History and Background of End-of-Life Decision-Making and Culture

  • H. Russell SearightEmail author
Part of the SpringerBriefs in Ethics book series (BRIEFSETHIC)


This admonition from members of the Navajo community arose in response to the discussions of terminal illness and a patient’s desire for life-support—both of which are implicit topics in discussions of advance directives.

Don’t talk that way.

This admonition from members of the Navajo community arose in response to the discussions of terminal illness and a patient’s desire for life-support—both of which are implicit topics in discussions of advance directives. While required by federal law in the United States, discussions of advance directives were seen as harmful by Navajo elders:

…. You don’t say those things. And you don’t try to bestow that upon yourself, … The object is to live as long as possible here on earth. Why try to shorten it by bestowing things upon yourself (Carrese & Rhodes, 1995; p. 828).

The extension of life through reduced mortality from infectious disease, and the increased sophisticated of medical technology have all contributed to the possibility that we will, in the future, be in a state with a less than optimal quality of life and questionable chance of recovery. While we may not be conscious, we will likely be maintained alive with the assistance of ventilators, tube feeding, artificial hydration, and other medical interventions. In the United States and most Western countries, the past 50 years have seen a major shift away from physician authority to patient centered decision-making. As a result, we are in an historical period in which we can extend our autonomy regarding medical care to situations in which we are physically no longer able to express our wishes. The discussion on the Navajo reservation noted above was prompted by federal guidelines based on the Patient Self-Determination Act (PSDA), that require healthcare facilities to raise the topic of advance care planning with patients and encourage patients to complete an advance directive.

The implementation of the PSDA in the United States in the 1990s highlighted some of the core issues and the diversity of perspectives in end-of-life decision-making. These issues include whether we would want aggressive care to treat conditions such as pancreatic cancer or instead, accept inevitable death and request palliative care focusing on comfort measures. Because of our increased longevity and the rise in neurocognitive disorders with age, many of us may not have the cognitive ability to make a medical decision when the time arises. Patients who are comatose and on life support obviously do not have the ability to render a current decision about desired medical care.

Additionally, when the PSDA was implemented with some ethnic and cultural communities in the United States, such as the Navajo, it was not well received by patients or their families. The PSDA assumed that patients would want to make decisions about their own care. However in many Asian, Latin American, and southern European countries, the patient’s family, rather than the patient, themselves, receives information about the patient’s diagnosis and makes treatment decisions on the patient’s behalf. It was also found that among other groups, such as African–Americans in the United States, the idea of medical treatment being “futile” and prolonging a loved one’s suffering was not congruent with the spiritually-influenced worldview of the patient and their family.

1.1 Seminal Cases Highlighting the Importance of Advance Care Planning

Interest on the part of the professional health care community as well as the general public in preparing for a time of terminal illness in which one can no longer voice their wishes for various forms of life support as well as other potentially life-sustaining medical interventions, stems from several well-publicized legal cases in the United States. In these situations, relatively young patients were severely neurologically impaired and unable to communicate. While being maintained through artificial nutrition, hydration and ventilation, these patients demonstrated little likelihood of recovery.

1.1.1 Karen Ann Quinlan

In April, 1975, Karen Ann Quinlan, a 21-year-old woman, was admitted to the hospital unconscious after reportedly ingesting a combination of tranquilizers and alcohol. During the hospital course, she lost 50% of her body weight from 120 to 60 lb and was placed on a respirator and fed through a tube. In November of that year, Ms. Quinlan’s parents sought to have the respirator removed. The informal practice of physicians discontinuing life-support for comatose patients was still relatively common (Pence, 2003, 2016). However, in Ms. Quinlan’s case, her parents directly asked the physician caring for their daughter to do so—a practice that was unusual. In response, the doctors refused the parents’ request indicating that they were concerned about the possibility of legal action including being sued for malpractice. The parents then initiated legal proceedings. After a State Superior Court judge denied the parents’ request, that decision was reversed on appeal to the State Supreme Court. The State Supreme Court indicated that if there was no reasonable possibility that Ms. Quinlan would recover, the State’s interest in maintaining her life was overridden by Ms. Quinlan’s interest in not continuing to be maintained alive artificially in her current state (Pence, 2016). However the court-appointed representative for Ms. Quinlan argued that withdrawing life support resulting in her death would be homicide. Ms. Quinlan was receiving care in a facility affiliated with the Roman Catholic Church. The nuns overseeing Ms. Quinlan’s care were also opposed to removing the ventilator. In his analysis, Pence (2016) argues that the local Church’s and the Catholic hospital’s position may have been, at least partially, motivated by a US Supreme Court ruling two years earlier, Roe versus Wade, which supported a woman’s right to terminate a pregnancy. Catholic theologians testifying in the Quinlan case asserted that there was no right to die and were concerned about the “slippery slope” into euthanasia that the situation implied.

Despite the final court ruling, Ms. Quinlan’s ventilator was not abruptly stopped. Instead, she was weaned from the ventilator over the span of many weeks and done so in a way that allowed her to breathe on her own. Since Ms. Quinlan was comatose, the court indicated that the patient’s father, rather than the physicians involved, was the appropriate decision-maker on her behalf. One of the legal opinions from a judge in the case stated that maintaining Ms. Quinlan alive constituted cruel and unusual punishment. It was predicted that Ms. Quinlan would readily succumb after the respirator was removed. However she was able to breathe on her own and did continue to receive nutrition via a feeding tube. Ms. Quinlan died of pneumonia ten years later in a nursing home (McFadden, 1985).

1.1.2 Nancy Cruzan

In 1983, 25-year-old Nancy Cruzan lost control of her car, ran off the road and ended up laying facedown in a ditch filled with water. It was reported that at the scene of the accident, Ms. Cruzan had no detectable vital signs. She reportedly stopped breathing for 15 min immediately after the accident but was subsequently resuscitated. Three weeks later, it was determined that Ms. Cruzan was in a persistent vegetative state and could not swallow A feeding tube was implanted (Pence, 2016). After nearly five years had passed, Ms. Cruzan’s parents requested that the feeding tube be removed. However, the hospital was unwilling to do so because they were concerned that they could be prosecuted for murder. Ms. Cruzan had demonstrated little responsiveness and because of the anoxia associated with the accident, it was likely that her neurological functioning was seriously and permanently impaired (Pence, 2003). A Missouri probate court ruled that the feeding tube could be removed and emphasized that adult patients had the right to refuse or discontinue life-support. However, the State of Missouri intervened and appealed to the State Supreme Court which reversed the lower court’s ruling. The State Supreme Court based their decision on the absence of clear and convincing evidence about what Ms. Cruzan would have wanted in these circumstances (Pence, 2016). The State Supreme Court indicated that no one can refuse treatment for another person unless the patient had previously communicated a clear choice which was well-documented. The case eventually went to the U.S. Supreme Court which acknowledged that competent individuals do indeed have the right to refuse treatment. However, if a patient’s decisional abilities are impaired, clear and convincing evidence of their wishes, such as through a written advance directive developed when the individual was competent, was required for discontinuing treatment. In Ms. Cruzan’s case, this information was initially unavailable. However, according to her parents, Ms. Cruzan had expressed to coworkers the desire to never “live like a vegetable.” Cruzan’s physician referred to her current state as a “living hell” and also recommended removal of the feeding tube. The testimony of friends and coworkers, which was unavailable in previous court decisions, met the lower court standards of “clear and convincing evidence” (Pence, 2016) and led to a reversal of the State Supreme Court’s earlier decision. Shortly thereafter, the feeding tube was removed. The Cruzan case became very politicized with right-to-life supporters attempting to storm the hospital unit and reattach the feeding tube. Ms. Cruzan died approximately 12 days after removal of the feeding tube.

1.2 Implications of the Quinlan and Cruzan Cases

The U.S. had witnessed two particularly challenging cases in which women were being kept alive even though they had been nonresponsive for many years. These cases became known internationally and provoked discussion and debate among Europeran ethicicts (Kennedy, 1976; Truog, 2008). The key reason for maintaining their lives was that these young women had not indicated a preference about the level of care they desired if they were in nonresponsive/comatose state.

The protracted attention given to the Cruzan case in the media conveyed that medical science could maintain life for years even though the life being preserved did not exhibit evidence of the neurocognitive properties of awareness, communication, and basic reasoning. The plight of the Cruzan family clearly illustrated how others would make the decision about one’s continued life if the patient could not communicate their wishes. However, expressing one’s wishes indirectly through a past conversation with family members or friends was not a firm foundation for health care providers to act or discontinue treatment. Additionally, these cases illustrated that resulting legal proceedings could require years to resolve with the patient existing in a prolonged persistent vegetative state (PVS). The Cruzan decision triggered informal conversations among some of the general public about whether one would want to be maintained alive if they were in a similar state.

It also made all concerned aware that they could be placed in a position of having to represent the interests of an ill family member who had become incompetent—a burden that a husband or wife did not want nor did the spouse want to place a loved one under this duress. Statements such as those made by Cruzan’s physician about her experience in an enduring non-responsive state (“a living hell”) led to conversations that probed unknowns about medical science. For example, did individuals in a long-term coma of many years ever regain consciousness? While recovery of awareness became less likely as the coma endured, a very few patients actually did “wake up” years later (Pence, 2003). Physicians and hospital administrators were concerned about the legal implications of withdrawing life support—particularly being sued for malpractice or even charged with homicide.

The publicity surrounding the Cruzan case appeared to accelerate the creation of Do Not Resuscitate (DNR) policies that hospitals had begun developing in the early to mid-1970s. Cardiopulmonary resuscitation (CPR) arose in the 1960s as a technique for patients suffering anesthesia-related cardiac arrest. The technique was featured on some popular medical television dramas—usually with great success (Diem, Lantos, & Tulsky, 1996). CPR soon came to be employed on a much larger scale with many patients experiencing cardiopulmonary arrest arising from diverse causes. While later augmented by the PSDA, the DNR discussion became a standard part of many hospital and nursing home admissions as well as a precursor to some surgical procedures. Again, by formalizing their wishes, patients and/or families were able to specify how aggressive their care would be—even though the general public’s knowledge of the success rates of many interventions was inaccurate (Diem, Lantos, & Tulsky, 1996).

1.3 The Patient Self-Determination Act (PSDA)

The central problem in the Cruzan case—clearly establishing the extent of care that one would want on their behalf if they were unable to convey their wishes—could be, it was argued, resolved with a clearly documented record of the patient’s preferences established well in advance of life threatening illness. The mechanism of this communication, an advance directive for treatment, would be a record that would direct physicians to provide the level of care desired when the patient could not express their wishes. One form of advance directive, the living will, at least in theory, bypassed family members and lets the previously competent patient direct their own care.

The federal Patient Self-Determination Act (PSDA), according to many commentators, was a direct outgrowth of the public reaction to the Cruzan case. The PSDA required that hospitals receiving federal Medicaid funding have policies for asking all patients if they had an advance directive. If patients did not have a directive, hospital staff were to educate patients about these legal documents and encourage them to develop a record of their health care wishes. In early research on advance directives, there seemed to be a strong consensus among adult patients across the age spectrum that the documents were desirable. Additionally, there was a fairly pronounced preference that aggressive life sustaining measures would not be desired if one was comatose with a chance of survival (57%); in a persistent vegetative state (85%); suffering from dementia (79%) and having dementia with a terminal illness, (87%) (Emanuel, Barry, Stoeckle, Ettelson, & Emanuel, 1991).

1.4 The Doctrine of Informed Consent

Legally, the patient’s right to make healthcare decisions for themselves, including declining recommended treatment such as refusing amputation of a gangrenous leg, has its roots in a ruling by Judge Cardozo in Schloendorff v. New York Hospital (1914) Cardozo asserted that … “every human being of adult years and sound mind has a right to determine what shall be done with his own body.” In U.S. health care law and clinical practice, there is a strong emphasis on individual autonomy. A competent adult individual has the right to choose their medical treatment, including the choice not to receive medical treatment and to terminate ongoing treatment an example of the latter is the finding that between 8 and 31% of patients on dialysis stop treatment on their own (Qazi, Che, & Zhu, 2018).

However, it eventually became apparent that in order to make genuinely autonomous medical decisions, patients needed to be provided with adequate information. The basic tenets of informed consent included disclosure of the patient’s diagnosis, the impact of condition on the patient’s daily living, available treatment options with accompanying risks and benefits and the prognosis with and without treatment (Searight & Barbarash, 1994). Making healthcare decisions for oneself is also predicated on the assumption that the patient exhibits decision-making capacity and voluntarily provides consent (Walter, 1997). In order to have intact decisional capacity, Grisso and Appelbaum (1998) indicated that patients must (1) Be able to communicate A clear and consistent choice: (2) Understand relevant information; (3) Appreciate their current health situation and both its short-term and long-term consequences; (4) Based upon their understanding of the condition and its prognosis, engage in an internally logical consistent reasoning process for selecting a decision appreciate the information.

Physicians have been found liable for performing procedures on patients who have not been provided with all relevant information with particular attention to risks and foreseeable benefits. While patient autonomy, predicated on having adequate comprehensible information, has been the basis of this litigation, the physician’s defense has focused on beneficence—acting in the patient’s best medical interests. Patient autonomy may conflict with physicians’ judgment about what was or would be most beneficial to the patient. Legally, physicians have been found liable in which they proceeded with treatment that they thought was in the patient’s best interests without receiving the patient’s explicit advance consent. For example, in Dries vs. Gregor, based upon a finding of a growth on their right breast, the patient agreed to a biopsy of the breast to determine the possible presence of cancer. However, during the biopsy, a partial mastectomy was conducted and substantial amount of breast tissue removed; the growth was found to be benign. Based upon available information, the physician argued that he had acted in the best interest of the patient to prevent potential cancer from spreading and also to avoid having to perform a second procedure. However, the patient had consented to only a much more conservative intervention (Walter, 1997)—namely, a biopsy and had not been informed that a more invasive procedure, resulting in removal of significant beast tissue, would be performed.

While not consistently upheld in US courts, there are circumstances in which physicians have argued that obtaining informed consent would adversely impact the patient. In intentionally choosing to not inform a patient of medical “bad news,” a strong case has to be made that the disclosure of the information could reasonably be expected to adversely impact the patient’s condition (Walter, 1997). As will be discussed later, this form of beneficence has been the basis of cultural values that support non-disclosure.

With the publicity given to the Quinlan and Cruzan cases as well as the PSDA, the elements of informed consent became “front and center” in patient decision-making. A potential solution was to have individuals make decisions for themselves in anticipation of being in the state in which they could not express themselves or make decisions. A document such as a living will or an advance directive formally appointing a durable power of attorney would both “speak” on the patient’s behalf. In essence, theses proxies extended patient autonomy to situations in which the patient could no longer indicate their wishes. As the scenario on the Navajo reservation makes clear, both advance directives and living wills ask us to imagine what our values would be if we were in a state in which our chances of survival were poor or at best, unknown.

In cultures in which language, thought and action are inextricably linked, end of life discussions are not hypothetical future possibilities but, instead, give terminal illness and death a reality. In Carrese and Rhodes’ (1995) study, a number of their informants would not even discuss advance care planning because of this perceived danger. This same perspective, while not as explicitly stated as among the Navajo, has been found in other cultures such as Bosnian immigrants (Searight & Gafford, 2005).

However, it was not solely patients who did not welcome discussions of possible impending death. In the medical community a patient’s death is still often seen as a failure on the part of physicians. Intensive care nurses have observed that end-of life treatment decisions are often based on the physician’s rather than the patient’s needs: “Too many [physicians] see death as a personal affront to their professional abilities and do not visualize the dying process as part of life itself. Thus, many patients suffer needlessly without adequate pain control and supportive care” (Beckstrand, Callister, & Kirchoff, 2006; p. 41). As someone who has spent a great deal of time training physicians, it was not unusual to see a resident physician in-training coming off their shift of overnight call in the hospital breathing a sigh of relief because a terminally ill patient had not died “on their watch.”

1.5 The Blackhall et al. Study

Within several years of the PSDA’s initiation, a provocative study on cross-cultural end-of-life views by Blackhall and colleagues (Blackhall, Murphy, Frank, Michel, & Azen, 1995) was published in the Journal of the American Medical Association. The paper received a good deal of public attention in news accounts as well as served as an impetus for future research on cross-cultural issues in end-of-life decision-making.

Blackhall et al. (1995) recruited samples of older adults of African–American, Korean–American, Mexican–American and European–American background. The participants were asked if they believed that patients should be informed about a serious cancer diagnosis and whether they should be informed directly of their prognosis. In their groundbreaking work, these investigators found that there were major differences between these ethnic groups regarding end of life preferences. African–Americans and European Americans strongly endorsed the principle that patients should be told their diagnosis and the majority of both groups believed that patients should be informed of their prognosis even if it was terminal. Among Korean Americans, fewer than half (45%) indicated that a cancer diagnosis should be disclosed to patients with 38% indicating that they should be informed of their prognosis. For the Mexican American sample, approximately 60% indicated that the patient should be informed of the diagnosis and about 45% indicated that patients should be told of a terminal prognosis. When asked who should make decisions about whether to put the patient on life support, about 60% of African Americans indicated that the patient should do so while approximately 15% said the physician and 25% said the family should make this decision. For European–Americans, slightly more than 60% indicated that patients should be the primary decision-maker regarding life support with fewer than 10% viewing the physician as the source of these decisions and approximately 20% indicating that the family should be the primary decision-maker (Blackhall et al., 1995). In contrast, nearly 60% of the sample’s Korean–Americans indicated that the family should make the decision about life support followed by close to equal representation of physician and patient as decision-makers. For Mexican Americans, about 50% indicated that the patient should make life support decisions while 10% indicated that the physician should decide with 45% indicating that these decisions were the family’s role. Among the Mexican–American sample, those with fewer years of formal education and those who were older were most likely to indicate that the patient should not be told the truth nor should patients be the primary decision-makers about treatment for a life-threatening condition (Blackhall et al., 1995). There were suggestions that as Mexican Americans became more acculturated, they were more likely to endorse patient-centered decision-making (Blackhall et al., 1995).

1.6 Cross-Cultural Differences in Values at the End of Life

While these data were provocative, the survey format used by Blackhall et al. (1995) provided little information about the reasons for the diversity in values among ethnic groups. Follow up qualitative interview studies provided some insight into these differences. In an interview with an older Korean American woman, Mrs. Kim, it became evident that one’s duty to family members was far more important than individual autonomy. In fact, it was incumbent upon the extended family to do anything to prevent their loved one’s death (Frank et al., 1998).

Culturally based objections to ADs were sometimes less tangible—there was a feeling that one should not be forecasting the circumstances of ones’ own death. As a recent Bosnian immigrant to the U.S. put it: “It’s like playing with your destiny.” (Searight & Gafford, 2005). Additionally, even hypothetical discussions about future death were seen as undesirable as illustrated by this exchange with Mrs. Kim:

“In order to use [a written advance directive]…, It is necessary to talk about death when the potential patient is still conscious and healthy what do you think about this?”

Mrs. Kim:

“It is not good to talk about death in advance.”


“Even for the older people?”

Mrs. Kim:

“I am also old. Although the person may be old, to talk on the issue in advance is not good. If asked to sign such papers, without knowing one’s future, how could I sign them?” (Frank et al., 1998; p. 423)

1.7 The Era of the Patient as an Autonomous Consumer

The contractual nature of advance directives may be seen as part of broader changes in the physician-patient relationship, as well as in the nature of medical care. These forces have likely contributed to a greater emphasis on patient autonomy. Changes in medicine include replacing the long-term family doctor-patient relationship with a more mobile physician work force. The family doctor depicted in Norman Rockwell paintings, who knows the patient and their family well, has been replaced by physicians who are employees of large healthcare organizations. As executive employees, contemporary physicians, compared with colleagues a generation earlier, more readily move from practice to practice within and between geographic regions. The rising number of urgent care centers and walk in clinics—often housed in strip malls next to retail stores or physically part of, chain-store pharmacies, while providing convenience, does little to foster a stable, familiar, medical “home.” These clinics are based upon values of availability and efficiency rather than having a long-term relationship with the healthcare provider. Without this history of an enduring physician–patient relationship, trust in a physician’s advice is likely to be received with greater tentativeness (Schlesinger, 2002). As public confidence in physician authority declined (Schlesinger, 2002; Tomes, 2016)—a pattern also seen in universal access countries such as Canada and Great Britain—patients could no longer be sure that their physician was looking out for them. As a result, patients needed to look out for themselves. Under these circumstances, it is understandable that patients may wish to take advance control over late life medical care–particularly when physically and emotionally vulnerable and unable to verbalize their preferences.

The consumer orientation and patient rights movement as well as the availability of specialized medical knowledge to the general public through the internet and pharmaceutical companies’ direct marketing efforts (Schlesinger, 2002), are additional factors which have moved medical decision-making further into the patient’s domain. The growing emphasis on “patient as expert” contributed to a physician-patient relationship that is more collaborative than authority based. In the contemporary models of patient-centered care now widely taught in U.S. medical schools, physician advice is being replaced with shared physician-patient decision-making (Constand, MacDermid, Dal Bello-Haas, & Law, 2014).

1.8 Medical Technology and the Rise of Subspecialty Care

With the shift from acute to chronic illness, it has been argued that the conditions that eventually lead to death—cancer and cardiovascular disease, in particular—are “natural,” yet, prolonged, processes of ending lives no longer taken by rapid-onset infectious illness. Historically, early kidney transplants and the first successful heart transplant by Christian Barnard, underscored the ability to delay natural physical deterioration. Our ability to be maintained alive as we age and amidst overall deterioration in our general health status, has grown exponentially (Kaufman, 2015). While organ transplantation and mechanical support for physiological functions were not widely available in the past, these once-experimental treatments have become the standard of U.S. medical care. When kidney dialysis was introduced in the United States in Washington, a group of citizens, that came to be known as the “God Committee,” had to decide on the basis of personal characteristics who should receive treatment and who would be denied dialysis (Markel, 2017). When the workings of the “God Committee” became public through a widely circulated news magazine, the response triggered rapid passage of federal legislation insuring kidney dialysis for all who needed it.

With the passage of Medicare—essentially a form of universal health coverage for senior citizens—in the mid 1960s, decisions needed to be made about which treatments would be covered. The rise of the evidence-based medicine movement in which research findings from clinical trials justify performing specific procedures as well as having them funded by third parties, also contributed to relying upon a growing array of therapies that could maintain life (Kaufman, 2015).

In many instances, it became unclear where to draw the line. Kaufman (2015) presents a case of Mrs. Dang, a 72-year-old Asian American woman with chronic liver disease. A liver specialist recommended that Ms. Dang receive a liver transplant. The physician indicated that while the first year post transplant would be difficult with the new liver, Mrs. Dang could live 10–15 years longer with no problems. One of Ms. Dang’s daughters said “I need to ask my mother if she wants to live ten more years.” (Kaufman, 2015; p. 41). Complicating the decision further for patients is that about one out of three liver transplant patients experience significant complications. Kaufman (2015), however, suggests that this aspect is downplayed when patients are presented with the option of a transplant. During the family decision-making process Ms. Dang’s daughters raised an ethical question: “… if you have cancer and decide not to treat it, is that suicide? I don’t think so, but I wonder. If I think my mother shouldn’t be listed for the transplant, is that murder?” (Kaufman, 2015; p. 42). As Kaufman (2015) points out, this type of dilemma only arose after Medicare began paying for liver transplants.

Simultaneous with the development of new technology came new subspecialties within medicine. Residency is no longer the end of formal medical education. Many physicians, after a 3 to 4-year residency within a medical specialty such as internal medicine or radiology, embark upon post-residency fellowship training focusing on subspecialty areas within medicine. Subspecialty training in medicine has become much more common. For example, a recent study found that approximately 90% of residents graduating from an orthopedic residency went on to fellowship training (Yin, Gandhi, Limpisvasti, Mohr, & ElAttrache, 2015). While this level of sophistication can no doubt benefit patients, it also leads to a fragmented, rather than comprehensive and holistic approach to patient care. When livers, hearts, knees, etc. are viewed in isolation, the patient, situated in a life context, can be neglected. For example, a urologist might propose a laser treatment for a narrowed urethra in an elderly patient with rapidly advancing mid-stage dementia or late stage metastatic cancer. While the laser treatment may indeed be the evidence-based treatment of choice for the condition, the fact that a confused older patient with a predicted limited lifespan will have to undergo treatments that requires them to lie perfectly still, may simply not be feasible in the context of the patient’s cognitive impairment. Furthermore, when the patient’s prognosis suggests a limited lifespan, it may be difficult to justify the additional psychosocial strain of the procedure as being in the patient’s overall best interest. Yet, when the patient’s urethra is viewed in isolation, the prognosis with treatment for the specific urological condition is quite positive.

Evidence also supports the limitations of a narrow view of organ specific treatment. Data suggest that among older patients with multiple medical conditions including kidney failure, dialysis did not improve the patient’s likelihood of survival and also was associated with declining functioning among those in nursing home settings. However, as is the case with cancer patients, most dialysis patients receive aggressive, hospital-based treatment during the last month of life and die in the hospital (Combs et al. 2015).

While the broader social implications, including the patient’s quality of life, are often neglected, the average age of those undergoing surgery and similarly invasive interventions in the United States has been increasing. For example, stents to open cardiac arteries are now routinely inserted among patients in their 80s and 90s. Kaufman (2015) notes that as more older patients undergo the procedure and with Medicare authorizing coverage for stent placement, not having a stent placed would become sub-standard care. At the same time, there is controversy about the effectiveness of stents with some medical investigators noting that they are no more effective in preventing cardiovascular deaths than medication or changes in diet and exercise (Kaufman, 2015; Redberg, Katz, & Grady, 2011).

In part, the rising influence of evidence-based medicine has also indirectly become a factor in prolonging life. When older patients with multiple medical problems receive a recommendation for kidney dialysis or transplant or for the installation of a pacemaker, these endorsements are based on research evidence. However, it is important to recognize that the samples in which these interventions were studied and determined to be effective, often do not reflect clinical reality. Typically, patients in medical research trials do not have a significant number of possible confounding conditions. However, the absence of comorbid conditions does not reflect medical reality—particularly among geriatric patients. Yet, since the treatment is supported by the evidence, there is pressure for third-party payers to cover its cost. This pattern is true for both private insurance as well as for government-based programs such as Medicare.

1.9 Conclusion

While many of these technology-based end-of-life decisions are not yet commonplace in developing countries, as the number of intensive care units in Asia and Africa increases along with medical devices such as ventilators, these concerns are likely to arise. Moreover, the Westernization of medicine worldwide brings new ethical issues and medico-legal standards to developing countries. As noted by Blank (2011), 75% of the world’s population resides in regions in which disclosure of medical “bad news” and autonomous patient decision-making are not the norm nor seen as desirable. However, it is often implied that the Western emphasis on patient autonomy is the standard that all nations should adopt in their health care systems. However, as illustrated by the Navajo and Mrs. Kim, even in the U.S., this emphasis on isolated, self-determination may not be a universally-held value.


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Copyright information

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.Department of PsychologyLake Superior State UniversitySault Sainte MarieUSA

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