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Running Head: END OF LIFE DECISIONS 1 Faith & Reason Honors Program SENIOR THESIS Name Monica Lupin Thesis Title End of Life Decisions Thesis Sub-Title Thesis Director Natalie Cyphers, Ph.D. (Nursing) Year 2016 END OF LIFE DECISIONS 2 Abstract This paper discusses various factors in making end of life care decisions with a focus on life support and dying with dignity. Definitions on instruments used in life support are provided. The major ethical principles used in health care are discussed as well as factors that influence health care provider’s decision making. Advanced directives are discussed to demonstrate the struggle of health care providers when one is not in place. The case of Terri Schiavo is discussed and reviewed with a focus on morality and law as an example of the cessation of life support. The legality of euthanasia and mercy killing is discussed with depth. The argument of physician assisted suicide with a lethal dose of medication is brought to light in relationship with Brittany Maynard. Keywords: morality, life support, dying with dignity END OF LIFE DECISIONS 3 End of Life Decisions People make decisions every day. Each choice has an effect on the person making the decision and the people around them. Some decisions are more personal while others become laws and regulations that other people must live by. The morality of the decisions are not always considered in the decision making process. End-of-life decisions are made everyday. Many factors influence the decision making process and affect the care team’s choices. One must be strong in his or her moral standing to address some of the difficult decisions made in end-of-life care in the health care field today. Modern health care technology and availability has greatly affected the end-of-life care processes used today by extending people’s longevity. The two main decisions that cause a dilemma are life support and dying with dignity as a person choses how he or she wants to die. These end-of-life decisions have great ethical dilemmas that must be addressed and acted upon for the proper care of patients in these situations. Death is a topic that some people find difficult to discuss. Other people seek death to escape the pain associated with it. Every situation is different, but just because the means are available, does not necessarily make the action right. How many times has that phrase been said? Death is a difficult topic and is usually not a part of everyday conversation, but people need to consider the moral question of death so when the situation arises, they can make the morally right decision, though it may be a difficult one. There is a fine line between suicide and death that causes a lot of moral controversy. With today’s healthcare technological advances, people’s lives are being extended. It also increases the difficulty of a physician’s decision making in continuing care for patients in intensive care unit settings. The technology extends the patients’ lives, but may result in the END OF LIFE DECISIONS 4 patients relying on the technology to survive whether they are conscious or unconscious. The dilemma occurs when the physician must make the decision to continue care that will result in no regressive change for the patient or to discontinue the care with the knowledge that the patient will die shortly afterwards. The physician is not the only person providing care for the patient. He collaborates with a team of nurses and other physicians as well as social workers to determine the best outcome for the patient. Family members are also included in the decision making process and may disagree with the physician’s decision to discontinue care. Many factors influence the decision: cost, empathy, morals, education, advanced care directives, and the ideology of most physicians to cure the patient using any means possible. It is a difficult decision to make. Life Support Many technological advances have made the physician’s end-of-life decision making more difficulty. Life support is usually initiated when a person’s heart, lungs, or brain stops working. Life support is defined by Taber’s Cyclopedic Medical Dictionary as, “any technique, therapy, or device that assists in sustaining life,” (Venes, 2009, p. 1395). When a person’s lungs fail, they are usually placed on a ventilator. There are various types of ventilators used to help a person breathe. Controlled ventilation gives a preset volume or pressure regardless of the person’s respiratory efforts. The controlled ventilator is used for patients with apnea, a temporary cession of breathing. Assist-controlled ventilation gives a breath with the patient breathes and provides a breathe when the patient does not take one for a set amount of time. It is used for patients who can breathe on their own but their respiratory muscles are weak. To wean a patient off of mechanical ventilation, synchronous intermittent mandatory ventilation (SIMV) is used. It synchronizes breaths with the patient’s respiratory effort. Pressure support ventilation may be END OF LIFE DECISIONS 5 used in conjunction with SIMV to assist with the effort of breathing as the patient inhales. These are the main ventilator modes used for patients who have difficulty breathing. Many end-of-life decisions involve the removal of the ventilator with the knowledge that the person will die soon after removal because they have no respiratory support. When the patient’s heart begins to stop working, multiple measures are in place to start it again. Cardiopulmonary resuscitation is a major intervention that may save the patient’s life. It involves performing chest compressions and the administration of oxygen to keep the heart beating. A defibrillator may be used to shock the patient’s heart back into rhythm. Anti-rhythmic medications are administered to help prevent the patient’s status from deteriorating again. Dialysis is another form of life support because it performs the function of the kidneys for people with kidney failure. It does this by filtering the person’s blood and removing toxins that become harmful if they remain in the body. The respiratory, cardiac, and nephrotic systems of the body are interconnected. If one fails, the other two have to compensate for it. After a while the systems that are compensating are overexerted, and they begin to fail as well. Nutrition and hydration are important factors in a person’s well being too. When a person is unconscious or on a respirator, he or she cannot obtain nutrition orally. He or she will receive nutrition through an intravenous catheter or through a percutaneous endoscopic gastrostomy (PEG) tube that administers nutrition through the abdominal wall. The formula administered is usually specific to the person’s individual nutritional needs in vitamins and nutrients. Without these tube feedings, the person would not receive the nutrition he or she needed to survive. Each of theses interventions has a purpose in keeping the patient alive. Depending on the patient’s condition, the person can be weaned off of these treatments and back to optimal END OF LIFE DECISIONS 6 functioning. For a person with a critical condition or near the end of life, removing these supports will allow them to continue on the natural process to death. It is the physician’s job to explain to the family members the risks, benefits, and side effects of placing their loved one on these support systems.They also need to understand what may occur when the physician discontinues the order for the support systems. Advanced Directives In 1991 the Patient Self Determination Act was enacted. This Act instituted four things. It required that health care institutions: • give the patient a written summary of their health care decision-making rights and the hospital’s policy to respect the patient’s advance directives upon admission to the institution • must ask if the patient has an advanced directive and document whether the patient has one. • will not discriminate on whether the patient has an advanced directive • will educate the staff and community on advance directives. (American Bar Association, 2016). If the patient does not have an advanced care directive, information will be provided about what they are so the patient can make an informed decision about having an advanced directive. An advanced directive is “a written document in the form of a living will or durable power of attorney prepared by a competent person and specifying what, if any extraordinary procedures, surgeries, medications, or treatments the patient desires in the future if the patient should become incompetent to make such decisions,” (Venes, 2009, p. 56). They are legal documents that are incorporated into the patient’s chart so the physician can know what the patient’s end-of-life plan END OF LIFE DECISIONS 7 of care is. Most advanced directives address whether the patient wants to use respirators or dialysis, whether the patient wishes to be resuscitated, whether tube feedings can be used, and whether the patient would like to donate organs or tissues in the event of death (Marquis & Huston, 2015, p. 109). Advanced directives are helpful to physicians in guiding them to perform the action that the patients want to happen in their care. A healthcare proxy or durable power of attorney for health care is an important part of the patient’s advanced directive. This person is an agent designated to make decisions for the patient if he or she is unable to do so (Tabloski, 2014, p. 266). It is important for the patient to discuss with his or her chosen power of attorney their plan for end of life care so the power of attorney knows what the patient wants to happen. It is helpful if the power of attorney is close with the patient, and the patient is comfortable sharing his or her plans with the person. This way the power of attorney has a greater understanding of the patient’s wishes should the patient be unavailable for clarification. The American culture, however, does not prefer to discuss the topic of death. Death is not seen as a natural event in the life cycle. “People in the United States do not typically have aging family members in their homes and are uncomfortable with coping with end-of-life issues,” (Beaty, 2015, p. 313). Many people do not have an advanced care directive. According to the American Cancer Society, if a person does not have an advanced directive, the patient’s spouse is usually the power of attorney in some states if they are not divorced. If there is no spouse, the adult children, the parents, or the siblings can choose the plan of care. The courts may also appoint someone to be the patient’s power of attorney (2015). The difficulties that arise from this are that the power of attorney does not know what the patient wishes. Family members may disagree about what to do for their loved one. The problem with no advance care END OF LIFE DECISIONS 8 directive is the absence of the patient’s voice in his or her care. The patient may be resuscitated and placed on a ventilator when he or she never wanted to end up that way. Various factors affect whether a person has an advanced directive or not. People who are elderly are more likely to have an advanced directive than younger people because they are closer to the end of life. However elderly people are not the only ones who must receive end of life care. Some of the disease processes that may result in end of life care for any stage of life are terminal cancer, traumatic injury, and drug overdose. A study by Van Scoy, Howrylak,Nguyen, Chen, and Sherman investigated the factors that influenced people to obtain an advanced directive for themselves (2014). They found that “age, religious affiliation, number of children, number of comorbidities, admission with a chronic disease, having made end of life decisions for someone else, and who asked the patient about advanced directives” all impacted whether a person had an advanced directive (Van Scoy et al., 2014, p. 1101). A person who was widowed and had multiple adult children was more likely to have an advanced directive as was the person with multiple comorbidities. “Patients who had made decisions for another were 2.5 times more likely to possess a living will and 3.5 times more likely to possess a health care proxy,” (Van Scoy et al., 2014, p. 1105). When health care providers asked their patients about an advanced directive, the person was more likely to get one afterwards because the health care provider made the person aware of an advanced directive. Education is an important factor in advanced care directives. When people understand its purpose, they are more likely to create one. The patient needs to discuss their intentions for the care provided with his or her health care proxy so that person can make accurate decisions in the patient’s stead. Though an advanced care directive expresses the patient’s wishes, the physician does not have to follow them. They are used as legal protection for the care provided because it is what END OF LIFE DECISIONS 9 the patient wanted. However, if the decision goes against the health care provider’s conscience, is against the institution’s policy, or violates the accepted health care standards, the health care provider does not have to follow the advanced directive. Ethical Principles The Belmont Report was issued in 1987 and outlined three major ethical principles to be used in regards to the conduction of research. The three principles are beneficence, respect for human dignity, and justice. Each of these apply to the care to be provided for people in the endof-life stages. Beneficence is to minimize harm and maximize benefits; above all do no harm. This principle is a standard for all health care providers, and also makes it difficult for them to not provide curative care for the patient because they see death as harm. Respect for human dignity involves the right to self-determination. The patient has a right to determine what the best care plan would be for him or her. Justice “relates to fairness in distribution or what is deserved. An injustice occurs when some benefit to which a person is entitled is denied without good reason. Another way of conceiving the principle of justice is that equals ought to be treated equally,” (Beaty, 2015, p. 302). Each of these principles are important to consider when caring for a patient. Autonomy is another important ethical principal when considering patient care and endof-life concerns. It promotes self determination and freedom of choice. The person has the right to choose what interventions may be used when it comes to his or her care. It is important that the patient understands what he or she is choosing. In order to do that the patient needs to receive informed consent. Informed consent is given by the physician. The physician must explain • the procedure to be performed END OF LIFE DECISIONS 10 • the risks involved • expected or desired outcomes • expected complications or side effects that may occur as a result of treatment • alternative treatments that are available Without knowing the risks involved or alternative options available, the patient could not make an informed decision. The nurse’s responsibility is to ensure that the patient understands the procedure. The healthcare proxy has the right to this information as well so he or she can make an informed decision for the incompetent patient. The patient has the right to not be resuscitated should he or she go into cardiac arrest. The health care providers also have this right. They have the right to decide whether to follow the patient’s advance directive or follow their instincts. “The belief in individualism and autonomy … has been a part of the American heritage. This has emerged in the United States as a focal issue with decision making for the dying. … Patients with decision-making capacity can refuse life-sustaining treatment. Those who are incompetent can have surrogate decision makers appointed and states can require clear and convincing evidence of what would be the patient’s preferences,” (Beaty, 2015, p.313). Conflict arises when the autonomy of the patient and the autonomy of the health care provider are at odds. Compromise needs to occur or an understanding needs to be reached. Many times the patient’s autonomy takes precedence over the health care provider’s autonomy. Legal Intervention Since 1976 when Karen Quinlan’s father had requested that his daughter be taken off of respiratory support, the United States judicial system has been involved in the end-of-life debate. END OF LIFE DECISIONS 11 When patients receive informed consent, they must be able to understand the medical problem, evaluate the treatment options, and communicate a choice of treatment. If it is questionable whether the patient is competent enough comprehend and communicate these processes, the court will determine whether the patient can provide consent or require a healthcare proxy to do so for the patient. A healthcare proxy is determined by the relationship to the patient. “Generally, in order of priority the decision maker is the spouse, an adult child or children, a parent or parents, an adult sibling or siblings, and an adult relative or relatives,” (McGowan, 2011, p. 66). Unless the patient communicated with a family member, there is no knowing for certain what the patient would want concerning his or her care. The courts play a significant role in patient care decisions when an advanced directive is not present. The courts use one of two methods to determine the end-of-life care to be provided to the patient. The first is the substituted judgement standard where the proxy tries to determine what the patient would want if he or she were competent. The second uses the criteria for the patient’s best interest. The healthcare proxy is given all of the treatment options with their risks and benefits. The proxy then chooses the option where the benefits outweigh the risk of the treatment (McGowan, 2011). For the most part, the judicial system is not involved in the end-of-life decisions. Physicians or family members may take their cases to court if they disagree with a decision on the patient’s care. Terri Schiavo One of the most popular and recent court cases involving end-of-life care is the case of Terri Schiavo. At age 27, she went into cardiac arrest supposedly from a potassium insufficiency. It was determined that she was in a permanent vegetative state. Since she was young, she did not have an advance directive. Her husband became her healthcare proxy. In 1998, he decide to stop the parenteral nutrition she was receiving. Her parents, however, disagreed with the decision and END OF LIFE DECISIONS 12 took the case to the judicial system saying that she was not in a vegetative state, though all of the clinical signs indicated that she was. The courts continually overruled the parents. Finally the feeding tube was removed and Terri Schiavo passed away in 2005. Terri Schiavo. Retrieved from http://www.theinterim.com/issues/euthanasiasuicide/13-days-that-changed-my-liferemembering-terri-schiavo/ This case brought forth the ethical debate of end-of-life care. The media popularized the case and many American citizens accused Mr. Schiavo of euthanizing his wife. The woman was in a persistent vegetative state defined as: A continuing and unremitting clinical condition of complete unawareness of the environment accompanied by sleep-wake cycles with either complete or partial preservation of hypothalamic and brainstem autonomic functions. The diagnosis is established if the condition is present for one month after acute or non traumatic brain injury or has lasted for one month in patients with degenerative or metabolic disorders or developmental malformations (Venes, 2009, p. 1784). END OF LIFE DECISIONS 13 Ms. Schiavo had been unconscious for eight years when her husband decided to stop the nutrition. She was not going to wake up, but she was not dying either. Some of the arguments her parents used in the courts was that new technology would bring her back to a state of consciousness though none were effective. If Ms. Schiavo had woken up after fifteen years of unconsciousness, would she have appreciated being kept on for so long? She would have missed fifteen years of her life. Had the Supreme Court ruled in Ms. Schiavo’s favor, she would most likely still be in a vegetative state today. Is that a good quality of life? Certainly she would have lived for a long time, but there was no quality to that time. She could not communicate with anyone nor could she live with out support. If the medical technology was not there, Ms. Schiavo would have died shortly after the cardiac arrest for lack of nutrition. This case is very significant in the end of life discussion. There are many different angles to look at the situation: morally, legally, the quality of life. Ethical laws and legal laws do not always coincide with each other. Medical technology complicates the situation even more as it prolongs people’s lives whether they are actively dying or in a vegetative state. Physicians and family members need to review their intentions in removing life support when the consequences are usually death. Do they stop treatment to allow the patient to continue dying, or do they stop treatment because too many resources and cost go into maintaining the person’s health? These questions need to be answered when making end-of-life care decisions. Familial Experiences End of life decision making is difficult for the friends and family of the person dying especially if the dying process was unexpected. Family members handle the situation in different ways. Different family members may be at different stages of the grieving process. Kübler-Ross END OF LIFE DECISIONS 14 identified five emotional stages to the grieving process that a person may go through with any loss. They are denial, anger, bargaining, depression, and acceptance. They may occur at any time during or after the dying process. Not every one experiences all five stages and some stages last longer than others do. It depends on the person. The process usually begins with denial. The person does not want to believe that their loved one is dying. He or she may become angry that the patient is dying now and that it is not fair that the person should die. The family member may attempt to bargain with God, praying that they will do anything if only the patient’s condition would improve. A person may remain in the stage of depression for a long time, especially if they have not made amends with the dying person. When a person reaches the acceptance stage, he or she is more at peace and has come to terms with the situation. There has been some witness to two ends of the grieving process. One patient was in the intensive care unit. She was on a respirator, receiving dialysis, and receiving parental nutrition. She was an elderly patient whose condition was getting progressively worse. The patient’s daughter lived with her mother at home and cared for her for the past few years. She expressed that she was not ready for her mother to die and was determined to hear only news of the patient’s recovery. The physicians and nurses did their best to explain the patient’s condition to the daughter and that it was rare for people with the patient’s condition to recover. The daughter held onto that hope and would not hear any talk of the patient dying. She prayed for her mother to get better so she could come home. The daughter’s faith in her mother’s recovery was admirable, but she was denying the possibility that the patient would die. It must have been difficult for the daughter to accept that her mother would die because her mother was her entire life. Many other people like the daughter struggle to accept the dying process and encourage the health care team to perform more tests and administer more medication to keep the patent alive. END OF LIFE DECISIONS 15 It is difficult for the family members to realize that the patient’s condition will not improve and accept that death is forth coming. In another case, the patient’s family members were receptive to the possibility that the patient may die. The elderly patient was on a medical surgical unit and was often disoriented and spoke to people who were not present and would fall in and out of sleep. The patient’s adult children visited with her, but knew the patient was not herself. During one encounter, the patient’s daughter hugged her mother and told her that she understood that she could die. The daughter told her mother that her family would miss her, but they would understand if she chose to stop fighting to hold on to life and welcome death to be with her deceased loved ones. This patient was elderly and had been in the hospital for a period of time so her family may have had more time to accept that she was near the end of her life. Most people have a harder time reaching this stage of acceptance while the patient is alive, especially in the United States. Americans try put off death for as long as they can as the daughter in the first situation did. Though she had faith and belief in God, she would not accept that her mother may soon join Him. The daughter in the first scenario also had faith in God and accepted that it was almost her time be with God. Just because one has faith in God, does not indicate that he or she will accept the dying process. Catholic Teaching Many of the end-of-life issues are moral ones. When deciding to take a person off of life support, one must look at the intention of the action of removing the treatment from the patient. “The natural law and the Fifth Commandment1 requires that all ordinary means be used to preserve life, such as food, water, exercise, and medical care,” (Donavan, 2011). The Church END OF LIFE DECISIONS 16 does recognize however that a patient does not need to pursue extraordinary care measures in order to remain alive. The Catechism of the Catholic Church states, 2278. Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of "overzealous" treatment. Here one does not will to cause death; one's inability to impede it is merely accepted. The decisions should be made by the patient if he is competent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected. The intention of the action cannot be to cause death, rather it is to allow the patient who is actively dying to to continue the process unimpeded by medical treatment. The person must be actively dying. In Terri Schiavo’s case, she was not actively dying when her husband decided to stop nutrition. She was in a stable state of living that did not involve her full consciousness. Removing the nutrition caused her to die. If a normal health person on the street decided to stop eating, he or she would die as well. In each of these cases the person is not actively dying before nutrition was stopped. In the case of Karen Ann Quinlan, the decision to stop life support would allow her to continue on death’s natural process. Ms. Quinlan was brought to the hospital after apparent drug overdose and her heart had stopped beating for two fifteen minute periods (McGowan, 2011, p. 65). She was nonreactive to deep pain and was treated by being placed on a ventilator and had a feeding tube. Multiple attempts to wean her off of the ventilator are tried and failed. The health care providers determined her to be in a chronic and perceptive vegetative state. Her father, acting as power of attorney decided to take her off of ventilative support. Though Ms. Quinlan END OF LIFE DECISIONS 17 was in a vegetative state, her lungs would not work properly without the assistance of the ventilator. This was an extraordinary care measure used to extend the patient’s life. Her father decided to allow the natural body process to take place. Nutrition was still provided, but without the respiratory support, Ms. Quinlan died. “The omission allows nature to takes its course. It does not directly kill the person, even though it may contribute to the person dying earlier than if aggressive treatment had been done,” (Donavan, 2011). Health Care Provider’s Perspective The main areas of health care that experience a decision to transition from curative care to palliative care are emergency rooms and intensive care units (ICU). In curative care, intervention are performed to keep the patient alive with the intention of improving the patient’s health status. Palliative care “encompasses a wide range of therapeutic interventions that aim to prevent and relieve suffering caused by multiple issues,” (Pellico, 2013, p. 33). When the shift toward palliative care occurs, the patient care focus is on patient and family quality of life. It is a difficult transition for both the family members and the health care team as each have been focused on the pursuit of testing and machines to determine and improve the patient’s condition. It is emotional for the family and the health care team who have been working with the patient. Studies have been conducted to investigate the factors that most influence physicians and nurses in their care for terminally ill patients. A qualitative, phenomenological study by Charman and Esterhuizen investigates the physician’s perspective on end-of-life decision making. Some of the physicians interviewed found that empathy for the patient situation clouded their clinical judgement especially if the patient’s familial situation mirrored that of the physician. The physicians were distressed when they were consulted to make a decision on a case that they were END OF LIFE DECISIONS 18 not familiar with the patient. “All participants acknowledged difficulty in making decisions when patient wishes were not documented, particularly if patients were perceived as too unwell to include in conversations around escalation and limits of care,” (Carman & Esterhuizen, 2016, p. 90). This resulted in the physicians having difficulty in finding the proper time to discuss end of life care with the patient or family. Overall the decisions made by physicians concerning end-oflife care are affected by many factors. McAndrew and Leske (2015) explore the factors that affect nurses and physicians in end of life decisions. They explore how the two health care fields interact with each other and stress the importance of balancing each of the factors. The three themes were a) emotional responsiveness, b) professional role and responsibilities, and c) intentionally communication and collaborating. Factors that influenced the health care providers emotional responses included “personal beliefs about quality of life, patient and family beliefs about quality of life, feeling a connection with patients and families, and personal and professional experiences with end of life decision making, death, and dying,” (McAndrew & Leske, 2015, p. 362). Physicians had to come to terms with the fact that they could not save everyone. The nurses viewed their responsibilities as collaborating with everyone involved in the patient’s care, assuring the comfort of the patient and family, and advocating for them. The physicians considered their responsibilities to be seeking out information about the patient and family, presenting treatment options, and advocating for the patients. Both nurses and physician felt that presence and availability was important in their care for the patients and their families. Intentional communication and collaboration were important in the patient’s care as well. A team approach, shared goals, and understanding perspectives, and knowing one’s own beliefs were essential to good communication and collaboration. When there was an imbalance between the three themes, END OF LIFE DECISIONS 19 moral distress resulted. The members of the health care team would become stressed and the patient would not receive optimal care. The patient and family need an empathetic health care team that is willing to listen and discuss the situation with them and provide the support they McAndrew & Leske, (2015) A balancing act: Experiences of nurses and physicians when making end-of-life decisions in intensive care units. need. The health care team also need support from its members in its decision making and collaborative processes. By working together the team can best achieve its goals and collaborate with the family to support and address their concerns as well. Euthanasia Some decisions in end of life care involve speeding up death’s process. Euthanasia is “the deliberate ending of the life of people with an incurable illness or terminal illness or unbearable END OF LIFE DECISIONS 20 suffering. (Venes, 2009, p. 858). This is illegal and considered an act of murder in most countries except the Netherlands. It is different from withdrawing or withhold life sustaining therapy because the therapy is preventing the patient from dying. Withholding the therapy would allow the patient to continue on death’s natural process and is the patient’s right to decide whether they want to remain on such therapy. Euthanasia causes actual death. The patient may be suffering or cannot be cured by any therapy, but they do not require life sustaining therapy to remain alive. Active euthanasia, or mercy killing, “occurs when a person, usually a physician or nurse, performs an act to end a patient’s life,” (Venes, 2009, p. 858). There has been a history of health care providers making their own decision that the patient’s suffering should end and administering a lethal injection of a medication. It is not within the physician’s rights to determine whether a patient should die because of too much suffering. It violates the patient’s rights to autonomy and goes against the ethical code of beneficence to above all do no harm. Pope John Paul II discussed the topic of euthanasia. He said, “"by euthanasia in the true and proper sense must be understood an action or omission which by its very nature and intention brings about death, with the purpose of eliminating all pain"; such an act is always "a serious violation of the law of God, since it is the deliberate and morally unacceptable killing of a human person" (n. 65),” (Donovan, 2011). For a period of time, nurse Charles Cullen, performed mercy killings to his patients in various hospitals in Lehigh Valley, Pennsylvania. The man would kill his patients who were suffering by injecting them with lethal doses of medication. Most medications are safe because they are given at a low dosage over a period of time in order to be effective. Any medication can become lethal if too much is given. He killed one patient by giving her a large amount of insulin. A newspaper article by McDermott (2003) reported the investigation findings of the accused. END OF LIFE DECISIONS 21 Charles Cullen admitted to killing thirty to forty patients in sixteen years. “Forrest said Cullen would access the drugs through a computerized disbursement system, then access the patient's computerized medical records. After receiving the drugs from a motorized dispensing cart, he would then cancel the order through the computer to hide the acts,” (McDermott, 2003). This was an extreme case of mercy killing. Unfortunately, some patients request aid from physicians to end their suffering. It is easy for physicians to begin instituting these actions of overdosing a patient whether intentionally or unintentionally. Part of palliative care is to ease patient suffering by providing them with medication that will help ease the suffering. For some patients, it is not enough. Perhaps the knowledge that they are going to die eventually pushes them to seek more active measures towards death. They take the term “death with dignity” to the next level by requesting medical assistance with death. Physician Assisted Suicide “Assisted suicide is a broad term referring to the involvement of a second party in the termination of a consenting person's life,” (Acker, 2015). Taber’s Cyclopedic Medical Dictionary (2009) defines it: Providing a patient with the means for ending his or her live (usually a prescription typically provided by a physician for a lethal dose of barbiturates), with the provider knowing that the patient indeeds to use it to commit suicide. The patient must be physically and mentally capable of committing suicide and is the one who takes the END OF LIFE DECISIONS 22 action to end his or her life and must be physically and mentally capable of committing suicide. In the United States, Oregon, Washington, and Vermont allow terminally ill patients to receive a prescription from their physician for lethal doses of medication to be taken at a time determined by the patient. Alaska’s Representative, Harriet Drummond introduced House Bill 99 to allow terminally ill patients the opportunity to relieve their suffering. Taking one’s own life is a sin. Whenever someone expressions their intention to commit suicide, help is given to them to encourage them to live, not hand them a gun to commit the act. Yet society is sympathetic towards terminally ill people who want to end their suffering and some members of society encourage them. Physician assisted suicide is not different from suicide. In each of the cases, the person has the intention of killing himself or herself. One is suffering physically while the other is suffering mentally and emotionally. If a person with mental illness expressed the intention to commit suicide, he or she would be taken to a mental health facility and helped to review the thought processes and given referrals for support and given mediation to help their underlying condition and thought processes. When someone with terminal illness wants to end their suffering with suicide, they are given medication to end their life. This is a double standard. It goes against the ethical principle to do no harm. The patients must be competent to request the medication. The process is still euthanasia if the patient gives consent for a prescription of a lethal dose of medication. It is called voluntary euthanasia. This places the physician in a morally difficult position. If the physician denies the patient the prescription, he knows the patient will most likely search for another physician to write the prescription. If the physician writes the prescription, he is enabling the suicide even if the patient has the choice of when to administer the medication. END OF LIFE DECISIONS 23 Brittany Maynard On November 1st, 2014, Brittany Maynard took medication that ended her life. She was diagnosed at age 29 with terminal brain cancer. After discovering that recovery was unlikely, Ms. Maynard began looking for other alternatives. She knew that she did not want her family to see her suffering. She writes, “I probably would have suffered in hospice care for weeks or even months. And my family would have had to watch that. I did not want this nightmare scenario for my family, so I started researching death with dignity,” (Maynard, 2014). Ms. Maynard moved to Oregon and established residency in the state. She was able to obtain the medication she sought and continued to live her life. Her plan was to die peacefully with her family surrounding shortly after celebrating her husband’s birthday. This is her reasoning for using physician assisted suicide, “I am not suicidal. If I were, I would have consumed that medication long ago. I do not want to die. But I am dying. And I want to die on my own terms,” (Maynard). She END OF LIFE DECISIONS 24 expressed a sense of peace at having the option to take the medication calling it her “safety net” for life. Brittany Maynard. Retrieved from http://alumni.berkeley.edu/californiamagazine/just-in/2015-10-05/taking-control-facing-terminal-diagnosis-brittanymaynard Despite what Ms. Maynard says, her actions are suicidal. It is understandable that she does not want to suffer or have her family witness her suffering, but it does not give her the right to kill herself. She posed these questions, “Who has the right to tell me that I don't deserve this choice? That I deserve to suffer for weeks or months in tremendous amounts of physical and emotional pain? Why should anyone have the right to make that choice for me?” (2014). She does not have the “right” to kill herself even if her intentions were to ease her pain and suffering. It is selfish of her to decide that her live is no longer worth living. She says that she did not want her family to see her suffering, but they may have suffered in secret knowing that at any day, she END OF LIFE DECISIONS 25 would choose to end her life. She chose the easy route. Suffering is brutal but it can bring people together in their support for the sufferer. Much of the American society applauds Brittany Maynard’s actions. She was able to die on her own terms and with out any suffering. The media shared her story. Legally she was able to exert her rights as a patient with terminal illness to die with dignity. Morally, she took her own life so she would not have to suffer. She exercised the ethical principle of autonomy but for the wrong reasons. She thought what she did was right and sought to provide aid and support to others who are diagnosed with terminal illnesses as well. Why does society applaud the efforts of people committing suicide because they have a terminal illness? There is a beauty in suffering in that it draws people closer to Christ. Physical suffering is painful, but it does not give the person the right to take his or her life. People suffering from depression are discouraged from taking their lives. They suffer as well, but mentally instead of physically. Brittany Maynard’s case has changed society’s view on death and dying by bringing to light the option of avoiding suffering. A dying person should not have to become witness to suffering if they do not have to. Other states in the United States are working to have legislature passed so the option of “dying with dignity” is available in their state as well. Alaskan Representative Harriet Drummond believes that Alaskans should have the opportunity to control the end of their lives so they interact with family members without having to leave the state. She says, “I think this law could actually help stop otherwise healthy people from taking their own lives by recognizing risk factors and getting them the treatment they need. This bill specifically requires the request process to stop immediately if there is any evidence of coercion. The bill further requires that two physicians who work regularly and closely with terminally ill patients to be involved throughout the request process. I believe this bill is especially important for END OF LIFE DECISIONS 26 Alaskans because we shouldn’t have to travel out of state for aid in dying,” (Drummond, 2016). With this proposition she refutes herself. She believes that the new legislature will help screen for people with depression who are looking to commit suicide and need medical assistance. She then continues to say that the legislature will help physically ill patients commit suicide because they are mentally competent. Someone who is depressed is not incompetent in making decisions. They have the same reasons for seeking lethal dosages of medication as terminally ill people do. Society however puts terminally ill people on a pedestal when they decide to commit suicide before the natural death process takes place. Discussion The impending loom of death causes a lot of dilemma for a person. Medical technological advances have granted people the opportunity to extend their longevity. Ventilators, dialysis, defibrillators, parenteral nutrition, and medications have extended the functionality of people’s organs and systems of the body. These lead to the necessity of advanced care directives that allow patients to indicate what care they want to receive when they are unavailable to express their wishes. A living will outlines whether a patient wishes to be resuscitated or not while a power of attorney gives a surrogate the power to answer in the patient’s stead. American’s have difficulty discussing end-of-life plans with each other. While they understand that death is inevitable, most people prefer not to think about it. Family members refrain from discussing the topic with each other. It is important for people to openly discuss this topic so, should something happen, others have an idea of what they would like to be done. Older family members should be encouraged to fill out an advanced care directive so health care providers know what they want in the event that their condition becomes critical. Physicians also END OF LIFE DECISIONS 27 need to be open to discussing end-of-life care with patients. They can inspire families to discuss care options with one another. Terminally ill patients and their families may be more difficult to converse with especially if the patient is younger. By discussing end of life care, the patient, family members, and health care team can collaborate on the best care plan for that individual patient. The physician will provide care options with their risks and benefits and the individual can ask questions about each. The patient can then discuss each option with the family if he or she wants or can give informed consent for the plan of care, exercising autonomy. This does not always occur and complications arise. There may not be an advanced care directive so the physician has to make a decision on whether or not to provide live saving treatment. A health care proxy is appointed, but they do not always know what the patient wants. Sometimes the decision the health care proxy makes is disagreeable to the other parties involved. Family members may argue about treatment options with each expressing that would be what the patient would want. The topic of end-of-life care raises a lot of ethical debates. These debates usually concern observing the situation from a moral point of view and a judicial point of view. The two main discussions are 1. stopping life support 2. physician assisted suicide. The cessation of life support raises a moral dilemma because one must look at the intention of ending the support. Is the treatment ended because the person is not an asset to society and is not END OF LIFE DECISIONS 28 getting better? Is the treatment ended because without it, the patient would no longer be prevented from continuing on the natural course of death? These questions investigate the ethical side of the dilemma. Society often stands by the rights of the person. Occasionally these dilemmas are brought to the judicial system where the courts rule based off of the patient’s rights. Some rulings are based on their right to privacy while others are based on their right to determine treatment. This does not necessarily indicate that it is morally right as in the Terri Schiavo case. Though she was in a vegetative state, she was not dying. She had the right to receive the nutritional supplementation in order to maintain her health status. Her husband asked for it to be removed. This involuntary form of euthanasia became a national debate. The courts ruled in the husband’s favor and Ms. Schiavo did later from lack of nutrition. None of Ms. Schiavo’s organs were in need of assistance with medical technology, she just lacked the ability to feed herself. Society may bring up the argument of quality versus quantity of life. Terri Schiavo’s life was extended from the use of medical treatment of administering nutrition parentally. Some may argue that her quality of life was not good though. She was not conscious. All she did was lay in bed for years in a permanent vegetative state. Quality of life is a major factor that people consider when looking at end-of-life decisions. This factor is also considered when dealing with fetuses in the womb. Medical technologies allow expectant parents to test whether the infant will have any medical abnormalities such as down syndrome before the baby is even born. Based off of the results the parents may decide to keep or abort the baby because the feel that the child will not have a good quality of life though the chances of the actual abnormality is not guaranteed. END OF LIFE DECISIONS 29 Many people see their life as their own and consider it their right to do whatever they want with it. It may be morally wrong and infringe on others’ rights, but they were able to exercise their rights so the action is acceptable. Patient’s decisions in the hospital affect more people than the patient. The nurses and physicians caring for the patient are affected. A patient’s care decision may go against the health care provider’s own beliefs. They can refuse to provide the requested care for the patient, but they know that the patient will most likely find another health care provider who will administer the treatment the patient requested. Members of society should examine their thoughts and feelings about different topics. The argument of quality versus quantity of life depends the person’s moral and emotional ideology when it comes time to make that type of decision. A dying patient’s life can be extended, but is the treatment necessary? People need to have conversations on end of life care so they can examine their own views and biases towards patient care. They need to investigate all options so if the situation arises, they will have already thought about it and can make a more educated decision about it. The second major discussion for end-of-life care is dying with dignity. For health care providers and family members, the transition from curative treatment to palliative care is a difficult one as the patient prepares himself or herself for death. During palliative care, the goal is to provide comfort to the patient and to the family. The patients’ basic needs are met. They are kept clean, fed, comfortable, and given medication to ease the pain. They no longer have to undergo rigorous treatment or have examinations performed to determine the cause of the disease. This may be a difficult time for family members who are not ready to see their loved ones go. They are supported by the image of the patient being comfortable and well looked after. The health care team is also available to listen to the family members concerns and emotional END OF LIFE DECISIONS 30 feelings on the state of their loved one. The members of the health care team may also struggle during this time period because they are emotionally attached and are empathetic to the family member’s situation. Dying with dignity has come to incorporate physician assisted suicide into its definition. This is because terminally ill patients do not wish to experience suffering and do not want family members to see them suffering. They want to die on their own terms, not to experience the natural processes of death. Though society frowns upon suicide, it rejoices in ending suffering. No one wants to suffer, but suffering is a natural process of human life. There is everyday suffering in struggling to get work done, receiving a bad grade on a test, or getting injured on a sports field. There is mental suffering of worrying about finances, figuring out a difficult problem, or having to share bad news with a loved one. Stress is a form of suffering that everyone endures. Terminally ill patients are not the only people who suffer. Ending one’s life early to avoid suffering is not a viable reason. It is morally wrong to end one’s life. Suffering may bring out the best in people. Others who are not suffering may bring comfort to those who are. It brings people together. The United States grew closer after suffering the loss of the innocent people during 9/11. Having the right to do something, does not make it morally right. Unfortunately Brittany Maynard showed how easy it was to end her life with lethal injection. Society sees that and wants to be able to have that right as well. Soon lethal injections will be available for those without terminal illness. Elderly patients who are dying of chronic diseases will request the injections. Then people who decide to no longer live on life support will ask for lethal injections instead of going to palliative care. This will lead to mercy killing END OF LIFE DECISIONS 31 becoming a common practice. People need to stand witness the immorality of dying with dignity. Basic human rights will be violated as decisions will be made without consent. End of life care is a broad spectrum that encompasses many factors. Ethical principles are examined to determine the morality of decisions made by the people involved in end-of-life care decisions. Society does not always consider the morality of decisions made, rather it concerns itself with the rights an individual has to exercise. Using one’s right does not make the decision morally right. People need to have moral discussions to help them in the decision making process. By collaborating with others and reviewing all areas of a decision, a person can make a morally sound decision in their care for themselves. 32 References Acker, S., & Mitchell, N. (2015). Doctor-assisted suicide. Salem Press Encyclopedia of Health. 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