I recently accompanied Attorney Connelly to a presentation he did where he discussed the importance of advanced directives, and spent time explaining a living will in response to a question about it.
“A living will”, said Attorney Connelly, “is an important document, along with a healthcare power of attorney, that's part of an advanced directive package. It explains whether or not you want to be kept on life support if you become terminally ill and will die if such support is withdrawn, or should fall into a persistent vegetative state.”
Medically, a persistent vegetative state (PVS) is a clinical condition in which the function of the cortex is impaired while the function of the brainstem is preserved for a period of more than one month.
Traumatic brain injury and diffuse cerebral hypoxia are the most common reasons for this state. Patients in PVS may appear awake but are not aware or conscious, and they are unable to communicate with others or purposefully interact with their environment. However, they are still able to breathe on their own, sleep-wake cycles are preserved, and autonomic function is at least partially retained.
PVS is a clinical diagnosis and is different from a coma where there is no sleep or wake cycles, and brain death where there is no sleep-wake cycles or brainstem function. Although most patients remain in a vegetative state for years, very few are likely to recover spontaneously. A vegetative state is declared permanent when recovery is very unlikely, such as being the result of trauma lasting more than a year or a non-traumatic cause lasting longer than three months.
A Living Will also addresses other important questions such as a person’s preferences for tube feeding, artificial hydration, and even pain medications. Such a will is only in effect if and when a person cannot communicate their desires on their own or lacks the capacity to do so.
To complete the advance directives, a healthcare power of attorney should also be included in which you name a person to make decisions for you when you are unable to do so. In some states, this directive may also be called a durable power of attorney for health care or a health care proxy.
A woman who attended this workshop brought up the case of Terri Schiavo, the Florida woman who fell into a coma in 1990 and became the center of a moral, bioethics, euthanasia, legal guardianship and civil rights battle over what “her wishes” would have been, putting the judge in the role of being a mind reader. But before the Schiavo case was another precedent-setting case that occurred some fifteen years earlier in my native New Jersey that most seem to forget about. And it was this case that led to the adoption of advance directives and had many choosing sides on the ethics exhibited by the medical and legal communities. This case involved a young lady named Karen Ann Quinlan.
Karen Ann was an adopted 21-year-old who was born to an unwed mother in Scranton, Pennsylvania. She was a popular student at Morris Catholic High School in Roxbury Township, New Jersey who enjoyed singing and was a “bit of a tomboy”, according to her adopted parents.
In mid-April of 1975, Quinlan attended a party at a bar in Byram Township, New Jersey. Prior to that event, she had embarked on a radical diet in order to fit into a dress. For over 48 hours, Quinlan ate nothing and drank very little. When arriving at the party, she began drinking mixed drinks and taking Valium. Within an hour, she began to feel sick and friends took her home and put her into bed.
When she was checked on fifteen minutes later, she was not breathing. The fire department was called and medics were able to start her breathing again but she never regained consciousness. She was transported to Newton Hospital where she arrived in a coma and never woke up. After nine days, she was sent to Saint Clare’s Hospital where they were better able to handle this type of case.
After days of tests, it was determined that she had suffered irreversible brain damage due to a lengthy period of respiratory failure. Her brain was damaged to such an extent that she had entered into a persistent vegetative state. Over the next few months, her condition slowly deteriorated. Upon entering the hospital, she weighed 115 pounds but over a few months, her weight had dropped to 80 pounds. She was fed through a nose tube and had a ventilator to assist her in breathing. Her parents, feeling that recovery was not possible and seeing her “suffering”, requested that the ventilator be disconnected because it appeared to be causing her pain.
Once this request was made public, the Morris County prosecutors threatened to file homicide charges against the hospital if they complied with the parent's wishes. In September of 1975, the Quinlan’s filed suit requesting that the “extraordinary means” that kept their daughter alive be terminated. Their lawyers argued that Karen Ann’s right to make a private decision about her fate superseded the state’s right to keep her alive.
Superior court judge Robert Muir, Jr. denied the request in November of that year. The Quinlan’s appealed the decision to the New Jersey Supreme Court and in March 1976, the court granted their request. When she was removed from the ventilator that May, she continued to breathe on her own. Although the parents had asked that the ventilator be removed, they did not request the withdrawal of the feeding tube. She was eventually moved into a nursing home where she lived for nine more years, dying from respiratory failure in June of 1985. No attempt was made to revive her.
In the court case, the justices ruled that her father, and not the doctors or a court, was the authority for deciding her fate. They also ruled that no one could be held criminally liable for removing life-support systems because the woman’s death “would not be a homicide, rather the expiration from natural causes.”
The ruling was precedent-setting as the court invited the medical profession to use the guidelines from the case in the future in which doctors could agree to the private pleas of relatives of pain-ridden, terminally ill patients and withhold extraordinary measures to keep them alive. The case led to the requirement that all hospitals, nursing homes, and hospices have ethics committees. The Quinlan case led to the creation of living wills.
Then came the Schiavo case nearly a decade and a half later.
Terri Marie Schindler was born in December of 1963 and grew up in Pennsylvania, where she attended the Bucks County Community College after high school. While a student there, she met her future husband, Michael Schiavo in 1982. Two years later, they were married and moved to Florida in 1986 after her parents relocated there.
On the morning of February 25, 1990, Terri collapsed in the hallway of her St. Petersburg apartment. Her husband called 911 but by the time paramedics had arrived, she was not breathing and had no pulse. The cause of her medical emergency was determined to be cardiac arrest, brought on by an extreme diet and bulimia, which led to low potassium levels resulting in heart rhythm abnormalities.
Although medics were able to resuscitate Terri, she never regained consciousness. After nearly three months in a coma, her diagnosis was changed to that of a persistent vegetative state.
Much like Karen Ann Quinlan, Terri was being kept alive by artificial means and her husband, Michael, was appointed as her legal guardian. Her parents were initially in agreement with that decision however that did not last long.
In 1998, eight years after the initial medical issue, Michael filed a petition with the court asking that her feeding tube be disconnected. Her parents immediately opposed this, stating that Terri never formally made her wishes in regard to end of life treatment known nor had she appointed an agent to act in her behalf. This led to a battle that made national headlines and tore the family apart.
The Schiavo case involved 14 appeals, multiple motions, petitions and hearings in the Florida courts, five suits in the federal district court, political interventions at state and federal levels, including the President of the United States weighing in. An appeal to the US Supreme Court was denied.
In 2001, one court ordered that the tube be removed and another court, just two days later, ordered that it be put back in. Two years later, it was removed again and the state passed a law forcing it to be reinserted again. The tube was ordered removed a third time, which almost resulted in a confrontation between state and federal law enforcement authorities. Terri died in March of 2005.
This case became so personal that television stations followed her husband, Michael, and reported that he was dating “other women”. This, of course, led to accusations that he wanted her dead so he could pursue "the single life" and allegations of him wanting to collect on the life insurance policies.
The Schiavo case ended up becoming a national test case for the pro-life/right to die movements. Sadly, all this could have been avoided if Terri, an adult, had executed advance directives prior to her cardiac arrest.
Now, 35 years after the death of Karen Ann Quinlan and 15 years after the passing of Terri Schiavo, some families still continue to battle at the bedside of a loved one in a persistent vegetative state for reasons ranging from religious to intensely personal.
Five years ago, Bobbi Kristina Brown was found facedown in a bathtub, suffering severe brain damage as a result of drowning following a drug overdose. Her hospital room turned into a battleground between her mother’s family (the Houstons) and her father’s (the Browns).
According to reports during that time, the Houstons felt that Bobbi’s father was keeping her alive in order to gain publicity and sell stories to the press. According to them, the Browns were “only pretending to be involved in her care and decisions” in order to take advantage of her and gain access to her mother’s (Whitney Houston) estate.
The Houstons wanted to disconnect the life support so she would pass naturally while the father and his family fought this decision. She died in July 2015, six months after falling into a persistent vegetative state.
Although these stories are heartbreaking, they are just a few of thousands of legal, ethical and moral battles that occur around end-of-life issues. Not only do such situations destroy and alienate family members, but they also force others to choose sides and become involved, sometimes not for the good of the person in the vegetative state, but to support their own ideology, using family tragedies to advance an agenda.
Here are some things to know about living wills and advance directives:
There is no law that requires a person to have one, so if a medical professional speaks to you about this, ask questions and think before you sign as there are many things to consider and if you are naming a healthcare proxy, ask yourself if that person will abide by your wishes;
Advance directive forms can be obtained from the state or local bar association. Most senior centers and many healthcare providers have them as well;
Although you can write down what treatments you may or may not want, without using an approved form, most courts will not accept handwritten orders;
Make sure to tell the necessary people about your advance directives and where they may be kept. They can also be made a part of your medical record, however, should you need to change them (such as the death or moving of a person named as a healthcare proxy), you need to provide the medical office, and anyone else who has a copy, with the updated version;
If religion is the cornerstone of your decision, you may want to speak with your religious advisor to understand the rules of your religion on such directives;
The directives only go into effect when and if you are not able to communicate and make your own healthcare decisions;
Advance directives do not affect the quality of care you receive (for instance, I overheard a conversation where one person told another that having such directives allow a doctor to "let you die" for your organs or relatives to "let you die" for the life insurance, statements so absurd it didn't deserve a response);
Advance directives do not affect your life or health insurance policies;
If you are an organ donor, this can be listed in the advance directives.
Had Terri Schiavo or Bobbi Kristina Brown executed either type of advance directive their wishes would have been clear and would have been honored without the need for the financial and emotional toll of litigation. To prevent putting your loved ones through such turmoil, and to ensure your wishes are honored consult with your estate planning attorney about executing an advance directive as soon as possible.