An Advanced Directive May Not Be Enough to Safeguard Your End of Life Wishes


Feeding tubes, defibrillators, and ventilators are all lifesaving tools. However, these lifesaving tools can easily turn into weapons that prolongs a life against a patient’s will. While no one can escape death’s clutches indefinitely, some people choose to shape how they spend their final moments on earth. We don’t wish to linger for years in nursing homes rendered unaware and unconscious by late-stage Alzheimer’s or dementia; or on and off ventilators due to infections; or brain-damaged by heart attacks or strokes, growing so unaware and weak that we lose our choice of a quiet death at home.

We know our wishes, and many people choose to have end-of-life plans in place. Many of these plans ask for only comfort care. They don’t want any artificial hydration or food, no invasive and heroic but futile medical intervention, and minimal feeding. Putting these plans in place and legalizing them gives us peace.

It sounds safe and rational, doesn’t it? In reality, the faith we put in these legalized directives or the staff charged with following them has a history of failing. Medical professionals can choose to ignore these directives, and it doesn’t matter how carefully we word them. This is particularly true if we end our lives in a nursing home or hospital.

Don’t misunderstand me; I’m not talking about physician-assisted suicide. I’m talking specifically about plans where we spell out that we’d like end-of-life treatment withheld like feeding tubes, ventilators, or antibiotics for someone who won’t recover from it. These measures that prolong death even over family members fierce objections.


In part, these things happen because these directives fly into the face of modern medicine. This culture focuses heavily on doing everything possible to stave off death and heal a person, even when it proves to be a futile endeavor. They may see our final wishes as being disrespectful to life. What’s scarier?

People use the terms “living will” and “advanced directive” interchangeably, but they’re different things. However, their intent is the same, and it’s to prevent medical treatment that is viewed as futile. An advanced directive is a broad term that encompasses legalized documents that list any end-of-life wishes you may have if you get to the point where you can’t spell them out yourself. Advanced directives come in three forms. You have living wills, healthcare proxy, and healthcare power of attorney.

Your living will is where you detail what medical treatment you do not want. It includes antibiotics, artificial nutrition, resuscitation, dialysis, and more. Healthcare power of attorneys and healthcare proxies put another person in charge to make medical decisions for you if you’re unable to.

This is a critical issue because death’s very nature has changed with modern advancements. By the time the 1960s rolled around, portable defibrillators and CPR (cardiopulmonary resuscitation) could restart hearts out in the public away from the hospitals. Feeding tubes kept people hydrated and fed, and ventilators kept people breathing.

But, the process of restarting someone’s heart could mean that the person survives with so much brain damage that they’re able to live only through artificial means. This prompted a change in death’s legal definition. It changed from being solely from a cardiac event like a stroke or heart attack to include brain death. The definition of brain death is a loss of brain function that is irreversible. This includes the ability to breathe without the help of a ventilator.

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With this new addition to death’s definition, people with beating hearts who were warm to the touch but on ventilators could be brain dead. The shell of a person continues to function, but everything that made that person them, everything we loved and adored about them, was gone.

In 1969, human rights advocate and US attorney Luis Kutner sought to protect the brain dead and living by proposing living wills. Also the co-founder of Amnesty International, he brought the idea of a living will to protect people from end-of-life treatment that was futile, as long as families and medical professionals respected them.

Unfortunately, younger people didn’t take the time to draw up and legalize living wills. Those people who wished to take their loved ones off feeding tubes or ventilators had to petition the courts for the right to do so, and they often found roadblocks at almost every turn.

The first case came about in 1976 when a 21-year-old woman by the name of Karen Ann Quinlan collapsed in her home. She had just returned from a party where she ingested a mix of tranquilizers and alcohol. She needed a feeding tube and a ventilator. After months and months without a flicker of improvement, her guardian and father requested that her doctors remove her ventilator. They refused to do so, and they also warned that her father would face murder charges. The Quinlans took it to court, and it went the New Jersey Supreme Court before the court sided with the parents. They removed the ventilator, but Karen stayed in a coma until she passed away in mid-1985.

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After this case, each new decade brought more cases eerily similar to Karen Quinlans involving young people who didn’t have living wills and ended up needed feeding tubes or respirators after an unexpected illness or catastrophic accident. Nancy Cruzan’s parents went to battle with the Department of Health to remove their daughter’s feeding tube. In 1982, Nancy was in an accident and thrown from her car when she was 25. Rescuers found her in a ditch of water and unconscious. She had a feeding tube placed. Her parents requested removal in 1987 after assurances that Nancy wouldn’t suffer.

The Department of Health refused to remove it, and they stated that they wouldn’t “starve someone to death.” The Curzan’s took their battle to the Supreme Court and won. Nancy’s feeding tube was removed, and she passed away in 1991. There were protesters around the care facility, and they grew so loud that law enforcement had to move them so the family wouldn’t hear them.

In recent years, the fight for having the right to die has heated up. In 2009, the United States Conference of Catholic Bishops publicly came out against removing feeding tubes from anyone who was unconscious if said person if death wasn’t imminent. They wanted to keep feeding tubes for people who had advanced-stage Alzheimer’s disease, and this is a terminal illness with no way out except death.

Political voices also come into play and express their sentiments. For example, the case of Terri Schiavo. She existed in a vegetative state since she collapsed in Florida at her home due to cardiac arrest when she was just 27. In 1998, Terri’s husband petitioned to have the courts remove her feeding tube, but her parents opposed the idea. The feeding tube was removed in 2001 for 60 hours until a judge ordered doctors to put it back. In 2003, a second judge ordered doctors to remove the feeding tube for a second time. However, then-Governor Jeb Bush gained the authority to reinstate it until 2004 when it was deemed unconstitutional. A United States District Court intervened, and Terri Schiavo passed away in 2005. Terri’s autopsy showed “irreversible, massive brain damage.”

The media firestorm that surrounded all of these cases captured the public and sparked heated debates. Removing hydration and food from a person who has no hope of recovering touches on the core of our cultural, political, and religious beliefs. Some people believe removing these measures means staving a loved on to death. Others believe that it’s simply prolonging a death that is already well underway.

However, the lingering effect these debates and cases had are double-edged. The initial uproar shed new interest and light on advanced directives as a whole, but backlash was swift to follow. After 40 years, many people in the medical and church communities seem unable or unwilling to let people die.

In Japan, it’s not a widely accepted practice. The legal status in Europe depends on the country with Portugal, Ireland, Italy, and Bulgaria offering no legal standing to advanced directives. The Netherlands and Spain recognize them, but they give doctors the ability to deviate for “good medical reasons.” In the UK, Australia, and Germany, doctors who choose to ignore these directives can come up on assault charges.

Around the world, doctors give several reasons for ignoring a patient’s wishes, legal or otherwise. Doctors also tend to work in specialized fields, and family members can apply pressure to keep any and all treatment methods going without regards to how it would burden the patient themselves. As a whole, the medical community focuses on curing people by using every treatment available, and it can be difficult to give up.

Medical professionals fear the family will sue them for negligence if they don’t do everything in their power. At worst, they classify it as money that will continue to treat the patient and offer intervention regardless of a patient’s condition or prognosis. Even if the treatment is futile, there’s a risk the doctor could be accused of performing euthanasia. This is especially true if the advanced directives don’t have very specific wording like not wanting dialysis if the kidneys start to fail.

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In 2007, Henry Perkins, a United States doctor, wrote an article for the Annals of Internal Medicine. He claimed that advanced directives come with too many complications to be useful, and this even includes when they’re specific, precise, and legally valid. In his example, he used an older male who suffered from pneumonia on a chronic basis. This pneumonia landed him on ventilators in the hospital, and the primary care suggested the patient put together an advanced directive. The patient and his wife put together one that outlined what he would and wouldn’t want, and this included ventilator use and resuscitation. They also put who would be around if the patient had a medical crisis, and the man mentioned his daughter.

In this example, Henry Perkins outlined how quickly this plan can disintegrate. Once the patient got back home, he had trouble breathing. His wife dialed 911 and EMTs arrived to take him to the hospital. He’s unresponsive and has pneumonia. His primary care is out of time, and the wife brought a copy of his advanced directive to give to the staff. The staff honor it and provide comfort care only without antibiotics. It a perfect world, this is how advanced directives work.

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However, the patient’s daughter comes to the hospital and finds out that the patient is getting only comfort care. The daughter then accuses the wife and staff of murdering the man. She threatens to go to the press and sue the hospital unless her father gets more invasive methods of life support. The staff and wife cave to the daughter’s demands. The patient gets support and antibiotics, but he dies. This illustrates that even though the patient took care to avoid this type of death and it was one he never wanted, he got it anyway.

Another area of concern is the end-of-life issues for patients with dementia. They’ve gone downhill, and the main area of concern is withholding hydration and food, even if it’s in the advanced directive the patient made when they were of sound mind. However, since dementia wipes out memories, a patient could accept hydration or food if someone offered. The staff could ignore the advanced directive, and the family would have to take it to court to uphold it.

In Canada, there was a recent instance of this with a former nurse named Margaret Bradley. In late-stage dementia, she no longer recognizes or speaks to her family. She has an advanced directive that states she didn’t want “liquids or nourishment” at this stage. However, staff still feed her using a spoon and the family wants them to stop. A judged sided with the staff in 2013, and the family was appealing the decision in 2014.

Photo by Henry Be on Unsplash

When you’re actively dying, your body doesn’t want water or food. Being dehydrated triggers your body to release endorphins, and this can bring about a peaceful death. If you’re hydrated, you can experience vomiting and nausea.

Some of the best advice I’ve ever received about advanced directives was to view them as a sacred text for your family member, and you interpret it with your knowledge on how your loved one lived life and their wishes. No one can foresee new advancements in the medical community, and we shouldn’t have to update our advanced directives to include the newest methods.

How we live our life should be more than efficient in the end.

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