The Cambridge textbook of bioethics

284H. Kayman, H. Radest, and S. Webb

(Rubinson et al., 2005) have suggested using only interventions that are known to improve survival and without which death is likely, that are not very expensive, and that can be implemented without consuming extensive staff or hospital resources. These guidelines should also be used for patients already receiving care in an intensive care unit who are not casualties of an attack. Emergency workers and caregivers, even if asymptomatic, should probably be given priority for receiving medical care or prophylaxis to preserve the pool of available clinicians. However, every effort must be put forward to ensure non-discriminatory evaluation and treatment, as surveys have shown that the public believes that influence, wealth, and younger age impact the rapidity and degree of treatments given (Blendon et al., 2003; Human Rights Center and East–West Center (Honolulu), 2005).

Clinicians will feel the need to protect themselves and their families. Ordinarily, they manage to balance conflicting obligations between their own needs, the needs of their families, the needs of their patients, and communities (Goldrich and Polk, 2004). Suddenly faced with serious risk to themselves or to their families, that ordinary balance is likely to be unavailable. It remains controversial whether it is ethically permissible to alter a triage algorithm to protect a clinician’s family members if they are at less risk than others. However, those who then do not receive limited resources are likely to feel and express their outrage.

Quarantine

Clinicians may have to aid in placing entire populations into quarantine (Gostin, 2003a; Institute for Bioethics Health Policy and Law, 2003). To complicate matters further, some of these populations will be made up of people who have been wronged by their societies and who will be resentful and mistrustful of authority, including medical authority (Krieger and Birn, 1998; Covello and Sandman, 2001).

Transparent, understandable, and truthful communication about the potential for initiating

quarantine during communicable disease outbreaks or acts of bioterrorism may alleviate some of the public’s mistrust in advance. This becomes absolutely essential when crises strike (Kurland, 2002; Gostin, 2003b; Gostin et al., 2003). Frightened and desperate people will not understand what is happening to them nor the reasons for the sacrifices of freedom, privacy, and comfort that they are asked to make. Quarantine may also cause significant economic harm to individuals who will lose their income by missing work. As epidemics or crises evolve, leaders may need to revise social distancing strategies, and these ‘‘course changes’’ may further alienate the public and lead to mistrust and confusion.

The first case outlined at the start of this chapter, hysteria and misunderstanding within the community led to the social stigmatization, discrimination, economic losses, and psychological injury seen not only in exposed victims but also in those with potential exposure to the deadly contagion. Similarly, linking severe acute respiratory syndrome (SARS) in North America to visitors from China caused widespread avoidance by the public of Asian businesses or communities, causing serious economic losses. Another example was seen in the Canadian SARS outbreak, where many people were denied access to healthcare during the quarantine process, and consequently some died from treatable diseases such as myocardial infarction or infections. During quarantine, such concerns about bodily integrity, right to privacy, a commitment to distributive and procedural justice, due process, and the right for people to control their own property and destiny will emerge (Kass, 2001; American Public Health Association, 2002).

Clinicians also need to prepare for the medical, emotional, and logistical challenges that they will face. Until social and political order can be restored, a shift in clinicians’ commitments is necessary during both triage and quarantine from respecting the fiduciary relationship with a single patient to minimizing suffering for the largest possible number of patients in a fair and just manner. While some experts feel that only public health officers

and not physicians should act in this broader ‘‘civic’’ role, many others stress that this shift in commitments to maximize the public’s health is part of a physician’s professional obligation (Wynia and Gostin, 2004).

Other ethical issues

As is evident from our description of what clinicians face in catastrophe, tools to help to deal with the deep moral concerns that will arise are as essential as the medical algorithms for treatment of mass casualties or toxic or infectious exposures. Ethics overlaps with legal issues (Gostin, 2002; The Turning Point Public Health Statute Modernization National Excellence Collaborative, 2003), law enforcement issues, psychological issues, spiritual issues, interpersonal issues, social issues, and communication issues (McKenna et al., 2003). Yet ethics has its special role to play: to work out what clinicians ought and ought not to do in the situations in which they find themselves. Of course, clinicians do not come to crisis without a good deal of ethical experience and without their own moral values. Fortunately, ethical decision making is also facilitated by professional codes and practices. In other words, while some of the language of ethics may be esoteric, the essence of ethical deliberation is approachable if considered in advance and incorporated into preparedness plans.

How should I approach emergency and disaster scenarios in practice?

Preparing for ethical decision making in crisis must be part of training for catastrophe. Briefly, this should include how to identify ethical issues, how to deal with them, and not least of all, how to evaluate them in order to improve future moral performance (Singer et al., 2003). Ethical decision making requires consideration of the medical, political, religious, social, and economic factors that taken together raise ethical issues. The values of the community in which they arise contribute as well to their complexity. So, insofar as possible,

ethical decision making needs an interdisciplinary approach. No single specialty or point of view can be adequate.

Many tools for approaching ethical dilemmas in public health are available (Public Health Leadership Society, 2002). One should be familiar with the foundational principles of bioethics decision making: autonomy, beneficence, non-maleficence, and justice (Beauchamp and Childress, 2001). Exploration of different moral perspectives like rights (Uzgalis, 2001), distributive justice (Rawls, 1971), consequences (Solomon, 2000), and universal ideals (Koterski, 2000) may enhance ethical deliberation in situations involving the tension between individual liberty and the common good. The ‘‘precautionary principle’’ provides an excellent framework for sound ethical decision making. It requires transparency of plans and actions, inclusiveness of the affected population in the decision-making process, a commitment to accountability, and an awareness that action, even coercive action, must be taken in the face of uncertainty when there is a serious threat to the public welfare (Tickner, 2002; Kayman, 2006).

In crisis, early recognition of the signs of ethical tension is important. For example, a growing sense of discomfort or an unwillingness to communicate openly about a situation suggests that there is likely an underlying ethical dilemma confounding the situation. When possible, consultation with a multidisciplinary team or bioethicist trained in ethical deliberation is recommended. Those in state, federal, and international public health leadership positions should begin a dialogue on how to best encourage the development of such deliberative bodies, even for ordinary times. A group including nurses, social workers, chaplains, administrators, and community members can provide moral perspective and support. In the midst of crisis, this may not be possible. But if it is – and it is advisable to make every effort to have such a group available – its members will understand that they must make decisions quickly with limited, perhaps incorrect, information.

One obvious tension in crisis situations is between individual rights and freedoms and the public’s health and common good. It is likely that ethical

286H. Kayman, H. Radest, and S. Webb

problems will arise anytime that liberty, freedom of association, and freedom of movement are restricted. A landmark US Supreme Court ruling (1905) in Jacobson v. Massachusetts mandates that coercive public health action must be shown to be effective, necessary, least restrictive possible, proportional, and impartial. The Public Health Code of Ethics (Thomas et al., 2002) can also provide guidance for public health officials and clinicians during catastrophes.

In the second case opening this chapter, another tension is highlighted: between a clinician’s duty to treat and preserving one’s own health and safety. As seen in this case and historically in the plague and the recent SARS epidemic, clinicians must weigh the considerable health risks to themselves and their families against their professional duty to care for others. The majority of health professionals rise to the challenge, even risking (and suffering) mortality. Although the original 1847 American Medical Association’s Code of Ethics stated, ‘‘When pestilence prevails it is [physicians’] duty to face the danger . . . even at the jeopardy of their own lives,’’ some health professionals now place their own safety ahead of those patients who need their care. Because most professional codes emphasize duty over potential harm to self, healthcare institutions have an obligation during crises to promote the safety of and minimize risks to their healthcare workers. Individual clinicians are urged to consider in advance how their own moral decision making can help them to balance professional and personal obligations.

Retrospective analysis by bioethicists of ethical issues that emerge during crises, such as the SARS epidemic, can help to enable better preparation for future events and is strongly recommended (Singer et al., 2003). The evaluation in the aftermath of a crisis might include outcomes indices in various population groups, including people from different socioeconomic situations, ethnicities, ages, and gender. Research efforts by interdisciplinary teams of policy makers, academicians, healthcare providers, and community groups should focus, not only on mortality, but on the incidence of

displaced peoples, of social isolation or quarantine, of variable economic losses, and so on to help communities to improve future public health or management strategies. A recent report (Daniels, 2006) has emphasized utilizing five benchmarks to address dimensions of equity: exposure of people to public health risks, inequalities in the distribution of the social determinants of health; financial and non-financial barriers to access to care; inequalities in the benefits for different groups; and the burden of healthcare cost among those less able to pay.

The keys to minimizing ethical dilemmas in times of emergencies and disasters include a basic familiarity with ethical concepts and tools, and a recognition that although uncertainty and chaos can confound all situations, an equitable, transparent, and organized approach can foster trust and cooperation among large numbers of those affected. Interdisciplinary planning with clinicians, the community, law enforcement, public health officials, and politicians is of paramount importance. Clinicians will be faced with difficult moral choices favoring the health of the public over the health of the individual. A commitment should be made that the response system will be fair, and that people will have recourse to express their concerns to formulate improvement.

REFERENCES

Agency for Healthcare Research and Quality (2002). Bioterrorism Preparedness and Response: Use of Information Technologies and Decision Support Systems. Rockville, MD: Agency for Healthcare Research and Quality (http://www.ahrq.gov/clinic/epcsums/bioitsum.htm) accessed 27 August 2006.

American Hospital Association (2007). The 2007 State of America’s Hospitals: Taking the Pulse; Findings from the 2007 AHA Survey of Hospital Leaders (ppt). Washington, DC: American Hospital Association www.aha.org/aha/ research-and-trends/.

American Medical Association (2004). Core Disaster Life Support, Provider Manual, version 2.0. Chicago, Il: American Medical Association.

American Public Health Association (2002). Guiding Principles for a Public Health Response to Terrorism. Washington, DC: American Public Health Association (http://www.apha.org/united/phresponseterrorism.htm) accessed 8 September 2006.

Beauchamp, T. and Childress, J. (2001). Principles of Biomedical Ethics, 5th edn. New York: Oxford University Press.

Blendon, R. J., DesRoches, C. M., Benson, J. M., et al. (2003). The public and the smallpox threat. N Engl J Med 348: 426–32.

Centres for Disease Control and Prevention (2006). Public health response to Hurricanes Katrina and Rita: United States, 2005. MMWR Morb Mortal Wkly Rep 55: 229–31.

Church, J. for the Department of Defense (2001). Neighborhood Emergency Help Center: A Mass Casualty Care Strategy for Biological Terrorism Incidents. Washington, DC: Government Printing Office (http://www.nnemmrs. org/documents/Neighborhood%20Emergency%20Help %20Center%20–%20A%20Mass%20Casualty%20Care %20Strategy%20for%20Biological%20Terrorism%20 Incidents.pdf#search=%22neighborhood%20emergency %20help%20center%20mass%20casualty%20care%20 strategy%22) accessed 27 August 2006.

Council on Ethical and Judicial Affairs (2004a). Opinion 2.03. Allocation of limited medical resources. In Code of Medical Ethics: Current Opinions with Annotations, 2004–2005 edn. Chicago, IL: AMA Press.

Council on Ethical and Judicial Affairs (2004b). Principle IX, principles of medical ethics. In Code of Medical Ethics: Current Opinions with Annotations, 2004–2005 edn. Chicago, IL: AMA Press.

Covello, V. and Sandman, P. (2001). Risk communication: evolution and revolution. In Solutions to an Environment in Peril, ed. A. Wolbarst. Baltimore, MD: Johns Hopkins University Press, pp. 164–78.

Daniels, N. (2006). Toward ethical review of health system transformations. Am J Public Health 96: 447–51.

Emergency Management Institute (2005). FEMA Independent Study Program: IS-l;195 Basic Incident Command System. Washington, DC: Government Printing Office (http://www.training.fema.gov/EMIWeb/IS/is195.asp) accessed 27 August 2006.

Glass, T. A. and Schoch-Spana, M. (2002). Bioterrorism and the people: how to vaccinate a city against panic.

Clin Infect Dis 34: 217–23.

Goldrich, M. and Polk, S. (2004). Physicians’ obligation to accept personal risk in the provision of medical care. In Report 3-I-03 of the Council on Ethical and Judicial Affairs. Chicago, IL: American Medical Association.

Gostin, L. O. (2002). Public Health Law: Power, Duty, Restraint. Berkeley, CA: University of California Press.

Gostin L. O. (2003a). The Law and Bioethics Report, Vol. 2, No. 4: Public Health and Civil Liberties in an Era of Bioterrorism. Louisville, KT: University of Louisville (http://www.louisville.edu/medschool/ibhpl/lab_report/ index.html) accessed 27 August 2006.

Gostin, L. O. (2003b). When terrorism threatens health: how far are limitations on personal economic liberties justified? Florida Law Rev 55: 1105.

Gostin, L. O., Bayer, R., and Fairchild, A. L. (2003). Ethical and legal challenges posed by severe acute respiratory syndrome: implications for the control of severe infectious disease threats. JAMA 290: 3229–37.

Hick, J. L., Hanfling, D., Burstein, J. L., et al. (2004). Health care facility and community strategies for patient care surge capacity. Ann Emerg Med 44: 253–61.

Holden, P. J. (2005). The London attacks – a chronicle: improvising in an emergency. N Engl J Med 353: 541–3.

Human Rights Center and East–West Center (Honolulu) (2005). After the Tsunami: Human Rights of Vulnerable Populations. Berkeley, CA: University of California Press.

Institute for Bioethics Health Policy and Law (2003).

Quarantine and Isolation: Lessons Learned from SARS. A Report to the Centers for Disease Control and Prevention. Louisville, KT: University of Louisville (http:// www.louisville.edu/medschool/ibhpl/publications/ SARS%20REPORT.pdf) accessed 27 August 2006.

Jacobson v Massachusetts (1905) 25 s. cf. 358.

JCAHO (2004). Joint Commission International Newsletter. Standards link: Coordinating Community Efforts to Respond to Emergencies. Oakbrook, Terrance, IL: Joint Commission on Accreditation of Healthcare Organizations (http://www.jcrinc.com/subscribers/intlnewsletter. asp?durki=7574&site=49&return=6757) accessed 27 August 2006.

Kass, N. E. (2001). An ethics framework for public health.

Am J Public Health 91: 1776–82.

Kayman H. (2006). From principles to public health programs through uncertainty. J S Carolina Med Assoc, in press.

Koterski, J. (2000). Natural law and human nature. In The Great Courses. Springfield, MA: The Teaching Company, course 4453.

Krieger, N. and Birn, A. E. (1998). A vision of social justice as the foundation of public health: commemorating 150 years of the spirit of 1848. Am J Public Health 88: 1603–6.

Kurland, J. (2002). The heart of the precautionary principle in democracy. Public Health Rep 117: 498–500.

Landesman, L. (2005). Public Health Management of Disasters: The Practice Guide, 2nd edn. Washington, DC: American Public Health Association.

Malecki, J. (2001). Letters Laced with Anthrax. Palm Beach, FL: Health Commission.

McKenna, V. B., Gunn, J. E., Auerbach, J., et al. (2003). Local collaborations: development and implementation of Boston’s bioterrorism surveillance system. J Public Health Manag Pract 9: 384–93.

Pesik, N., Keim, M. E., Iserson, K., et al. (2001). Terrorism and the ethics of emergency medical care. Ann Emerg Med 37: 642–6.

Public Health Leadership Society (2002). Principles of the Ethical Practice of Public Health. New Orleans, LA: PHLS (http://www.phls.org/products.htm) accessed 27 August 2006.

Rawls, J. (1971). A Theory of Justice. Cambridge, MA: Belnap Press of Harvard University.

Rubinson, L., Nuzzo, J. B., Talmor, D. S., et al. (2005). Augmentation of hospital critical care capacity after bioterrorist attacks or epidemics: recommendations of the Working Group on Emergency Mass Critical Care.

Crit Care Med 33: 2393–403.

Singer, P. A., Benatar, S. R., Bernstein, A. S. et al. (2003). Ethics and SARS: lessons from Toronto. BMJ 327: 1342–4.

Solomon, R. (2000). Mill’s ultilitarianism. In The Great Courses: The Great Minds of Western Intellectual

Tradition. Springfield, VA: The Teaching Company, course 470.

The Turning Point Public Health Statute Modernization National Excellence Collaborative (2003). Model State Public Health Act: A Tool for Assessing Public Health Laws. Seattle, WA: University of Washington (http:// www.turningpointprogram.org/Pages/pdfs/statute_mod/ MSPHAfinal.pdf) accessed 27 August 2006.

Thomas, J. C., Sage, M., Dillenberg, J., and Guillory, V. J. (2002). A code of ethics for public health. Am J Public Health 92: 1057–9.

Tickner, J. A. (2002). Precautionary principle encourages policies that protect human health and the environment in the face of uncertain risks. Public Health Rep 117: 493–7.

USDA Forest Service (2004). Fire and Aviation Management. Washington, DC: USDA Forest Service (http:// www.fs.fed.us/fire/) accessed 27 August 2006.

Uzgalis, W. (2001). John Locke. In The Stanford Encyclopedia of Philosophy, ed. E. N. Zalta. Stanford, CA: University of Stanford (http://plato.stanford.edu/archives/fall2005/ entries/locke/).

Waeckerle, J. F., Seamans, S., Whiteside, M., et al. (2001). Executive summary: developing objectives, content, and competencies for the training of emergency medical technicians, emergency physicians, and emergency nurses to care for casualties resulting from nuclear, biological, or chemical incidents. Ann Emerg Med 37: 587–601.

Wynia, M. K. and Gostin, L. O. (2004). Ethical challenges in preparing for bioterrorism: barriers within the health care system. Am J Public Health 94: 1096–102.

A primary care physician that works in a small, remote hospital diagnoses a patient with lung cancer and refers the patient to a distant large medical center for treatment. After several overnight trips to the medical center, the patient returns to the primary care provider to indicate that she is no longer willing to travel and wants to receive care at the small hospital.

A rural psychologist, also a member of the town’s school board, discovers during a family counseling session that one of the patients, a schoolteacher, has missed many teaching days because of a significant alcohol problem.

A family physician treats a long-term patient for a minor work-related injury. The patient is very depressed and tearful but refuses to discuss it. The physician encourages the patient to see a mental health professional to be further assessed and, if needed, receive treatment. The patient acknowledges feeling depressed but does not want help. If people see his truck at the mental health provider’s office, everyone will know that he has ‘‘that’’ type of problem. The patient also requests that the physician not make any reference to depression in his medical record, because his sister-in-law works at the doctor’s office.

What is rural healthcare ethics?

In A Fortunate Man, Berger and Mohr (1967, pp. 13–15) provided a deeply compelling portrait of an English country doctor who lives and provides care in a remote, rural community: ‘‘Landscapes can be deceptive. Sometimes a landscape seems to be less a setting for the life of its inhabitants than a curtain behind which struggles, achievements and accidents take place. For those who are behind the

curtain, landmarks are no longer only geographic but also biographical and personal.’’ Rather than feeling discouraged by his professional isolation and stressful workload as a ‘‘one-man hospital’’ and its challenging situations, we are uplifted by the depth of his relationships and commitment to the people of a remote community. In this story of a country doctor, we are taken behind the curtain to a unique setting, unknown and rarely understood by many who live in metropolitan and urban settings.

Authors have reported from different countries that what makes the rural community unique is not just its small population density or distance to an urban setting but also the combination of its social, geographical, cultural, religious, and personal values as well as its residents’ economic and health status (Flannery, 1982; Bushy, 1994; Ricketts et al., 1998; Roberts et al., 1999a; Ricketts, 2000; Gamm et al., 2003; Kelly, 2003; Institute of Medicine, 2005). A rural community’s health beliefs, overall health status, geographic isolation, access to healthcare, and limited ethics services play a influential role in the nature and frequency of ethical issues faced by healthcare professionals as well as in the manner in which they respond. Rural healthcare ethics focuses ethical reflection through the application of ethical concepts and ethical standards of healthcare practices to challenges that occur in rural settings. A need exists for the rural setting to be understood as culturally distinct from the urban setting, which has been the primary focus of healthcare ethics (Purtilo, 1987; Roberts et al., 1999a; Cook and Hoas, 2001).

290W. A. Nelson and J. M. Schmidek

Why is rural healthcare ethics important?

There are four reasons for the importance of considering rural healthcare ethics. The first reason is the large number of people living, working, and receiving healthcare in rural communities. In 2001, 30.4% of Canada’s population lived in rural communities (Canadian Rural Partnership Research and Analysis Unit, 2002). In the UK, 19% or 9.5 million people live in rural areas (Department for Environment, Food and Rural Affairs, 2004). In the USA, approximately 59 million people, roughly 21% of the population, live in rural, ‘‘non-metropolitian’’ communities according to the 2000 United States Census (Institute of Medicine, 2005); however, variations in the definition and methodologies used to define rural areas have resulted in several estimates (Institute of Medicine, 2005).

The second reason is the distinctive characteristics of residents of rural communities. In the USA, the rural population has a lower median income per household (US Department of Housing and Urban Development, 2000) and higher poverty rates than the urban population (Institute of Medicine, 2005). In 2000, 23% of US children in ‘‘completely rural, non-adjacent counties’’ lived in poverty (Economic Research Service, 2005). Rural residents are also more likely to be underinsured or uninsured (Ziller et al., 2003), further increasing the financial hardship of interacting with the healthcare system (Ricketts, 2000). Compared with the urban population living in metropolitan counties, residents of the US rural population have a higher age-adjusted mortality rate (National Center for Health Statistics, 2005); a higher probability for a chronic or life-threatening disease (Braden and Beauregard, 1994); a higher proportion of vulnerable residents, specifically children and the elderly, who require more health services (National Center for Health Statistics, 2001a); higher rates of particular mental health issues including substance abuse (Institute of Medicine, 2005) and suicide (National Center for Health Statistics, 2001b); and encounter a greater prevalence of environmental and occupational related hazards (Ricketts, 2000).

A large study of US veterans concluded that, when compared with urban veterans, those living in a rural setting have worse health-related quality of life scores (Weeks et al., 2004). Similar health inequalities between rural and urban populations have been reported in other countries, for instance, in Canada (Romanow, 2002).

The third reason is that there are fewer healthcare providers per capita for rural populations than for urban populations. About 9% of physicians practice in rural America although roughly 21% of the population lives in those areas (Rosenblatt and Hart, 1999; Institute of Medicine, 2005). These disparities encompass a wide range of healthcare professionals other than physicians, such as nurses, social workers, dentists, and, in particular, mental health professionals (Wagenfeld et al., 1994; Goldsmith et al., 1997; Holzer et al., 1998; Rost et al., 1998; Hartley et al., 1999; Bird et al., 2001; Baldwin et al., 2006; Johnson et al., 2006; Rosenblatt et al., 2006).

In addition to these three factors shaping the frequency and nature of rural ethics issues, the fourth reason why rural healthcare ethics is important is because there are limited ethics resources focused on rural issues. In the USA, these limitations include the number of bioethicists (Nelson and Weeks, 2006), a rural-focused literature (Nelson et al., 2006), ethics committees, adequately trained ethics consultants, and opportunities for rural ethics education (Niemira, 1988; Cook and Hoas, 2001; Cook et al., 2002; Nelson, 2004). In addition, numerous barriers contribute to the lack of existing or effective ethics committees in rural communities, including the lack of ethics expertise, time and financial resources to support ethics training and education, an understanding of rural communities, and the use of a urban model for ethics committees in the rural healthcare facility (Niemira et al., 1989a, b; Bushy and Rauh, 1991; Moss, 1999; Cook and Hoas, 2000, 2001; Cook et al., 2000a; Nelson, 2006). As a consequence of the limited rural ethics-related resources, rural clinicians are hampered in their efforts to seek rural ethics training, and, when consulting the clinical ethics literature,

find that the material has such an urban focus that it proves unhelpful (Roberts et al., 1999b; Cook and Hoas, 2001; Cook et al., 2000a). It has been noted that ‘‘bioethics is an urban phenomenon,’’ because its focus emanates from large, university, tertiary care hospitals, and the ‘‘latest hot research topic,’’ all intended for an urban audience (Hardwig, 2006, p. 53).

Ethics

With an understanding of rural healthcare comes an emerging awareness of the special ethical considerations inherent to clinical practice in closely knit, tightly interdependent small communities (Nelson and Pomerantz, 1992a; Bushy, 1994; Roberts et al., 1999a; Cook and Hoas, 2001; Roberts and Dyer, 2004). Because of the distinct characteristics of the rural community, the identification and solutions that rural practitioners might employ to address ethical conflicts may differ from their urban counterparts (Roberts et al., 1999a; Cook and Hoas, 2000, 2001; Nelson, 2004). In a rural setting, for example, it might be necessary to provide healthcare to a family member, friend, or neighbor; whereas, in a urban setting, it permits for greater role separation and clearer personal and professional boundaries since other healthcare clinicians, facilities, and more diverse health resources might exist in more the immediate area (Purtilo and Sorrell, 1986; Sobel, 1992; Schank, 1998; Roberts et al., 1999a; Cook et al., 2001; Roberts and Dyer, 2004).

Responses of healthcare professionals to all ethical conflicts are expected to be in accordance with generally accepted ethical principles or standards of practice, such as informed consent. However, community values inherent to rural settings influence healthcare decision making, including self-reliance and self-care; the use of informal supports, such as neighbors, family, and church members; a strong work ethic; and a different perception of illness, where, illness occurs when a person cannot work (Bushy, 1994). Roberts et al. (1999a, p. 33) commented that these ‘‘Cultural issues . . . sometimes

exert a greater influence on rural than urban healthcare because local customs and practices may affect a greater proportion of a caregiver’s practice.’’ Since identification and solutions to ethical issues in rural areas may differ from urban areas (Roberts et al., 1999a; Cook and Hoas, 2000, 2001; Nelson, 2004), rural clinicians may experience dissatisfaction with professional ethics codes and ethical standards of practice that are primarily urban focused (Niemira, 1988; Cook and Hoas, 2000; Roberts et al., 1999b; Cook et al., 2002) and, in general, provide inadequate insight into how the rural context might influence ethical decision making.

Several articles have suggested that the quality of care of rural residents might be adversely impacted because of the limited amount and variety of available healthcare services and the insufficient array of healthcare professionals (Moscovice and Rosenblatt, 2000; Cook et al., 2002; Gallagher et al., 2002; Weeks et al., 2004). Isolation from specialists and specialized technological resources force the provider to make decisions based more on clinical impression rather than the most up-to-date specialty knowledge and technology. Some rural providers believe this compromises the quality of care they can deliver (Turner et al., 1996; Cook and Hoas, 2000; Cook et al., 2000b) and the ethical norms of the medical profession.

Geographic isolation of rural communities might also give rise to ethical issues. Distance to and between healthcare professionals and facilities in rural regions can be extensive, thereby limiting their accessibility to rural residents (Nelson and Pomerantz, 1992b; Bushy, 1994; Rosenthal et al., 2005; Chan et al., 2006). Distance to healthcare services can be additionally problematic because of the lack of public transportation, challenging roads, and weather-related barriers (Cook and Hoas, 2001).

Resistance or refusal to be transferred to urban and tertiary-care centers through fear of the unfamiliar urban setting is not uncommon among rural patients (Nelson and Pomerantz, 1992a). This resistance or refusal leaves many rural clinicians conflicted because a competent patient refuses

292W. A. Nelson and J. M. Schmidek

care that the clinician believes is essential. Related ethical conflicts include how aggressively the clinician should attempt to persuade a patient to seek treatment in a distant, urban medical center. If the patient maintains their refusal, the clinician must address the burden by providing, presumably, less than an optimal level of care. This ethical issue is accentuated by legal concerns when professionals believe they are practicing outside their scope of competence (Roberts et al., 1999b).

Overlapping or multiple relationships can influence and become the source of many ethical conflicts faced by rural healthcare professionals. Because healthcare clinicians might have multiple roles within the community, for example as a physician, as a school board member, and as a neighbor, relationships with patients in rural settings might foster boundary-related ethical conflicts (Purtilo and Sorrell, 1986; Miller, 1994; Roberts et al., 1999a, b; Cook and Hoas, 2001; Cook et al., 2001; Larson, 2001). However, disengagement of the provider from multiple relations may lead to a sense of rejection, a lack of trust, and produce a less productive clinical relationship (Cook and Hoas, 2001). Rural clinicians might experience ethical conflicts since they routinely try to balance competing needs, such as that of the individual patient versus the community.

Because of the familiarity and frequent contact among healthcare professionals with patients, their families, and other community members, rural healthcare providers might often face situations that make privacy and confidentiality difficult (Woods, 1977; Spiegel, 1990; Jennings, 1992; Sobel, 1992; Ullom-Minnoch and Kallail, 1993; Rourke and Rourke, 1998; Schank, 1998; Roberts et al., 1999a, b; Simon and Williams, 1999; Glover, 2001; Cook et al., 2002; Campbell and Gordon, 2003) resulting in ethical conflicts (Simon and Williams, 1999; Henderson, 2000). For example, healthcare facilities are one of the largest employers in some small towns, so it is not uncommon for a patient’s relative or neighbor to be a member of the healthcare professional’s staff or even the billing clerk who records diagnoses.

Disease stigma might lead to ethical conflicts because of the extent of knowledge rural residents have about one another (Roberts et al., 1999a). Clinicians may be reluctant to record in a medical record a stigmatizing diagnosis, such as HIV, a mental illness, or a sexually transmitted disease. Rural residents may be uncomfortable with the prospect of disclosure of such information to the clinician or may not seek necessary care (Flannery, 1982; Purtilo, 1987; Nelson and Pomerantz, 1992a; Bushy, 1994; Ricketts et al., 1998; Ricketts, 2000; Kelly, 2003).

Policy

Rural populations are a critical concern in discussions of the provision of an appropriate standard of care, health disparities, and the allocation of government healthcare resources in many countries, including the UK (Cox, 1997), Canada (Romanow, 2002; Maddalena and Sherwin, 2004), and the USA (Institute of Medicine, 2005). For instance, in the USA, the Institute of Medicine’s report

Quality Through Collaboration: The Future of Rural Health Care outlined a five-point strategy and made 11 recommendations regarding the quality of healthcare provided to or in rural populations (Institute of Medicine, 2005, pp. 1–18). The recruitment and education of physicians and other healthcare professionals to rural areas are recognized in many countries as particularly significant policy concerns. Strategies have been developed to address these needs of the vulnerable rural population (Cox, 1997; Boffa, 2002; Romanow, 2002; Institute of Medicine, 2005).

Since healthcare policy is regionalized in Canada, ethics committees to aid governing authorities exist to provide specialized reviews regarding research, clinical, or organizational ethics issues (Maddalena and Sherwin, 2004, p. 235). Ethics committees that help to supplement rural and remote health authorities face challenges and might even not exist owing to geographical isolation, the lack of adequate trained members, and insufficient financial support. Some authorities utilize the services of

an urban ethics committee; however, such a committee is unable to take into account the rural perspective (Maddalena and Sherwin, 2004, pp. 235–7).

Empirical studies

Various studies have identified ethical issues encountered in rural settings in the USA (Purtilo and Sorrell, 1986; Robillard et al., 1989; UllomMinnich and Kallail, 1993; Turner et al., 1996; Roberts et al., 1999a, b, 2005; Cook et al., 2000a, b, 2002; Cook and Hoas, 2000, 2001; Warner et al., 2005). The commonly noted ethical issues arising in rural communities included safeguarding confidentiality and privacy, boundary conflicts due to overlapping relations, access to healthcare services, allocation of healthcare resources, inability to pay for healthcare, disease stigma, clinician–patient relationship, informed consent, and community cultural value conflicts. In India, another study explored patient satisfaction with medical professionals’ ability to communicate medical information among hospitalized patients between urban and rural settings (Sriram et al., 1990). Although these studies provide an understanding of ethical issues occurring in rural settings, the generalizability of four studies (Purtilo and Sorrell, 1986; Robillard et al., 1989; Turner et al., 1996; UllomMinnich and Kallail, 1993) are limited since many had a small sample size, a low response rate, or were conducted in limited geographic locations (Roberts et al., 1999a, p. 31). These limitations have continued in other studies.

Cook and others have noted differences between the availability, frequency, and competency of rural ethics committees (Cook et al., 2000a). A survey of 117 rural hospitals, mainly of administrators, in six states in the USA found that only 41.2% of the hospitals had an ethics committee or similar mechanism. Data suggest a predictive relationship between the size of the hospital, the presence of an ethics committee, and accreditation from the Joint Commission on Accreditation of Healthcare Organizations.

In a literature review using an established methodology for conducting literature searches, Nelson and others found that despite initially identifying 57 000 articles broadly related to bioethics published between 1966 and 2004, only 86 publications specifically and substantively addressed rural healthcare ethics issues, with 55 of the publications related to the USA, including seven original research articles (Nelson et al., 2006).

Using members of the American Society for Bioethics and Humanities (ASBH) as a representative cross-section of professional resources for healthcare ethics, Nelson and Weeks (2006) analyzed how ASBH members were distributed along the rural–urban continuum. The ratio of ASHB members to urban hospitals is about one in three, whereas in rural hospitals the ratio is one to one hundred. The ratio is even more dramatic when using hospital beds as the denominator. Using various comparisons, the authors consistently found that ASBH members are underrepresented in rural settings compared with urban settings, suggesting that the availability of professional bioethical resources may be inadequate in rural settings.

How should I approach rural healthcare ethics in practice?

Rural clinicians respond to ethical challenges based on their personal beliefs and experiences, community values, and/or their understanding of ethical guidelines. The quality of care a patient receives can be greatly influenced by the clinician’s response to ethical challenges. Several strategies are suggested to support the efforts of rural clinicians in addressing ethical challenges.

Rural clinicians can acquire an understanding of healthcare ethics, including an awareness of basic ethical standards of practice. Ethical standards are generally accepted guidelines to help to guide responses to common ethical conflicts. Even though these guidelines may lack a specific rural focus, they can provide an important