health go up and down rapidly, but the state of treatment options is constantly changing. What is a hopeless situation today, may not be tomorrow. Only a loved one consulting with the doctors and medical technicians can have enough of the picture to make an informed decision.
It is a good thing that we are all thinking more about advance directives. Careful consideration of these issues helps us be more clear on what is truly good and right and loving for all human beings. I only wish that the pressure was dialed back a bit.
One of the main reasons that advance directives are being promoted is that health care costs would be reduced. But you have no duty to die in order to save money. Nor do you have any legal obligation to hurry up and make an ill-advised decision.
Your life is precious. Don’t sell yourself short. While we have an infinite number of ways of taking life and shortening life, we have no way to create it. That is purely a gift, a gift to you and a gift to all of us around you. Knowing this is the best advance directive of all.
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