Thursday, June 6, 2013

Advance Directives -- Do You Need Them?

Last week I answered a writer's question about a scene in which a woman pulls the plug on the ventilator of a patient in ICU. In the course of my answer, I mentioned a form called a Durable Power of Attorney for Health Care. The illustration on the left (courtesy of Cleveland Clinic) shows how a DPAHC is only one part of the umbrella called Advance Directives that protect a person's legal right to participate in medical decisions and accept or refuse medical treatment. This right includes personal decisions involving end-of-life care that mirror the person's values and beliefs.

Are advance directives important to a writer? Well, you could throw in a nasty little twist to your story if a character produces a false DPAHC form in order to hasten Aunt Lizzie's death and thus inherit her estate.

On the whole, though, advance directives are more important to you as a person than as a writer. 

As we all know, s**t happens, regardless of our age or present health. The most famous example of this is the 1983 case of Nancy Cruzan. At twenty-five years of age, Cruzan was involved in an auto accident that left her in a coma and on life support for seven years, despite the fact that she had previously told people she never wanted to be kept alive artificially. It wasn't until 1990 that a judge ruled in the family's favor, ordered life support discontinued, and allowed Cruzan to die peacefully and with dignity. 

In reaction to this case -- and others like it -- President George H. Bush signed into law the Patient Self-Determination Act of 1990. The law required hospitals, nursing homes, and other health care providers to provide information on health care advance planning to adults admitted to their facilities. 

Unfortunately, the law didn't go far enough, because it didn't require that doctors provide the same sort of information to their patients. 

But then the Medicare Prescription Drug, Improvement and Modernization Act, signed into law by President George W. Bush in 2003, authorized "initial preventative physical examinations" by doctors as part of Medicare Part B. Included in those exams were "education, counseling, and referral" services. In 2008, legislators attempted to expand this initial exam to include "end-of-life planning" and information concerning "an individual's ability to prepare an advance directive in the case that an injury or illness causes the individual to be unable to make health care decisions". 

Many doctors resisted the proposed change because legislators failed to include mention of financial reimbursement for what doctors felt would be a time consuming process. President Bush vetoed the proposed amendment, only to have his veto overturned by a combined Democrat/Republican majority. Doctors treating Medicare and Medicaid patients were now required in include "end-of-life planning" in initial exams.

Financial reimbursement to doctors for advance directive education and counseling was proposed in the 2010 Affordable Care Act. Legislators cut the proposal from the bill, though, after politicians eager for publicity falsely called the measure a government creation of "death panels". To date, doctors still do not receive reimbursement for the time spent discussing advance directives with their patients.

Which is why there are still some doctors who fail to inform patients of their legal right to refuse procedures that only extend the dying process.

As one doctor told me, "I don't talk to my patients about that (meaning advance planning). I leave that up to you nurses."

We all understand that talking about end-of-life care isn't easy. Here's a true-life example of how one doctor reacted to the impending death of his patient.

An extremely elderly woman with multiple physical maladies was brought to the ER from a nursing home. Her daughter accompanied her. The patient had been in decline for several weeks and was now only semi-conscious. The daughter wanted her mother to be made comfortable, but did not want any extreme measures taken to prolong her suffering. The ER doctor agreed and suggested the patient be moved to the hospital's hospice unit for her final days. The daughter agreed to the plan, so the nurse caring for the patient called the woman's doctor to inform him of the decision. The attending doctor flew into a rage on the phone. His exact words were, "My patients don't die! Tell the daughter to get a new doctor."

You can imagine how his reply affected the patient's daughter. The poor woman broke into tears, utterly shaken by the doctor's response and now wondering if placing her mom in hospice was the right thing to do. 

In the end, the decision was taken out of the daughter's hands. Her mother died peacefully in the ER before she could be transferred to a room.

Advance planning would have relieved the daughter of much of her heartache. If end-of-life care had been discussed with her mother before she grew too ill to make a decision for herself -- and if a more sympathetic doctor had been the attending in this case -- the process would have been easier for both the patient and her daughter.

Lacking one-on-one discussions with their doctors, people can only rely on those ubiquitous stacks of paper thrust into a patient's -- or family member's -- hands on admittance to a hospital. Among those papers one will find a lawyer-produced pink form pertaining to advance directives, often written in such legalese that the average person has little idea what the darn thing says. I can tell you from experience that, most often, those forms end up in the waste basket. 

I've talked long enough here, but I'll be back another day with more on the differences between Living Wills and Durable Powers of Attorney for Health Care, and which one -- if not both -- you might consider filling out for yourself. Until then, stay safe and in good health! :)



  1. Advance directives and end-of-life planning are both very useful. My father made sure that we all knew his wishes once he knew he wasn't going to live much longer. It spared us from several hard decisions.
    Not everyone has this 'luxury' of time, though.

  2. You're right, Sarah. Not everyone has this time. That's why it's so important to discuss these matters when we're still in good health. No, it may not be a pleasant subject for a discussion, but it sure is a necessary one.

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