Charlene Thurston, RN, ANP, Director of Hospice
Several years ago, because technology had reached the point of keeping people alive, even when their ability to be conscious and functional was severely limited, there was a public outcry for individuals to have the right to forego or stop aggressive medical interventions, and to be allowed to die. Such was the impetus behind the “right to die” movement, heightened by the high profile cases of  Karen Ann Quinlan, and, several years later, Nancy Cruzan, two young women whose families fought to withdraw treatments when it was felt that there was no hope of a return to even basic mental or physical functioning.

After much adjudication and a strong grassroots effort by ordinary citizens who felt they would not want to be kept alive in such a state, connected to machines and/or tubes, Congress enacted the Patient Self-determination Act. This act requires that health care organizations ask patients about whether they have any Advance Directives, and, if not, provide them with information about their right to have them.

Presently, patients have the right to refuse any treatment, including, IV’s, tube feedings, respirators (ventilators), medications, cardiopulmonary resuscitation, etc. If an individual is unable to communicate his or her wishes about any proposed treatment, a “health care proxy,” appointed in advance by the individual, has the legal authority to make such health care decisions on the patient’s behalf. The intention behind the Health Care Proxy legislation was to keep health care decision making in the hands of patients & their appointed proxies, and out of the courts. If an individual does not appoint a health care proxy, such decisions fall to the next of kin, beginning first with the spouse.

With that background in mind, let us look at the situations which unfolded recently as two people, who touched us all deeply, died. In both cases, as we had the opportunity to witness how end of life decisions might be made, many of us began to think about, and, as importantly, inform our families about, our own values and wishes for end of life care.

In the case of Terri Schiavo, since she became unconscious, and, therefore, was unable to speak on her own behalf, and, since she had not left a written advance directive, conflict ensued as her husband and her parents disagreed over what health care decisions should be made. Although her husband, who had legal authority to act on her behalf, stated that she had previously informed him of her wish not to be kept alive in a state such as that which developed, her parents contested that testimony, and further contested that her husband should have legal authority as her guardian. Although the courts disagreed with the parents, the parents’ appeals to the public, the state and federal legislatures, and the president caused much conjecture about the appropriateness of the laws and guidelines that have been guiding end of life decisions over the past 10-15 years. Opinions were passionately debated by ordinary citizens about which family member should have guardianship; whether tube feedings should be considered extra-ordinary measures; whether only written (vs. verbal) advance directives should be honored.

Regardless of how you felt about this very sad situation, most people would agree that the wishes of the patient should be honored. Therefore, the most important lesson from this case should be for us all to give ourselves and our families the gift of completing an advance directive and of communicating our wishes to everyone who might be involved in making decisions on our behalf – our spouse, children, parents, siblings, and doctors. As can be seen in Terri’s case, this should be done from young adulthood onward. She was only 26 years old.

Only two days after Terri’s death, we were all again witnessing the dying of another public figure, Pope John Paul II, the beloved pope of the Roman Catholic Church. Coincidentally, he’d had a feeding tube inserted a few days before he ultimately died, but the goal at that time was to provide additional needed nutrition to help him increase his strength, as he attempted to recover from a series of illnesses. Unfortunately, soon thereafter, he developed a urinary tract infection, which led to septic shock, and his fragile systems began to collapse.

In contrast to Terri Schiavo’s situation, Pope John Paul was conscious, and therefore, was able to continue to make his own health care decisions. After having tried vigorously to recover from many illnesses unsuccessfully, he ultimately decided to forego further hospitalization and aggressive treatment, and to remain at home to die, in the presence of those he loved, including the thousands gathered outside his window. He was also able to choose to be kept as lucid as possible and to request the types of spiritual assistance that would sustain him on his journey through death – various prayers, meditation, and the reading to him of specific scriptural passages that he had chosen.

As we look at these two very public deaths, we should first be grateful for the privilege of having been allowed to witness and learn from their experiences. In the case of Pope John Paul, we learn the value of being conscious enough to make our own health care decisions as an illness unfolds, rather than needing others to make those decisions on our behalf. We learn that, after a formidable battle to try to recover proved unsuccessful, he chose to forego further aggressive treatment and to be allowed to die naturally and peacefully. In his case, the pope exerted his right not to have such further interventions as certain medications, a respirator, dialysis, hospitalization in I.C.U, etc. And, we learn the importance of preparing spiritually – considering and requesting that which would help us as we transition from this life to whatever comes next.

In the case of Terri Schiavo, we see how much suffering can occur if we should become unable to communicate our own health care decisions and haven’t clearly informed those we love of what our wishes would be. We learn that, without written advance directives, competing members of families, as well as the public and the legal system, often fight to have their choices carried out, whether or not they’d be ours, and that those choices will affect how we‘re treated.

In thinking about future legislative or legal directions that would best serve our nation, it’s important that our law makers respond very carefully now, not only considering right to life issues, but also remembering right to die issues. The laws which were developed after the Quinlan and Cruzan cases were directed at keeping the decision making with patients and families, versus the courts or healthcare organizations, whenever possible. While some review and reconsideration may be in order, creating new laws that would insist that people without written advance directives have treatments, such as i.v.’s, feeding tubes, respirators, etc., would undo all the good work that’s been done over the past 20 years. The underlying foundation on which decisions should be made is patient autonomy – the right of individuals to make their own decisions and the right to have those wishes followed, within the law.

Let us hope that, as the world has kept vigil, we’ve all learned the importance of exploring our own values and communicating our wishes to those who will be entrusted to make life and death decisions on our behalf.

Funded by the Palliative & Supportive Care of Nantucket Foundation, the Palliative & Supportive Care Program is operated as a department of the Nantucket Cottage Hospital, which is an affiliate of Massachusetts General Hospital, and a member of Partners HealthCare. Palliative & Supportive Care of Nantucket is a specialized health care program dedicated to providing excellent physical, psychological, social, and spiritual care to persons with life-threatening illness and their families.

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