pp

Snapple_girl1

04CH_HealthCare_Bustillos.pdf

Home >Education homework help >pp

4Patient Empowerment and Rights to Die

Brian Kersey/Associated Press

Learning Objectives

After reading this chapter, you should be able to

1. Compare different forms of power in health care and their relevance to ethical organizational leadership.

2. Describe the patient empowerment movement.

3. Identify the differences and similarities between euthanasia and medical aid in dying.

4. Explain the rights allowed by advance directives and do-not-resuscitate orders.

Section 4.1Power in Health Care

Introduction When patients collaborate with their providers to achieve agreed-upon goals, they enjoy higher satisfaction with their care and benefit from better outcomes (Hibbard & Greene, 2013). Patients who feel powerless in their provider-patient relationship tend to respond defensively, even taking an adversarial stance, and are often deemed “noncompliant” by health care professionals (Becker, 1985, p. 539).

The ethical leader will want to distribute power evenly between the caregiver and patient in order to achieve better results and facilitate healing. In this chapter we will take an in-depth look at power dynamics in the health care setting. The first section explores different types of power held by health care practitioners, as well as the development of patient empowerment. In the second section, we will discuss the different types of control that patients hold regard- ing their medical care, especially concerning end-of-life care and the right to die.

4.1 Power in Health Care According to Bennis and Nanus (1985), power is the currency of leadership and the ethical use of it is essential to effective leadership. John French and Bertram Raven (1959) identified three kinds of power held by health care practitioners in their relationships with patients: legiti- mate power, expert power, and referent power.

Types of Power Legitimate power “resides in the posi- tion rather than in the person” (Hackman & Johnson, 2009, p. 141). Health care pro- fessionals and organizations are endowed with legitimate power due to their cultur- ally and legally sanctioned role and status in American society. Such power can be quite forceful in getting compliance from subordinates and was once the cultur- ally reinforced means by which doctors procured the quiet acquiescence of their patients. Legitimate power still carries weight in the United States, however, when compared to expert or referent power, it tends to lower follower task performance and satisfaction and often becomes less effective over time (Hackman & Johnson, 2009). This may be due to the fact that American

iStockphoto/Thinkstock Doctors have both legitimate power and expert power because of their status as legally sanctioned health care providers, their expert knowledge, and their training.

Section 4.1Power in Health Care

patients and consumers have become able to discern when the source of authority is merely a societal or cultural convention and when it is based on true expertise.

Expert power represents the influence that comes from an individual’s specialized skills and knowledge, rather than from the position or office held. In clinical relationships with patients, health care professionals are typically seen as experts in their field and therefore hold expert power.

The third form of power is what French and Raven (1959) termed referent power, or the influence wielded by a role model. This kind of influential power depends on the esteem and respect an individual garners due to his or her habits and characteristics over time.

Hackman and Johnson (2009) assert that while all of these forms of power can be useful for organizational leadership, managers should rely more heavily on expert and referent power than on legitimate power. Expert and referent forms of power have a “positive effect on the performance and satisfaction of those being influenced and are less costly to use. They are most likely to maintain a profitable relationship between leader and follower” (Hackman & Johnson, 2009, p. 143). This assessment can be applied to both manager-employee and prac- titioner-patient relationships.

The Ascendance of Patient Autonomy and Empowerment Until the middle of the 20th century, society viewed physicians as possessing unrivaled power and authority in the doctor-patient relationship (Starr, 1982). Doctors dictated what the patient must do and how the treatment would proceed. They treated the patient not as a collaborator, but as the subject on whom physicians practiced, exercising both legitimate and expert forms of power and expecting the public’s acquiescence in return for their services. However, Americans grew skeptical of power that they saw as deriving solely from pedigree or officiousness. In addition, scandals involving the abuse of power to coerce patients into doing things they would otherwise not resulted in the gradual erosion of the once unques- tioned authority of health care organizations and professionals (Rosenhan, 1973; Manoach & Goldfrank, 2002).

Despite the skepticism, the expert power inherent in the medical profession still entitles health care professionals to some deference on the part of patients and society in general. However, the common perception that doctors are the only experts in medical decision mak- ing is no longer viewed by American society as a universal truth. Health care professionals now realize that patients and their close family and friends are the experts in the domain of patients’ preferences and values, as well as how potential treatment options and prognoses will affect them. Without these important pieces of the medical treatment puzzle, health care institutions and professionals would struggle to discern what the best treatments are for par- ticular patients. Therefore, the sharing of power and authority between the experts at the bedside—the health care providers and family members—is not only expedient, economical, and efficient, but ethically appropriate and medically necessary.

As for the referent power that French and Raven (1959) described, it is up to health care professionals and leaders to earn this power by aligning their habits and character with the altruistic and ethical ends of medicine.

Section 4.1Power in Health Care

Patient Empowerment The collaboration between practitioner and patient has evolved into what is now called patient empowerment, an expression coined in the 1990s. Gibson (1991) defines empower- ment as the process of identifying and supporting a person’s capacity to address their own problems and needs, and to make use of the necessary resources to gain control of their life. Within a health care context, this definition can be modified to define patient empowerment as the process of recognizing, promoting, and enhancing patients’ knowledge, abilities, and opportunities, thereby better enabling them to collaborate with health care teams and mobi- lize the necessary resources to steer the delivery of health care and meet health care needs.

However, it is important to point out that patient empowerment is not just the process of empowering patients, but also its outcome (Manion, 2011). Through dialogue and open com- munication, patients and their doctors make better, more informed decisions while improving their combined decision-making skills over time. Patient involvement in the decision-making process not only cultivates more responsibility and control, it also fosters an investment in the patient’s own health.

As the character of health care reimbursement shifts from fee-for-service to episodic or out- come-based payment, the role of the patient and patient behavior become key considerations for providers. In the Accountable Care Organization (ACO) model, a healthy patient, having fewer episodes of care, means more income for the ACO. Similarly, the Affordable Care Act (ACA) established other demonstration projects that focus on patient outcomes, for example, “primary care medical homes” and wellness programs. A health home model for service deliv- ery focuses on the patient on a longitudinal basis to provide interdisciplinary coordination of the providers with the patient. Continuing the patient-centered approach, wellness programs seek ways to achieve wellness goals through patient involvement (Anderson & Funnell, 2010).

Another example of patient empowerment has been the recognition of the role of the parent in children’s hospitals. To understand this empowerment, we must first understand what a rapid response team is and what it does. The rapid response team is a group consisting of health care professionals—often including a physician, senior resident, intensivist or hospi- talist, physician’s assistant, critical care registered nurse (RN), clinical nurse specialist, and a respiratory therapist. The team is called when a patient is not progressing as expected and is tasked with quickly assessing the patient’s condition. Certain hospitals recognize parents’ special knowledge regarding their child, such as knowing when the child is not responding as expected, and authorize parents to call the rapid response team directly, unfiltered by the staff ’s clinical judgment. Other facilities have created patient councils to provide feedback regarding the effectiveness and benefits of care.

Sometimes, what passes for empowerment in large organizations is comprised of token words and policies, with only a semblance of actual power decentralization. Since the 1990s, orga- nizational administrations have sometimes found it difficult to share power even when the positive effects of empowerment are unquestionable. Though nearly all health care organiza- tions have shifted toward patient-centered models (which implies not only placing patients’ care and interests at the center of health care, but also elevating them to powerful and con- trolling roles when it comes to health care decisions), many health care organizations con- tinue to provide only token actions and policies to empower employees, staff, and patients. Some organizations even directly contradict patient empowerment measures through orga- nizational cultures, norms and policies.

Section 4.2Rights to Die: Euthanasia and Medical Aid in Dying

Patient empowerment has caused health care professionals to change their paradigm from increasing the compliance of patients to seeing the importance of collaborating with them. (Anderson & Funnell, 2010). Collaboration requires patient-centered communication designed to help the patient make informed, independent decisions about his or her care.

4.2 Rights to Die: Euthanasia and Medical Aid in Dying Many people confuse euthanasia and medical aid in dying. While they both are the purposeful act of dying, they are performed differently. Euthanasia entails a physician intentionally end- ing a terminally-ill patient’s life in order to relieve pain and suffering. Medical aid in dying, on the other hand, is when a physician provides a competent, terminally-ill patient with the means to end his or her own life.

Euthanasia There are three types of euthanasia: vol- untary, involuntary, and non-voluntary. Voluntary euthanasia is conducted with the patient’s consent and, as of 2018, is legal in the Netherlands, Belgium, Colom- bia, Luxembourg, South Korea, and Can- ada (Mehta, 2018). Involuntary eutha- nasia, which is illegal worldwide, is conducted without the patient’s consent and potentially against the patient’s will. Lastly, non-voluntary euthanasia occurs when another person makes the decision on behalf of the patient because the patient is unable to provide consent him- or herself. Non-voluntary euthanasia might occur when a non-responsive patient’s appointed medical surrogate, as indicated in an advance directive or do- not-resuscitate (DNR) order, makes the decision based on the patient’s wishes.

Euthanasia can be further classified pro- cedurally as either passive or active. Pas- sive euthanasia involves the withholding of life-sustaining treatments, such as tak- ing a patient off a respirator. While eutha- nasia is not legal in the United States, patients are able to voluntarily refuse, or designate someone to refuse on their behalf should they become incompetent, treatments which may prolong life. Some entities consider this voluntary or non-voluntary passive euthanasia. Qualification for and regulation of such decisions vary by state and are often dealt with on a case-by-case basis. Active

doble-d/iStock/Thinkstock Euthanasia and medical aid in dying are often spoken of in controversial terms, but at the heart of the issue are the rights of patients and the responsibilities of their care providers.

Section 4.2Rights to Die: Euthanasia and Medical Aid in Dying

euthanasia is the intentional use of lethal substances or forces to end a patient’s life. This form of euthanasia is illegal throughout the United States, regardless of whether it is voluntary, involuntary, or non-voluntary (Kennedy Institute of Ethics, n.d.). For a closer look into the his- tory of euthanasia in the United States, see the feature box entitled Case Study: Terri Schiavo.

Medical Aid in Dying While euthanasia is illegal in the United States, medical aid in dying is currently legal in Cali- fornia, Colorado, Montana, Oregon, Vermont, Washington, DC, and Washington State; how- ever, the patient must have a terminal illness and a life expectancy of no more than six months (Death with Dignity, 2018). Although historically the terms “assisted suicide” and “physician- assisted suicide” have been used to describe when a physician provides a patient with the means to end his or her own life, it is important to acknowledge that medical aid in dying is not the same as assisted suicide. The statutes allowing medical aid in dying uphold this dis- tinction, stating that they do not lawfully or in any way constitute suicide, assisted suicide, mercy killing, or homicide (Oregon Death with Dignity Act, 1997; Washington Death with Dignity Act, 2008; Vermont Patient Choice and Control at the End of Life Act, 2013; California End of Life Option Act, 2015).

One of the most notable, and most controversial, proponent of patients’ rights to die was Dr. Jack Kevorkian. In 1990, Dr. Kevorkian assisted his first patient, Janet Adkins, who was

Case Study: Terri Schiavo

There have been several landmark cases concerning euthanasia. One of the more memorable was that of Terri Schiavo. In 1990, at the age of 26, Schiavo suffered a cardiac arrest that cut off oxygen to her brain and resulted in massive brain damage. Following the incident, Schi- avo was comatose and, after months without improvement, was determined to be in a per- sistent vegetative state. After eight years and multiple attempts by doctors to return Schiavo to a state of consciousness, her husband asked the Sixth Circuit Court of Florida for permis- sion to shut down the machines keeping her alive. While she did not have a living will, her husband argued that Schiavo would not want to be kept alive through artificial means and would instead want to die with dignity. However, Schiavo’s parents challenged this request, believing she might one day regain consciousness. In 2005, after years of legal complica- tions, approval to remove Schiavo from life support was granted; she died shortly after.

Discussion Questions

1. In this case, Schiavo’s husband was considered the next of kin; however, Schiavo’s parents, who disagreed with her husband, fought for her life to be extended. Should other family members have the right to make decisions on behalf of a person who cannot think for him- or herself if they do not agree with the designated next of kin?

2. According to her husband, if Schiavo had created an advance directive, she would have included a stipulation not to be kept alive if she was considered braindead. However, Schiavo’s parents said they would still have fought this decision. Under what circum- stances, if any, should the beliefs and/or demands of a patient’s parents be considered above those stated in a patient’s advance directive?

Section 4.2Rights to Die: Euthanasia and Medical Aid in Dying

suffering from the early stages of Alzheimer’s, in ending her life. At the time, the American medical establishment widely opposed what they considered physician-assisted suicide and Kevorkian was the recipient of much criticism for his practices. However, Kevorkian argued that the focus of his work was the welfare of his patients and that “most American doctors failed their patients by not responding to their suffering” (Bernstein, n.d., para. 5). Despite obtaining patient consent, Kevorkian served two jail sentences in 1993 for his practices, after which he promised not to take part in any additional instances of aid in dying. However, in 1999 Kevorkian was convicted of second degree murder and the unlawful delivery of a con- trolled substance after video of him administering a lethal injection to a patient suffering from Lou Gehrig disease was shown on the television program “60 Minutes” a year earlier. He was sentenced to 10 to 25 years in prison; however, he was released on parole for good behavior after serving eight years. Though notable for controversy and his grim moniker, “Dr. Death,” many remember Kevorkian for his openness about patients’ rights to death and for helping more than 130 patients end their lives peacefully over the course of his career.

Arguments in favor of medical aid in dying include the claim that it is a more humane way to help patients end their lives in comparison to the potential pain and suffering of living with a terminal illness. While not all terminally ill patients choose this option, more and more patients are considering it in order to avoid suffering (Nordqvist, 2017). Regardless of why patients choose to end their lives this way, it is their choice, and as long as it is legal, it is also their right. However, despite current medical aid in dying laws in many states, physicians often require that both the patient and the family agree to medical aid in dying in order to avoid lawsuits after the fact (Nordqvist, 2017). There are some physicians, though, who do not believe in administering this type of treatment regardless of its legality. An oft-cited rea- son for this is that doing so goes against the Hippocratic Oath, which includes a promise to save patients’ lives (Kass, 1989). However, other physicians feel that it is a patient’s right to choose, and they are willing to help to ensure that right-to-die measures are performed cor- rectly and without issue.

Alternatives to Euthanasia and Medical Aid in Dying For some, more viable and less stigmatized alternatives to euthanasia or medical aid in dying are palliative care and hospice care. Both palliative care and hospice care are intended to improve the quality of life of terminally-ill patients by providing preventative care and relief of suffering. Both types of care can be provided in a hospital, a hospice facility, or even the patient’s home. The main difference between the two comes down to when each type occurs. Palliative care can begin as soon as a patient is diagnosed and is administered alongside treat- ment of the life-threatening illness. Hospice care, on the other hand, begins after a patient has stopped receiving treatment and is expected to live only six months or less.

Despite a less polarizing reputation, some might argue that palliative and hospice care are forms of medical aid in dying since patients are usually administered drugs, such as mor- phine, to reduce pain and keep them comfortable. Over time, the use of such drugs can shut down major organs, including lungs and kidneys, ultimately leading to the patient’s death. It could also be argued that hospice care is a type of passive euthanasia, since patients forego life-sustaining treatments during this type of care. However, unlike both medical aid in dying and euthanasia, the aim of palliative and hospice care is not to hasten death, but to allow the natural process of dying to occur while keeping the patient as comfortable and pain-free as possible (see Case Study: Palliative Care).

Section 4.2Rights to Die: Euthanasia and Medical Aid in Dying

Case Study: Palliative Care

Virginia was diagnosed with ovarian cancer at the age of 67. She had never felt sick leading up to her diagnosis and she was an active and hands-on grandmother. After her diagnosis, she knew she would have to have surgery and wanted to try every type of treatment avail- able to live longer so she could spend time with her grandchildren. She underwent surgery, which consisted of a full hysterectomy, an appendectomy, and the removal of eight inches of her colon. Unfortunately, it turned out that Virginia had stage four ovarian cancer that had metastasized, and the surgery could not remove all of the cancer. After considering her options, Virginia chose to undergo chemotherapy, which she started immediately after recovering from surgery. Though chemotherapy helped her resume some of her previous activities over the next two years, the cancer started to spread to her liver and pancreas. In light of this development, Virginia again had to weigh her treatment options. She chose to try a new chemotherapy drug but, unfortunately, the treatment was taxing on her body, and she had to stop.

After four years of on-and-off chemotherapy and suffering the extreme side-effects, Virginia had to stop treatment. However, every time hospice was mentioned as a care option, she refused, believing that going into hospice care would mean she was giving up. However, in her final week of life, hospice care was finally called in to set her up with a morphine pump to manage her pain. Once the pump was installed, Virginia said her goodbyes to her fam- ily, and then went into a morphine-induced coma. The hospice nurse informed the family members present that they could push the button on the pump every ten minutes to help Virginia stay comfortable. This was done, and the next morning, Virginia died peacefully with most of her family members around her. Alice, one of Virginia’s daughters, was not in attendance at her passing. She felt that pushing the pump was akin to killing her mother, since it could cause her to die sooner, and that her mother was being treated like a sick pet in a veterinarian’s office. Arguments between Alice and other family members ensued, with family members making the case that Virginia fought a good fight, and that the use of the morphine pump would lessen her suffering and allow her to die without pain.

Three years later, Virginia’s husband, Raymond, was diagnosed with inoperable brain can- cer. Though he could not have surgery, he was given the option of undergoing radiation therapy, which would extend his life by six to nine months. After having watched what his wife went through, Raymond chose not to do any therapy. Instead, he asked his family to immediately call in a hospice service to provide palliative care. A hospice nurse set Ray- mond up with steroids to help the swelling on his brain and, during the last week of his life when he could no longer walk or get around on his own, Raymond’s family was equipped with morphine that could be injected into a port inserted into his arm. Raymond signed a do-not-resuscitate order and hospice caretakers came by his home every day to not only help care for Raymond, but also help his family prepare for the next steps.

Ten weeks after being diagnosed, Raymond died peacefully in his home. On the last night before Raymond’s passing, caretakers stayed the night with the family, helping them pre- pare while ensuring that Raymond was comfortable. Morphine was only used the last night to keep him from experiencing any pain. After watching Virginia suffer for years prior to her death, all of the family members were on board with Raymond’s final decision and every- one, including Alice, was able to spend time with him and say their goodbyes without any issues.

(continued on next page)

Section 4.3Advance Directives and Do-Not-Resuscitate Orders

4.3 Advance Directives and Do-Not-Resuscitate Orders Advance directives are written state- ments concerning the medical treatments, including life-saving measures, a person wishes to, or to not, undergo should he or she become unable to make such decisions known to a doctor. Though it is a sensitive topic, advance directives are important for any family to discuss, especially if a family member becomes terminally ill. For many, making their wishes known early on is an essential way to avoid conflict and allow family members to focus on the patient and whatever time he or she has left.

Do-not-resuscitate (DNR) orders, which fall under the purview of advance direc- tives, specify a patient’s legal refusal of cardiopulmonary resuscitation (CPR) or advanced cardiac life support should the patient stop breathing or should his or her heart stop beating. According to Burns et al. (2003; as referenced in Braddock & Clark, 2014), DNRs came into use when, in 1974,

the American Heart Association (AHA) recognized that many patients who received CPR [as a life-saving measure] survived with significant morbidities and recommended that physicians document in the chart when CPR is not indicated after obtaining patient or surrogate consent. This documentation formally became known as the DNR order. (Para 2)

In 1983, the President’s Commission for the Study of Ethical Problems in Medicine established that medical providers and facilities should allow DNR orders based on three conditions: self- determination, well-being, and equity. Essentially, the declaration stated that a DNR should be permitted in cases where it is the decision of a competent patient (or an advance directive of a now-incompetent patient) and/or the life-saving measure will not benefit the patient.

Daisy-Daisy/iStock/Thinkstock Patients have the legal right to decline cardiopulmonary resuscitation, but only if they have a do-not-resuscitate order on file with the treating health care provider.

Case Study: Palliative Care (continued)

Discussion Questions

1. Given the circumstances surrounding Virginia’s case, would you agree or disagree with Alice’s position on her mother’s care? Why or why not?

2. Considering the use of morphine over the course of Virginia’s care, could her death be considered medical aid in dying? Could Raymond’s?

Section 4.3Advance Directives and Do-Not-Resuscitate Orders

Additionally, the cost of performing life-saving measures should not be a factor in determin- ing their benefit to the patient (Yuen, Reid, & Fetters, 2011).

In 1990, further requirements were established with the passage of the Patient Self-Determi- nation Act. This act requires hospitals, skilled nursing facilities, home health agencies, hos- pice programs, and health maintenance organizations to, among other things, ask patients if they have an advance directive or DNR. If a patient does not have either, the medical facility is required to provide him or her with information regarding advance directives. The facility is also required to give the patient a blank form to fill out if one is requested. For DNRs to be recognized at a medical facility, they must either already be on file with the facility or be submitted to the facility at the time of admission. If no advance directive or DNR order is sub- mitted at the time of admission, life-saving measures will be performed if deemed medically necessary (Bull, 2015).

The purpose behind the Patient Self-Determination Act and the defined advance directives were to give patients the power to make decisions about their health care, now and in the future (Duke, Yarbrough, & Pang, 2009). Along with this purpose, the act also had the goals of educating the public about laws regarding their rights to make health care choices; promot- ing greater understanding and use of advance directives; and eventually reducing health care costs associated with end-of-life treatments (Duke, Yarbrough, & Pang, 2009). Every state in the U.S. has accepted the Patient Self-Determination Act and has enacted their own laws or statutory laws regarding advance directives and medical power of attorney (Ashar, 2010).

DNRs and advance directives are especially important for patients who will be having surgery, as most surgical patients undergo anesthesia, which has an associated risk of complications (Gottschalk, Aken, Zenz, & Standl, 2011). When a complication, such as cardiac arrest, arises during surgery, a quick decision must be made. Therefore, the American Society of Anesthesi- ologists established guidelines for physicians to discuss the option of suspending a patient’s DNR during surgery to allow life-saving measure to be administered without delay or com- plication. Studies have shown that the majority of the patients, when asked if they wanted to suspend their DNR decisions, agreed once it was explained that possible complications are usually due to anesthesia (Burkle, Swetz, Armstrong, & Keegan, 2013).

Although there is agreement among many in the medical and health care fields that all patients should have the right to establish advance directives and DNR orders, legally, terminally-ill pediatric patients do not have this option. Because these patients are minors, end-of-life decisions are left up to parents or guardians. In a study from 2005, parents of terminally-ill children were asked about this issue. Overall, the parents in the study expressed that it was extremely hard on them when the topic of a DNR or advance directive came up and that it was often very emotionally difficult for them to fill one out. However, most who did create these advance directives or DNRs felt it was important to do so in order to allow them to con- centrate on the best treatment and quality of life for their child (Hammes, Klevan, Kempf, & Williams, 2005).

Despite the many rules and regulations governing DNRs and advance directives, there are times when DNRs have been deferred or disregarded (see Case Study: Honoring a Patient’s Right to DNR).

Case Study: Honoring a Patient’s Right to DNR

After suffering a massive heart attack, Frank, age 88, was brought to a hospital where his DNR was on file. After the required initial tests confirmed that Frank was close to death, it was determined that, due to his DNR, no extreme life-saving measures would be admin- istered. However, Frank’s daughter, Beth, who worked as a nurse at the hospital, took the DNR out of her father’s chart. She told Frank’s doctor that her father would not want to die this way and pleaded with him to try everything possible to save Frank. The doctor listened to Beth and administered live-saving measures. As a result, Frank laid in a coma while hav- ing several more heart attacks over the next three weeks. Eventually, Frank awoke from his coma and was sent home on hospice care. However, he was never the same and became extremely depressed. He was furious with his daughter for disregarding his DNR order; after arriving at his home, he found out that his son and other daughter had also wanted him to be kept alive despite his DNR. Sadly, Frank suffered for another six months, eventu- ally dying of a painful, massive heart attack.

Discussion Questions

1. What consequences, if any, should Frank’s daughter face for disregarding her father’s DNR order?

2. Should the doctor who treated Frank be held accountable for disregarding Frank’s DNR order at the request of his colleague and Frank’s family members?

Chapter Highlights

Chapter Highlights • The time has passed when patients were expected to submit to a doctor’s authority

and passively acquiesce to the physician’s paternalistic (and hopefully beneficent) control over patients’ health. Ethics requires that patients be invested and engaged in their medical treatment as they collaborate with their doctor to make decisions related to their care. Today, patient empowerment can be seen to (a) ensure better health outcomes; (b) respect people as ends in themselves; (c) abide by the prin- ciples of respect for autonomy, beneficence, nonmaleficence, and justice; and (d) promote the ultimate ends of health care as a caring profession.

• Part of patient empowerment includes enabling a patient to determine his or her own end-of-life care, including establishing advance directives and DNR orders. In some states, this also includes access to passive euthanasia and medical aid in dying.

Case Study: Brittany Maynard

Cases of medical aid in dying have made a big impact on the national conversation about a patient’s rights to die. In 2014, Brittany Maynard, a 29-year-old woman who utilized medi- cal aid in dying, was at the center of one of these cases. After suffering from severe head- aches for months, Brittany found herself in the emergency room on New Year’s Day, 2014.

(continued on next page)

Additionally, the cost of performing life-saving measures should not be a factor in determin- ing their benefit to the patient (Yuen, Reid, & Fetters, 2011).

Despite the many rules and regulations governing DNRs and advance directives, there are times when DNRs have been deferred or disregarded (see Case Study: Honoring a Patient’s Right to DNR).

Case Study: Honoring a Patient’s Right to DNR

Discussion Questions

1. What consequences, if any, should Frank’s daughter face for disregarding her father’s DNR order?

2. Should the doctor who treated Frank be held accountable for disregarding Frank’s DNR order at the request of his colleague and Frank’s family members?

Chapter Highlights

Case Study: Brittany Maynard (continued)

An MRI revealed that she had a Stage 4 malignant brain tumor. She proceeded to have sur- gery to try to remove as much of the tumor as possible; however, by April of 2014 the tumor was growing more aggressively, indicative of a glioblastoma multiforme. Brittany was told she had about six months to live, so she began researching every available treatment option that might give her any glimmer of hope. A physician recommended full brain radiation; however, that treatment held no promise of extending her life and, after further research, Brittany determined that any potential benefit was far outweighed by the side effects. At this time, Brittany and her husband of one year, Dan Diaz, lived in California. While medical aid in dying is now legal in California, it was not in 2014. Therefore, after careful consider- ation of her options and how she wanted to live the remainder of her life, Brittany decided to move to Oregon, where the option to die with dignity through utilizing Oregon’s death with dignity act had been legal for 17 years (Bever, 2014; Maynard, 2014).

Though Brittany met the criteria to qualify for death with dignity in Oregon, she had to undergo a rigorous process to establish residency in the state, including finding new physi- cians, searching for a new place to live, and obtaining a state driver’s license. The couple also had to secure people to care for their animals and arrange a leave of absence from Dan’s job. During their time in Oregon, Brittany and Dan traveled around the state hiking, sightseeing, and enjoying what little time Brittany had left. Brittany had the prescription for secobarbital, the aid in dying medication, filled months ahead of her death, and she kept it secured. She made it very clear that her focus was on living life, but that she wanted to ensure she had the choice of a gentle dying process, stating “[w]hen my suffering becomes too great, I can say to all those I love ‘I love you; come be by my side, and come say goodbye as I pass into whatever’s next.’ I will die upstairs in my bedroom with my husband, mother, stepfather and best friend by my side and pass peacefully. I can’t imagine trying to rob any- one else of that choice” (Maynard, 2014, para. 20).

As the fall of 2014 approached, Brittany’s goal was to celebrate her husband’s birthday with him on October 26th and continue living as long as possible beyond that date. She made it to her husband’s birthday, but on November 1, 2014, she ended her increasing suffer- ing—which included seizures, inability to sleep, and constant pain—by utilizing the aid in dying medication (Bever, 2014). With family and friends by her side, Brittany shared one final message on her social media: “Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me . . . but would have taken so much more” (Bever, 2014, para. 3).

During this eleven-month journey, Brittany became a positive advocate for medical aid in dying, sharing her story with the world through her social media accounts in the hopes that her experience would help make death with dignity a legal option in more states. Since her passing, several states, including her home state of California, have passed medical aid in dying legislation, with many others considering such legislation in the near future.

Thank you to Dan Diaz for his contributions to this case study.

(continued on next page)

Chapter Highlights

Case Study: Brittany Maynard (continued)

Discussion Questions

1. Given the amount of suffering she endured and the options available to her at the time, do you feel Brittany made the right decision?

2. Should all states legalize medical aid in dying? Why or why not?

Visit your Constellation e-book for a video featuring Brittany talking about her decision in her own words.

Critical Thinking and Discussion Questions 1. Name and describe the forms of power in health care. Explain their relevance to

ethical leadership in health care organizations. 2. Explain why you think society felt the patient empowerment movement was needed. 3. Given the President’s Commission for the Study of Ethical Problems in Medicine’s

criteria of self-determination, well-being, and equity, under what circumstances might a medical facility not approve a DNR request?

Key Terms active euthanasia The intentional use of lethal substances or forces to end a patient’s life. This form of euthanasia is illegal throughout the United States.

advance directives Written statements concerning the medical treatments, includ- ing life-saving measures, a person wishes to, or to not, undergo should he or she become unable to make such decisions known to a doctor.

do-not-resuscitate (DNR) orders A type of advance directive specifying a patient’s legal refusal of cardiopulmonary resuscita- tion (CPR) or advanced cardiac life support should the patient stop breathing or should his or her heart stop beating.

euthanasia The intentional ending of a patient’s life in order to relieve pain and suffering.

expert power The power to influence oth- ers as a result of an individual’s specialized skills and knowledge rather than from his or her position or office.

hospice care An approach intended to improve the quality of life of terminally-ill patients by providing prevention and relief of suffering. Hospice care begins only after a patient has stopped receiving treatment and is expected to live six months or less.

involuntary euthanasia Euthanasia con- ducted without the patient’s consent and potentially against the patient’s will.

legitimate power The power to influence that comes from the position or office of a person rather than from any traits or char- acteristics the person may possess.

Chapter Highlights

medical aid in dying When a physician provides a competent, terminally-ill patient with the means to end his or her own life.

non-voluntary euthanasia Euthana- sia conducted as the result of a decision made by another person on behalf of the patient because the patient is unable to give consent.

palliative care An approach intended to improve the quality of life of terminally- ill patients by providing prevention and relief of suffering. Palliative care can begin as soon as a patient is diagnosed and is administered alongside treatment of the life-threatening illness.

passive euthanasia The withholding of life-sustaining treatments, such as taking a patient off a respirator.

patient empowerment The social process of recognizing, promoting, and enhancing patients’ knowledge, abilities, and oppor- tunities, thereby better enabling them to collaborate with health care teams and mobilize the necessary resources to steer the delivery of health care and meet health care needs.

referent power The kind of influen- tial power conferred on a role model. It depends on the esteem and respect an indi- vidual garners due to his or her habits and characteristics over time.

voluntary euthanasia Euthanasia con- ducted with the patient’s consent.