PROTECT ME FROM WHICH I CANNOT SEE: WHEN ADVANCE DIRECTIVES ARE NOT KNOWN Dying is not as simple as it used to be. Today preparing for one’s death can be as arduous as hiring a lawyers to draft a last will and testament, making sure that every last detail of one’s life is accounted for, to filling out a few simple forms that give an account of one’s wishes for how they’d like to die. Thinking and conversing about death doesn’t come easy for most people; Americans especially have a difficult time with the subject. The notion of one day disappearing is contrary to many of our defining cultural values, with death and dying viewed as profoundly “un-American” experiences.1 However if planning for death is avoided or ignored, it can have profoundly negative consequences for both oneself and the family left behind. Planning for death no longer is simply about what should occur upon one’s death either. In recent history many cases have been brought to trial concerning one’s wishes before they actually died.
Cases in which the defendants, in many instances, were in persistent vegetative states and did not have their wishes of what they would have chosen to do should such an incident have occurred documented. These are cases in which a simple set of instructions, not requiring drafting from a lawyer but legally binding regardless, could have determined the course of action and protected these persons and their families from years of publicized and undignified suffering. Several landmark cases highlight the absolute need to be prepared for the possibility of death. The cases outline the importance that the preparation be known, specific and documented; and show how these critical elements can help avoid unwanted confusion about end-of-life choices regarding prolonged life-sustaining measures. ADVANCE DIRECTIVES Advance directives are a set of legal documents that allow you to spell out your decisions about end-of-life care ahead of time. They give you a way to document your wishes to family, friends, and health care professionals and to avoid confusion later on.2 The documents can outline one or several aspects of a patient’s end-of-life choices including but not limited to decisions about CPR, intubation, hydration and enteral feeding, administration of antibiotics, dialysis, surgical interventions and durable power of attorney appointments. If choosing to document only one set of instructions a living will is the most important. A living will outlines which treatments you want if you are dying or permanently unconscious.2 In it one can specify key components of life-sustaining measures that one may choose to have enacted or from which one might choose to abstain; this includes the use of dialysis machines, respirators, the initiation of CPR or a gastric feeding tube, and inclusion in organ donation. Of secondary importance, as aspects of it can be outlined in a living will, is a durable medical power of attorney which is a document that names your health care proxy, or someone you trust to make health care decisions for you should you not be able to do so.2 A health care proxy will act in your best interest because you have voiced certain instructions that you wish carried out on your behalf in regards to life-saving or –sustaining measures. A Do Not Resuscitate order (DNR) and a Physician Order for Life-Sustaining Treatment (POLST) are both medical directives that are preset and witnessed by a physician and are kept readily accessible should the need to consult them arise. Both of these directives are valid internal to and external of a hospital and are intended to prevent unwanted medical intervention to save a dying patient’s life. The importance of having an advanced directive is clear; document guidelines of how and to what end you would like your life saved or prolonged should unexpected tragedy befall you.
The intentions are to make sure your wishes are known and enacted upon and ensure total autonomy of your medical decision-making. Directives provide guidance for medical wishes, protection from unwanted medical intervention and establish a hierarchy of involvement that you would like made on your behalf. No matter which directive you use, no one will be able to control your money or other property based on your advance directive3; they are not intended to replace a Last Will and Testament.
And although advance directives are binding once signed and witnessed, they are revocable at any time by the holder and can be changed at will. In the clinical setting advance directives are usually initiated with the elderly population or upon a new diagnosis of a terminal disease. Rarely is it discussed among the young and able-bodied. But it is those unanticipated situations in which having an advance directive becomes the most important. KAREN ANN QUINLAN Due to an overdose of drugs and alcohol, Karen Ann Quinlan fell into a coma on April 15, 1975. After suffering severe brain damage from hypoxia she was unable to breathe properly on her own. She was intubated and rushed to the hospital whereupon she was dependent on a respirator to maintain adequate oxygen saturation. Neither the coma nor her breathing ever improved; Karen never regained consciousness and remained in a persistent vegetative state. In a landmark lawsuit on September 12, 1975, Karen’s parents, the Quinlans, asked that the respirator be disconnected and that their daughter be allowed to die ”with grace and dignity,” because there was no hope she would recover.4 Even though her physicians agreed that there was no hope for improvement they were concerned about the legality of withdrawing Karen from the respirator; at that time there had been no medical precedent for doing so in someone so young, particularly when her condition was not immediately terminal.
Confronted with the physicians’ refusal, the Quinlans petitioned the court to have the respirator removed.4 This case set a precedent as the first time that any higher court had ever been required to address whether or not life-sustaining medical treatment could be stopped in a persistently vegetative patient.5 It was the ruling of the New Jersey Supreme Court that Karen’s life support could legally be discontinued. Testimony of some of Karen’s friends made claim that she had specifically made her wishes of not wanting her life maintained indefinitely on a respirator known to them; it was found however that such testimony was without probative weight.6 The Quinlans won the case by arguing Karen’s right to privacy was being violated by maintaining life support with no hope of recovery; thus the court ordered her withdrawal from the respirator. The unfortunate caveat of the case was neglecting to include the gastric feeding tube as part of the life support measures to withdraw; Karen lived for another 10 years off the respirator and with enteral nutrition; she died in 1985 at the tender age of 31 and weighing a mere 65 pounds. NANCY CRUZAN Nancy Cruzan was 33 years old when she was involved in a severe automobile accident. The year was 1983, Nancy suffered massive head trauma and cerebral hypoxia from landing face down in a puddle of water after the accident. Like Karen Quinlan, many heroic efforts were made to save her life after being rushed to the hospital.
But Nancy never regained consciousness. Four years passed as Nancy was maintained, in a vegetative state, on a gastric feeding tube. In 1987, Cruzan’s parents went to court to ask that the feeding tube be removed and that she be allowed to die a dignified death as they said she would have wanted.7 During the hearings, however, the state of Missouri argued persuasively against the family’s request.5 This first ruling was against the Cruzans; the defense argued against the testimony from one of Nancy’s good friends who recalled a conversation she’d had with Nancy about sustaining on life support and Nancy stating that, “she hoped her family knew she didn’t want to live in a vegetative state,” calling the evidence “unreliable.”8 The Cruzans appealed to the United States Supreme Court, where it was ruled that a “constitutional right to refuse medical care, including feeding tubes” did exist.5 It was also found, however, that the state of Missouri would require “clear and convincing evidence” that Nancy Cruzan would have wanted her feeding tube removed as to not persist in a vegetative state. The Cruzans gathered evidence for another 3 years in order to provide the required level of burden of proof. The evidence consisted of testimony from relatives, friends and previous coworkers; and in 1990 the US Supreme Court ruled that “clear and convincing” evidence had been brought forward. The ruling spurred enormous interest in living wills and other advance directives that allow people to spell out, in advance, what treatment they want, and who should make decisions for them if they became incapacitated.7 Nancy’s feeding tube was removed on December 15, 1990 and she died on December 27th at the age of 33 with her family at her bedside. MICHAEL MARTIN On January 17, 1987, Michael Martin sustained multiple traumas and a closed head injury affecting both hemispheres of his brain following a car-train accident. The injuries left him severely mentally impaired, unable to walk or talk, as well as dependent on the use of feeding tubes to sustain his life.5 Although completely paralyzed, Michael was not in a persistent vegetative state; he maintained some minimal aphasic responses and appeared to recognize familiar faces. Michael’s wife, Mary, who was also his legal guardian, helped take care of him in the hospital over the next 5 years.
Michael required a colostomy, a gastric feeding tube and was completely dependent on his caregivers. His condition did not improve and in 1992, Mary filed a petition in the courts requesting authorization to remove Michael’s feeding tubes.5 Mary testified she and Michael had “discussions regarding…[their] wishes…if either of [them] was ever involved in a serious accident, had a disabling or terminal illness or was dying of old age,”9 forwarding that Michael had frequently stated that “he would rather die than be dependent on people and machines.”10 The probate court initially denied Mary’s request on account that although her testimony and the testimony of friends and old coworkers was both clear and convincing, Michael was not in a vegetative state and thus law did not apply. Upon appeal, however this decision was overturned and the request to remove the feeding tube was granted. Michael’s mother, Leeta Martin, and his sister, Patricia Major, opposed the request and filed a petition with the Michigan State Supreme Court, asking that Mary be removed as Michael’s guardian; alleging that Mary was only interested in settlement funds from a lawsuit against the railroad involved in Michael’s accident.5 Although this petition did not succeed in removing Mary as Michael’s legal guardian, the Court reversed the Appeals Court’s order to remove treatment, holding that life sustaining medical treatment could not be removed from a formerly competent patient who had not made a living will or durable power of attorney.11 Though the Appeal’s Court had found the evidence to be “clear and convincing,” the Supreme Court found insufficient evidence; ‘Michael’s wishes’ were “purely subjective,” “general, vague and casual…” and “could not be considered because they were not expressed in writing.”9 Thus, the court ordered that the tube feedings would be continued. As of 2001, Michael Martin was still alive. ANALYSIS All three of these cases present landmark changes in the way the judiciary system explores the controversy surrounding dying with dignity. Each case can be an example as to why advance directives are so important.
Much of the hardship and suffering endured by these families could have been prevented had proper medical directives been in place. Although in every case the accident victims were in their 20’s and 30’s, the testimonies of their families indicted that the thought of their own death had crossed their mind at some point. The unfortunate consequence of Karen Quinlan surviving her respirator removal for 10 years post-withdrawal was simply a physiologic response, not her “will to live” as some opponents argued.
After more than a year of assisted breathing Karen’s breathing reflexes had stabilized enough to sustain her lung function even after the respirator was removed.5 Though she had at one point voiced a disinterest of having her life sustained on a breathing machine she had never voiced any such regard for having a feeding tube, which in the end is what kept her alive. This demonstrates the absolute importance that advance directives are clear, explicit, unambiguous and of utmost importance, documented. Karen’s body could have come to rest a lot sooner were it not for the lack of directives. The case of Nancy Cruzan follows in the footsteps of Quinlan in that she too had voiced through circumstantial conversations her disdain for “living” on a respirator and in a vegetative state. Before her accident Nancy had had some experience working with patients on respirators and had made passing comments to friends and coworkers about “not wanting to end up like that.” The caveat for Nancy was that though her comments were heard, they were subjective and evidence of neither a clear nor convincing nature.
Again, advance directives were neither established nor documented and therefore “clear and convincing” burden of proof could not be ascertained from her ‘wishes’. Speaking plainly about what you do or do not want done and documenting all aspects of your advance directives is the best way to protect yourself from an undignified death. Michael Martin’s case was complicated by family disputes and the appearance of alleged secondary motives that clouded the case for his dignified death. Family’s involvement can be a blessing or a curse when it comes to deciding how to interpret their loved ones wishes. When instituting advance directives it is important to establish a durable power of attorney that you trust to carry out your intents should you become incapacitated like Michael did. Mary Martin was Michael’s best ally in his fight, but in the end he couldn’t protect her from the courts or his family. The DPOA is a binding agreement and can help protect those you love from unnecessarily painful negative allegations and distress.5 RESOLUTION Broaching the subject of preparing for death, especially when a patient is neither sick nor dying, can prove to be a difficult task for physician.
Patients find it even harder to ask their doctors about the taboo subject, as if talking about it brings it imminently closer. When it comes to advance directives and physicians it’s a “chicken and the egg” dilemma, you can’t have one without the other. It therefore becomes more important for physicians to acclimate to this age of preparation and rely that patients want to hear what they have to say; likewise patients must be open to the notion that advance directives are not going to bring death closer, simply prevent unexpected issues from worsening. Approaching your physician with an open mind to the process can make everyone involved more comfortable. Doug White, director ethics and decision-making at the University of Pittsburgh Medical Center states, “There’s a real hunger for [AD] information, even though it’s emotionally difficult to hear.” Advance directives are a necessary and often not-talked-about part of life. If we can learn anything from these cases it is that advance directives should be thought about early, prepared completely, documented properly and stored safely.
Due to the unpredictability of life and its many potential pitfalls, the only way to navigate it is by being informed and prepared. Advance directives should use clear and concise language that outlines the who, the what, the where, the when and the why of how you want your wishes enacted. Multiple copies of your advance directives should be available; a hardcopy at home and an electronic copy as part of your medical record should be maintained and kept up-to-date. The elderly and chronically ill may also wish to carry a POLST on their person in case of emergency trips to the hospital occur or a medical identification bracelet can be made to outline instructions. Above all know that you are in control of your own life and your own death, advance directives help you to do both. CONCLUSION Over the past century, death and sex battled it out to be the number one unmentionable in America; these two topics were most reflective of our shame and embarrassment when it comes to all corporeal matters.1 Natural death is an inevitable part of life, and preparing for that is easy; sudden and non-precipitous death is what takes the planning, and it’s what everyone wants to avoid. It is possible, however, to prepare for a ‘good death’ with an advance directive and effective power of attorney.12 In town of La Crosse, Wisconsin 96% of residents have an advance directive in place, the national average is about 30%. In this town, they are comfortable talking about death. In this town they are prepared for the unthinkable. In this town they are clear, concise and unambiguous about their wishes about how they want to be let go should that time come. In this town, they all sleep a little easier at night. RESOURCES 1.Samuel L, PhD. Death, American Style.
Psychology Yesterday 2013; https://www.psychologytoday.com/blog/psychology-yesterday/201306/death-american-style. Accessed March 7, 2014. 2.Institute NIoHNC. Advance Directives.
Medline Plus: Trusted Health Information for You 2005; https://www.nlm.nih.gov/medlineplus/advancedirectives.html. Accessed March 8, 2014. 3.Society AC. What is an advance directive? Advance Directives 2013; https://www.cancer.org/treatment/findingandpayingfortreatment/understandingfinancialandlegalmatters/advancedirectives/advance-directives-what-is-an-advance-health-care-directive. Accessed March 9, 2014. 4.McFadden RD. Karen Ann Quinlan, 31, Dies; Focus Of ’76 Right T Die Case. The New York Times. 19850612, June 12, 1985. 5.Directives L. Lifecare – Key Legal Cases. 2009; https://www.lifecaredirectives.com/key_legal_cases.html#Karen.
Accessed March 11, 2014. 6.In the Matter of Karen Quinlan, An Alleged Incompetent, 355 (Supreme Court of New Jersey 1976). 7.Lewin T. Nancy Cruzan Dies, Outlived by a Debate Over the Right to Die. The New York Times. 19901227, 1990. 8.Cruzan, By Her Parents and Co-Guardians, Cruzan et ux v.Director, Missouri Department of Health, et al, 497 (1990). 9.In Re Michael Martin, a Legally Incapacitated Person; Mary Martin, Guardian and Conservator of Michael Martin v. Leeta M. Martin and Patricia Major, 450 (1995). 10.Lewin T. Fight for Life of a Helpless, Brain-Damaged Man Goes to the SupremeCourt. The New York Times. 19960219, 1996. 11.Martin, Michael. Healthcare Ethics 2014; https://www.ascensionhealth.org/index.php?option=com_content&view=article&id=249&Itemid=173. Accessed March 11, 2014. 12.Andrews M. Prepare for a ‘good death’ with an advance directive and effective surrogates. Los Angeles Times. 02142011, 2011.
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