gency
References 1. Wampler
BE,
Grammatikifi.
Software,
San
Williams Francisco,
MP: Reference
1988
2. Ley P: Giving information to patients, in Social Psychology and Behavioral Medicine. Edited by Eiser JR. New York, Wiley, 1982 3. Powers RD: Emergency department patient literacy and the readability of patient-directed materials. Annals of Emer-
Medicine
17:124-126,
1988
4. Taub HA, Baker MT, SturrJF: Informed consent for research: effects of readability, patient age, and education. Journal of the American
Geriatrics
Society
of Medicine 7. Baker MR,
formed Veterans
JAMA
34:601-606,
1986
302:900-902, 1980 Taub HA: Readability
consent
forms
Administration 250:2646-2648,
of in-
for research in a medical center. 1983
MF, Folstein SE, McHugh PR: Mini-mental state: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research 12:189-198, 1975 9. Cruzan v Director, Missouri Department of Health, 497 US, 110 S Ct 2841, 111 L Ed 2d 224(1990)
8. Folstein
5. Taub HA, Kline GE, Baker elderly and informed consent:
level
vocabulary
Experimental
and
corrected
MT:
The
effects of feedback.
Aging
Research 7:1371981 6. Grundner TM: On the readability of surgical consent forms. New EnglandJournal 146,
Confidentiality and the Family as Caregiver John
P. Petrila, J.D., LL.M. Robert L. Sadoff, M.D.
Manyfamiiesprovide mentally ill relatives with a residence and other support. Althoughprofessionals increasingly acknowledge the importance ofthe supportive role families play, families continue to report that they receive too little information from professionals about the patient, particularly when the family acts as caregiver. The authors suggest that mental health professionals’ views about confidentiality may prevent them from providing information to families and urge professionals to rethink the issue ofconfidentiality and its application to families acting as caregivers. The authors conclude that certain information about a patient can-and should-be shared with families who are in a caregiver role without violating clinical, legal, or ethicalprinciples.
Mr.
is deputy commisand counsel of the New York State Office of Mental Health in Albany, 44 Holland Avenue, Albany, New York 12229. Dr. Sadoff is clinical professor ofpsychiatry at the University of Pennsylvania.
sioner
136
Petrila
Many persons with mental disability reside with or are discharged from hospitals to their families. One survey ofmembers ofNew York’s Alliance for the Mentally Ill found that 40 percent of the families surveyed had mentally ill relatives living with them (1). Minkoff estimated that nearly 65 percent of psychiatric patients were discharged from a hospital to their families (2). New and growing recognition of the importance of developing community supports has been accompanied by increased interest among professionals in providing support to families, principally because the family often functions as the “pnimary lifelong support system” (3). In a recent survey, mental health practitioners strongly agreed that families should be incorporated into treatment and given a supportive role (4). Ninety-eight percent of the respondents believed it was very impontant on moderately important for families to become educated about mental illness; 92 percent of the respondents thought it similarly important for families to oversee mcdication regimens ofpatients living at home. At the same time, recent surveys offamilies ofpeople labeled mentally ill suggest that many families believe they receive too little information
February
1992
Vol. 43
No.2
about their mentally ill relative and about the role the family might play in patient care-for example, in monitoring medication and its effects (5-8). Participants in one survey reported being very concerned that mental health professionals did not give them information about diagnoses, current treatments, availability of community resources, and effective strategies for managing the patient’s illness at home (5). Families particularly needed information about medications and side effects, they believed. They stated that it was often difficult to know whether changes in the patient’s condition resulted from reactions to medication or were additional symptoms of illness. Although attempts to ascertain the perceptions of families and consumers about professional services and attitudes are relatively new, data from families show that the amount of information provided by professionals is insufficient. In our opinion, families in the role ofcaregiver often receive insufficient information because practitioners believe that legal and ethical principles governing confidentiality prevent them from sharing information with families. In this paper, we suggest that because of the critical role families often play in sustaining mentally ill
Hospital
and Community
Psychiatry
rule of confidentiality The concept ofconfidentiality is fundamental to mental health practice. Both legal and professional ethical principles assume that material learned by the mental health professional during treatment will be kept in confidence. The law protects the confidentiality ofthe therapeutic relationship for at least two reasons. First, it embraces the assumption that trust is at the core ofsuccessfu.l treatment, and that trust can develop only if a patient is confident that revelations may be made to a therapist without fear ofdisclosure to others. Second, because of the issue of stigma, the law attempts to enable a person to hold in confidence even the fact that treatment has been sought. Such legal protections often take two forms. First, “privileged communications” statutes bar psychiatrists (and in many states psychologists) from testifying in court, except under specific circumstances, about statements made by a patient in therapy (9). Second, and more relevant, are statutes that protect the confidentiality of case records and, in many cases, the material in them. Ethical canons also include the principle ofconfidentiality. Section 4 ofthe Principles ofMedicalEthics, With Annotations Especially Applicable to Psychiatry states that “a physician shall respect the rights ofpatients, of colleagues, and ofother health professionals, and shall safeguard patient confidences within the constraints of the law” (10). An mappropriate breach of confidentiality may result in a lawsuit if damage occurs as a consequence of the breach. However, confidentiality is not absolute. It may be limited by legal mandate, for example, a court order or valid subpoena. There are other limitations when the protection of the welfare of the individual or com-
munity is at stake. For example, paychiatrists readily breach confidentiality when suicide is imminent and the patient requires involuntary hospitalization. In such a case, it seems obvious that avoiding harm to the patient should take precedence. In other cases, mental health professionals may struggle with apparent contradictions between the principle of confidentiality and legally sanctioned incursions into the privacy of patient records or into the confidential relationship between clinician and patient. A classic illustration of this dilemma is presented by the wellknown case ofTarasoffv. Regents of the University ofCaltfornia (1 1). In this case, the California Supreme Court held first that mental health clinicians had an obligation to warn third parties that a patient might present a danger to them. After rehearing the case to consider arguments by the American Psychiatric Association and the American Psychological Association that the ruling would force clinicians to violate their obligation to preserve confidentiality, the court was not persuaded and adopted the even broader holding that in some cases clinicians had an obligation to protect third parties (12). As Tarasoffand cases like it demonstrate, clinical practice, professional ethical norms, and legal standards are interrelated (1 3). By making the interests of third parties relevant in certain circumstances, these cases have forced clinicians to rethink traditional notions about confidentiality. It is in this light that we believe that the application of the principle of confidentiality to the relationship between clinicians and families acting in the role of caregiver must be reconsidered. Current practice, in which clinicians often neither seek information relevant to treatment or legal decisions they must make nor share appropriate information with families, may lead to difficulties for both parties. We believe that cxchanges like those outlined below may be made while preserving the values protected by the ethical and legal principles of confidentiality. In fact, as the two lawsuits discussed
Hospital
February
relatives in the community, confidentiality needs to be reexamined with the aim ofbroadening the type of information routinely made available to families acting as caregivers to a mentally ill relative. We believe that such a change can occur consistent with clinical, legal, and ethical principles.
The
and
Community
Psychiatry
1992
Vol. 43
No.2
below evolving dards quire mation others
suggest, it seems clear that professional and legal stannot only permit but may rethe exchange ofcertain inforwith family members and acting in the role of caretaker.
Clinical issues When a patient is discharged from a psychiatric hospital to another facility-for example, an outpatient clinic or a halfway house-the discharging psychiatrist routinely shares relevant treatment information with the clinic to which the patient is referred. We submit that the treating psychiatrist should also share certain information with the flimily acting as caregiver. From a clinical point ofview, families in the role of caregiver should know at a minimum the importance of ensuring that patients take their medication and what side effects might occur. Families also should be told what signs or symptoms to look for if the patient does not comply with treatment or take prescribed medication, or ifhis or her condition begins to deteriorate. Caregivers, including families, should know the special needs of patients who are living with them while receiving follow-up outpatient or day care treatment. Any perceived potential for dangerous behavior to self or others should be discussed. As an obvious example, ifa member ofa family acting as caregiver owns a gun, possible precautions about access should be discussed. Mental health professionals should also encourage family members and other caregivers to report to the treatment source-the treating psychiatrist, other mental health professional, or outpatient clinic-any changes in the patient that may be significant and relevant to future behavior. If hospitalization is proposed, a family member with whom the patient lives can provide invaluable information about the person’s symptoms, behavior, and history. Such information may be very important to the clinician in making treatment decisions and, in some cases, determining whether or not to pursue hospitalization. A clinician should actively enlist the family with whom the patient
137
lives as a source of information about compliance because the family may be the best source of information. Failure to use such a source of information would seem to unnecessarily complicate patient care. To discharge a patient to his or her family without providing the types ofinformation described above is unfair to the caregiver, who may be forced to make critical decisions with little professional guidance, including whether to hospitalize the patient or whether a symptom such as lack ofappetite, for example, is related to medication or to worsening depression. The lack of information can have clinical impact. Families who receive insufficient information may have more difficulty sustaining the patient in the community (14). To argue in favor ofproviding information to families is not to suggest that the role offamilies be “professionalized.” Rather, the argument suggests that families who provide residential support in particular can play a critical role in helping the patient live in the community and in assisting the treating clinician. However, these roles can be carried out only with adequate information.
The victims and their families subsequently sued the hospital from which the patient had been discharged three months earlier. They alleged that the hospital and the hospital’s psychiatrist were negligent in not telling the patient’s family that noncompliance with neuroleptic medication might lead to regression and possible violence. They also claimed that the hospital was negligent in not telling the family to lock up guns. The hospital successfully defended the malpractice claim by placing into evidence a note from the patient’s
record.
The
note,
by a social
insanity.
worker, described communications to the family during discharge planning about the importance of mcdication compliance, the role of the family in monitoring the medication, and the need to report to the hospital or the outpatient clinic if the patient was noncompliant. The note also described a warning to the family about the potential violence of the patient and advice to the family to lock up guns in the home. Although the family denied receiving such communications, the jury, presumably because of the record of the discharge planning process, ruled for the defendants, finding no deviation from a professional standard of care. This case does not imply that the family has a professional duty to its mentally ill member. It does suggest that the professional staffofthe hospital has an obligation to share necessary information with the family when the family is to act in the role of caregiver. The family may choose to accept or reject the information and recommendations given by the hospital. If the recommendations are rejected, the family obviously must assume the responsibility for the consequences. A second case involved malpractice litigation against clinicians who failed to inform themselves about material later judged important by the court and who failed to provide adequate information to a family after deciding not to hospitalize an individual. In this case, Hamman v. County of Maricopa (15), the Arizona Supreme Court reinstated a malpractice claim against a psychiatric emer-
138
February
Legal
issues
Failure to share certain information with families acting as caregivers may lead to allegations of malpractice, as is illustrated in the two cases presented below. The first case was never appealed and was not reported in the literature but was encountered by one ofthe authors (RLS). A 26-year-old man was hospitalized at a private nonprofit hospital for three months for treatment of schizophrenia with neuroleptic mcdication and psychotherapy. The patient was discharged to his family to receive treatment in an outpatient clinic near his home but several miles from the hospital. Three months after discharge, the patient took several guns that had not been locked up in his parents’ home. Responding to auditory hallucinations, he shot at neighbors picnicking in their backyard. He killed several people and wounded many more before he was apprehended. At his criminal trial, he was found not guilty by reason of
1992
Vol.43
No.
2
gency room physician who had not hospitalized a patient when he visited the emergency room. Two days after being released to his mother and stepfather, the patient attacked his stepfather, who suffered a heart attack and severe brain damage during the beating and later sued the physician who released his stepson. The court found the lack ofa specific threat against the injured party unnecessary in reinstating the mcdical malpractice claim. Rather, the plaintiffs were permitted to pursue a malpractice claim largely because of the defendant’s failure to obtain relevant information or share it with the family. For example, the court found that “the constant physical proximity to [the patient] placed them in an obvious zone of danger.” As a result, the court agreed with psychiatric experts ftr the plaintiffs who stated that as a matter of prof#{232}ssional judgment, the defendant should have taken steps to lessen the potential danger to the family. These steps included not only warning the family of the patient’s potential for danger but also providing detailed instructions to follow should the patient’s condition deteriorate. In this case, the court found that professional judgment required sharing information with the family in a way that many clinicians might believe is barred by confidentiality rules. However, from a risk management perspective, clearly it is better to enlist the family as an ally-both as a source of information and as a caregiver. Ethical
issues
At the core of the presumption
that relationships should be is a concern that not confidentiality would hamper therapy and increase stigma for the patient. However, certain types of information relevant to treatment seem to lie outside these core concerns. For example, a family serving as caregiver already knows that the person has received mental health treatment. In addition, families may be given information about medication, its effects, evidence of deterioration or regression, and other related matherapeutic confidential maintaining
Hospital
and Community
Psychiatry
terial without compromising or revealing communications between patient and therapist. Therefore, it appears possible to reorient the relationship between therapist and family in a way that is consistent with the values underlying the ethical principle of confidentiality and that does not violate legal principles. Sharing information In proposing that confidentiality should be reexamined as it is applied to families, we do not suggest that details of conversations between clinician and patient should be revealed. Such details lie at the heart of the confidentiality principle. Nor do we suggest that other material not relevant to the families’ role as caregiver be divulged. Similarly, we do not suggest that families be involved regardless of patients’ choice. Obviously, patients have a choice in such matters, and generally their choice should be honored. The disclosures to and cxchanges with families that we suggest typically should be preceded by discussing with the patient the value of these communications and by obtaming the patient’s consent. This approach is consistent with that taken for any exchanges with third parties. Often the problem may not be whether the patient gives or withholds permission, but whether the therapist thinks to include the family acting as a caregiver in the discharge planning process. Certainly, when the patient withholds consent to share information, the therapist must work with the patient to understand the reasons for the refusal. If residing with the family is not the appropriate choice for the patient after discharge, the issue becomes a matter ofclinical judgment in deciding the best place for the patient to reside. When communications with the family occur, it is important that they be made in a clear, easily understandable manner. The family should have ample opportunity to ask questions of the treatment team and receive thorough answers. It is also important to record in the patient’s chart what was communicated to the family at the discharge planning
Hospital
and
Community
Psychiatry
Problems, Solutions, and Recommendations for a Public Policy. Edited by Talbott JA. Washington, DC, American
conference. As the first case presented above suggests, such records may be critical in a later legal proceeding.
Psychiatric
Association,
1978
3. PfeifferEJ,
Summary
Mostek M: Services for familiesofpeoplewith mental illness. Hospi-
A growing
literature (1-8) suggests that professionals are increasingly aware of the critical role families often play in the care ofa mentally ill relative and that families acting as caregivers often believe they have inadequate information to play that role. Further research, particularly into the barriers that may impede adequate communication between professionals and families, is warranted. We believe that such research will reveal that professional views about the principles and rules ofconfidentiality are a major barrier. It is our opinion that even without such research, the mental health professions should begin to seriously reexamine the application of confidentiality principles, particularly when a rigid application serves to isolate families from the treatment process and compromises the ability of families to function effectively as caregivers. Families should not be kept at arm’s length because ofa notion of confidentiality that far exceeds in application what is necessary to protect the values that it serves. Mental health professionals may maintain appropriate confidentiality, without disclosing private communications by their patients, and still meet a professional standard ofcare by communicating necessary and appropriate information to families who are acting as caregivers. Such communications are consistent with clinical goals, constitute good risk management, and may be made without violating ethical principles.
tal and Community 264, 1991
4.
Psychiatry42:
D, Sommer
Castaneda
family’s
R: Mental
attitudes
professionals’
262-
health
toward
the
role in care of the mentally
HospitalandCommunity 1195-1197,
40:
1989
5. FrancellCB,ConnV,Gray
DP: Families’
ofburden
perceptions mentally munity
ill.
Psychiatry
ofcare for chronic Hospital and Com39:1296-1300,
ilirelatives.
Psychiatry
1988
6. Bernheim health
KF, Switalski T: Mental staff and patient’s relatives: how
they vieweach rnunity
Psychiatry
7. Grella
other. Hospitaland Corn39:63-68, 1988
Grusky
0: Families
of the
seriously mentally ill and their satisfaction with services. Hospital and Cornmunity Psychiatry 40:831-835, 1989 8. Ascher-Svanum
H, Sobel
ofmentally ill adults: HospitalandCornmunity
843-845,
1’S: Caregivers
a women’s agenda. Psychiatry
40:
1989
9. Weiner B: Provider-patient relations: confidentialityandliability, inTheMentally Disabled and the Law. Edited by Brakel SJ, ParryJ, Weiner BA. Chicago, American Bar Foundation, 1985 10. Principles ofMedical Ethics, With Annotations chiatry.
Especially
Applicable
Washington,
Psychiatric
DC,
Association,
to PryAmerican
1989
1 1. Tarasoff
v Regents of the University of California, 13 Cal 3d 177; 529 p 2d 553 (1974)
12.
Tarasoff
v Regents
California, (1976) 1 3.
of the University
17 Cal 3d 425;
551
Beck JC (ed): The Potentially Patient and the TarasoffDecision
chiatric
Practice.
American
Psychiatric
of
p 2d 334
Violent in Pay-
Washington,
DC,
Association,
1985
14. Jed J: Social support for caretakers and psychiatric rehospitalization. Hospital and Community Psychiatry 40:12971299, 1989 15.
Hamman
ArizS8,775
v County of Maricopa, P2d 1122(1989)
161
Acknowledgment The authors thank Michael Perlin,J.D., professor of law at New York Law School, for his helpful suggestions.
References R, Vine P: Families as advocates for the mentally ill: a survey of characteristics and service needs. AmericanJour-
1. Grosser
nal of Orthopsychiatry,
2. Minkoff
tients,
February
K: A map
in press
of chronic
in The Chronic
1992
Mental
Vol. 43
mental
pa-
Patient:
No.2
139
References 1. Wampler
BE,
Grammatikifi.
Software,
San
Williams Francisco,
MP: Reference
1988
2. Ley P: Giving information to patients, in Social Psychology and Behavioral Medicine. Edited by Eiser JR. New York, Wiley, 1982 3. Powers RD: Emergency department patient literacy and the readability of patient-directed materials. Annals of Emer-
Medicine
17:124-126,
1988
4. Taub HA, Baker MT, SturrJF: Informed consent for research: effects of readability, patient age, and education. Journal of the American
Geriatrics
Society
of Medicine 7. Baker MR,
formed Veterans
JAMA
34:601-606,
1986
302:900-902, 1980 Taub HA: Readability
consent
forms
Administration 250:2646-2648,
of in-
for research in a medical center. 1983
MF, Folstein SE, McHugh PR: Mini-mental state: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research 12:189-198, 1975 9. Cruzan v Director, Missouri Department of Health, 497 US, 110 S Ct 2841, 111 L Ed 2d 224(1990)
8. Folstein
5. Taub HA, Kline GE, Baker elderly and informed consent:
level
vocabulary
Experimental
and
corrected
MT:
The
effects of feedback.
Aging
Research 7:1371981 6. Grundner TM: On the readability of surgical consent forms. New EnglandJournal 146,
Confidentiality and the Family as Caregiver John
P. Petrila, J.D., LL.M. Robert L. Sadoff, M.D.
Manyfamiiesprovide mentally ill relatives with a residence and other support. Althoughprofessionals increasingly acknowledge the importance ofthe supportive role families play, families continue to report that they receive too little information from professionals about the patient, particularly when the family acts as caregiver. The authors suggest that mental health professionals’ views about confidentiality may prevent them from providing information to families and urge professionals to rethink the issue ofconfidentiality and its application to families acting as caregivers. The authors conclude that certain information about a patient can-and should-be shared with families who are in a caregiver role without violating clinical, legal, or ethicalprinciples.
Mr.
is deputy commisand counsel of the New York State Office of Mental Health in Albany, 44 Holland Avenue, Albany, New York 12229. Dr. Sadoff is clinical professor ofpsychiatry at the University of Pennsylvania.
sioner
136
Petrila
Many persons with mental disability reside with or are discharged from hospitals to their families. One survey ofmembers ofNew York’s Alliance for the Mentally Ill found that 40 percent of the families surveyed had mentally ill relatives living with them (1). Minkoff estimated that nearly 65 percent of psychiatric patients were discharged from a hospital to their families (2). New and growing recognition of the importance of developing community supports has been accompanied by increased interest among professionals in providing support to families, principally because the family often functions as the “pnimary lifelong support system” (3). In a recent survey, mental health practitioners strongly agreed that families should be incorporated into treatment and given a supportive role (4). Ninety-eight percent of the respondents believed it was very impontant on moderately important for families to become educated about mental illness; 92 percent of the respondents thought it similarly important for families to oversee mcdication regimens ofpatients living at home. At the same time, recent surveys offamilies ofpeople labeled mentally ill suggest that many families believe they receive too little information
February
1992
Vol. 43
No.2
about their mentally ill relative and about the role the family might play in patient care-for example, in monitoring medication and its effects (5-8). Participants in one survey reported being very concerned that mental health professionals did not give them information about diagnoses, current treatments, availability of community resources, and effective strategies for managing the patient’s illness at home (5). Families particularly needed information about medications and side effects, they believed. They stated that it was often difficult to know whether changes in the patient’s condition resulted from reactions to medication or were additional symptoms of illness. Although attempts to ascertain the perceptions of families and consumers about professional services and attitudes are relatively new, data from families show that the amount of information provided by professionals is insufficient. In our opinion, families in the role ofcaregiver often receive insufficient information because practitioners believe that legal and ethical principles governing confidentiality prevent them from sharing information with families. In this paper, we suggest that because of the critical role families often play in sustaining mentally ill
Hospital
and Community
Psychiatry
rule of confidentiality The concept ofconfidentiality is fundamental to mental health practice. Both legal and professional ethical principles assume that material learned by the mental health professional during treatment will be kept in confidence. The law protects the confidentiality ofthe therapeutic relationship for at least two reasons. First, it embraces the assumption that trust is at the core ofsuccessfu.l treatment, and that trust can develop only if a patient is confident that revelations may be made to a therapist without fear ofdisclosure to others. Second, because of the issue of stigma, the law attempts to enable a person to hold in confidence even the fact that treatment has been sought. Such legal protections often take two forms. First, “privileged communications” statutes bar psychiatrists (and in many states psychologists) from testifying in court, except under specific circumstances, about statements made by a patient in therapy (9). Second, and more relevant, are statutes that protect the confidentiality of case records and, in many cases, the material in them. Ethical canons also include the principle ofconfidentiality. Section 4 ofthe Principles ofMedicalEthics, With Annotations Especially Applicable to Psychiatry states that “a physician shall respect the rights ofpatients, of colleagues, and ofother health professionals, and shall safeguard patient confidences within the constraints of the law” (10). An mappropriate breach of confidentiality may result in a lawsuit if damage occurs as a consequence of the breach. However, confidentiality is not absolute. It may be limited by legal mandate, for example, a court order or valid subpoena. There are other limitations when the protection of the welfare of the individual or com-
munity is at stake. For example, paychiatrists readily breach confidentiality when suicide is imminent and the patient requires involuntary hospitalization. In such a case, it seems obvious that avoiding harm to the patient should take precedence. In other cases, mental health professionals may struggle with apparent contradictions between the principle of confidentiality and legally sanctioned incursions into the privacy of patient records or into the confidential relationship between clinician and patient. A classic illustration of this dilemma is presented by the wellknown case ofTarasoffv. Regents of the University ofCaltfornia (1 1). In this case, the California Supreme Court held first that mental health clinicians had an obligation to warn third parties that a patient might present a danger to them. After rehearing the case to consider arguments by the American Psychiatric Association and the American Psychological Association that the ruling would force clinicians to violate their obligation to preserve confidentiality, the court was not persuaded and adopted the even broader holding that in some cases clinicians had an obligation to protect third parties (12). As Tarasoffand cases like it demonstrate, clinical practice, professional ethical norms, and legal standards are interrelated (1 3). By making the interests of third parties relevant in certain circumstances, these cases have forced clinicians to rethink traditional notions about confidentiality. It is in this light that we believe that the application of the principle of confidentiality to the relationship between clinicians and families acting in the role of caregiver must be reconsidered. Current practice, in which clinicians often neither seek information relevant to treatment or legal decisions they must make nor share appropriate information with families, may lead to difficulties for both parties. We believe that cxchanges like those outlined below may be made while preserving the values protected by the ethical and legal principles of confidentiality. In fact, as the two lawsuits discussed
Hospital
February
relatives in the community, confidentiality needs to be reexamined with the aim ofbroadening the type of information routinely made available to families acting as caregivers to a mentally ill relative. We believe that such a change can occur consistent with clinical, legal, and ethical principles.
The
and
Community
Psychiatry
1992
Vol. 43
No.2
below evolving dards quire mation others
suggest, it seems clear that professional and legal stannot only permit but may rethe exchange ofcertain inforwith family members and acting in the role of caretaker.
Clinical issues When a patient is discharged from a psychiatric hospital to another facility-for example, an outpatient clinic or a halfway house-the discharging psychiatrist routinely shares relevant treatment information with the clinic to which the patient is referred. We submit that the treating psychiatrist should also share certain information with the flimily acting as caregiver. From a clinical point ofview, families in the role of caregiver should know at a minimum the importance of ensuring that patients take their medication and what side effects might occur. Families also should be told what signs or symptoms to look for if the patient does not comply with treatment or take prescribed medication, or ifhis or her condition begins to deteriorate. Caregivers, including families, should know the special needs of patients who are living with them while receiving follow-up outpatient or day care treatment. Any perceived potential for dangerous behavior to self or others should be discussed. As an obvious example, ifa member ofa family acting as caregiver owns a gun, possible precautions about access should be discussed. Mental health professionals should also encourage family members and other caregivers to report to the treatment source-the treating psychiatrist, other mental health professional, or outpatient clinic-any changes in the patient that may be significant and relevant to future behavior. If hospitalization is proposed, a family member with whom the patient lives can provide invaluable information about the person’s symptoms, behavior, and history. Such information may be very important to the clinician in making treatment decisions and, in some cases, determining whether or not to pursue hospitalization. A clinician should actively enlist the family with whom the patient
137
lives as a source of information about compliance because the family may be the best source of information. Failure to use such a source of information would seem to unnecessarily complicate patient care. To discharge a patient to his or her family without providing the types ofinformation described above is unfair to the caregiver, who may be forced to make critical decisions with little professional guidance, including whether to hospitalize the patient or whether a symptom such as lack ofappetite, for example, is related to medication or to worsening depression. The lack of information can have clinical impact. Families who receive insufficient information may have more difficulty sustaining the patient in the community (14). To argue in favor ofproviding information to families is not to suggest that the role offamilies be “professionalized.” Rather, the argument suggests that families who provide residential support in particular can play a critical role in helping the patient live in the community and in assisting the treating clinician. However, these roles can be carried out only with adequate information.
The victims and their families subsequently sued the hospital from which the patient had been discharged three months earlier. They alleged that the hospital and the hospital’s psychiatrist were negligent in not telling the patient’s family that noncompliance with neuroleptic medication might lead to regression and possible violence. They also claimed that the hospital was negligent in not telling the family to lock up guns. The hospital successfully defended the malpractice claim by placing into evidence a note from the patient’s
record.
The
note,
by a social
insanity.
worker, described communications to the family during discharge planning about the importance of mcdication compliance, the role of the family in monitoring the medication, and the need to report to the hospital or the outpatient clinic if the patient was noncompliant. The note also described a warning to the family about the potential violence of the patient and advice to the family to lock up guns in the home. Although the family denied receiving such communications, the jury, presumably because of the record of the discharge planning process, ruled for the defendants, finding no deviation from a professional standard of care. This case does not imply that the family has a professional duty to its mentally ill member. It does suggest that the professional staffofthe hospital has an obligation to share necessary information with the family when the family is to act in the role of caregiver. The family may choose to accept or reject the information and recommendations given by the hospital. If the recommendations are rejected, the family obviously must assume the responsibility for the consequences. A second case involved malpractice litigation against clinicians who failed to inform themselves about material later judged important by the court and who failed to provide adequate information to a family after deciding not to hospitalize an individual. In this case, Hamman v. County of Maricopa (15), the Arizona Supreme Court reinstated a malpractice claim against a psychiatric emer-
138
February
Legal
issues
Failure to share certain information with families acting as caregivers may lead to allegations of malpractice, as is illustrated in the two cases presented below. The first case was never appealed and was not reported in the literature but was encountered by one ofthe authors (RLS). A 26-year-old man was hospitalized at a private nonprofit hospital for three months for treatment of schizophrenia with neuroleptic mcdication and psychotherapy. The patient was discharged to his family to receive treatment in an outpatient clinic near his home but several miles from the hospital. Three months after discharge, the patient took several guns that had not been locked up in his parents’ home. Responding to auditory hallucinations, he shot at neighbors picnicking in their backyard. He killed several people and wounded many more before he was apprehended. At his criminal trial, he was found not guilty by reason of
1992
Vol.43
No.
2
gency room physician who had not hospitalized a patient when he visited the emergency room. Two days after being released to his mother and stepfather, the patient attacked his stepfather, who suffered a heart attack and severe brain damage during the beating and later sued the physician who released his stepson. The court found the lack ofa specific threat against the injured party unnecessary in reinstating the mcdical malpractice claim. Rather, the plaintiffs were permitted to pursue a malpractice claim largely because of the defendant’s failure to obtain relevant information or share it with the family. For example, the court found that “the constant physical proximity to [the patient] placed them in an obvious zone of danger.” As a result, the court agreed with psychiatric experts ftr the plaintiffs who stated that as a matter of prof#{232}ssional judgment, the defendant should have taken steps to lessen the potential danger to the family. These steps included not only warning the family of the patient’s potential for danger but also providing detailed instructions to follow should the patient’s condition deteriorate. In this case, the court found that professional judgment required sharing information with the family in a way that many clinicians might believe is barred by confidentiality rules. However, from a risk management perspective, clearly it is better to enlist the family as an ally-both as a source of information and as a caregiver. Ethical
issues
At the core of the presumption
that relationships should be is a concern that not confidentiality would hamper therapy and increase stigma for the patient. However, certain types of information relevant to treatment seem to lie outside these core concerns. For example, a family serving as caregiver already knows that the person has received mental health treatment. In addition, families may be given information about medication, its effects, evidence of deterioration or regression, and other related matherapeutic confidential maintaining
Hospital
and Community
Psychiatry
terial without compromising or revealing communications between patient and therapist. Therefore, it appears possible to reorient the relationship between therapist and family in a way that is consistent with the values underlying the ethical principle of confidentiality and that does not violate legal principles. Sharing information In proposing that confidentiality should be reexamined as it is applied to families, we do not suggest that details of conversations between clinician and patient should be revealed. Such details lie at the heart of the confidentiality principle. Nor do we suggest that other material not relevant to the families’ role as caregiver be divulged. Similarly, we do not suggest that families be involved regardless of patients’ choice. Obviously, patients have a choice in such matters, and generally their choice should be honored. The disclosures to and cxchanges with families that we suggest typically should be preceded by discussing with the patient the value of these communications and by obtaming the patient’s consent. This approach is consistent with that taken for any exchanges with third parties. Often the problem may not be whether the patient gives or withholds permission, but whether the therapist thinks to include the family acting as a caregiver in the discharge planning process. Certainly, when the patient withholds consent to share information, the therapist must work with the patient to understand the reasons for the refusal. If residing with the family is not the appropriate choice for the patient after discharge, the issue becomes a matter ofclinical judgment in deciding the best place for the patient to reside. When communications with the family occur, it is important that they be made in a clear, easily understandable manner. The family should have ample opportunity to ask questions of the treatment team and receive thorough answers. It is also important to record in the patient’s chart what was communicated to the family at the discharge planning
Hospital
and
Community
Psychiatry
Problems, Solutions, and Recommendations for a Public Policy. Edited by Talbott JA. Washington, DC, American
conference. As the first case presented above suggests, such records may be critical in a later legal proceeding.
Psychiatric
Association,
1978
3. PfeifferEJ,
Summary
Mostek M: Services for familiesofpeoplewith mental illness. Hospi-
A growing
literature (1-8) suggests that professionals are increasingly aware of the critical role families often play in the care ofa mentally ill relative and that families acting as caregivers often believe they have inadequate information to play that role. Further research, particularly into the barriers that may impede adequate communication between professionals and families, is warranted. We believe that such research will reveal that professional views about the principles and rules ofconfidentiality are a major barrier. It is our opinion that even without such research, the mental health professions should begin to seriously reexamine the application of confidentiality principles, particularly when a rigid application serves to isolate families from the treatment process and compromises the ability of families to function effectively as caregivers. Families should not be kept at arm’s length because ofa notion of confidentiality that far exceeds in application what is necessary to protect the values that it serves. Mental health professionals may maintain appropriate confidentiality, without disclosing private communications by their patients, and still meet a professional standard ofcare by communicating necessary and appropriate information to families who are acting as caregivers. Such communications are consistent with clinical goals, constitute good risk management, and may be made without violating ethical principles.
tal and Community 264, 1991
4.
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40:
1989
5. FrancellCB,ConnV,Gray
DP: Families’
ofburden
perceptions mentally munity
ill.
Psychiatry
ofcare for chronic Hospital and Com39:1296-1300,
ilirelatives.
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KF, Switalski T: Mental staff and patient’s relatives: how
they vieweach rnunity
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7. Grella
other. Hospitaland Corn39:63-68, 1988
Grusky
0: Families
of the
seriously mentally ill and their satisfaction with services. Hospital and Cornmunity Psychiatry 40:831-835, 1989 8. Ascher-Svanum
H, Sobel
ofmentally ill adults: HospitalandCornmunity
843-845,
1’S: Caregivers
a women’s agenda. Psychiatry
40:
1989
9. Weiner B: Provider-patient relations: confidentialityandliability, inTheMentally Disabled and the Law. Edited by Brakel SJ, ParryJ, Weiner BA. Chicago, American Bar Foundation, 1985 10. Principles ofMedical Ethics, With Annotations chiatry.
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to PryAmerican
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1 1. Tarasoff
v Regents of the University of California, 13 Cal 3d 177; 529 p 2d 553 (1974)
12.
Tarasoff
v Regents
California, (1976) 1 3.
of the University
17 Cal 3d 425;
551
Beck JC (ed): The Potentially Patient and the TarasoffDecision
chiatric
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Acknowledgment The authors thank Michael Perlin,J.D., professor of law at New York Law School, for his helpful suggestions.
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