Social workers' participation in the resolution of ethical dilemmas in hospice care.
A decision to accept hospice care often results only after much emotional turmoil in a family. But does this decision mean that difficult issues concerning end-of-life care cease? Patients, families, and providers may face many ethical issues throughout the provision of palliative care palliative care (paˑ·lē·ā·tiv kerˑ),
n an approach to health care that is concerned primarily with attending to physical and emotional comfort rather until death occurs. Sensitive management of ethical issues as they arise can ensure a good experience in end-of-life care and go a long way toward influencing the way that people handle future deaths. Social workers, as an integral part of the hospice team, can be valuable resources in the resolution of ethical dilemmas in end-of-life care.
Because end-of-life and palliative care often engender en·gen·der
v. en·gen·dered, en·gen·der·ing, en·gen·ders
1. To bring into existence; give rise to: "Every cloud engenders not a storm" strong emotional responses, ethical dilemmas become central to decisions regarding care for the dying person. Ethical dilemmas occur when a choice must be made between two or more relevant but competing ethical directives or values or when, no matter the choice, it results in an undesirable outcome (Loewenberg, Dolgoff, & Harrington, 2000). Thus, it may be important to examine the ethical implications of each decision (Byock, 1994) and discuss inherent dilemmas perceived by the interdisciplinary team interdisciplinary team,
n a group that consists of specialists from several fields combining skills and resources to present guidance and information. members. The hospice team's synergy is important to fulfilling hospice philosophy, which emphasizes care for the biological, psychological, social, and spiritual aspects of suffering and healing.
Social workers' participation on a hospice ethics committee ethics committee A multidisciplinary hospital body composed of a broad spectrum of personnel–eg, physicians, nurses, social workers, priests, and others, which addresses the moral and ethical issues within the hospital. See DNR, Institutional review board. can help them understand ethical issues and resolve ethical dilemmas. Ethics committees can provide guidance in discussion of specific cases and policies and education regarding ethical issues. However, hospice ethics committees are not widespread (Csikai, 2002; D'Olimpio, 1995; Fife, 1997). In the normal course of daily activities in hospice, decisions that may have ethical implications must be dealt with immediately, and an ethics committee may meet only monthly or quarterly. How then are ethical dilemmas in hospice care addressed?
This study explored common ethical issues, especially those that have a potential for producing dilemmas in hospice; methods of resolution; and hospice social workers' participation in "ethics committee-type" activities in their agencies. No earlier empirical studies Empirical studies in social sciences are when the research ends are based on evidence and not just theory. This is done to comply with the scientific method that asserts the objective discovery of knowledge based on verifiable facts of evidence. have investigated this phenomenon.
SOCIAL WORK AND ETHICAL ISSUES IN HEALTH CARE SETTINGS
Social workers in health care have witnessed advances in medicine and the accompanying ethical issues and dilemmas since the profession was introduced in dispensaries and hospitals in the early 20th century. Since that time social workers have been at the heart of emotional discussions with patients and families faced with making end-of-life care decisions. Social workers develop relationships with patients and families and work with them to resolve problematic psychosocial psychosocial /psy·cho·so·cial/ (si?ko-so´shul) pertaining to or involving both psychic and social aspects.
Involving aspects of both social and psychological behavior. situations in their lives. In health care, the goals may include discharge to home, placement in a nursing home, provision of home care services, or, as in hospice, promotion of a "good" death. During this process hospital social workers may encounter ethical dilemmas regarding quality-of-life, privacy and confidentiality, interpersonal conflicts, disclosure and truth telling, value conflicts, rationing rationing, allotment of scarce supplies, usually by governmental decree, to provide equitable distribution. It may be employed also to conserve economic resources and to reinforce price and production controls. of health care, and treatment options (Abramson & Black, 1985; Foster, Sharp, Scesny, McLellan, & Cotman, 1993; Reamer reamer
Rotary cutting tool of cylindrical or conical shape, used for enlarging and finishing to accurate dimensions holes that have been drilled, bored, or cored. A reamer cannot be used to start a hole. 1985). In discharge planning, social workers identify conflicts between fostering maximum patient self-determination and the pursuit of patients' best interest as occurring most frequently (Proctor A person appointed to manage the affairs of another or to represent another in a judgment.
In English Law, the name formerly given to practitioners in ecclesiastical and admiralty , Morrow-Howell, & Lott, 1993). Hospital social workers have been asked to discuss euthanasia euthanasia (y'thənā`zhə), either painlessly putting to death or failing to prevent death from natural causes in cases of terminal illness or irreversible coma. and assisted suicide assisted suicide: see euthanasia. (Csikai, 2000), which is particularly challenging because they are illegal in all states except Oregon and are the subject of much public and private ethical debate (Miller, 2000).
In home health care, issues of self-determination are prominent. A unique extension of self-determination is seen in the dilemma caused by attempting to balance both patients' and families' rights to self-determination. Patient autonomy patient autonomy Medical ethics The right of a Pt to have his/her carefully considered choices for health care carried out in a fashion that is consonant with his or her personal philosophy; PA also assumes that, in absence of explicit instructions to the contrary, is often compromised because caregivers may confuse the ability to make choices with eroding physical abilities that limit implementation of choices made (Arras Arras (äräs`), city (1990 pop. 42,715), capital of Pas-de-Calais dept., and historic capital of Artois, N France, on the canalized Scarpe River. & Dubler, 1994; Callopy, Dubler, & Zuckerman, 1990; Haddad, 1992). In end-of-life decision making across health care settings, social workers reported that the most common issues were patient competence and confusion because of a lack of advance directives (Csikai & Bass, 2000).
ETHICAL ISSUES IN HOSPICE
Little research has addressed ethically challenging issues and dilemmas that occur in hospice care. One issue with potentially powerful ethical implications that was explored in a study of hospice home care patients was that caregiver denial often resulted in inpatient inpatient /in·pa·tient/ (in´pa-shent) a patient who comes to a hospital or other health care facility for diagnosis or treatment that requires an overnight stay.
n. hospice stays for patients whose desire was to die at home (Reese, 2000). This reflects a nullification nullification, in U.S. history, a doctrine expounded by the advocates of extreme states' rights. It held that states have the right to declare null and void any federal law that they deem unconstitutional. of patients' rights The legal interests of persons who submit to medical treatment.
For many years, common medical practice meant that physicians made decisions for their patients. This paternalistic view has gradually been supplanted by one promoting patient autonomy, whereby patients and to self-determination or autonomy and thus a denial of patients' true "dying wishes." Interdisciplinary discussion and problem solving problem solving
Process involved in finding a solution to a problem. Many animals routinely solve problems of locomotion, food finding, and shelter through trial and error. may provide guidance to hospice professionals to preserve patient autonomy and to support families simultaneously.
In addition to direct patient care issues, hospice providers must address the legalization LEGALIZATION. The act of making lawful.
2. By legalization, is also understood the act by which a judge or competent officer authenticates a record, or other matter, in order that the same may be lawfully read in evidence. Vide Authentication. of active euthanasia active euthanasia Medical ethics The practice of injecting a Pt with a lethal dose of medication with the primary intention of ending the Pt's life. Cf Active euthanasia. and assisted suicide, application of the concept of medical futility medical futility Futile resuscitation, futility Biomedical ethics A subjective term that encompasses a range of probabilities that a Pt will benefit from efforts designed to improve his life and survive to discharge from a health care facility Medtalk The lack of (and definition of), and access to and unequal distribution of hospice services among diverse racial and economic groups. If handled proactively, with problem solving and policy making, the day-to-day struggles that team members face with patients and families may be alleviated.
SOCIAL WORK INVOLVEMENT IN HEALTH CARE ETHICS COMMITTEES
Health care ethics committees provide a forum for discussion of difficult cases, retrospective review retrospective review,
a posttreatment assessment of services on a case-by-case or aggregate basis after the services have been performed. of cases, formulation and review of policy, and education of ethics committee members, staff, and the community (Ross, Glaser, Rasinski-Gregory, Gibson, & Bayley, 1993). Ethics committees are multidisciplinary (Cranford & Doudera, 1984) and have the primary purpose of protecting patients' rights (Hoffman, 1993). Ethics committees are widespread in hospitals but are less common in alternative health care settings. According to according to
1. As stated or indicated by; on the authority of: according to historians.
2. In keeping with: according to instructions.
3. a 1995 statewide study in Pennsylvania, 88 percent of hospitals used ethics committees (Csikai, 1997). No empirical studies can be found that examined the prevalence of such committees in home health care, nursing homes, or rehabilitation rehabilitation: see physical therapy. centers. One study of ethics committees in hospice (of which this study is a part) revealed that 31 percent of hospices had ethics committees in their agency and 42 percent had access to a hospital ethics committee (Csikai, 2002). Social workers were found to be members of about 75 percent of hospital ethics committees (Csikai, 1997; Skinner 1991), but only 53 percent of hospice ethics committees. In deliberations of hospital and hospice committees, social work participation was moderate, with greatest involvement in "traditional" social work activities such as providing knowledge of community resources and acting as liaisons among patient, family, and providers (Csikai, 1997; Csikai, 2002).
The likelihood that hospice professionals face situations in daily patient care that have ethical implications is great given the nature of the work. In lieu of Instead of; in place of; in substitution of. It does not mean in addition to. formal hospice ethics committees, regularly scheduled interdisciplinary team meetings are essential for discussion of ethically challenging case issues. Development of policies to address common issues faced, along with education of staff, may minimize difficulties that staff encounter when responding to ethical dilemmas. Social workers can help carry out some of these functions in support of the fundamental aspects of hospice philosophy by using their training in communication skills, by promoting the profession's central values of self-determination and respect for individual worth and dignity, and by helping others recognize the interplay and dependence of people and their environments.
The following questions were addressed in this exploratory study of hospice social workers in six states:
1. What are the most common situations with potential for producing ethical dilemmas encountered by hospice social workers?
2. What are the methods of resolution of cases involving ethical dilemmas used in lieu of a formal ethics Formal ethics is a formal logical system for describing and evaluating the form as opposed to the content of ethical principles. Formal ethics was introduced by Harry J. committee review?
3. What is the level of social workers' participation in case consultation activities during discussion of difficult cases in hospice?
4. To what extent are social workers involved in policy and educational activities in their agency?
5. What factors influence the level of social workers' participation in specific activities related to case consultation, policy, and education regarding ethical issues?
Sample and Procedure
Although this study was exploratory, the sample selected allowed for maximum representation and adequate size, and thus the greatest usefulness of the results. A random stratified stratified /strat·i·fied/ (strat´i-fid) formed or arranged in layers.
Arranged in the form of layers or strata. cluster sampling Cluster sampling is a sampling technique used when "natural" groupings are evident in a statistical population. It is often used in marketing research. In this technique, the total population is divided into these groups (or clusters) and a sample of the groups is selected. method was used, beginning with the total population of hospices in the United States United States, officially United States of America, republic (2005 est. pop. 295,734,000), 3,539,227 sq mi (9,166,598 sq km), North America. The United States is the world's third largest country in population and the fourth largest country in area. (according to the 1997-1998 Guide to the Nation's Hospices (National Hospice Organization, 1997): approximately 3,000, an average of 60 hospices per state). From an alphabetical listing of states, every tenth state was chosen for inclusion. One additional state was chosen at random because there were fewer than the approximately 300 hospices sought for the sample (no power analysis was completed). Selection of these six states (Arizona, Georgia, Maryland, New Jersey, South Carolina South Carolina, state of the SE United States. It is bordered by North Carolina (N), the Atlantic Ocean (SE), and Georgia (SW). Facts and Figures
Area, 31,055 sq mi (80,432 sq km). Pop. (2000) 4,012,012, a 15. , and Wyoming, a mix of urban and rural environments) yielded 267 hospice agencies.
To further specify the sample, a preliminary phone survey was conducted with all hospices in each of the six states chosen. The agencies that had hospice ethics committees were identified, along with whether there was a social work representative on the committee. One social worker at each hospice agency that did not have a formal ethics committee or that only had access to a committee through other auspices, such as hospital or community ethics committees, or where there was a hospice ethics committee without a social work member (n = 179), was sent a questionnaire. In cases where there was a corporate committee that covered more than one site, one social worker from each site was sent a questionnaire, with the exception of the site where the social worker who was on the committee was employed. Responses from a survey of social workers who served on their hospices' ethics committee was the subject of a separate analysis (Csikai, 2002).
A cover letter that described the purpose of the study, solicited participation, and assured anonymity and confidentiality was attached to each questionnaire. A postcard follow-up reminder was sent approximately three weeks after the initial mailing to encourage response. The results are based on the responses of 110 social workers, a response rate of 61 percent.
In the first section of the questionnaire, the social workers were asked to indicate how difficult cases involving ethical issues or dilemmas were handled on an agency level--that is, how they were discussed and resolved, before direct intervention with patients and their families. Possible responses included discussion in team meetings, hospice ethics committee meetings, or community ethics committees; referral to an ethics consultant; discussion with attending physician; discussion with hospice director; informal discussion with team members; participation on hospital ethics committee; and "other" means. Respondents could indicate more than one response. Percentages are reported for these measures. Social workers were also asked if they felt that a formal ethics committee was needed in their agency and whether they would feel comfortable in helping to develop one (yes or no).
To examine the social workers' level of involvement in case discussions of an ethical nature and other ethics-related activities in the agency, a measure was adapted from an earlier study of social workers serving on hospital ethics committees (Csikai, 1997). The original measure was developed from a review of ethics committee literature and contained 24 statements related to the three main functions of ethics committees: education (7 items), policy development/review (7 items), and case consultation/review (10 items). Respondents were asked to rate their level of involvement on a five-point Likert scale Likert scale A subjective scoring system that allows a person being surveyed to quantify likes and preferences on a 5-point scale, with 1 being the least important, relevant, interesting, most ho-hum, or other, and 5 being most excellent, yeehah important, etc ranging from 1 = never involved to 5 = almost always involved. Sample statements included "I help organize seminars/inservices for staff," "I facilitate discussion of old/ new policies," and "I present patient/family beliefs and values." From this earlier research, the coefficient alphas for the level of involvement measure were .87, .91, and .94 for educational, policy development/review, and case consultation/review functions, respectively (Csikai, 1997). First the respondents were asked to indicate how much they were involved in each of 10 case consultation activities related to the discussion of difficult cases involving ethical dilemmas. I then constructed a 12-item measure to capture a combination of appropriate policy and educational activity items that these social workers may have encountered. The respondents indicated how involved they were with each activity. Means and standard deviations were computed. I examined correlations with social worker and agency demographics and determined whether there were predictors of involvement in specific activities.
To collect information regarding content of ethical discussion, the respondents were asked how often discussions occurred around issues, such as medical condition of patient, caregiver absent, and family denial of terminal illness, that may pose ethical dilemmas. Respondents used a five-point Likert scale ranging from 1 = never to 5 = almost always. They were then asked if they had ever personally received a request from a patient or family to discuss assisted suicide, to which they could respond yes or no. As a follow-up, if they had received requests, they were asked to indicate how they responded to the requests. Possible responses included the following: requested a psychiatric evaluation psychiatric evaluation The assessment of a person's mental, social, psychologic functionality. See DSM-IV-table multiaxial assessment, Personality testing, Psychiatric history, Psychiatric interview. , discussed all options with the exception of deliberate acts to end life, and suggested inclusion of family in discussion. The social workers were also asked whether they had ever witnessed euthanasia or assisted suicide (yes or no).
Agency and social work respondents' demographics are presented in Table 1, and information about the respondents' ethics training is presented in Table 2.
Common Ethical Issues and Methods of Resolution
The social workers reported a variety of methods used to discuss difficult cases involving ethical issues or dilemmas (Table 3). All of the social workers reported that such discussion occurred in their interdisciplinary team meetings. The next most frequent avenues were to discuss the issues with the medical director of the hospice and in informal discussion with team members. As more than one response could be indicated, it is possible that the social workers used more than one method when faced with a difficult case. Fifty-four percent of the respondents believed that a formal ethics committee was needed in their agency, and 71 percent indicated that they would feel comfortable helping to develop such a committee.
The situations with potential for producing ethical dilemmas discussed most often included medical condition of the patient (although not specified, this could have included uncontrolled pain uncontrolled pain Neurology Pain that doesn't respond to medications at doses that usually provide appropriate analgesia , progression of illness during hospice stay, or re-examination curative curative /cur·a·tive/ (kur´ah-tiv) tending to overcome disease and promote recovery.
1. Serving or tending to cure.
2. care versus palliative care), involvement of family, and family denial of terminal illness (Table 4). Least discussed were issues related to euthanasia, assisted suicide, and completion of suicide by a patient. Thirty-two percent (n = 35) of the social workers indicated that they had received a request from a patient to discuss assisted suicide. Seventeen percent (n = 19) reported that they had received such a request from a patient's family member. Social workers responded to these requests as follows: 23 percent suggested inclusion of family in the discussion (n = 25), 17 percent (n = 19) discussed all options available to patient to relieve suffering, including assisted suicide; 16 percent (n = 17) discussed all options except assisted suicide; 10 percent (n = 11) suggested that the patient discuss it with his or her physician; 6 percent (n = 6) requested a psychiatric evaluation; and 1 percent (n = 1) changed the subject. Four percent (n = 4) of the respondents indicated that they had witnessed active euthanasia; 2 percent (n = 2) had witnessed assisted suicide during their work as a hospice social worker.
Participation in Ethics Committee-Type Activities
The 10 activities listed that were likely to occur when discussing difficult cases were all found to be a routine part of such discussion. The social workers most often provided knowledge of community resources, offered information from psychosocial histories of patients and families, and summarized the family involvement during hospice care (Table 5). The activity executed the least was facilitating discussion of difficult cases. In the second measure of activities, promoting self-determination in policy issues was performed most frequently (Table 6).
Policy-related activities received the highest ratings, and educational activities were rated lowest in terms of the social workers' participation. The educational activity engaged in the most was presentation of material regarding ethical issues at seminars or in-service training.
Factors found to have a significant relationship with at least one activity listed in Tables 5 and 6 were experience as a hospice social worker, experience as a medical social worker, length of employment at the agency, average daily census daily census See Census. , age, and position. The older the social workers were, the less likely they were to facilitate discussion of difficult cases involving ethical issues (r = -.252, p < .01). Also, the larger the agency in terms of daily census, the more likely the respondents were to engage in presenting information regarding ethical issues at seminars (r = .205, p < .05). Advocating for social justice in policies, formulation of policies, facilitation Facilitation
The process of providing a market for a security. Normally, this refers to bids and offers made for large blocks of securities, such as those traded by institutions. of discussion of old and new policies, and education of staff regarding new policies all received a greater level of participation by social workers who had been in hospice social work or in medical social work and had longer agency retention.
Whether the respondent was a director, supervisor, or staff social worker, and several activities were significant, including formulation of policies (t = 3.99, p < .001), facilitating discussion of old and new policies (t = 3.36, p < .001), educating staff regarding new policies (t = 4.21, p < .001), reviewing existing policies (t = 4.313, p < .001), presenting information at seminars (t = 3.39, p < .01), investigating facts of a case being discussed (t = 2.09, p < .05), offering support to patient and family (t = 2.15, p < .05), and organizing seminars for staff (t = 2.31, p < .05). Significant differences were found in whether the respondents would feel comfortable developing an ethics committee at the agency and formulating policies (t = 2.12, p < .05), facilitating discussion of old and new policies (t = 3.34, p < .01), presenting information at seminars (t = 2.43, p < .05), and compiling a list of speakers for a speakers' bureau (t = 2.50, p < .05).
An exploratory regression analysis In statistics, a mathematical method of modeling the relationships among three or more variables. It is used to predict the value of one variable given the values of the others. For example, a model might estimate sales based on age and gender. was performed for the "committee-like" activities that had three or more significant relationships with background variables examined. The amount of variance explained for each activity was small, and therefore is not detailed here. It should be noted that other factors not examined in this study might have contributed to the level of social workers' involvement in each activity.
The exploratory nature of this study contributed to its strengths and limitations. Because ethical issues in hospice is a new area of study in social work, some of the items were intentionally broad and interpretive in·ter·pre·tive also in·ter·pre·ta·tive
Relating to or marked by interpretation; explanatory.
in·terpre·tive·ly adv. , which may limit the usefulness. A strength was in the random national sample used, adding a degree of generalizability of the findings to hospices in states not included. Caution is advised, however, given the relatively small number of respondents and lack of midwestern and western states included in sample. Another limitation may be that because only one social worker per hospice was surveyed, a true picture of how ethical issues and dilemmas are handled by the agency was not obtained.
DISCUSSION AND IMPLICATIONS
Among the findings of this study was that the most common issue with potential ethical implications that was encountered in hospice related to the medical condition of the patients. Although respondents were not asked to identify what medical condition of patients caused it to be a prominent issue, speculatively and anecdotally from my practice experience, issues may have included coercion coercion, in law, the unlawful act of compelling a person to do, or to abstain from doing, something by depriving him of the exercise of his free will, particularly by use or threat of physical or moral force. by families for patients to leave hospice in favor of an experimental treatment, patients actually doing "too well" to be receiving hospice services, and unrelieved pain. One ethical dilemma An ethical dilemma is a situation that will often involve an apparent conflict between moral imperatives, in which to obey one would result in transgressing another.
This is also called an ethical paradox that may arise is that physicians may not want to increase narcotics narcotics n. 1) techinically, drugs which dull the senses. 2) a popular generic term for drugs which cannot be legally possessed, sold, or transported except for medicinal uses for which a physician or dentist's prescription is required. because of fear of a common side effect, depression of breathing. The rule of double effect comes into play here, where the intent is not to hasten has·ten
v. has·tened, has·ten·ing, has·tens
To move or act swiftly.
1. To cause to hurry.
2. death, but to relieve pain; however, the patient may die as a result of the increase in medication. Another common worry among physicians and families is that patients will become addicted ad·dict·ed
1. Physiologically or psychologically dependent on a habit-forming substance.
2. Compulsively or habitually involved in a practice or behavior, such as gambling. to the narcotics, and particularly that families do not want their loved ones to be stigmatized as "addicts:' In these instances, the difficulty is in achieving what is in the best interest of the patient and not causing harm.
Pain management is a central focus of hospice. Although the medical director of the hospice may be well versed Versed® Midazolam Pharmacology A preoperative sedative in palliative palliative /pal·li·a·tive/ (pal´e-a?tiv) affording relief; also, a drug that so acts.
Relieving or soothing the symptoms of a disease or disorder without effecting a cure. medicine, the patient's attending physician may not be aware of appropriate dosages, thus causing ethical concerns that patients may be harmed. According to the SUPPORT Principal Investigators (1995) study findings, shortcomings of end-of-life care provided to hospitalized patients and their families included inadequate pain control, undiagnosed depression, and significant anxiety and distress in anticipating the end of life. There has been an increasing focus, promulgated prom·ul·gate
tr.v. prom·ul·gat·ed, prom·ul·gat·ing, prom·ul·gates
1. To make known (a decree, for example) by public declaration; announce officially. See Synonyms at announce.
2. by the Robert Wood Johnson Foundation Robert Wood Johnson Foundation, charitable organization devoted exclusively to health care issues. It was established in 1936 by Robert Wood Johnson (1893–1968), board chairman of the Johnson & Johnson medical products company. (sponsor of the SUPPORT study), including initiatives such as the Project on Death in America and the American Medical Association's project Education for Physicians in End-of-Life Care, toward providing necessary education in palliative medicine, including appropriate pain control, so that patients may receive quality care at the end of life that addresses every aspect of life (Sherman, 1999). Although these efforts have been underway for several years, no comprehensive study has examined whether end-of-life care in hospitals or any other health care setting has improved.
Other frequently discussed issues were families' denial of the terminal illness and that families might not be following the patients' wishes, which could cause or increase the risk of patient-family conflict (another identified common issue). Social workers can provide significant input into the resolution of these issues and discuss with other team members strategies they can use during home visits with patients and families. The resolution of these difficulties in hospice might make a critical difference in whether the patient has a "good death;" often defined as a death that occurs at home in concert with the patient's wishes and preservation of self-determination (Reese, 2000).
The least discussed issues were patient suicide, assisted suicide, and euthanasia, which was interesting given the finding that almost one-third of the social workers reported being asked to discuss assisted suicide by patients and that in a few instances social workers had witnessed euthanasia and assisted suicide. The hospice social workers in this study reported requests for discussion of assisted suicide at a higher rate than did hospital social workers in an earlier study, 32 percent compared with 22 percent (Csikai, 2000).
It was not surprising that interdisciplinary team meetings, in the absence of an agency ethics committee, were the outlet for discussion of ethical issues, because these meetings are so much a part of the provision of patient care in hospice. The interdisciplinary team model has been described as helpful for facilitating the work and relieving some of the burden felt when working with difficult patients. These team meetings may also offer an arena for dealing with situations objectively and allow providers to empathize em·pa·thize
To feel empathy in relation to another person. with patients and each other (Schofield & Amodeo, 1999). Cooley (1994) described three essential components of effective teams: (1) organized presentation of information and use of time, (2) communication among members that is interactive and leads to an understanding of group goals and decisions, and (3) a problem-solving process that involves all members. When discussion among the interdisciplinary team occurs, each member can provide a perspective from his or her own discipline, as well as look at the issue with respect to goals for that patient and family situation. However, in discussing ethical issues there may be some danger if no one on the team is well versed in basic ethical principles and models of ethical decision Real life ethical decisions are studied in sociology and political science and psychology using very different methods than descriptive ethics in ethics (philosophy). Not ethics proper making. Given that the social work profession is grounded in ethics, additional training in bioethics bioethics, in philosophy, a branch of ethics concerned with issues surrounding health care and the biological sciences. These issues include the morality of abortion, euthanasia, in vitro fertilization, and organ transplants (see transplantation, medical). and ethical analysis in health care settings would better prepare social workers to lead such discussions.
In discussion of difficult cases involving ethical dilemmas, social workers reported that they engaged most in traditional social work activities, but were much less involved in facilitating discussion. Although other interdisciplinary team members in hospice--that is, physicians, nurses (and aides), pastoral care counselors (or clergy), and clinical administrators--may receive training in communication and problem solving, these areas are particularly important in social work education. When social workers facilitate nonjudgmental non·judg·men·tal
Refraining from judgment, especially one based on personal ethical standards.
Adj. 1. nonjudgmental discussion and create an environment in which everyone's views can be heard, problem solving regarding ethical dilemmas can occur.
In policy issues, the social workers focused on self-determination. Because self-determination is a core value of the social work profession, social workers should not only continue, but also take the lead in this activity. Social workers have not facilitated policy discussions, except when in a supervisory role. Perhaps these positions of authority made the social workers more comfortable in asserting their knowledge and skills in this area, given that they would likely be more familiar with and possess greater influence to address the issues found in the agency.
Social workers were least involved in education regarding ethical issues that commonly arise in hospice, except for social workers who worked in agencies that had a larger census. One explanation is that larger agencies employ larger numbers of social workers, which may free them more to participate in seminars as presenters or to attend continuing education continuing education: see adult education.
or adult education
Any form of learning provided for adults. In the U.S. the University of Wisconsin was the first academic institution to offer such programs (1904). ethics training, and thus these workers feel more comfortable presenting information at seminars and in-service training for staff. As was the case in hospitals and hospices that used ethics committees, education on ethical issues in end-of-life care is an unclaimed area that social workers have an opportunity to seize and to develop expertise that can be shared (Csikai, 2002; Csikai & Sales, 1998). Such participation, however, requires much more preparation than social workers now receive. In this study, only a little more than one-half of the social workers who reported having ethics content in their MSW (MicroSoft Word) See Microsoft Word. program were exposed to basic ethical theories, and much less attention was paid to emerging ethical issues and principles of biomedical bi·o·med·i·cal
1. Of or relating to biomedicine.
2. Of, relating to, or involving biological, medical, and physical sciences. ethics, all key to ethical decision making in health care settings. In addition to these areas, in open-ended responses, the social workers felt that training in bioethics should be ongoing and include topics related to medical advances, laws, thoughts of bioethicists, and hospice-specific training for social workers. Kovacs and Bronstein (1999) found that hospice social workers thought that being able to function as an effective team member was important. Education regarding ethical issues in end-of-life care for all health care professionals can not only facilitate problem solving, but also may reduce the number or intensity of issues that arise during the provision of care for hospice patients.
The findings from this exploratory study give direction for future research on ethical issues and dilemmas in hospice and their resolution. Participant observation participant observation,
n a method of qualitative research in which the researcher understands the contex-tual meanings of an event or events through participating and observing as a subject in the research. of the interdisciplinary team meetings would likely be the best method to capture the process involved in resolving ethical dilemmas. Implementation of recommendations that result from discussion of difficult cases could be monitored as to the outcomes produced for patients and families. Moreover, qualitative interviews could be conducted with all disciplines to investigate their comfort in discussing end-of-life care issues and how personal experiences and beliefs, including cultural, spiritual, and religious aspects, may affect the ease with which these issues are handled. Additional factors that might influence social workers' participation in broader ethics-related activities, such as education and policy formulation, should be explored. Given that ethical issues are inherent in providing end-of-life care and that social workers are an integral part of such care, continued attention in social work education and research in this area is imperative.
Table 1. Hospice Social Worker Respondents and Agency Demographics Social Workers (a) % Hospice Agency Environment (a) % (N= 110) (N= 267) Gender Auspices Male 9 Profit 21 Female 91 Nonprofit 79 Race Free-standing 46 White 91 Hospital-based 44 Not white 9 Other affiliation 10 Religious affiliation Multifacility system Protestant 52 Yes 59 No religious affiliation 14 No 41 Jewish 12 Catholic 9 Populations served Other 13 Rural 22 Educational level Urban 1 MSW 84 Suburban 6 BSW 12 Rural and urban equally 24 Other 4 Mix of rural, urban, suburban 47 Average daily census: 43 patients range: 3-400 Age: M= 41 years, range = 24-65 years Length of experience Medical social work: M = 7 years; range = 2 months-29 years Hospice: M = 4 1/2 years; range = 2 months-25 years Current agency: M = 4 years; range = 1 1/2 months-31 years NOTE: (a) Comparison to national hospice data not available. Table 2. Ethics Training among Hospice Social Workers (N = 110) Source of Training % MSW program 69 Community seminars 44 Continuing education seminars sponsored by medical center 40 Continuing education seminars sponsored by school of social work 34 Seminars provided by hospice employer 19 MSW Continuing Program Education Content % % Ethical theories 56 38 NASW policy statements regarding health care practice 44 38 Models of ethical decision making 42 39 Quality-of=life issues 38 51 Emerging issues in health care 28 71 Principles of biomedical ethics 16 51 NOTE: Respondents' could check more than one response. Table 3. Methods of Resolution of Ethical Dilemmas in Hospice (N = 110) Method % n Discussion in interdisciplinary team meeting 100 110 Discussion with hospice: medical director 83 91 Informally with team members 76 83 Discussion with attending physician 60 66 Hospital ethics committee 20 22 Hospice ethics committee' 18 20 Referral to ethics consultant 8 9 Community ethics committee 6 6 NOTE: Respondents could indicate more than one response. (a) Included in the sample were social workers who had no social work representation on their hospice ethics committee. Table 4. Frequency of Discussion for Issues with Potential for Producing Ethical Dilemmas in Hospice (N = 110) Issue M SD Medical condition of patient 4.61 .65 Involvement of family 4.52 .65 Family denial of terminal illness 3.93 .87 Patient/family conflict 3.91 .90 Caregiver absent 3.55 1.01 Patient's wishes not being followed by family 3.54 1.00 Poor physical conditions of patient's home 3.47 1.03 Caregiver impaired 3.43 .96 Conflict between patient needs and insurance coverage 3.44 1.10 Termination of hospice care (pt. not declining) 3.28 1.03 Suicidal ideation of patient 3.02 1.24 Patient wants to terminate hospice to pursue aggressive treatment 2.92 1.06 Euthanasia 2.27 1.17 Legalization of assisted suicide 2.04 .99 Completion of suicide by patient 1.95 1.34 NOTE: A five-point Likert scale used 1 = never; 2 = rarely; 3 = sometimes; 4 = often; 5 = almost always. Table 5. Social Work Activities in Case Discussion Involving Ethical Dilemmas in Hospice (N = 110) Activity M SD Provide knowledge of community resources 4.56 .66 Offer psychosocial history of patient/family 4.54 .81 Give background of family involvement during hospice care 4.52 .82 Offer support to patient/family following discussion 4.37 .82 Present patient/family beliefs and values 4.21 .77 Help promote communication between health care professionals and patient/family 3.92 1.00 Offer support to health care professionals following discussion 3.79 .98 Give synopsis of the central ethical issues in the case 3.74 1.03 Investigate facts of case from all parties involved 3.50 1.04 Facilitate discussion of the case 3.46 .95 NOTES: Range of 0% to 2% of activities did not apply to ethical discussion in the agency. Five-point Likert scale used ranged from 1 = never involved to 5 = almost always involved. Table 6. Social Workers Involvement in Activities Related to Policy and Education in Support of Ethical Discussion in Hospice (N = 110) Activity M SD % N (a) Help focus attention on patient self- determination 4.30 .82 0 (0) Assist with policy formulation 3.03 1.23 6 (6) Help educate staff to the community's values 2.95 1.14 6 (6) Serve as an advocate for social justice re: new policies 2.88 1.26 7 (8) Assist in reviewing existing policies concerning ethical issues 2.78 1.22 8 (9) Present ethical issues/information in seminars/in-services 2.56 1.21 6 (6) Facilitate discussion of old/new policies of the agency re: ethical issues 2.54 1.16 6 (7) Assist with education of staff re: new policies of the agency re: ethical issues 2.44 1.16 9 (10) Research educational needs within the hospice 2.43 1.17 8 (9) Help organize seminars/in-services for staff re: ethical issues 1.98 1.08 6 (7) Help organize seminars/in-services for the community re: ethical issues 1.77 1.05 10 (11) Help compile (and update) a list for a "speakers" bureau on ethics 1.62 .87 15 (16) (a) Percentage and number of agencies that were not involved in that activity. Five-point Likert scale used: ranging from 1 never involved to 5 almost always involved.
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ABOUT THE AUTHOR
Ellen L. Csikai, PhD, is associate professor, School of Social Work, University of Alabama, Box 870314, Tuscaloosa, AL 35487-0314; e-mail: firstname.lastname@example.org.
Original manuscript received June 2, 2000
Final revision received November 13, 2001
Accepted January 10, 2002