By Syard Evans
Buried amongst the Justin-Bieber-obsessed muck and slime of US media headlines, two recent comparable yet divergent stories shine an important light on an issue far too many people attempt to avoid discussing while many others are unable to circumvent the consequences of its impact on their lives. That issue is death. Specifically, these two stories don’t just highlight death; they draw attention to the complexities of death and the rights of all people to live and die as they wish – to live and die with dignity. As each account reminds us, death is as individualistic and distinctive as the life that comes before it.
The unique and complicated process of the transition between life and death has recently been illustrated in the affecting story of 13-year-old Jahi McMath  , the young California resident who went into the hospital for a routine tonsillectomy, experienced cardiac arrest after extreme bleeding following her surgery, and was pronounced brain dead by hospital authorities who then attempted to terminate life support interventions for the girl, despite her family’s objections to these actions. The hospital petitioned the court system for authorization to cease all life support services, and a month-long legal battle between the hospital and the family ensued. Eventually, the court ordered that the young lady be released from that hospital to her family, who took her to another medical facility for treatment, where she is reported to beimproving .
Simultaneously echoing and contradicting the story of McMath is the account of another woman, 20 years McMath’s senior, who was also recently pronounced brain dead by hospital authorities, Marlise Munoz . After collapsing on the kitchen floor of her Texas home, as the result of a blood clot in her lungs, Munoz was taken to the hospital where her family was informed that she, too, had no brain activity. However, unlike McMath, Munoz’s family was informed by hospital officials that because she was 14-weeks pregnant, she would be required by state law to receive life support services until her baby could be delivered, regardless of her previously communicated wishes regarding prolonged life reliant on machines and the desires of her family. Munoz had previously discussed with her husband that she did not want to remain on life support in the event of a situation such as the one she was experiencing; and after months of being denied the ability to let his wife rest in peace, Munoz’s husband petitioned the court system to request that Munoz’s body be removed from all life supporting interventions and allowed to complete the process of death that had appeared to have already begun with her brain. Specifically, Munoz’s husband filed suit against the hospital for ” cruel and obscene mutilation of a corpse “, and the court ordered that Munoz be pronounced dead and removed from all life sustaining support.
Each of these women experienced sudden and unexpected medical complications that leave many people astonished at her misfortune and petrified by the ever-present possibility that calamities such as these are possible and can happen to anyone at any time. Each of these women possessed a loving, caring family that was committed to her best interest and willing to fight and endure substantial pain to ensure her rights were protected and that she was respected as a human being. Each of these women encountered a medical service system that, based on an arrogant assumption of expertise and advanced insight, was willing to make a determination about the appropriateness of ending or prolonging the transition between life and death without adequate consideration of the patient and the family involved. Each hospital was willing to take legal action in order to execute the decisions made by the medical establishment. Each of these women should have been given the right to pursue life and death in a manner that was in agreement with her personal beliefs and value systems, and neither was afforded that right without a fight.
When considering the actions, reactions, and final outcomes of these stories, it is important to note the variances between them. Undoubtedly, the age of each woman factored into the desires and decisions of each family. For McMath’s family, it is easy to imagine that quietly letting go of a life that had only recently begun was impossible to consider without exhausting every possible treatment option. Munoz’s seniority provided her with the time and experience necessary to formulate and communicate her personal desires regarding the possible use of extreme measures for extending her life to her husband who was armed with this knowledge when facing what is likely one of the hardest decisions a family member could face. It is possible that, as a 13-year-old child, the extensive level of care that would be required to sustain McMath and meet her new level of need was not seen as a life change that would completely deplete her quality of life and was a welcome challenge for her family to be able to keep her with them; while, as a wife and mother, the change to Munoz’s quality of life was likely viewed as devastating and perceived by her family, and more importantly by Munoz herself, to be too painful to endure.
The location of events may have significantly influenced the actions taken by the medical professionals involved. In Munoz’s case, being a resident of the strongly anti-abortion state of Texas  definitely influenced the actions taken by medical personnel. This is a state that routinely attempts to prioritize the well-being of unborn fetuses as equivalent to or greater than that of the pregnant mother. Hospital officials believed that they were operating in accordance with a Texas state law by refusing to remove life sustaining interventions from a terminally ill pregnant patient  . In McMath’s situation, the fact that the hospital where she experienced devastating complications during a routine procedure was willing to petition a court of law for authorization to remove life support interventions could be indicative of an attempt to make a life-altering medical mistake go away quickly, although the exact motivation of such extreme action has not been clearly documented. It is clear that based on established case law in California, the hospital would have been within its appropriate reach to remove life support for an individual in McMath’s conditionif the family was in agreement . Obviously, the family was not in agreement, and the hospital attempted to proceed despite the families requests.
Most significantly, these two accounts differ in the area of desired outcome and appropriate conclusion. For two woman in relatively similar situations, one story ended successfully with the young woman being given the opportunity to continue to live, and one story ended successfully with the young woman being allowed to die. In each story, the outcome was desperately pursued by the family who loved each person dearly, and though completely opposite of one another, death for one and life for the other were the ultimate victories for each.
Successful Life and Death
How can two situations with such similar characteristics be considered successful when each ended with opposite outcomes? Better yet, how can any situation be considered successful when it ends with someone dying?
The reality is that death is a part of life and impossible to avoid. Regardless of where a person is currently in life, everyone is working toward death. No exceptions. However, death does not always come instantaneously, and individuals and families are often faced with difficult decisions regarding what degree they should fight to cling to life and at what point they should embrace death. When it comes to decisions such as these, there is no “right” answer. End of life decisions can only be appropriately made individualistically, from a person-centered perspective that considers an individual’s value system and empowers the person to take actions that support and uphold personal desires and beliefs. As human beings, we should all have the right to face the impending pain, suffering, and difficulty that may lie ahead and the right to decide that peace, comfort, and control in death are personally more important than “beating” it.
Understanding this and respecting death as a life event allows human rights advocates to consider that both life and death are areas that merits substantial struggle to secure and ensure the rights of all individuals. Currently, advocates focus significant effort and energy on securing the rights of all individuals in other important life events, such as marriage, parenting, and vocational pursuits. Unfortunately, not all individuals receive the same advocacy when it comes to their right to dignity and empowerment in life and death.
Consider Munoz’s situation had she been a single woman without strong family support or McMath’s experience had she been a child in state custody without a vested family to fight for her rights. It is likely Munoz’s body would have remained connected to life support machines and maintained as an incubation chamber for the fetus growing inside of her and that McMath would have been removed from all life sustaining interventions as soon as the medical recommendation was made.
Awareness and advocacy is increasing for individuals who face terminal diagnoses. Hospice services are available to assist terminal patients in navigating the transition from life to death and supporting and empowering patients to maintain control of their journey to the highest degree possible, ensuring the most peaceful, positive transitions possible. Considerable attention and research has been focused onbarriers to patients receiving hospice services and methods to increase access to hospice services  , including addressing financial restrictions and cultural barriers to services. Additionally, a number of states have passed laws providing options for terminal patients to take control of their transition into death by accessing medication to hasten death . These laws provide legal access to supports that now deceased physician, Jack Kevorkian, was convicted of second-degree murder for providing in 1999 , suggesting a degree of progress in the consideration of death, its transition, and the rights of patients to life and death with dignity.
Unfortunately, individuals who desire to exhaust all means possible to fight the transition into death frequently encounter limitations within the medical establishment, similarly to McMath’s encounters. Furthermore, individuals with disabilities whose conditions are in no way considered terminal frequently encounter suggestions from medical establishments that certain medical interventions would not be worth the distress and discomfort involved, despite the fact that such interventions are necessary to ensure longevity in life. These medical recommendations reveal a health-care system and overall society that often views the lives of individuals with disabilities as less valuable than the lives of individuals without disabilities. Because of this, many disability advocates have long fought against measures to secure access to supports that seek to provide dignity in death, and understandably so.
Due to the contrasting perspectives, it is important for advocates to understand that the only way to support the life and death of an individual effectively is to support person-centered choices and services. Unfortunately, an over-authorized and authoritarian medical system often fails to take this approach and, instead, provides patients and their families information regarding options that the medical professionals value and support, not necessarily all the options that may be available for that specific patient. It is impossible to empower a person to make informed decisions and exercise control when you cannot first view that person as a valuable being who is, in fact, the ultimate expert of the life in question.
Human rights advocates must ask the same questions about a person’s right to live and die as they would ask about a person’s right to earn a living wage, enter into matrimony, parent a child, and practice a religious expression. Such advocates would never claim to know the exact person who an individual should marry or the specific vocation that an individual must decide to pursue. Instead, human rights advocates understand in these scenarios that only the individual can know the details of the decisions to be made, but advocates are vital to ensure that individuals are given the right to make those very personal and very important decisions. The right to dignity in life and in death is no different.
Only the individual can know the right decision, but large-scale advocacy is still necessary to ensure that when the time comes, individuals will have the right to make their decisions.