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Self-determination, the right to die, and culture: a literature review.

Self-determination is a primary ethical principle underlying social work practice, and social workers in health care settings use it as a guiding principle in decision making with their clients (NASW, 1997, 2004). Since the 1970s, a right-to-die movement has been advocating for changes in laws regarding a right to die, and it shares the social work dedication to self-determination. This movement is a loosely coordinated civil rights movement comprising 40 organizations in 26 countries (see These organizations uphold the principle that individuals have a right to make their own decisions regarding the amount of medical care they want and the circumstances and timing of their death (Humphry & Clement, 2000).

The right-to-die movement has grown and now enjoys the support of a large majority of Americans. In January 2006, following a survey of 1,500 adults, the Pew Research Center reported that 84 percent of Americans supported right-to-die laws that give patients the right to decide whether they want to be kept alive through medical treatment. This was up from 79 percent in 1990 (Pew Research Center, 2006).This positive attitude toward a right to die has affected social workers. Hospice social workers report that clients make statements to them about a desire to die (P.J. Miller, Hedlund, 8: Soule, 2006). There are also social workers in a variety of settings who are now subject to questions about end-of-life issues (NASW, 2004).

The positive views of ordinary citizens toward self-determination regarding a right to die may not be shared by their state legislatures, and in many states, individual beliefs now seem to be ahead of changes in law. With the exceptions of Oregon and Washington--which passed citizen initiatives in 1995 and 2008, respectively--state laws do not allow for physician aid in dying. Legislatures in 38 states passed laws to prohibit physician-assisted suicide, and seven others ruled it homicide (Public Agenda, 2001).

These laws may also have an effect on attitudes about end-of-life care among both health care providers and family members of patients in intensive care units, affecting the decisions that are made about treatment and withdrawal of life-sustaining treatment (Cook, Rocker, Giacomini, Sinuff, & Heyland, 2006). Social workers in health care settings have been aware of the need to address end-of- life care needs and views on suicide as part of their initial assessments with clients and their family members (P. J. Miller, Hedlund, & Murphy, 1998).

Current end-of-life care practice in the United States is not solely limited by law; it is influenced by culture as well. The right-to-die perspective has been criticized as lacking cultural awareness and applicability with people from a variety of ethnic and racial backgrounds (Kwak & Haley, 2005). The role of culture in the approach to the end of life is an important component of end-of-life care practice guidelines for professional social workers (NASW, 2004).

My purpose in this article is to provide a brief description of the right-to-die movement and to review selected literature addressing self-determination and cultural competence in social work practice at the end of life. My analysis of this information attempts to frame a principled response from social workers to the right-to-die movement that is based on professional ethical and cultural competence guidelines.


The right-to-die movement originated in the context of technological advances following World War II. Development of antibiotic treatment for bacterial illness and equipment such as the ventilator and the kidney dialysis machine helped medical doctors extend the lives of people who would certainly have died in the time before these advances. The medical community rapidly adopted these new technologies. The iron lung, used for treating polio patients in the 1950s, evolved into the modern respirator, also called a "ventilator." Hospitals expanded their intensive care units (ICUs) and were able to keep patients with traumatic injuries and exacerbations of chronic illness alive with mechanical ventilation and powerful medications to maintain blood pressure and heart function. Kidney dialysis treatment was given special recognition by the federal government in 1972, and patients who were diagnosed as needing dialysis became automatically eligible for Medicare, leading to a rapid expansion of kidney dialysis centers (Csikai & Chaitin, 2006). Today, patients are routinely put on the ventilator in emergency departments and transferred to ICUs. Some of these patients will be able to wean off the ventilator and move on to a process of recovery, which may include extended care and rehabilitation. Others may die quickly. A third group will fall between these two outcomes, and some of these may need continued care with life-sustaining treatment for an indefinite period of time.

Beginning in the 1970s, some people began to question the use of life-sustaining technological medicine for patients who were not recovering from their injuries or illness. In 1975, the parents of Karen Anne Quinlan requested that their 21-year-old daughter be taken off the ventilator. She had been severely injured in a motor vehicle crash and could not breathe on her own. When the physicians refused to remove the ventilator, the family went to court. Even though the court decided that the parents had the right to refuse treatment, the hospital refused to remove the ventilator. Instead, they slowly weaned Quinlan from it over a period of months. She lived for 10 additional years without the ventilator in an unconscious state, finally dying from pneumonia, for which the parents had refused treatment.

The Quinlan case illustrates a key concern for advocates of the right to die. They fear the technological imperative: the belief that doctors are obligated to use whatever medical treatment and technology is available to prolong life (Humphry & Clement, 2000). A growing number of patients now feel that continuing their life may cause more harm to them than allowing their life to end (Schone-Seifert, 1995). In these cases, a difference in attitudes can arise between physicians, who may want to press on with treatment, and patients and family members, who may feel that it is time to stop. Humphry and Clement (2000) cited patient concerns, such as "loss of control, fear of being a burden, abandonment, loss of dignity, and the cost of care [as] ... reasons for the consistently overwhelming support for an assisted death when a person is terminally ill" (p. 51). In many cases, the determination centers on an assessment of the patient's current quality of life and the chances for recovery to an acceptable quality of life (Luce, 1997a).

The central value of the right-to-die movement is based on the principle of respect for autonomy, which includes the concepts of individual choice, liberty rights, privacy, and freedom of the will (Beauchamp & Childress, 2001). These concepts have been incorporated into a new cultural norm since the passage of the Patient Self-Determination Act in 199{) (EL. 101-508) (Galambos, 1998). Its passage has reinforced the autonomy principle, which is now used as the rationale for full disclosure of diagnosis and prognosis to a patient, with the expectation that he or she will make decisions with his or her doctor about treatment (Wesley, 1996). This acceptance of autonomy as the principle focus in end-of-life care decision making is now thought to be firmly in place as a basis for a right to die (Beauchamp, 2006).

Two national membership organizations played important roles in the right-to-die movement in the United States. Compassion in Dying provided counseling to patients and families, and End-of-Life Choices worked to educate the public about assistance in the dying process. The two organizations merged in 2005 to form Compassion and Choices, which supports legislative and legal efforts supporting the right to die and provides counseling for patients planning for their death (see

End-of-Life Choices was founded as the Hemlock Society in 1980 and had a membership of over 25,000. A survey of the society's members conducted prior to the name change found the group to be primarily older and white and more highly educated and less religiously affiliated than the general population (Kamakahi, Cossman, & Fox, 2001). The authors compared "late joiners" and "early joiners" and found more recent members to have more religious affiliation, to be more politically conservative, and to have higher rates of participation in health-related fields. Although they still varied considerably from the general population, the addition of new members to the organization made End-of-Life Choices a bit more mainstream. Despite the advocacy of these groups, which have worked hard to change state laws, no state legislature has supported any right-to-die bill (Gottlieb, 1999).

The ability of the Oregon law to withstand challenges to its legality has strengthened individual autonomy at the end of life. The Supreme Court has agreed that individual states can enact laws supporting the hastening of death with physician assistance (Greenhouse, 2006).

The cutting edge of the history of the right to die shifted, with the passage of this law, from refusals of medical technologies to requests for aid in hastening death. This law has permanently altered the landscape of the issues about physician assistance for terminally ill patients. (Beauchamp, 2006, p. 648)

This fact makes it imperative that social workers understand this development and formulate a professional response to it.


A literature search was designed to locate professional articles on the themes of self-determination and culture as they relate to decision making at the end of life. The search was conducted in PubMed and PsycINFO, two electronic research databases that contain journal articles for both medical and social work literature. Selection criteria for inclusion in the literature review required that articles be written in English and either be locatable by electronic search or have been previously located by me.

The PsycINFO search used the phrases "social work" and "self-determination," which were combined with each other and then separately with "right to die," "death with dignity," "assisted suicide," and "euthanasia." The search in PubMed used "social work" in combination with "right to die," "palliative care," "end-of-life," and "biomedical ethics." Two additional combinations used were "biomedical ethics, end-of-life" and "race, palliative care. "The articles on the right to die had to be related to the history and principles of the movement supporting death with dignity, physician aid in dying, physician-assisted Suicide, or euthanasia and related ethical and legal issues. Selected books, items from the popular press, and online sources regarding the right to die were included as sources for the history review. The Google search engine was used to find relevant reports and newspaper and magazine articles, representing popular sentiment regarding the right to die.


A total of 54 articles from professional journals, books, and news sources were selected for inclusion. The search in PsycINFO yielded 14 articles that met the criteria for inclusion. An additional 22 articles from PubMed met the criteria for inclusion, bringing the total number of acceptable articles to 36. Of these articles,21 related to self-determination and social work practice issues, and 12 concerned ethnicity and culture at the end of life. The remaining 18 items were books; news items; and journal articles on the right to die, physician aid in dying, physician-assisted suicide, and euthanasia.

Ways to End a Life

We are now in an era of acceptance of hastening death passively--that is, by allowing life-sustaining treatments to be withheld or withdrawn (Meisel, 2004). Suicide was once illegal in many European countries, and those who were successful in killing themselves could have their property confiscated and their body dragged through the streets. These laws have all been repealed, and in the 1960s, suicide was decriminalized in the United States. Thus, it is now possible for people to consider end-of-life options such as refusing food and water and medical treatment and withholding or withdrawing life-sustaining treatment as ways to end their lives. These steps toward ending a life can now be taken openly, and people can receive emotional support from loved ones during the process. The legal precedent for refusing treatment was decided in the case of Nancy Cruzan in 1989;in it, the U.S. Supreme Court held that a competent person has the right to refuse medical treatment even if the lack of treatment will lead to their death (Colby, 2006; Pence, 2004).

Stop Eating. Probably the simplest legal method of hastening death is to refuse to eat or drink. To make this choice, patients must meet a standard of decisional capacity such that they can articulate an understanding of the benefits and risks of the choice. A patient or his or her legal surrogate may also refuse the artificial administration of food and fluid through a feeding tube. This type of feeding is considered a voluntary medical treatment, and the right to refuse is grounded in the American legal tradition of self-determination and respect for bodily integrity (Truog & Cochrane, 2005).

Withdraw or Withhold Life-Sustaining Treatment. Physicians and family members can agree to withhold or withdraw life-sustaining treatment from a terminally ill patient when such treatment will not be beneficial to the patient (Luce, 1997a). The incidence of withholding and withdrawing treatment increased considerably in the 1990s, but the practice was found to vary in hospitals around the country (Prendergast, Classens, & Luce, 1998; Prendergast & Luce, 1997). Ethical reviewers have reached a general consensus that withholding and withdrawing medical treatment are ethically equivalent practices (Beauchamp & Childress, 2001; Luce, 1997b).

Discussions of withholding and withdrawing treatment can raise concerns about euthanasia and whether a physician's withholding of treatment is an act of killing or of letting die (Callahan, 1992). Without a direct action by the physician, one could not say that the physician had killed a patient. Rather, "the underlying disease brings death when the treatment is omitted" (Callahan, 1992, p. 53). It needs to be added that there must be justification for withholding or withdrawing life-sustaining treatment based on the person's inability to recover from his or her current condition. It is unethical and illegal to withhold treatment from someone who could make a good recovery (Beauchamp & Childress, 2001).

Palliative Care. The medical profession has responded to the right-to-die movement with a major expansion of palliative care services. In 2000, palliative care programs were functioning in 632 teaching hospitals (15 percent) in the United States. By 2005, 1,240 hospitals (29 percent) had programs. This is an increase of 96 percent in only five years (Kuehn, 2007). The administration of analgesic medications prescribed to patients in palliative care presents a challenge to the maintenance of balance in ethical concerns. The medications have the goal of relieving pain and promoting patient comfort. Narcotics such as morphine are some of the most effective analgesics, but they can have a secondary effect of suppressing respiratory functioning. Using them while acknowledging this effect is considered acceptable practice under the doctrine ethicists have called the "double effect" (Beauchamp & Childress, 2001).This principle allows the use of medications that may hasten death as long as relieving pain is the primary goal of the treatment (Pence, 2004).

Palliative Sedation. Some patients with intractable pain within hours or days of dying may require or request full sedation to the point of unconsciousness to achieve relief. Maintaining a patient in such an unconscious state until they die has also been called terminal sedation (Quill & Battin, 2004). Some guidelines prohibit the use of palliative sedation for more than a few days because dehydration could shorten the patient's survival (Berger, 2010). If administered for short periods of time, palliative sedation will not lead to a reduction in survival, because the patient will die of his or her disease before the effects of dehydration would cause death.

Some people oppose palliative sedation because it can interfere with the opportunity for a person to communicate with family members and friends or to finish psychological or spiritual work as his or her life ends. To participate with others, some patients prefer to stay as alert as possible throughout the dying process. There are others who may reject palliative sedation because they anticipate a loss of dignity if they are to be sedated for an extended period of time (Brock, 2004).

Physician-Assisted Suicide. Physician-assisted suicide, which is also called "physician aid in dying," is legal in Oregon and Washington. The Washington law was passed in 2008 and is modeled after the Oregon Death with Dignity Act. Both laws allow for a physician to prescribe a lethal dose of medication to a patient, who may fill the prescription and take the medication whenever he or she is ready to do so. These laws are the first instances in the United States of the legalization of actively hastening death (Meisel, 2004). Physicians have the option to refer patients for psychological evaluation if they suspect that depression or other mental illness may be adversely influencing the patient's decision. Patients must make two requests in writing, 14 days apart, before they can receive a prescription. Once they have the medication, they must administer it to themselves. Both laws prohibit anyone else, including a physician, from administering the lethal dose of medication to the patient. In Oregon and Washington, as in nearly every state, helping another person to commit suicide remains illegal (Humphry, 2002).

In the 11 years the Oregon law has been in effect, physicians have written prescriptions for 600 people, and 401 (67 percent) have died after taking the medication (Office of Disease Prevention and Epidemiology, 2008). Ganzini et al. (2002) found, in a survey of hospice nurses and social workers, that over 70 percent of the patients who received prescriptions were concerned about losing control of their last days. Even those who did not use the medication might have benefited from having it on hand, knowing that it gave them a greater degree of control over the process (Lee, 2004). These results support the contention of supporters of the right to die that advocates for the law want to control the circumstances of their death.

Euthanasia. Some precision is required for use of the term "euthanasia." It is often used to mean different things. Active voluntary euthanasia defines a death in which the patient wants to die and some action is taken directly by another person to cause their death. This practice is never allowed in the United States as it is considered killing. This may sometimes be done in secret as a humanitarian action to relieve suffering, but it is illegal. Dr. Jack Kevorkian administered a lethal dose of medication to a patient who could not take it himself and, because of this, he was convicted of second-degree murder and imprisoned (Mackelprang & Mackelprang, 2005).

The possibility of accepting euthanasia for those who would request it raises fears among some of a slippery slope leading to decisions in which people could become victims of active involuntary euthanasia or nonvoluntary euthanasia. Involuntary euthanasia describes a death in which a direct action is taken leading to the death of a patient who does not agree to be killed. Nonvoluntary euthanasia describes the killing of a person who has never had decisional capacity and cannot make his or her own decisions about living or dying. Both of these forms of euthanasia are illegal and considered murder everywhere in the United States.

Concerns Regarding People with Disabilities

The potential for abuse in making decisions for people who do not have the capacity to make their own decisions is a concern of some people with disabilities. Members of the organization Not Dead Yet have been very active in opposing right-to-die legislation because they view it as a threat to and devaluation of the existence of people with disabilities. They fear that legalizing assistance in dying could make it possible for people with disabilities who lack decisional capacity to have others decide to have them euthanized (see These concerns must be taken seriously, and the opinions of people with disabilities are needed to inform future changes in laws related to physician aid in dying.

Current law protects individuals with disabilities who cannot make their own decisions. Both the Oregon and Washington state Death with Dignity Acts require that a person make their own decisions and take the medication themselves. Decisions about withholding or withdrawing life-sustaining treatment in an intensive care unit for those who cannot decide for themselves are made by family members who have legal authority as legal next of kin or through durable power of attorney or guardianship.

Self-Determination in Social Work Practice at the End of Life

"The driving force [of the right-to-die movement] is the right of the individual to have control over his or her physical person" (Humphry & Clement, 2000, p. 85). This perspective is supported by the bioethical principle of respect for autonomy, which is marked by "the autonomous action of normal choosers who act (1) intentionally, (2) with understanding, and (3) without controlling influences that determine their action" (Beauchamp & Childress, 2001, p. 59). Within social work, this principle is supported by the standard of self-determination:

Social workers respect and promote the right of clients to self-determination and assist clients in their efforts to identify and clarify their goals. Social workers may limit clients' right to self-determination when, in the social workers' professional judgment, clients' actions or potential actions pose a serious, foreseeable, and imminent risk to themselves or others. (Reamer, 1998, p. 28)

Self-determination is not defined in this social work standard, but it is understood to mean that clients have a right to make their own decisions and to determine the amount and type of treatment they want. This position is more explicitly stated in a policy statement from NASW (2009) in which social workers are advised to consider choice as "intrinsic to all aspects of life and death" and to help individuals to "identify the end-of-life care options available to them" (p. 118).

Several statewide surveys have found that social workers support self-determination in end-of-life care. In Texas, over 50 percent of social workers supported both physician-assisted suicide and euthanasia in some cases (Csikai, 1999a), and respect for the principle of self-determination was correlated with support for both practices (Csikai, 1999b). In Oregon, hospice social workers were much more likely than nurses to support physician-assisted suicide (L. Miller et al., 2004). In Washington, social workers based their support for legalization of euthanasia in some circumstances (65 percent) and physician-assisted suicide (70 percent) on the value of self-determination (Ogden &Young, 2003).

Self-determination is not always primary however. In practice, social workers will first consider the community or societal context of providing services, such as when they place an emphasis on the client's culture (Furlong, 20(}3). Social workers may also take steps to interfere with a client's self-determination if they anticipate self-harm stemming from poor judgment or poor self-care (Clark, 2003). Reamer (1998) supported the need for paternalism at times and said that social workers have an obligation to interfere with clients' efforts to end their own lives. However, he also acknowledged that there is debate among social workers about the ethics of euthanasia and physician-assisted suicide.

There are also some ethicists who do not agree on the supremacy of self-determination. Callahan (1992) has written that self-determination may not always serve us well when we are making decisions about euthanasia or physician-assisted suicide. He questioned the wisdom of placing the profession of medicine in the position of arbiter of what determines that a life is good or worth living. When either making or agreeing to a decision that a person's life should end, Callahan asserted, the physician is being taken away from his or her traditional healing role, and involvement with either practice should be avoided. Another view is expressed in a feminist approach to bioethics, which also limits the physician's role by taking a relational view of moral decision making (Gilligan, 1982). From this perspective, the quality, duration, and future of a relationship, including that between patient and doctor, matter in determining what follows. Such a relationship becomes a basis for dialogue toward decision making.

Some spiritual traditions also raise cautions about allowing a person to hasten his or her death. They are concerned that this might preclude the potential for spiritual growth near death. A component of the Christian tradition finds redemptive value in suffering, and perseverance is thought to be a testament to spiritual commitment (Crawley et al., 2000;Young, 1998). Modern trends in humanistic spirituality also consider the transition from life to death as a time of potential deepening spiritual awareness marked by greater forgiveness and love for others (Levine, 1987).

Differing Cultural Views on a Right to Die

Notably absent in the right-to-die literature is a discussion of the role of ethnicity and culture in formulating attitudes toward the right to die. Problems of disparities in the delivery of medical care in the United States due to race are now well documented (Smedley, Stith, & Nelson, 2002). A number of studies have also confirmed that differences in treatment and outcome extend to end-of-life care (Barnato, Chang, Saynina, & Garber, 2007; Crawley et al., 2000; Hopp & Duffy, 2000). Some of these differences may be the result of bias on the part of service delivery personnel, but others may result from differences in desired care. "The United States is home to an increasingly diverse population, where the former dominant culture--EuropeanAmerican (white)--is no longer a majority in some places" (Kagawa-Singer & Blackhall, 2001, p. 2994). Many immigrants from cultures that do not share American individualistic values have difficulty comprehending our approach to ethical decision making, and they may not accept the tenets of Western biomedical ethics:

The cultural values and beliefs that inform the new bioethics practices are white, middle class, and based on western philosophical and legal traditions that emphasize the individual and individual decision making. Successfully implementing "death by decision" depends on a set of cultural attributes, including the open disclosure of distressing information, the desire for control, and future orientation, described elsewhere as the "autonomy paradigm" in bioethics. (Koenig & Gates-Williams, 1995, p. 247)

Health care decision making based on a family orientation rather than patient autonomy may be the norm in some kinship groups (Kagawa-Singer & Blackhall, 2001). Families from such traditions often experience communication problems with medical professionals when discussing end-of-life care (Hoffman et al., 1997; Kagawa-Singer, 1994).

Some groups, such as African Americans, may be more likely than others to desire more life-sustaining treatment and less likely to have completed an advance directive (Kwak & Haley, 2005). Hopp and Duffy (2000) acknowledged that previous disparities in health care can carry over to end-of-life decision making and that African Americans may be fearful that they will be treated differently at the end of life, as they have been during life. With a history of having had treatment options limited, they may be reluctant to forgo treatment when given a choice.

There is new evidence that these kinds of cultural differences may not he universal within ethnic groups. Differences in desire for treatments at the end of life have been found more likely to be the result of health literacy than of race alone (Volandes et al., 2008). There are also indications that immigrants who are more acculturated to American values are more likely to share the patient autonomy model prevalent in the United States (Blackhall et al., 1999).

Many racial, ethnic, and religious groups can have difficulty within the U.S. health care system. The adult children in some Asian families may feel they are not living up to their obligations within the filial piety tradition of caring for elders unless they approve continued aggressive medical care (Kagawa-Singer & Blackhall, 2001). In general, Muslims would not want to use artificial means to continue the life of a person who was not consciously aware, but they would not support actively ending such a life (Vohra, 2006). Focus groups conducted with Arab Muslims and Arab Christians have revealed similar views of opposition to physician-assisted suicide and a preference to die at home, cared for by family members (Duffy, Jackson, Schim, Ronis, & Fowler, 2006).

The active role of family members in decision making in some cultural traditions can seem contradictory to the autonomy principle in Western bioethics and can function to reduce patient autonomy in decision making. Some families may decide matters without even consulting the patient (Beyene, 1992). Others expand the definition of family to include well-trusted people, such as informal "aunties" and religious personnel who might not be recognized by hospital personnel as potential decision makers but whom the family wants involved in decisions (Waters, 2001).


My review of this literature found that social workers are supportive of a right to die in the form of passively hastening death, and in some states about half of social workers support physician-assisted suicide. I also found that the right-to-die literature is lacking in content regarding cultural differences in end-of-life decision making. This deficiency contrasts with the concern among some researchers in bioethics that cultural differences regarding the approach to a right to die are not included in the Western medical ethical point of view. These findings indicate a need for health care practitioners who understand the concerns of patients and their family members as they address difficult end-of-life care decisions.

By combining their current clinical and communication skills in working with families with new knowledge in bioethics and cultural preferences at the end of life, social workers can address family decision making in three ways that will improve end-of-life care for many families.

First, social workers should be public in their support for patient self-determination. It is not known how many patients and their family members understand how important self-determination is to social workers. The principle is firmly fixed as an important ethical standard for social work practice at the end of life (Osman & Perlin, 1994; Rothman, Smith, Nakashima, Paterson, & Mustin, 1996). It was discussed in nearly every article and book that I reviewed regarding social work practice and end-of-life care. With its bioethical corollary, respect for autonomy, self-determination forms the basis for the legal and scientific perspective on bioethics now prevalent in North America and Europe. This autonomy principle is codified in law in the form of the Patient Self-Determination Act (1990) (EL. 101-508) and has been supported by U.S. Supreme Court decisions. Data from the literature reviewed suggest that social workers reflect the national consensus in support of passively hastening death. They may be somewhat more likely than the population to support actively hastening death, as allowed under the Death with Dignity Acts passed in Oregon and Washington. Patients and their family members will benefit from knowing that their social worker will help them reach the decision that is best for the patient.

Second, social workers will need to be more explicit that their support for self-determination extends to both those patients who wish to hasten their deaths and those who do not or who prefer to end their lives in a more culturally familiar way.

The literature included in this review suggests that among those most recently arrived in the United States cultural heritage regarding end-of-life care will trump the dominant autonomy paradigm. Majorities of people in many ethnic and racial groups favor family-oriented rather than individual-based decision making. Unfortunately, cultural differences are not well discussed among advocates for a right to die. Social workers will have to meet the challenge to support families who wish to honor cultural traditions at the end of life while also maintaining their obligation to follow relevant laws regarding patient autonomy in decision making. Most social workers will also have the challenge of balancing cultural views that are opposed to a right to die with their own views in favor of it. Specific training in the influence of culture in end-of-life decision making will be very important.

Third, social workers' traditional educational and bridging role with families and medical personnel will become more important. The duty of this role will expand to include cross-training of both staff members in the cultural tradition of the family and family members in American bioethics and law regarding autonomy in decision making. Specific training in bioethics will be very valuable for social workers. In practice settings, strategic alliances with linguistic and cultural interpreters will aid social workers in bridging the cultural gap.

The literature reviewed here is not all-inclusive, but it is representative of dominant themes regarding self-determination and the influence of law and culture on decisions related to the right to die. Social workers prepared with knowledge of the right-to-die movement and bioethics and competence in responding to cultural concerns will be more likely to have a positive effect on outcomes of families making end-of-life care decisions regardless of what decisions families make.

Original manuscript received May 18, 2009

Accepted July 27. 2009


Barnato, A. E., Chang, C. H., Saynina, O., & Garber, A. M. (2007). Influence of race on inpatient treatment intensity at the end of life. Society off General Internal Medicine, 22, 338-345.

Beauchamp, T. L. (2006).The right to die as a triumph of autonomy. Journal of Medicine and Philosophy, 31, 643-654.

Beauchamp, T. L., & Childress, J. F. (2001). Principles of biomedical ethics. New York: Oxford University Press.

Berger, J. T. (2010). Rethinking guidelines for the use of palliative sedation. Hastings Center Report, 40(3), 32-38.

Beyene,Y. (1992). Cross-cultural medicine: A decade later. Western Journal of Medicine, 157, 328-332.

Blackhall, L. J., Frank, G., Murphy, S.T., Michel, V., Palmer, J. M., & Azen, S. R (1999). Ethnicity and attitudes towards life sustaining technology. Social Science & Medicine, 48, 1779-1789.

Brock, 1). (2004). Physician-assisted suicide as a last-resort option at the end of life. In T. E. Quill & M. Battin (Eds.), Physician-assisted suicide: The case for palliative care and patient choice (pp. 130-149). Baltimore: Johns Hopkins University Press.

Callahan, D. (1992). When self-determination runs amok. Hastings Center Report, 22, 52-55.

Clark, J. (2003). Patient-centered death. British Medical Journal, 327, 174-175.

Colby, W H. (2006). Unplugged: Reclaiming our right to die in America. New York: American Management Association.

Cook, D., Rocker, G., Giacomini, M., Sinuff, T., & Heyland, D. K. (2006). Understanding and changing attitudes toward withdrawal and withholding of life support in the intensive care unit. Critical Care Medicine, 34(Suppl. 11), S317-S323.

Crawley, L., Payne, R., Bolden, J., Payne, T., Washington, R, & Williams, S. (2000). Palliative and end-of-life care in the African American community. JAMA, 284, 2518-2521.

Csikai, E. L. (1999a). Hospital social workers' attitudes toward euthanasia and assisted suicide. Social Work in Health Care, 30, 51-73.

Csikai, E. L. (1999b). The role of values and experience in determining social workers' attitudes toward euthanasia and assisted suicide. Social Work in Health Care, 30, 75-95.

Csikai, E. L., & Chaitin, E. (2006). Ethics in end-of-life decisions in social work practice. Chicago: Lyceum Books.

Duffy, S.A., Jackson, F. C., Schim, S. M., Ronis, D. L., & Fowler, K. E. (2006). Racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care. Journal of the American Geriatrics Society, 54, 150-157.

Furlong, M.A. (2003). Self-determination and a critical perspective in casework: Promoting a balance between interdependence and autonomy. Qualitative Social Work, 2, 177-196.

Galambos, C. M. (1998). Preserving end-of-life autonomy: The Patient Self-Determination Act and the Uniform Health Care Decisions Act. Health & Social Work, 23, 275-281.

Ganzini, L., Harvath, T. A., Jackson, A., Goy, E. R., Miller, L., & Delorit, M.A. (2002). Experiences of Oregon nurses and social workers with hospice patients who requested assisted suicide. New England Journal of Medicine, 347, 582-588.

Gilligan, C. (1982). In a different voice: Psychological theory and women's development. Cambridge, MA: Harvard University Press.

Gottlieb, S. (1999). Right-to-die bills defeated in more than 28 states. Western Journal of Medicine, 171, 274-275.

Greenhouse, L. (2006, January 18). Justices reject U.S. bid to block assisted suicide. New York Times. Retrieved front sec=health&res=9C01E6DB153FF93BA25752C0A 9609C8B63

Hoffman, J. C., Wenger, N. S., Davis, R. B., Teno, J., Conners, A. F., Jr., Desbiens, N., et al. (1997). Patient preferences for communication with physicians about end-of-life decisions. Annals of Internal Medicine, 127, 1-12.

Hopp, F. P., & Duffy, S.A. (2000). Racial variations in end-of-life care. Journal of the American Geriatrics Society, 48, 658-663.

Humphry, D. (2002). Final exit: The practicalities of self-deliverance and assisted suicide for the dying. New York: Dell.

Humphry, D., & Clement, M. (2000). Freedom to die: People, politics, and the right-to-die movement. New York: St. Martin's Griffin.

Kagawa-Singer, M. (1994). Diverse cultural beliefs and practices about death and dying in the elderly. Gerontology and Geriatrics Education, 15, 101-116.

Kagawa-Singer, M., & Blackhall, L. J. (2001). Negotiating cross-cultural issues at the end of life. JAMA, 286, 2993-3001.

Kamakahi, J. J., Cossman, J. S., & Fox, E. (2001).The right-to-die movement: Extrapolating from the national Hemlock Society USA membership survey. Omega, 43, 7-23.

Koenig, B. A., & Gates-Williams, J. (1995). Understanding cultural differences in caring for dying patients. Western Journal of Medicine, 163, 244-249.

Kuehn, B. M. (2007). Hospitals embrace palliative care. JAMA, 298, 1263-1265.

Kwak, J., & Haley, W. E. (2005). Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist, 45, 634-641.

Lee, B. (2004). A model that integrates assisted dying with excellent end-of-life care. In T. Quill & M. Battin (Eds.), Physician-assisted dying: The case for palliative care and patient choice (pp. 190-201). Baltimore: Johns Hopkins University Press.

Levine, S. (1987). Healing into life and death. New York: Anchor Press.

Luce, J. M. (1997a). Making decisions about foregoing life-sustaining therapy. American Journal of Respiratory and Critical Care Medicine, 156, 1715-1718.

Luce, J. M. (l997b). Withholding and withdrawal of life support: Ethical, legal, and clinical aspects. New Horizons, 5(1), 30-37.

Mackelprang, R.W., & Mackelprang, R. D. (2005). Historical and contemporary issues in end-of-life decisions: Implications for social work. Social Work, 50, 315-324.

Meisel, A. (2004). Right to die, policy and law. In S. G. Post (Ed.), Encyclopedia of bioethics (3rd ed., Vol. 4, pp. 2385-2396). NewYork: Macmillan Reference.

Miller, L., Harvath, T. A., Ganzini, L., Goy, E. R., Delorit, M. A., & Jackson, A. (2004). Attitudes and experiences of Oregon hospice nurses and social workers regarding assisted suicide. Palliative Medicine, 18, 685-691.

Miller, P. J., Hedlund, S. C., & Murphy, K.A. (1998). Social work assessment at end of life: Practice guidelines for suicide and the terminally ill. Social Work in Health Care, 26(4), 23-36.

Miller, P. J., Hedlund, S. C., & Soule, A. B. (2006). Conversations at the end of life: The challenge to support patients who consider death with dignity in Oregon.

Journal of Social Work in End-of-Life & Palliative, Care, 2(2), 25-43.

National Association of Social Workers. (1997). Code of ethics. Washington, DC: Author.

National Association of Social Worker. (2004). NASW standards for social work practice in palliative and end of life care. Washington, DC: Author.

National Association of Social Workers. (2009). End-of-life care. In Social work speaks: National Association of Social Workers policy statements (8th ed., pp. 114-120). Washington, DC: NASW Press.

Office of Disease Prevention and Epidemiology (2008). Summary of Oregon's Death with Dignity Act--2008. Salem: Oregon Department of Human Services.

Ogden, R. D., & Young, M. G. (2003).Washington state social workers' attitudes toward voluntary euthanasia and assisted suicide. Social Work in Health Care, 37(2), 43-70.

Osman, H., & Perlin, T. M. (1994). Patient self-determination and the artificial prolongation of life. Health & Social Work, 19, 245-252.

Patient Self-Determination Act, P.L. 101-508, 104 Stat. 1388-115 (199(3).

Pence, G. (2004). Classic cases in medical ethics. Boston: McGraw-Hill.

Pew Research Center. (2006). Strong public support for right to die. Retrieved from report/266/strong-public-support-for-right-to-die

Prendergast, T.J., Classens, M.T., & Luce, J. M. (1998). National survey of end-of-life care for critically ill patients. American Journal of Respiratory and Critical Care Medicine, 158, 1163-1167.

Prendergast, T.J., & Luce, J. M. (1997). Increasing incidence of withholding and withdrawal of life support from the critically ill. American Journal of Critical Care Medicine, 155, 15-20.

Public Agenda. (2001, August). Assisted-suicide laws in the United States. Retrieved from http://www.

Quill, T. E., & Battin, M. P (2004). Physician-assisted dying: The case for palliative care and patient choice. Baltimore: Johns Hopkins University Press.

Reamer, F. G. (1998). Ethical standards in social work: A critical review of the NASW Code of Ethics. Washington, DC: NASW Press.

Rothman, J., Smith, W., Nakashima, J., Paterson, M. A., & Mustin, J. (1996). Client self-determination and professional intervention: Striking a balance. Social Work, 41, 396-405.

Schone-Seifert, B. (1995). Harm. In W. T. Reich (Ed.), Encyclopedia of bioethics (Rev. ed., Vol. 2, pp. 1021-1025). New York: Macmillan.

Smedley, B. D., Stith, A.Y., & Nelson, A. R. (Eds.). (2002). Unequal treatment: Confronting racial and ethnic disparities in healthcare. Washington, DC: National Academies Press.

Truog, R. D., & Cochrane, T. I. (2005). Refusal of hydration and nutrition: Irrelevance of the "artificial" vs. "natural" distinction. Archives of Internal Medicine, 165, 2574-2576.

Vohra, S. S. (2006). An American Muslim's right to die: Incorporating Islamic law into the debate. Journal of Legal Medicine, 27, 341-359.

Volandes, A. E., Paasche-Orlow, M., Gillick, M. R., Cook, E. F., Shaykevich, S., Abbo, E. D., & Lehmann, L. (2008). Health literacy not race predicts end-of-life care preferences. Journal of Palliative Medicine, 11, 754-762.

Waters, C. M. (2001). Understanding and supporting African Americans' perspectives of end-of-life care planning and decision making. Qualitative Health Research, 11, 385-398.

Wesley, C. A. (1996). Social work and end-of-life decisions: Self-determination and the common good. Health & Social Work, 21, 115-121.

Young, A. (1998). Natural death and the work of perfection. Christian Bioethics, 4, 168-182.

Andrew J. McCormick, PhD, LICSW, is a social worker at Harborview Medical Center, University of Washington, 325 9th Average, Box 359760, Seattle, WA 98104; e-mail:
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Author:McCormick, Andrew J.
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Date:Apr 1, 2011
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