NeuroRehabilitation An Interdisciplinary Joumal

ELSEVIER

NeuroRehabilitation 6 (1996) 97-111

Interdisciplinary team member perceptions of ethical issues in traumatic brain injury rehabilitation Vilia M. Tarvydas a *, Linda Shaw b b The

a The University of Iowa, N 362 Lindquist Center, Iowa City, IA 52240-1529, USA University of Florida, Department of Rehabilitation Counseling, P.D. Box 100175, HSC, Gainesville, FL 32610-0175, USA

Abstract Traumatic brain injury (TEl) rehabilitation is one of the most challenging and complex aspects of rehabilitation clinically, administratively, and ethically. The prevailing standard of care in this area emphasizes the importance of treatment within an interdisciplinary team model. Empirical literature related to both individual clinician and team aspects of the ethical issues involved in head injury rehabilitation has been lacking. This study utilized a survey approach to describe the perceptions of interdisciplinary team members in TBI rehabilitation at various care-levels in rehabilitation regarding ethical issues in their practice. A sample of 84 interdisciplinary team members responded to a new survey instrument, the Ethical Urgency Survey (EUS), describing the frequency of issues, their importance, and the perceived level of distress with ethical dilemmas in five domains of TBI practice: legal, rehabilitation treatment, family/social, medical treatment, and research issues. Additionally, it was found that there were significant differences between how members of different disciplinary groups viewed these ethical issues.

Keywords: Traumatic brain injury; Interdisciplinary; Ethical perceptions; Rehabilitation

1. Introduction

Increasing attention in scholarly literature has focused on bioethical issues in community-based and medical rehabilitation practice [1]. Some of the issues addressed within TBI rehabilitation programs have included informed consent [2], ethical concerns of teamwork [3], business practice ethics [4], the burden of family as caregiver

* Corresponding author.

[5], and the selection of patients for admission to rehabilitation programs [6]. Traditional principles of biomedical ethics have been developed primarily within the context of acute care medical traditions and have been described by such authorities as Beauchamp and Childress [7]. Until recently, it has been assumed that these acute care-focused perspectives could be extended to all types of rehabilitation and health care settings. Consensus is emerging that the nature of chronic illnesses and disabilities themselves, as well as the nature of the resultant ethical dilem-

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v.M. Taruydas, L. Shaw / NeuroRehabilitation 6 (1996) 97-111

mas experienced by the patient, caregivers, and the patients' families are qualitatively different from those inherent in acute illnesses. Therefore, the direct application of standard bioethical principles to ethical dilemmas in rehabilitation contexts may not represent the most appropriate framework for decision-making in these cases [8-10]. As a result, both ethicists and ethical practitioners are challenged to develop an increased awareness of the nature of disabilities, the lifestyles, values, needs, and problems experienced by those participating in rehabilitation settings. Thus, it is necessary to investigate how ethical principles and decision-making strategies apply to the realities of practitioners in rehabilitation and health care settings, especially within the context of interdisciplinary function. The recent history of rehabilitation practice has seen a rapid growth in the number of survivors of severe TBI, and rehabilitation programs serving them at all levels of medical and rehabilitation intervention [11]. This population of rehabilitation patients represents one of the most challenging populations for whom ethical issues must be addressed. The range, complexity, and intensity of issues which routinely arise as these patients progress through the continuum of care summates the challenges facing ethical practice in rehabilitation settings. Authorities have begun to examine the specialized and multidimensional ethical dilemmas, as well as the conceptual and theoretical bases and issues relevant to working with this group of persons [12,13]. At the same time, scholarly examination of practical and theoretical issues in TBI rehabilitation has not extended to the quantitative study of the ethical dilemmas occurring in serving persons with TBI. This project provides a preliminary empirical investigation of the ethical issues affecting rehabilitation clients and professionals. In this investigation, survey information was gathered from a diverse sample of professional nursing and allied health rehabilitation staff members, representing a continuum of care in rehabilitation relative to perceived ethical issues in the care of persons who had sustained TBIs. Specifically, this study addressed four research questions:

1. What is the frequency of occurrence of certain types of ethical dilemmas in working with persons who have sustained a TBI? 2. Which dilemmas do practitioners find to be the most important when they occur? 3. Which dilemmas do practitioners find to be the most distressing when they occur? 4. Which characteristics of either the practitioners or the types of rehabilitation settings in which they practice are related to their perceptions of importance and/or distress? 2. Method

2.1. Participants and settings Participants included 84 professional staff members from four Midwestern TBI rehabilitation centers in Illinois and Wisconsin who returned research surveys. Surveys had been distributed to all staff members in these four facilities (n = 270). The response rate was 31 %. All settings included were facilities within a large nationwide private, for-profit corporation specializing in TBI rehabilitation services. They represented a broad range of levels and types of care within the TBI array of rehabilitation care. They were: (a) a 45-bed hospital-based rehabilitation programme which included intensive behavioral treatment, coma management, and pediatric units; (b) a residential 60-bed behavioral, transitionalliving, and community re-entry facility with additional outpatient and independent living components; (c) a 19-bed skilled rehabilitation nursing center with coma management and medical neurobehavioral units; and (d) an outpatient community-based rehabilitation programme in a major metropolitan area. The participants in the study were predominantly female and the majority had achieved the highest educational level of an undergraduate degree. They were fairly young (M = 31.4 years of age) and, as a group, averaged less than 5 years of experience in rehabilitation, with slightly less than 3 of those years specifically involved in TBI rehabilitation. The vast majority of the staff responding in this study were direct care service

v.M. Taruydas, L. Shaw / NeuroRehabilitation 6 (1996) 97-111

providers, and post-acute care was the setting in which the largest group of the staff were employed (45%). However, there was another fairly large group representing the acute care setting

99

(35%). The staffs specific job titles and other demographic characteristics are provided in Table 1. The largest group of respondents identifying

Table 1 Selected demographics characteristic of rehabilitation staff

n

"._--------

Service group

Job title (n

Restorative

Physical therapy Occupational therapy Speech /language therapist Cognitive specialist

11 7 7 6

13.6 8.6 8.6 7.4

Miscellaneous

Recreational therapist Programme case manager Other

6 6 13

7.4 7.4 16.0

Psychosocial

Psychologist / neuropsychologist Personal adjustment counsellor Vocational specialist Behaviour therapist Social worker

5 4 4

6.2 4.9 4.9 4.9 1.2

Medical

Nurse

10

12.3

65 19

77.5 22.5

Age a (n = 80) Under 30 30 or older

42 38

52.5 47.5

Highest education level (n = 79) Undergraduate degree Graduate degree Other professional training

44 31 5

55.7 38.0 6.3

Staff level (n = 81) Direct care staff Management/administration Supervisory

65 10 6

80.2 12.3 7.4

28 36 13

35.0 45.0 16.3

2 1

2.5 1.3

Gender (n Female Male

=

Years of TBI experience" (n = 80)

Years of rehabilitation experience c (n = 80)

= = =

%

84)

Type offacility (n = 84) Acute care Post-acute Outpatient/independen living Long-term care Other

aRange "Range C Range

= 81)

22-52, mean = 31.4, S.D. = 7.6 1-13, mean = 2.9, S.D. = 7.0 1-19, mean = 4.5, S.D. = 4.4

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V.M. Tarvydas, L. Shaw / NeuroRehabilitation 6 (1996) 97-111

themselves by job title were those working in restorative services, followed by groups of miscellaneous, psychosocial services, and medical services staff.

2.2. Instruments Participants were administered two instruments: a demographic questionnaire and the Ethical Urgency Scale (EUS). The demographic questionnaire requested basic identifying information regarding the characteristics of the staff and the programs in which they worked. The EUS is a 25-item scale which was designed for this study based upon a review of the rehabilitation and TBI literature regarding predominant ethical issues contemporary in the field. The scale was also reviewed by a panel of expert practitioners in TBI rehabilitation. The items and content domains comprising EUS are displayed in Table 2. The items are divided into five content areas: legal, rehabilitation treatment, family/social, medical, and research domains. Instructions for survey completion required the respondent to rate each item in a Likert-type format on three different dimensions, or subscales, to derive measures of the frequency of occurrence, importance of the issue, and the distress leve! at occurrence of the issue (see Table 3). Possible ratings of frequency stimulus items were: 'very frequently' (rating = 4); 'frequently' (rating = 3); 'occasionally' (rating = 2); and 'almost never' (rating = 1). The possible ratings of importance stimulus items were: 'very important' (rating = 1); 'fairly important' (rating = 2); 'fairly unimportant' (rating = 3); and 'very unimportant' (rating = 4). The ratings possible for the distress subscale were: 'very distressing' (rating = 1); 'moderately distressing' (rating = 2); 'mildly distressing' (rating = 3); and 'not distressing' (rating = 4). Thus, respondents rated the ethical issue multidimensionally, including their behavioral, cognitive, and affective perceptions for each stimulus. For example, the subscales would allow for the identification of an issue that, while it may occur infrequently, is considered to be very important and very distressing when it does occur. This situation could be contrasted with one in which,

although an issue occurs occasionally, it is viewed as very unimportant and not distressing. Informal pilot testing with a group of six staff from the professional substitute pool staff of the primary author's medical neurobehavioral facility yielded positive comments regarding the content validity of the survey. It was further estimated that the questionnaire should take approximately 10-15 min to complete.

2.3. Procedure The research protocol and instrumentation were reviewed and approved by the Research Committee for the Midwest region of this rehabilitation corporation, as well as the Executive and Program Directors of each participating facility. All four of the facilities who were selected agreed to participate. In-house Survey Coordinators were identified by the facility Programme Directors to introduce the general project at a staff meeting, and distribute the survey packets to staff. All professional staff then received individual packets in their personal staff mailboxes. They were instructed to return the survey materials to the in-house Survey Coordinator's mailbox sealed within a response envelope provided in the packet to assure anonymity for this potentially sensitive material. The initial deadline for completion of the surveys was 2 weeks, with one follow-up contact by the researcher to the in-house Survey Coordinator. The in-house Survey Coordinator then made an announcement at a staff meeting urging those who had not done so to complete the packets. All surveys were completed and returned within 4 weeks of the project's initiation. 3. Results

3.1. Frequency of occurrence Survey results were compiled concerning the respondents' estimate of the frequency with which the stimulus issues occurred in their work with brain injured clients. The mean frequencies of event occurrences were computed and are displayed in Table 4. Four of the five events which were noted most

V.M. Tarvydas, L. Shaw / NeuroRehabilitation 6 (1996) 97-]]]

Table 2 Ethical urgency scale (EUS): Content areas and items Content area

Items

Legal

1. Invasion of right to privacy (e.g. videotaping client treatments without informed consent). 2. Inappropriate utilization of guardianship (e.g. premature initiation/delayed withdrawal). 3. Inadequate determination of client competency for decision-making 4. Breaches of client's confidentiality. 5. Inadequate representation of client's interests in legal proceedings, e.g. divorce, child visitation/custody.

101

Table 2 (Continued) Content area

Iterns

Medical

1. Withdrawal of life support or 'do not resuscitate' decisions. 2. Overuse or inappropriate use of psychotrophic medications for behavioral control. 3. Inappropriate use of physical restraints. 4. Withdrawal of medical treatment decisions (e.g. withdrawal of oxygen nutrition and hydration). 5. Inadequate consideration of medical contradictions to rehabilitation treatment.

Research

1. Problems with getting appropriate informed consent to participate in research. 2. Inadequate research design/protocols. 3. Projects selected on basis of ease of accomplishment rather than clinical importance. 4. Inadequate controls to ensure minimal risk to subjects.

Rehab treatment

1. Inadequate training/experience of staff to render required selvices. 2. Overuse of restrictive behavioral techniques without evidence that positive treatment approaches have failed, e.g. overuse of aversive behavioral or paradoxical techniques. 3. Lack of access to appropriate or least restrictive treatment settings (e.g. client . . . . . is suitable for community re-entl)' programme, frequently were WithIn the domaIn of rehablhtabut funding is available for skilled nursing tion treatment issues while the other was a legal center only). issue. These five events were: (a) inadequate 4. Problems in determining duration training or experience of staff to render required and/or intensity of services appropriate t o . . . . . individual client due to limited resources. services; (b) problems In determInIng duration 5. Inappropriate prognostic and/or intensity of services appropriate to an judgments/ statements to others. individual client due to limited resources; (c) lack 6. Overuse/premature use of psychiatric of access to appropriate or least restrictive behavdiagnoses which may stigmatize clients . I t h . 'th t ' d th t 't' and decrease their access to treatment lOra ec mques WI ou eVI ence a POSI Ive settings. treatment approaches have failed (e.g. overuse of

Family /social*

1. Return of client to a severely dysfunctional family resultingin potential harm to client. 2. Sexual abuse of client (by other clients, staff, family or others). 3. Inappropriate restriction of client's sexually expressive behaviours. 4. Denial of access to the client of significant others or other family by legal guardian or 'next ofkin'. 5. Undue pressure on over-stressed families to accept responsibility for home care of severely impaired clients despite evidence of serious physical or psychological risk to other individuals in the family (e.g. serious neglect or abuse of minor children).

aversive behavioral or' paradoxical techniques); (d) breaches of client confidentiality; and (e) inappropriate prognostic judgments/statements to others. These events could be considered to occur 'occasionally' based on their ratings between 2.00 and 2.50 on this subscale. Those issues which were perceived to be least frequent were: (a) withdrawal of life support or do-not-resuscitate decisions; (b) sexual abuse of client (by other clients, staff, family or others); (c) inadequate research controls to ensure minimal risk to subjects; (d) problems with getting appropriate informed consent to participate in research; and (e) inadequate representation of a client's interests in legal proceedings (e.g. divorce, child visitation/custody). These particular events

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v.M. Tarvydas. L. Shaw / NellroRehabilitation 6 (1996) 97-]]]

Table 3 Ethical urgency scale: structure and rating Scaling

Construct

Scale A: Frequency of occurrence S's estimate of how often issue occurs

1-4 1 = very frequent 4 = almost never

Objective frequency

Scale B: Importance of issue

S's opinion regarding the relative importance of issue when it occurs

1-4 Cognitive behaviour 1 = very important 4 = very unimportant

Scale C: Distress level at occurrence

S's estimate of the relative amount of emotional 1-4 distress experienced by all parties involved 1 ~"very distressing in the issue when it occurs 4 = not distressing

Rating scale

Definition

are reported to occur 'almost never' in the experience of the respondents, based on their subscale ratings of less than 1.5. 3.2. Importance of issue

Responses to this subscale rated their opinions regarding the relative importance of the ethical issue when it occurs. Results of the respondents' ratings providing their mean importance ratings are shown in Table 4. The six events (two items were tied at ranking 5) which were perceived to be most important to the staff responding were: (a) sexual abuse of client (by other clients, staff, family or others); (b) inadequate training/experience of staff to render required services; (c) inadequate consideration of medical contraindications to rehabilitation treatment; (d) return of client to a severely dysfunctional family resulting in potential harm to client; (e) undue pressure on over-stressed families to accept responsibility for home care of severely impaired clients despite evidence of serious physicalor psychological risk to other individuals in the family (e.g. serious neglect or abuse of minor children); and (f) withdrawal of medical treatment decisions (e.g. withdrawal of oxygen nutrition and hydration). The respondents have considered these issues 'very important' based on their ratings of 1.43 or less on the importance subscale. The issues which were rated least important were primarily clustered in the research content domain, which is not a surprising result based on

Emotional experience

the primarily clinical climate within these active treatment programs. The six least important areas (there was a tie at the 5th ranking) as rated by the respondents were: (a) research projects selected on basis of ease of accomplishment rather than clinical importance; (b) inadequate research design/protocols; (c) problems with getting appropriate informed consent to participate in research; (d) inadequate research controls to ensure minimal risk to subjects; (e) inappropriate restriction of client's sexually expressive behaviours; and (f) inappropriate utilization of guardianship (e.g. premature initiation/delayed withdrawal). The staff members found these six issues to be 'fairly unimportant' when they do occur based upon their rating between 1.75 and 2.50 on the importance subscale. 3.3. Distress level at occurrence

The last subscale to which subjects were asked to respond requested that they rate the ethical issues in terms of their opinions regarding the relative amount of distress that they and all parties involved in the issue experience when the issue occurs. The average ratings of the stimulus items by the staff is presented in Table 4. Three of the five most distressing items dealt with the ethical issues that fell within the family/social domain. These five issues were: (a) sexual abuse of client (by other clients, staff, family or others); (b) inadequate training/experience of staff to render required services; (c) un-

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103

Table 4 Respondent ratings on the ethical urgency scale --~'.'-'----"--."-.

Ethical issue

Frequency M

Importance

S.D.

M __._-'''.".-

Distress level

S.D.

M

S.D.

-"..

Invasion of right of privacy

1.51

0.78

1.70

0.90

2.23

1.03

Inappropriate utilization of guardianship

1.63

0.76

1.78

0.97

2.20

1.15

Inadequate determination of competency

1.77

0.77

1.68

0.86

2.06

1.00

Breaches of confidentiality

1.96

0.84

1.50

0.88

1.75

0.97

Inadequate representation of client's interests in legal proceedings

1.36

0.611

0.63

0.95

2.04

1.13

Inadequate staff training/experience

2.48

1.00

1.33

0.79

1.46

0.74

Overuse of restrictive behavioral techniques

1.42

0.62

1.60

0.77

1.80

0.92

Lack of access to appropriate or least restrictive treatment settings

2.24

0.95

1.57

0.86

1.76

0.95

Problems in determining duration and/or intensity of services because of limited resources

2.35

0.85

1.58

0.82

1.75

0.78

Inappropriate prognostic judgment/statements

1.90

0.85

1.76

0.88

1.92

0.97

Overuse /premature use of psychiatric diagnoses

1.45

0.72

1.63

0.82

2.05

1.08

Return of client to severely dysfunctional family with risk of harm to client

1.80

0.69

1.38

0.78

1.57

0.82

Sexual abuse of client

1.19

0.48

1.26

0.66

1.44

0.89

Inappropriate restriction of sexually expressive behaviour

1.56

0.76

1.78

0.76

2.08

0.93

Denial of access to significant others or other family by guardian

1.42

0.64

1.73

0.85

1.96

0.87

Undue pressure on families to accept home care serious risk to other family members

1.42

0.68

1.43

0.82

1.54

0.83

Withdrawal of life support

1.48

0.72

1.44

0.76

1.95

1.08

Overuse or inappropriate use of psychotropic medications

1.54

0.82

1.48

0.75

1.73

0.86

Inappropriate use of physical restraints

1.47

0.69

1.47

0.72

1.81

0.94

Withdrawal of medical treatment decisions

1.15

0.42

1.43

0.80

1.81

1.06

Inadequate consideration of medical contraindications to treatment

1.61

0.86

1.37

0.64

1.69

0.94

Problems on appropriate research informed consent

1.25

0.52

2.05

0.93

2.63

1.03

Inadequate research design/protocols

1.44

0.71

2.06

0.97

2.67

0.99

Research project selection based on ease

1.57

0.86

2.14

1.03

2.56

1.07

Inadequate controls to ensure minimal risk

1.24

0.54

1.81

1.08

2.23

1.17

due pressure on over-stressed families to accept responsibility for home care of severely impaired clients despite evidence of serious physical of psychological risk to other individuals in the family (e.g. serious neglect or abuse of minor children); (d) return of client to a severely dysfunctional

family resulting in potential harm to client; and (e) inadequate consideration of medical contraindications to rehabilitation treatment. Based on these subscale ratings, the staff could be said to find these dilemmas to be 'moderately to very distressing' when they do occur.

V.M. Taruydas, L. Shaw / NeuroRehabilitation 6 (1996) 97-111

104

Four of the five least distressing ethical events are contained in the research item domain. The five items lowest in their distress ratings were: (a) inadequate research design/protocols; (b) problems with getting appropriate informed consent to participate in research; (c) research projects selected on basis of ease of accomplishment rather than clinical importance; (d) inadequate research controls to ensure minimal risk to subjects; and (e) invasion of right to privacy (e.g. videotaping client treatments without informed consent). These concerns would be seen as 'mildly to moderately distressing' if they were to occur, based upon these subscale ratings. 3.4. Differences by respondent characteristics

Analyses of variance (ANOVAs) were concluded to examine the differences in respondents' perceptions of the frequency, importance or distress level at occurrence of ethical issues based upon their individual or programme characteristics. Following significant results, post hoc comparisons were conducted between the subgroups' responses to individual ethical stimulus items within the specific content domain for the particular subscale involved utilizing the Scheffe method. No significant differences were found in any of

the ethical content areas (legal, rehabilitation treatment, family/social issues, medical, or research) within the subscales (frequency, importance, or distress level) for the respondent characteristics of: highest educational level attained; years of head injury rehabilitation; overall years of rehabilitation experience; type of facility; or level of current position held. It should be noted that there were no differences in the frequency of occurrence of the 25 ethical issues across any of the respondent characteristic categories. This result tends to support the validity of the survey results due to the similar perceptions of the respondents to this presumably fact-based subscale. Significant within-group differences were found in several subscales regarding the characteristics of age, gender, and job title. Individuals who were 30 years of age or older reported that they perceived the ethical issues involved in the research content area to be less important than staff members under 30 years of age (t(68) = - 2.69, P < 0.01). Post hoc comparisons of differences between the two groups on individual items within the research content area revealed that there were significant differences between the two age groups on all four items that comprise this domain (see Table 5). Thus, respondents over 30

Table 5 Individual subscale item differences by responder groups Subscale

Item

Group

Mean (years)

S.D.

df

Importance*

Problems in appropriate research informed consent

30 years + 30 years-

2.4 1.8

0.98 0.84

68

-2.83

0.006

Inadequate research design/protocols

30 years + 30 years·-

2.4 1.8

1.0 0.93

66

-2.35

0.022

Research project selection based on ease

30 years + 30 years-

2.4 1.9

1.1

66

-2.03

0.047

0.95

Inadequate controls to ensure minimal risk

30 years + 30 years-

2.1 1.6

1.3 0.89

67

-2.22

0.030

Family/social'

Inappropriate restriction of sexually expressive behaviour

Males Females

2.2 1.67

0.94 0.66

74

2.78

0.007

Undue pressure on families to accept home care despite serious risk to other family

Males Females

1.83 1.34

1.2 0.69

75

a Subscale

ratings: 1

=

very important; 2

=

fairly important; 3

=

fairly unimportant; 4

=

2.25

very important

P

0.027

v.M. Tarvydas, L. Shaw / NeuroRehabilitation 6 (1996) 97- J J J

105

Table 6 Means and F-ratios of EUS subscales by selvice group types EUS subscale Importance of medical issues a Distress of medical

issues b

F-ratio

p

F (3,70) = 3.40

0.022

8.5 +

F (3,68) = 3.44

0.021

11.0 +

Restorative services

+ Denotes paiIWise comparison significantly different at a Means

could vary from 5 to 20. M

items b Means could vary from 5 to 20. M items

=

=

P

5, very important; M

Medical services

Other

5.6 +

6.3

7.1

+

8.0

8.3

7.5

< 0.05 utilizing the Schcffe procedure =

5, very distressing; M

years of age viewed problems in informed consent, inadequate design, selection of projects for ease, and inadequate research controls as less important than their younger colleagues. A significant difference also was found between the male and female subjects in perceived importance of the ethical issues in the family/social content domain (t(73) = 1.95, P < 0.05). Female respondents tended to find family/social ethical concerns to be more important than did their male counterparts. There were differences in how the male and female respondents viewed the importance of two specific items in this domain. Male staff viewed inappropriate restriction of sexual expression of clients and undue pressure on families to accept clients for home care, despite serious risk to family, as less important than did the female staff (see Table 5). An ANOVA indicated that the perceived importance and distress levels of medical issues differed by service group types. The restorative and psychosocial services groups proved to be significantly different (P < 0.05) utilizing the Scheffe procedure. The means and F-ratios for these groups are presented in Table 6. Post hoc Scheffe procedures further identified the items within the importance and distress subscales which differentiated the service groups. These three items were all within the medical content domain, and three of the four significant pairwise differences occurred between the restorative and psychosocial services groups. The items involved concerned the importance of issues in withdrawal of medical treatment decisions; distress level at overuse or inappropriate use of psychotropic medications; and distress level

Psychosocial services

20, very unimportant since medical content domain includes five

=

20, not distressing since medical content domain includes five

at withdrawal of medical treatment. The fourth significant difference in groups occurred between restorative services and other staff members on the overuse or inappropriate use of psychotropic medications. The means and standard deviations for these items are displayed in Table 7. Restorative services staff appear to perceive withdrawal of medical treatment decisions as less important than psychosocial services professionals. Additionally, they appear less distressed than psychosocial services and other staff on issues involving overuse or inappropriate use of psychotropic medications for behavioral control, and withdrawal of medical treatment decisions. In summary, there were significant differences between how various team members viewed specific ethical issues in TBI rehabilitation. Thus, it can be said that the respondent characteristics of age, gender and job title differentiated the responses of individual rehabilitation team members to some of the ethical issues which they encounter in TBI rehabilitation practice. 4. Discussion When examining the frequency, importance, and levels of distress associated with the various ethical problems reported by the TBI rehabilitation staff members, several observations should be noted. The ethical issues which have received the most prominent attention in both the lay and professional literature appear with the least frequency in their reported practices. Respondents described withdrawal of medical treatment decisions (e.g. withholding of nutrition and hydration) and sexual abuse of clients as occurring 'almost

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Table 7 Significant differences between service groups on EUS items Items Restorative services M

Psychosocial services

Medical services

Other

(S.D.)

M

(S.D.)

M

(S.D.)

M

(S.D.)

.. _----, ....,"',--,-,.,.

Importance Withdrawal of medical treatment decision"

1.72"

(0.97)

1.00'

(0.0)

1.30

(0.48)

1.41

(0.80)

Distress level Overuse or inappropriate use of psychotropic medications b

2.18'

(0.98)

1.40"

(0.63)

1.60

(0.84)

1.48 e

(0.66)

Withdrawal of medical treatment decisions h

2.21"

(1.15)

1.33'

(0.90)

1.60

(1.08)

1.76

(0.94)

"Contrasting group one. bScheffe procedures identified the items displayed as differentiating significantly at P < 0.05 between services groups. eContrasting group two.

never'. This observation runs counter to the contemporary intense public interest created by such prominent bioethics cases as the withdrawal of nutrition and hydration from Nancy Cruzan and other persons diagnosed as being in persistent vegetative state. The most prevalent type of ethics complaint brought to ethics committees of the major professional organizations such as the American Psychological Association and other professional credentialing bodies have involved dual or sexual relationships with clients [14-17], The respondents in this study reported this ethical violation to occur 'almost never'. However, they appropriately did find sexual abuse of clients to be the most important and distressing of all the ethical issues included in the survey when these situations did occur. It is important to note that this problem was not reported to occur with the frequency that these professional disciplinary reports would lead one to believe. Many individuals with TBls who are seen in rehabilitation often have diminished capacity for consent and are cognitively and emotionally dependent during their rehabilitation process. Cole [18] and Watson-Armstrong, O'Rourke and Schatzlein [19] have called attention to the heightened vulnerability of such persons with disabilities to sexual abuse and exploitation. Therefore, the reportedly

low frequency of client sexual abuse in this study is a particularly heartening finding. However, these clients may also have been a particular subset of persons with TBls who may be less vulnerable to potential abuse than some of their peers. They were involved in active, private-pay rehabilitation treatment. Such treatment is often closely monitored by both family, insurance and other external professional staff. They often were regaining cognitive and other functions steadily, or they would not have remained in active rehabilitation. This recovery might make them more able to assert themselves, and/or to call attention to their abuse than more severely impaired patients in less monitored or active settings such as long-term psychiatric or skilled nursing care. The three ethical dilemmas described as most frequent were: (a) inadequate training or experience of staff to render required services; (b) problems in determining duration and or intensity of services due to limited resources; and (c) a lack of access to appropriate or least restrictive treatment settings. These problems appear to reflect accurately the burdens of clinical programs in the late 1980s and early 1990s, which were in the midst of rapid programme expansion. This finding is consistent with the observations of authorities that TBI rehabilitation is an area in which there have been expansion-related problems. The de-

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velopment of adequate new and ethical treatment techniques, programs, and resources has had to take place within a fairly rapid time frame and competitive milieu [11,20,21]. This program-building has occurred in a context where the fundamental commitment of society to devote adequate resources to meet their ongoing catastrophic-level needs of TBI survivors and their families has been questioned [13,22-24]. Thus, it is not surprising to find TBI staff reporting that they find that these organizational or systemic problems are those that were most frequent. It is especially noteworthy that the most frequent issue of inadequate training and experience of staff is also viewed by the respondents as the second most important and distressing issue. This combination, of an issue which is not under direct staff control, has the highest reported frequency, and is also rated as very important and moderately distressing, could be seen as highly problematic. One could speculate that such a situation may contribute to the numerous anecdotal reports of high staff stress and turnover levels among TBI rehabilitation personnel. This finding could also reflect the complexity and multidimensional demands of treating this difficult population even for skilled, experienced, and competent rehabilitationists. The concerns in the literature regarding the overuse of restrictive or aversive behavioral techniques [25,26], inappropriate use of physical restraints, or the overuse or inappropriate use of psycho trophic medications for behavioral control [28] were not reflected in a high frequency of occurrence in this study. These events were rated as occurring only at frequencies closer to 'almost never' (restrictive or aversive behavioral treatment, and restraints) or 'occasionally' (overuse of medications). The staff did report that they perceived these issues as 'fairly' to 'very important', and 'moderately' to 'very distressing' if they should be encountered. Thus, respondents demonstrated attitudes consistent with the literature on the seriousness of these ethical dilemmas. While not rising to prominence in terms of being of the highest rated frequency of occurrence, two additional ethical issues in the family or social domain appeared to assume a relatively

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high level of urgency; the return of a client to a severely dysfunctional family, resulting in potential harm to the client, and placing undue pressure on families to accept responsibility for home care of severely impaired clients despite evidence of serious physical or psychological risk to others in the family. This judgment is based upon the ratings of these problems by respondents as being within the five most important and distressing issues. Both of these concerns would seem to reflect a heightened awareness of the sometimes overwhelming stress, delicate dynamics, and readjustments within the client-family system after a serious TBI [29-31]. Another issue of ethical urgency to the staff was that of inadequate consideration of medical contraindications to medical treatment. This problem was rated third in importance ('very important') and fifth in level of distress ('moderately distressing') to staff when this situation arises, even though it occurs only 'occasionally'. This finding may reflect staff concern that the pressure on the rehabilitation facilities from families and requirement of insurers to treat patients with TBI aggressively might override the medical needs of these patients. There has long been ethical tension between patient-interest and the self-interests of the health care facility and professional [32]. There are also increasing pressures on the rehabilitation field to demonstrate more marked treatment outcome gains in shorter time frames while struggling to maintain the quality and ethical nature of treatment [33]. These concerns continue to occupy interdisciplinary TBI rehabilitation teams and may be reflected in the responses of this study'S staff members regarding medical suitability for treatment. When examining the characteristics which differentiated staff members' responses to the ethical issues presented in the survey, it was evident that there were significant differences between how particular groups of team members viewed these issues. This finding extends the traditional awareness that rehabilitation teams are challenged to arrive at functional, collaborative treatment plans and decisions to include the critical dimension of team ethical decision-making. It expands that perspective by suggesting that individ-

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ual team members potentially may experience and respond to ethical dilemmas quite differently. While individuals may tend to agree on an ethics dilemma's factual frequency level of occurrence, they may differ regarding the level of importance they perceive as being attached to the event, and the degree of emotional distress they experience when in the situation. The data in the present study have indicated that the specific characteristics of age, gender and job title or disciplinary group have affected how team members perceive some ethical problems. Younger respondents found research dilemmas to be less important than their older colleagues. It might be reasonable to speculate that the younger staff may still have had a professional education programme as their frame of reference due to its greater recency in their experience. These training programs may have emphasized research and research methods to a greater degree than the clinically focused treatment settings in which the staff were now involved. In any case, research items on the survey received consistently low ratings by all respondents in terms of their levels of importance and distress experienced when concerns arose. This finding is discouraging in terms of the widely recognized need for high quality, applied research to guide the development of relevant and effective treatment strategies in this new and complex area of rehabilitation practice [13,33]. Another set of findings involved the differences in how staff members of each gender responded to family or social ethical dilemmas. Females tended to find these concerns to be more important than males. Items involving the inappropriate restriction of client sexual expression and pressuring of families to accept home care for clients despite risk to family members found females thinking these concerns were more important than males. It is not possible to explain the reasons for these results definitively based on this study. However, it is tempting to emphasize the recent literature, which maintains that women have a greater tendency than men to subscribe to a moral model preferring the ethics of care rather than the ethics of justice [34,35]. The position taken from the obligations related to the ethics of

care emphasizes the relational factors as critical to ethical judgment, and would be consistent with the differential patterns of responses to this familial/social grouping of ethical dilemmas. The last area of significance between group differences concerns those between respondents by job title and would support the examination of how specific professional training and traditions influence ethical perspectives. The restorative and psychosocial services groups were substantially different in their viewpoints regarding the importance and distress levels involved in the medical ethical issues described in TBI practice. Psychosocial treatment staff viewed withdrawal of medical treatment decisions as both more important and more distressing than those in restorative services. They also were more distressed than restorative and other staff at the overuse or inappropriate use of psychotropic medications. Intuitively, this finding would seem to be consistent with the greater involvement and training of staff members from the respective disciplines of each of these groups. Professionals from the fields of psychology, neuropsychology, social work, behaviour therapy, and counselling have more background experience and training in assessment, behavioral intervention, and empathic responding to the social and emotional consequences of these dilemmas. Models of ethical decision-making would suggest that these between-group differences might lead to quite differing patterns of ethical behaviour for individual team members [36,37]. In such instances, one must consider the difficulty offered by the ethical obligation rehabilitation professionals arrive at and, at the same time, support collaborative decisions where client welfare is at stake [38]. Traditional models of ethical decision-making in the health care and mental health professions have focused upon the individual professional as the focus of the ethical decision-making enterprise. Tarvydas and Cottone [39] have presented a reformulated hierarchical model of ethical decision-making which calls upon the rehabilitation professions to incorporate both individual and contextual aspects of ethical decision-making. This model includes consideration of the interdisciplinary team dynamics and deci-

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sion-making process as well as institutional and societal influences in their contributions to the actual execution of ethical behaviour. Taken together, three important implications might be attached to these differences in perspective as experienced by various members of the treatment teams represented in this study. First, the level of ability of the rehabilitation team to reach consensus or work collaboratively regarding the appropriate course of action in an ethical dilemma might be impacted negatively unless sufficient attention is devoted to developing sound team-oriented methods of ethical decision-making and conflict resolution. Such efforts must both recognize and legitimize the open discussion and working through of individual differences in training and perspectives which affect any specific ethical dilemma. Based on these findings, it seems perilous to assume that any ethical decision-making model or training that does not accommodate this multi-individual and team context for ethical behaviour will be adequate to the needs of rehabilitation interdisciplinary practice. Second, the team's ability to support the implementation of the selected course of action consistently may be impaired. The ideal in interdisciplinary practice is to reach treatment decisions collaboratively, and ethically obligates the individual practitioner to support the collective decision in dealings external to the team [40,38]. This posture would seem difficult or impossible to maintain in situations where ethical decisions are not processed fully taking into account the differing perspectives of individual members. If and whenever such support for the team ethical decision is breached by one or more staff members, there might be considerable temptation for dysfunctional behaviour by parties to the decision. Such behaviours as: sabotage of the team goal; divisiveness between team members, client and family; or undercutting of the credibility or position of one party by another unfortunately are not unfamiliar situations to professionals working in the stressful and ethically charged situations often encountered in rehabilitation [40]. Failure to attend to and adequately work through the types of various group differences in perspective

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found in this study would only appear to contribute greatly to such difficult dynamics. Lastly, even when team members may adhere to the collaborative team interpretation of ethical situations, some team members may experience substantial levels of distress in dealing with these ethical dilemmas. Rest [37] has called attention to both the necessary contribution of sufficient individual strength, and the psychological and informational resources needed to sustain ethical behaviour. If a team member or group of team members are subjected to sufficient levels of distress in discharging what they perceive to be their professional obligations, it would be reasonable to assume that they may experience detrimental effects. Poor professional practices, diminished effort and levels of client care, personal distress, and high turnover rates in settings prone to such climate are possibilities. It is clear that further and broader research exploration of the team context for ethical decision-making is needed to further this preliminary investigation within the specialized area of TBI rehabilitation practice. Three limitations of the current study should be noted. First, the current results should be considered to be only suggestive given the relatively small sample size, fairly low survey return rate, and composition of a regionally and setting-limited nature. The survey return rate, while only 31 %, is considered relatively good given the sensitive nature of the information, the typically hectic scheduling of the staff, limited attempts at response follow-up, and the emphasis on billable hours provision in such private sector settings. However, it is also possible that social desirability concerns prevented some persons from responding to such ethically controversial items despite assurances of anonymity. Second, the study involved a survey instrument created for this use since other instruments were not available for this specific rehabilitation application, and none are available that attempt to examine the potential dimensionality of perceptions of ethical issues. However, this instrument has not been subjected to more extensive psychometric evaluation and may not have offered the respondents an adequate opportunity to express

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their observations. The third limitation concerns the complexity and sensitivity of the issues involved in ethical practice which may render them minimally amenable to study through any paperand-pencil methodology. Every attempt was made to address the social desirability bias through ensuring anonymity rather than confidentiality to respondents, regardless of whether it might diminish the response rate of the study. The opportunity of the staff to respond to items by providing dimensional responses concerning the frequency, importance, and distress levels associated with each was a central component of the study. This approach allowed for acknowledgment of the complexity of the issues' impact on staff, and was intended to increase the face validity of the instrument. Despite these limitations, the results do appear to add to the dimensionality of our understanding of ethical practice and to the contextual knowledge of rehabilitation ethics. The findings supplement speculation regarding the daily nature of ethical practices in a manner which incorporates the clinical experience of rehabilitationists through direct survey. This project also enhances the emerging literature on models of organizational and contextual ethics, and the ethics of care. Clients, practitioners and educators must continue to examine their ethical practices and refine their ethical standards, since clinical standards will continue to evolve in these increasingly complex and progressive times. References [1]

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