39 Community healthcare ethics
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 non-health 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 less-expensive 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 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.
Figure 39.1. The Code of Ethics of the Community Health and Support Sector of Toronto.
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
- D
determine the ethical principles in conflict
- E
explore 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, 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 hospital-based 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 community workers to contribute to the development of formal educational material that is part of the Community Ethics Network strategic plan. Specifically, the material will focus on the interprofessional learning required to ensure appropriate ethical decision-making process by these and other workers in the community sector.
How should I approach community healthcare ethics in practice?
The cooperation of the GTA community sector has permitted the development of unique resources to support community healthcare staff as they face an increasing volume and complexity of moral issues. Beyond beginning to address the resulting moral distress staff may experience, the partnerships, tools, and processes of the GTA community sector are also important for addressing an altogether different type of pressure: namely, that brought by changing healthcare accreditation standards.
The Canadian Council for Health Services Accreditation (CCHSA) has expressed concern about the ability of small homecare organizations to build and maintain capacity in ethics (Murphy, 2006). The unique partnership of the Community Ethics Network addresses this concern by pooling resources so that all organizations have access to the same robust set of tools.
Furthermore, some of these tools are themselves relevant to accreditation, as the CCHSA is beginning to move beyond requiring mechanisms for conducting case consultations toward review of their results, and the impact of these outcomes for ethics services (Murphy, 2006). As noted above, the CCED collects the necessary information on service delivery for such evaluation research, which to date has never been conducted with community agencies, and very little among clinical ethics support services (Slowther et al., 2001).
The CCED and other components of the toolkit will be of use in other regions. Indeed, some teaching hospitals in Toronto as well as in other parts of Ontario and Canada have used the toolkit to assist in the education of their staff. These resources can be freely used with appropriate attribution, and downloaded from the Community Ethics Network website at: http://www.utoronto.ca/jcb/ethics/cen.htm
While the network’s tools will be of use to individual homecare organizations, it is important to emphasize this partnership itself as a model for collaborative approaches to ethical issues facing other catchment areas. Again, this network provides a forum that enhances organizational capacity to review difficult cases that arise, and the resource pool required to further develop and teach new educational materials.
The case
The case illustrates the significant ethical issues arising from the delivery of community health services unique to the community healthcare setting. Using the ethics toolkit, the community care staff member first used the IDEA framework to collect the relevant facts, including the perspectives of the client on the situation. The client consistently maintained that she was quite happy with the quality of her life, and that she had absolutely no desire to be placed in a long-term care facility. While she acknowledged that her son was “not perfect,” she did not feel neglected or abused, and found comfort in having a familiar face around the house.
Directed by the worksheet to reflect on her own emotions, feelings, and values about the situation, the staff member felt that the son’s motives and the impact of his choices on client’s quality of life was her primary concern. His criminal behavior was an issue for her more for this reason than for her own personal safety. Nevertheless, directed by the worksheet to examine the Code of Ethics in articulating the values in conflict (step 2), she felt reassured by the code’s allowance for service being withdrawn where, after all options have been considered, employee safety remains compromised. Further, the code emphasized the need to respect choices that capable clients like this elderly woman make about their care plan, but to seek guidance in situation where clients like this elderly woman may be at risk. A district supervisor was involved, and together they determined that there was a conflict between their perception of the quality of the patient’s life and her own. Given that the client was capable, and the staff member had informed her of the provider perspective on the potential consequences of her son’s behavior and dependency (e.g., possibly not receiving service, danger in the home), the staff decided to respect the client’s decision to live at home.
Next, the staff member took action (step 3 and step 4) and communicated her respect for the client’s decision to her and her son. At this time, she also communicated to the son that he must offer the resources necessary to provide quality care to his mother, and that his capacity to do so would be evaluated. Further, he was informed that legal action would be taken if evidence of abuse was encountered in the future; that he could relinquish his role as caregiver if he wanted; or that staff would help to educate and support him in meeting his mother’s medical and dietary needs. The son agreed to these conditions.