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Position on Confidentiality

(Our Position On Primary Care Giver Access to Patient Records)

[Position] [Background] [Definition of Terms]

Persons responsible for providing primary care or shelter for an adult person with serious mental illness have a right to certain basic information about the client. That information must include: diagnosis; behavioral expectations; acknowledgement of admission to or discharge from a treatment facility; the name of the medication(s) prescribed; possible side effects of prescribed medication(s); aftercare plans for persons who have been hospitalized; and information about community education/support opportunities for the care giver.

Service providers must be required to ask clients to sign a care giver release of information consent form. If a client refuses to sign a release of information consent form, a primary care giver can submit a written request to a mental health professional providing care and treatment to the client. The client must be informed of the written request. A process should be established so that the patient can appeal approval, and a primary care giver can appeal denial of this request.

The above information is based on a law enacted in Rhode Island in 1993 to help primary care givers work more effectively with persons with serious mental illnesses.

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Background

NAMI Maryland advocates on behalf of the nearly 134,000 Maryland families whose relatives suffer from serious mental illness (schizophrenia, bi-polar illness, chronic depression). NAMI believes that services for the mentally ill are fragmented under the current system and that the family provides a vital link between the client, and these uncoordinated services by serving as the constant in the continuum of care. In a more perfect world, with computer tracking systems and service providers that are fully aware of prior treatment received by the client, family intervention might not be as necessary to obtain proper services.

Since the deinstitutionalization movement of the 1960's, families have assumed an increasing role in caring for persons with chronic mental illness. Recent research data demonstrates the effectiveness of treatment approaches that include the family as part of the treatment, and supports the concept that families are helpful to the recovery of the ill family member. Families are unduly burdened when their relative refuses treatment for their illness. Families may be the first persons to recognize changes in mood and personality, especially if the relative is living with their family. When persons with a mental illness do not give permission to service providers, confidentiality laws prevent service providers from exchanging helpful information with care providers. This confidentiality issue impedes the family's ability to best address their relative's needs. If the family does not have basic information, such as their relative's service provider (psychiatrist, social worker, case manager, treatment team, etc.) then they cannot make initial contact for help, and they must watch their relative deteriorate until there is outside intervention from police, neighbor's complaints, employers, etc.

Community care for many individuals occurs in the family home with relatives assuming the role of care giver. Many times, the client does not reside in the family home, yet the family is still involved in the well being of the client in the community, such as when the family is payee for their relative receiving entitlement benefits. Families often take a relative into their homes without a clear understanding of the dynamics of the client's illness and without the benefit of information necessary for the proper care of the client. In some cases this may cause a danger to the client or other members of the household.

Problems of not having basic information about mental illnesses are:

• unrealistic expectations by family members/care givers as to the client's ability to perform tasks put additional stress on client, leading to an exacerbation of symptoms and possible relapse;
• lack of family support/advocacy for their relative and aggravation of already strained family relations;
• the potential for violence toward client or family, especially if families have not developed sound coping skills based on accurate information, i.e., not having a clear understanding of what to expect from the client based on diagnosis.

Benefits of having basic information about mental illness are:

• early interventions to avoid hospitalization, reducing cost of care;
• strong community support for client;
• family knowledge and observational feedback to treatment provider(s);
• increased knowledge encourages family to support treatment modalities and medication regimens, and to report changes and concerns to care providers;

By allowing certain basic information to be shared with family members/primary care givers, the client will enjoy a continuum of care heretofore not provided under the current system. When a client is transitioned from an in-patient unit or even from one treating team to another, or if that person changes psychiatrists, if its has been established that this family, friend or care giver has been involved in the person's care, there must be an exchange of basic information to assist that client in the community. That information must include the name of the treating person or facility responsible for delivering care to the client, diagnosis, medications and possible side effects, and information about where to obtain more information/support for the care provider.

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Term Definitions

Primary care giver/provider refers to that person or person directly involved in the care of an individual. That person can be a blood relative, spouse, friend, board and care provider, or anyone involved in the day to day care and or welfare of the client.

Service provider refers to doctors, nurses, social workers, case managers, or any other professional or paraprofessional responsible for delivering care to the client.

Client refers to the individual receiving mental health services.

Diagnosis refers to the term used to describe the illness, as based on the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV).

Behavioral expectation refers to the behaviors that care givers can expect clients to exhibit, such as restlessness, shortened attention span, inability to cope in stressful/stimulating situations, etc. It can also include information such as caution regarding impaired judgement decisions.

After care plan refers to how the client will receive services in the community, i.e. where the individual will go for medications, how he will pay for them, where he/she will live, and who will provide clinical services.

 

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