The Cambridge textbook of bioethics

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

foundation for how to respond to ethical challenges. Ethical standards can be found in a wide variety of sources, such as, the American Medical Association Ethics Manual (American College of Physicians, 1998), professional codes of ethics (American Psychiatric Association, 2006), and position papers. Articles covering ethics are regularly published in medical and/or ethics specialty journals.

Rural clinicians can develop a network of colleagues who can be consulted to provide support or advice regarding ethical challenges (Cook et al., 2000a). Another clinician’s perspective, outside the immediate clinical situation, might provide insight, clarity, and supportive advice (Roberts et al., 1999b).

Rural clinicians can identify healthcare ethicists to provide consultation and training. Despite the general lack of trained ethicists that live or work in rural settings (Nelson and Weeks, 2006), many are available through the telephone, Internet, or tele-health programs. Most academic-based ethics centers have websites that can provide ethics resources. The development of networks with ethicists and clinicians can alleviate a sense of isolation (Roberts et al., 1999b).

Rural clinicians can identify those healthcare facilities with an ethics program or committee. Many committees do exist at small rural facilities, which could provide case consultation and education programs that might serve as a useful resource.

Rural clinicians can collaborate with a network of clinicians, ethicists, and ethics committee members to proactively draft and disseminate ethics practice guidelines for recurring rural ethical conflicts. The process may seem time consuming, but the process can diminish future conflicts. Such an effort can also be facilitated through formal, established professional groups.

Rural clinicians can develop and implement community-wide educational programs on healthcare issues, such as end of life decision making, privacy, and confidentiality, to foster community understanding of basic ethical concepts in

healthcare. Educational events can be facilitated in collaboration with community leaders, such as clergy (Cook and Hoas, 2000, 2001). Clinicians can also develop pamphlets delineating their ethical standards of practice to complement discussions. Proactive initiatives can foster a community understanding by utilizing a ‘‘preventive ethics’’ approach (Forrow et al., 1993).

Rural clinicians can encourage healthcare education conference planners at regional or national professional meetings to include a focus on rural issues (Roberts et al., 1999b). These meetings can provide an opportunity to engage with others concerning rural healthcare.

Rural clinicians can actively participate on committees of national or international professional organizations that establish standards of care to ensure that a rural perspective is recognized.

Rural clinicians can work with professional organizations, such as the National Rural Health Association, to advocate for adequate rural healthcare resources from government agencies.

The cases

All healthcare professionals must address ethical challenges. The clinician in each case must address ethical challenges that are inherent to the rural context and are familiar to all rural clinicians.

In the first case, limitations of resources generated healthcare access and quality of care concerns. The rural physician referred the patient to improve clinical care. However, the patient declined the specialized care because of the travel distance, possibly challenging roads, and the lack of her normal support system at the urban medical facility. After disclosing to the patient his clinical limitations as a non-specialist, the rural physician ought to provide the needed care. The physician, ethically, cannot refuse to provide care to the patient. To enhance quality of care of the patient, the physician should seek consultation with specialists for guidance, possibly by the usage of

colleagues, professional organizations, or the Internet to create a consultation network. Proactively, physicians should educate their patients and the community about rural health issues, including the need of access to specialized care, and they should work with local social service agencies to diminish the barriers to receiving care in distant communities.

In the second case, competing professional obligations, as a physician and as a school board member, force the clinician to weigh whether or not to take administrative action against a teacher based upon privileged medical knowledge. There are no easy resolutions in this case; however, the patient did come to the psychologist to address family relationship issues. The psychologist should pursue a suitable treatment of the patient’s alcohol problem and avoid using the information ascertained in the counseling session as a school board member. The situation could change if, the psychologist believed, students were harmed by the teacher’s alcohol problem. Proactively, healthcare professionals should discuss over lapping relationships with all patients prior to providing healthcare. As in this case, there also needs to be a clear understanding with all school board members on ways to separate or diminish conflicting roles.

In the third case, the physician should encourage the patient to seek needed mental healthcare in the nearby community or in a more distant community where his truck may not be recognized. If the patient still continues to be unwilling to seek the needed specialized care, the family physician should attempt to address the mental health concerns using mental health colleagues to provide guidance on an adequate course of treatment. The concern of the patient regarding charting of the depression is reasonable because of the nature of a small, close-knit community. The physician may consider keeping personal notes out of the medical record. The physician should implement a privacy and confidentially protocol that includes discussions with patients only behind closed doors, keeping all records locked, and only sharing patient

information and records with those that have a ‘‘need to know.’’ The physician should proactively educate staff about the importance of privacy and the associated problems, including how breaches in confidentiality can be detrimental to care. Physicians can work collaboratively with mental health professionals using a single clinic to avoid stigma (Roberts et al., 1999a; Roberts and Dyer, 2004).

REFERENCES

American College of Physicians (1998). Ethics manual: 4th edn, Ann Intern Med 128: 576–94.

American Psychiatric Association (2006). The Principles of Medical Ethics: With Annotations Especially Applicable to Psychiatry, 2006 edn. Arlington, VA: American Psychiatric Association (http://www.psych.org/psych_pract/ethics/ ppaethics.cfm) accessed 8 September 2006.

Baldwin, L. M., Patanian, M. M., Larson, E. H., et al. (2006). Modeling the mental health workforce in Washington State: using state licensing data to examine provider supply in rural and urban areas. J Rural Health 22: 50–8.

Berger, J. and Mohr, J. (1967). A Fortunate Man. New York: Pantheon, pp. 13–5.

Bird D. C., Dempsey P., and Hartley D. (2001). Addressing Mental Health Workforce Needs in Underserved Rural Areas: Accomplishments and Challenges. [Working Paper No. 23.] Portland, ME: University of Southern Maine, Edmund S. Muskie School of Public Service, Institute for Health Policy, Maine Rural Health Research Center (http://www.muskie.usm.maine.edu/m_view_ publication.jsp?id=954) accessed 8 September 2006.

Boffa, J. (2002). Is there a doctor in the house? Aust N Z J Public Health 26: 301–4.

Braden, J. and Beauregard, K. (1994). Health Status and Access to Care of Rural and Urban Populations. National Medicare Expenditure Survey Findings 18. Rockville, MD: Agency for Health Care Policy and Research.

Bushy, A. (1994). When your client lives in a rural area. Part I: rural health care delivery issues. Issues Ment Health Nurs 15: 253–66.

Bushy, A. and Rauh, J. R. (1991). Implementing an ethics committee in rural institutions. J Nurs Admin 21: 18–25.

Campbell, C. D. and Gordon, M. C. (2003). Acknowledging the inevitable: understanding multiple relationships in rural practice. Prof Psychol Res Pract 34: 430–4.

Canadian Rural Partnership Research and Analysis Unit (2002). Rural Research Note: Canadian Rural Population Trends. [Publication 2138/E.] Ottawa: Government of Canada, Agriculture and Agri-Food Canada (http://www.rural.gc.ca/research/note/note1_e.phtml) accessed 8 September 2006.

Chan, C., Hart, L. G., and Goodman, D. C. (2006). Geographic access to health care for rural Medicare beneficiaries. J Rural Health 22: 140–6.

Cook, A. F. and Hoas, H. (2000). Where the rubber hits the road: implications for organizational and clinical ethics in rural health care settings. HEC Forum 12: 331–40.

Cook, A. F. and Hoas, H. (2001). Voices from the margins: a context for developing bioethics-related resources.

Am J Bioethics 1: W12.

Cook, A. F., Hoas, H., and Guttmannova, K. (2000a). Bioethics activities in rural hospitals. Camb Q Healthc Ethics 9: 230–8.

Cook, A. F., Hoas, H., and Joyner, J. C. (2000b). Ethics and the rural nurse: a research study of problems, values, and needs. J Nurs Law 7: 41–53.

Cook, A. F., Hoas, H., and Joyner, J. C. (2001). No secrets on Main Street. Am J Nurs 101: 67, 69–71.

Cook, A. F., Hoas, H., and Guttmannova, K. (2002). Ethical issues faced by rural physicians. SDJ Med 55: 221–4.

Cox, J. (1997). Rural general practice: a personal view of current key issues. Health Bull (Edinb.) 55: 309–15.

Department for Environment, Food and Rural Affairs. (2004). Appendix B – Summary of evidence base. In The Rural Strategy 2004. London: defra (http://www. defra.gov.uk/rural/strategy/annex_b.htm) accessed 8 September 2006.

Economic Research Service (2005). Child poverty declined between 1990 and 2000. In Economic Information Bulletin Number 1: Rural Children at a Glance. Washington, DC: US Department of Agriculture (http://www.ers. usda.gov/publications/EIB1/EIB1.htm) accessed 8 September 2006.

Flannery, M. A. (1982). Simple living and hard choices.

Hastings Cent Rep 12: 9–12.

Forrow, L., Arnold, R. M., and Parker, L. S. (1993). Preventive ethics: expanding the horizons of clinical ethics. J Clin Ethics 4: 287–94.

Gallagher, E., Alcock, D., Diem, E., Angus, D., and Medves, J. (2002). Ethical dilemmas in home care case management. J Healthc Manag 47: 85–96.

Gamm, L. D., Hutchinson, L. L, Dabney, B. J., and Dorsey, A. M. (eds.) (2003). Rural Healthy People 2010: A Companion Document to Healthy People 2010. College Station, TX: The Texas A&M University System Health Science Center, School of Rural Public Health, Southwest Rural Health Research Center.

Glover, J. J. (2001). Rural bioethical issues of the elderly: how do they differ from urban ones? J Rural Health 17: 332–5.

Goldsmith, H. F., Wagenfeld, M.O., Manderscheid, R. W., and Stiles, D. (1997). Specialty mental health services in metropolitan and nonmetropolitan areas: 1983 and 1990. Admin Policy Mental Health 24: 457–88.

Hardwig, J. (2006). Rural health care ethics: what assumptions and attitudes should drive the research?

Am J Bioethics 6: 53–4.

Hartley D., Bird D., and Dempsey P. (1999). Rural mental health and substance abuse. In Rural Health in the United States, ed. T. C. Ricketts. New York: Oxford University Press, pp. 159–78.

Henderson, C. B. (2000). Small-town psychiatry. Psychiatr Serv 51: 253–4.

Holzer, C. E., Goldsmith, H. F., and Ciarlo, J. A. (1998). Effects of rural–urban county type on the available of health and mental health care providers. In Mental Health, United States. Washington, DC: US Government Printing Office [DHHS Pub. No. (SMA)99–3285], pp. 204–13.

Institute of Medicine (2005). Quality Through Collaboration: The Future of Rural Health Care. Washington, DC: National Academies Press.

Jennings, F. L. (1992). Ethics of rural practice. Psychother Private Pract 10: 85–104.

Johnson, M. E., Brems, C., Warner, T. D., and Roberts, L. W. (2006). Rural–urban health care provider disparities in Alaska and New Mexico. Adm Policy Ment Health 33: 504–7.

Kelly, S. E. (2003). Bioethics and rural health: theorizing place, space, and subjects. Soc Sci Med 56: 2277–88.

Larson, L. (2001). How many hats are too many? Trustee 54: 6–10.

Maddalena, V. and Sherwin, S. (2004). Vulnerable populations in rural areas: challenges for ethics committees.

HEC Forum 16: 234–46.

Miller, P. J. (1994). Dual relationships in rural practice: a dilemma of ethics and culture. Hum Serv Rural Environ 18: 4–7.

Moscovice, I. and Rosenblatt, R. (2000). Quality-of-care challenges of rural health. J Rural Health 16: 168–76.

Moss, A. H. (1999). The application of the Task Force report in rural and frontier settings. J Clin Ethics 10: 42–8.

National Center for Health Statistics (2001a). Figure 3. Population by age, region, and urbanization level: United States, 1998. Data tables on urban and rural health. In Health, United States, 2001 with Urban and Rural Health Chartbook. Washington, DC: US Government Printing Office (DHHS Publ. No. (PHS) 01-1232), p. 93.

National Center for Health Statistics (2001b). Figure 19. Suicide rates among persons 15 years of age and over by sex, region, and urbanization level: United States, 1996–8. Data tables on urban and rural health. In Health, United States, 2001 with Urban and Rural Health Chartbook. Washington, DC: US Government Printing Office (DHHS Pub. No. (PHS) 01-1232), p. 109.

National Center for Health Statistics (2005). Table 33. Age-adjusted death rates, according to race, sex, region, and urbanization level: United States, average annual 1994–6, 1997–9, and 2000–2. In Health, United States, 2005 with Chartbook on Trends in the Health of Americans. Washington, DC: Government Printing Office (DHHS Pub. No. 2005-1232), p. 184.

Nelson, W. (2004). Addressing rural ethics issues. The characteristics of rural health care settings pose unique ethical challenges. Healthc Exec 19: 36–7.

Nelson, W. (2006). Where’s the evidence: a need to assess rural health ethics committee models. J Rural Health 22: 193–5.

Nelson, W. A. and Pomerantz, A. S. (1992a). Ethics issues in rural health care. Trustee 45: 14–15.

Nelson W. A. and Pomerantz A. S. (1992b). Ethics issues in rural health care. In Choices and Conflict: Explorations in Health Care Ethics, ed. E. Friedman. Chicago, IL: American Hospital Publishers, pp. 156–63.

Nelson, W. A. and Weeks, W. B. (2006). Rural/non-rural differences of American Society of Bioethics and Humanities membership. J Med Ethics 32: 411–13.

Nelson, W., Lushkov, G., Pomerantz, A., and Weeks, W. B. (2006). Rural health care ethics: is there a literature? Am J Bioethics 6: 44–50.

Niemira, D. A. (1988). Grassroots grappling: ethics committees at rural hospitals. Ann Intern Med 12: 981–3.

Niemira, D. A., Meece, K. S., and Reiquam, C. W. (1989a). Multi-institutional ethics committees. HEC Forum 1: 77–81.

Niemira, D. A., Orr, R. D., and Culver, C. M. (1989b). Ethics committees in small hospitals. J Rural Health 5: 19–32.

Purtilo, R. (1987). Rural health care: the forgotten quarter of medical ethics. Second Opin 6: 10–33.

Purtilo, R. and Sorrell, J. (1986). The ethical dilemmas of a rural physician. Hastings Cent Rep 16: 24–8.

Ricketts, T. C. (2000). The changing nature of rural health care. Annu Rev Public Health 21: 639–57.

Ricketts, T., Johnson-Webb, K., and Taylor, P. (1998).

Rural Definitions for Health Policy Makers. Bethesda, MD: DHHS, Federal Office of Rural Health Policy.

Roberts L. W. and Dyer, A. R. (2004). Caring for people

pp. 167–83.

Roberts, L. W., Battaglia, J., Smithpeter, M., and Epstein, R. S. (1999a). An office on main street: health care dilemmas in small communities. Hastings Cent Rep 29: 28–37.

Roberts, L. W., Battaglia, J., and Epstein, R. S. (1999b). Frontier ethics: mental health care needs and ethical dilemmas in rural communities. Psychiatr Serv 50: 497–503.

Roberts, L. W., Warner, T. D., and Hammond, K. G. (2005). Ethical challenges of mental health clinicians in rural and frontier areas. Psychiatr Serv 56: 358–9.

Robillard, H. M., High, D. M., Sebastian, J. G., et al. (1989). Ethical issues in primary health care: a survey of practitioners’ perceptions. J Community Health 14: 9–17.

Romanow R. J. (2002). Building on Values: The Future of Health Care in Canada, Ch. 7: Rural and Remote Communities. Saskatoon: Commission on the Future of Health Care in Canada (http://www.hc–sc.gc.ca/english/ care/romanow/hcc0023.html) accessed 19 September 2006.

Rosenblatt, R. A. and Hart, L. C. (1999). Physicians and rural America. In Rural Health in the United States, ed. T. C. Ricketts, III. New York: Oxford University Press, pp. 38–51.

Rosenthal, M. B., Zaslavsky, A., and Newhouse, J. P. (2005). The geographic distribution of physicians revisited.

Health Serv Res 40: 1931–52.

Rosenblatt, R. A., Andrilla, C. H. A., Curtin, T., and Hart, L. G. (2006). Shortages of medical personnel at community health centers: implications for planned expansion. JAMA 295: 1042–9.

Rost, K., Owen, R. R., Smith, J., and Smith, G. R. (1998). Rural–urban differences in service use and course of illness in bipolar disorder. J Rural Health 14: 36–43.

Rourke, L. L. and Rourke, J. T. (1998). Close friends as patients in rural practice. Can Fam Physician 44: 1208–10, 1219–22.

Schank, J. A. (1998). Ethics issues in rural counseling practice. Can J Counseling 32: 270–83.

Simon, R. I. and Williams, I. C. (1999). Maintaining treatment boundaries in small communities and rural areas. Psychiatr Serv 50: 1440–6.

Sobel, S. B. (1992). Small town practice of psychotherapy: ethical and personal dilemmas. Psychother Private Pract 10: 61–9.

Spiegel, P. B. (1990). Confidentiality endangered under some circumstances without special management.

Psychotherapy 27: 636–43.

Sriram, T. G., Radhika, M. R., Shanmugham, V., and Murthy, R. S. (1990). Comparison of urban and rural respondents’ experience and opinion of ethical issues in medical care. Int J Soc Psychiatry 36: 200–6.

Turner, L. N., Marquis, K., and Burman, M. E. (1996). Rural nurse practitioners: perceptions of ethical dilemmas.

J Am Acad Nurs Pract 8: 269–74.

Ullom-Minnich, P. D. and Kallail, K. J. (1993). Physicians’ strategies for safeguarding confidentiality: the influence

of community and practice characteristics. J Fam Pract 37: 445–8.

US Department of Housing and Urban Development (2000). Attachment 2: FY 2000 Median Family Income for States, Metropolitan and Nonmetropolitan Portions of States. Washington, DC: Government Printing Office (http://www.huduser.org/DATASETS/IL/fmr00/ medians2.html) accessed 18 September 2006.

Wagenfeld, M. O., Murray, J. D., Mohatt, D. F., and DeBruyn, J. C. (1994). Mental Health and Rural America: 1980–1993. An Overview and Annotated Bibliography. Washington, DC: HHSA, Office of Rural Health Policy.

Warner, T. D., Monaghan–Geernaert, P., Battaglia, J., et al. (2005). Ethical considerations in rural health care: a pilot study of clinicians in Alaska and New Mexico.

Community Ment Health J 41: 21–33.

Weeks, W. B., Kazis, L. E., Shen, Y., et al. (2004). Differences in health-related quality of life in rural and urban veterans. Am J Public Health 94: 1762–7.

Woods, D. (1977). The rural doctor: among friends on the Canada–US border. CMAJ 117: 809, 812–14.

Ziller, E. C., Coburn, A. F., Loux, S. L., Hoffman, C., and McBride, T. D. (eds.) (2003). Health Insurance Coverage in Rural America: Chartbook. [Publication 4093] Washington, DC: Kaiser Commission on Medicaid and the Uninsured.

Staff in a community care agency provide service to an elderly, but capable, woman in her home. This woman is cared for by her son, who the staff believes is neglectful. The home care staff believes that the neglectful son is not providing adequate support to his mother while at the same time enjoying many financial benefits (e.g., rent and food) in this living arrangement. Further, the pair lives in a ‘‘rough’’ area of the city and staff has witnessed the son both purchasing from, and having loud arguments with, local drug dealers. The staff are concerned about their own and their client’s safety and feel distress in relation to the situation each time after they visit the home; yet within their organization there exists no tools for them to discuss or work through the ethical issues faced in this situation.

What is community healthcare ethics?

Community healthcare ethics can be defined as an endeavor to promote the sector’s philosophy of supporting clients’ independence and ongoing integration (or reintegration) in their community. It does so by providing a unique view that is sensitive to how client’s self-determination may be affected by the distinct supports offered by the sector, and the different settings they are provided in.

Such a definition is not unproblematic, as community healthcare ethics is ill defined: it lacks the rich literature, dedicated educational programs and professional roles, codes, and policies that treat ethical issues in institutional clinical practice. Thousands of articles have been published on the latter, which is also considered in many dedicated journals. In North America, clinical ethics education

is frequently incorporated into the training of physicians and nurses, many of whom will later work hospitals with established ethics programs led by clinical ethicists. By comparison, our review of the literature shows that there is little scholarship available on ethical issues in community healthcare. There is no journal dedicated to this topic, and less than 100 peer-reviewed articles on this subject. Outside of the community care sector in the greater Toronto area (GTA) that we will focus on in this article, there are very few programs that include ethics training for community care staff such as personal support workers. Even fewer homecare organizations have established ethics policies, programs, or committees, and to our knowledge, none of these has its own ethicist.

One might question whether these differences demand a distinct analysis for community care and argue that institutional clinical ethics resources can continue to be applied as patients move from hospital or clinic to home. This position fails to give sufficient weight to the marked difference between these sectors with respect to philosophy of care, resulting range of supports, and, most importantly, setting of care provision. Institutional clinical care is focused on treatment, with a curative goal. As noted, the philosophy of community healthcare focuses on independence and ongoing integration (or reintegration) of clients in their community. We will not explore the ethical significance of the contrast between these ‘‘medical’’ and ‘‘social’’ models of care here, as this is well examined by theorists in areas of inquiry such as disability

studies. However, it is important to acknowledge that these philosophies and the care provision that follows are not mutually exclusive: indeed, institutional clinical practices are essential to community healthcare. Clinical treatment may be necessary before a client can make use of community care supports, and may be essential to their bodily, person, and social-level functioning. Further, community care itself offers specialized care as found in acute clinical settings, such as dialysis, ventilator care and tube feeding, laboratory services, and physical and speech therapy. Additionally, however, community care also offers a myriad of distinct services that include personal care, homemaking and shopping assistance, repair and maintenance services, transportation, adult day care, and respite care. This complex combination of formal and informal care, and multiple nonhealth issues such as family dynamics, safety, and housing, creates ethical dilemmas that are not suitable for analysis or resolution using an ethical framework based on an institutional model.

Why is community healthcare ethics important?

The provision of services in the setting of the client’s home (rather than the institution-based care described at the start of this chapter) itself creates ethical issues. The case illustrates a frequent scenario facing personal support workers: other people sharing the home setting (in this case, the son) may have a vested interest and benefit materially from the client continuing to be cared for at home. Further, the location of the client’s home in the community is intimately related to the safety issues facing the workers who provide this assistance. Such examples of the significance of setting suggest that ethical approaches used in institutional clinical care cannot simply be transposed from hospital to community care.

There is clearly a need for a great deal of work on the significance of setting in community ethics.

Indeed, some of the small body of literature available on community care ethics treats this topic (Liaschenko, 1996; Aulisio et al., 1998). Yet, beyond addressing the lack of community ethics literature, there is a pressing need for resources to aid community care staff in supporting their clients in the community. There has been an observed increase in the number and complexity of ethical dilemmas in the homecare sector (Committee to Advance Ethical Decision-Making in Community Health, 2001). Faced with an increasing number of complex cases and ethical dilemmas, there is evidence that staff in the homecare sector are experiencing considerable moral distress, which is commonly defined as an inability to translate moral choices into moral action (Elpern et al., 2005: 523; Rushton, 2006, p. 161). Evidence suggests that the experience of moral distress in community care may be having an impact on the recruitment and retention of workers in the sector (Wojtak, 2002, p. 70).

The prevalence of these issues and the associate outcomes like moral distress are plausibly explained in part by a general increase in caseload and complexity. This results from a number of interrelated factors, including increased pressures from governments and payers worldwide to move from institutionally based healthcare to lessexpensive community-based care. Increasing proportions of the population are aged, with chronic conditions, and continue to live at home dependent on in-home and community services. The impact of medical technology combined with a trend toward reduced length of stay (and subsequent earlier discharge of non-compliant and/or complex cases from hospital without effective communication with patient, family, or community support agencies) contribute to further distress. Furthermore, the related tendency toward ‘‘silo-ing’’ – the perception on the part of many decision makers in these institutions that their only responsibility is for care delivered in their own setting – leads to increased isolation for patient and caregivers after discharge.

How should I approach community healthcare ethics in practice?

To support their community-based staff in dealing with such complex issues as raised in the case above, the Toronto Community Care Access Centre and other community organizations in the GTA have formed innovative partnerships, and trialed an ethics toolkit for ethical decision making in community healthcare. We describe this toolkit, and the strategic community engagement process that informed it, in detail below. Our aim in doing so is to share with other community care sectors a common approach for their workers to identify, analyze, and address ethical issues arising in their service delivery, with the intention of improving client care and staff experience.

The main components in this community-based approach to ethics issues are: (i) a strategic community engagement process, (ii) a code of ethics, (iii) a decision-making worksheet, and (iv) ethics case documentation, review, and evaluation tools.

A strategic community engagement process

Since most bioethical decision-making resources are based on hospital cases and in hospital settings, the development of this approach began by letting those forming the community articulate their own experience with the unique community-based ethical dilemmas and decide what resources were important to support their work in this area. A strategic community engagement process was developed to identify specific issues facing workers in the sector and to address the need to build organizational ethics capacity to meet these challenges. In this way, the initiative was grassroots based, and the decision-making tool was grounded in the values of the community.

Most homecare organizations in the GTA community sector lack the resources necessary to mount their own ethics initiatives. However, many organizations in the sector indicated a real willingness

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to cooperate in developing common tools and education for their staff. A joint research project to identify the major ethical issues facing their frontline staff was commissioned in 2001. The project included a literature review, as well as a questionnaire and oral interviews with over 200 staff and representatives from 45 agencies (over half of the interviewees were front-line workers). Analysis of responses revealed seven major categories of ethical issues faced by community health workers:

making choices

allocation of financial resources

workplace demands

environmental factors

client safety

worker safety

consent.

These project results served as the catalyst for formalizing cooperation between the participating agencies and led to the establishment of the GTA Community Ethics Network in October 2005. This network has continued and developed a mission to provide the resources, coordination, and support necessary to advance the practice of ethics among its 30-member health service agencies. Regular meetings of agency representatives provide a supportive forum for members facing difficult ethical issues, as well as for coordinating and resourcing joint initiatives and tools for their staff. We are not aware of any other comparable collaboration between community agencies in Canada, or worldwide.

A code of ethics for community health

The Code of Ethics for Community Health resulted from a working group round-table discussion attended by approximately 200 people from 40 community-based provider agencies, and it was finalized in September 2003. The result was an agreed code that expresses in lay terms common values of the community sector members. A total of 10 principles are articulated in the code (Figure 39.1). These principles provide staff with

relevant concepts that help them to identify and articulate ethical issues and conflicts based on a common language within the community context.

A decision-making worksheet for community health

The third major component of the toolkit is a decision-making worksheet also designed, piloted, and modified with the input of over 200 frontline staff. The worksheet is a step-by-step field tool to be used by a staff member who is faced with an ethical dilemma out on a home visit or in another community setting. It is introduced to staff as part of a three-part training process that includes: (i) helping staff to discern true ethical dilemmas, (ii) providing tools and resources on how to deal with the dilemma, and (iii) confirming a commitment on behalf of the employer organization to provide supports and resources should the workers need help. The worksheet comprises four key sections or steps that are identified by the acronym ‘‘IDEA,’’ to aid memory:

I identify the facts

Ddetermine the ethical principles in conflict

Eexplore the options

A act on your decision and evaluate.

Ethics case documentation, review, and evaluation tools

Toolkits are ultimately only significant if they change the behavior of the staff and organizations that make use of them. A system of case documentation is now being trialed among members of the Community Ethics Network to provide the measurement necessary to evaluate whether this common approach will achieve its goal of enhancing practice around ethical decision making in the community health sector.

The Clinical and Community Ethics Database (CCED) allows ethics cases to be documented,

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reviewed, and potentially evaluated in a secure environment. Data fields are grouped and may further structure and focus discussion, within the categories of the IDEA worksheet. Additionally, case reports can be generated in this format, and stripped of identifying fields to help to facilitate the sharing of case knowledge between organizations. Moreover, the database can report on trends across cases related to volume of consults, the time spent conducting them, as well as client demographic information. For example, an organization could query how many times it dealt with cases of family neglect and/or safety as described in the case above, the time spent conducting them, and what groups or individuals among its staff tended to refer them for consultation. All organizations within and outside the Community Ethics Network can freely use, modify, and distribute this open-source database.

The network has also initiated a follow-up case review process to facilitate and guide discussion about these documented cases, and to support staff decision-making processes by using these collected cases as a basis for new staff educational materials. There is considerable need for such material, as our literature reviews have produced mainly hospitalbased case examples that do not reflect the unique variables of community care.

Cases and ethical consults documented via the CCED will provide a significant component for the development of materials for informal and formal education of community sector workers. Informally, they will serve as a reference point in debriefing affected staff through individual case reviews and for conducting discussions with wider staff groups likely to be affected by similar issues. In the education sector, documented cases will be incorporated into the formal education of nursing degrees and training for personal support workers as a result of a partnership between the Community Ethics Network and a local community college (George Brown College). This initiative will reinterpret and reformat the case-based materials developed by