Issues of privacy, informed consent, access to hospitalized or residential care patients, access to medical records or inclusion in conferences with healthcare staff, competency and decision making about care, especially end-of-life care may lead to complex, ethical conflicts or concerns when treating family caregivers. This section offers information about legal and ethical issues and some approaches to supporting the caregiver dealing with such issues.
The Health Information Portability Authorization Act (HIPAA) defines the standards for protecting personal health information (PHI).
In their efforts to protect privacy, healthcare providers are careful about how family members can access information. They may consequently be cautious or even close-mouthed if family members ask about a loved one’s health conditions.
There are two common strategies that help family members communicate with their loved one’s healthcare providers within the parameters of HIPAA:
- Ask the care recipient to provide written consent to share information with particular providers.
- Ask family members to mail or fax written statements of their psychological or medical concerns about the care-recipient to the provider. HIPAA may set limits on the information that the provider can share but doesn’t preclude the provider from receiving information from others, regardless of whether the client has granted consent or not.
Legal Recognition Barriers
Lesbian, gay, bisexual or transgendered (LGBT) individuals often face barriers to participating fully when their partner or spouse is hospitalized or in residential care. Problems may arise in:
Visitation privileges if restricted to next-of-kin or “family”, as defined by the institution
Discussions with doctors or other medical staff
Participation in care coordination discussions restricted to “family”
End-of-life or other critical decision-making about the patient’s care
Claiming the body of a deceased partner or spouse
While same-sex marriage is legal in some states and civil unions in others in the U.S., recognition of the rights of partners or same-sex spouses within hospital and other healthcare systems are not always consistent with the laws of the state. Also, confusion about the rights of those married in a state which recognizes same-sex marriage or civil unions but currently residing in a state which does not recognize those relationships may form further barriers to allowing LGBT caregivers the rights and privileges accorded to heterosexual spouses.
Similarly, unmarried heterosexual couples, caregivers who are friends or more distant relatives who have not been previously designated as next of kin or given health care proxy rights many encounter similar restrictions, often despite years of having served as a primary caregiver for the patient.
Psychologists who are cognizant of the enormous strain such restrictions can impose at critical times of severe or life-threatening illness can help caregivers by understanding their legal status or finding administrators or hospital lawyers who do, and by advocating for the importance of mutual social support to patient and caregiver alike. They can provide important support for a restricted caregiver in such a circumstance.
Psychologists may also advocate for policy changes at hospitals or other institutions and at the local, state, or national levels to recognize the needs of all caregivers and care recipients.
Diminished Capacity and Proxy Consent
Psychologists may be asked to provide services to a person who has apparent diminished capacity but who is still acting as his or her own legal decision-maker. Consider the following examples:
A neuropsychologist has been asked to evaluate a man for decision-making capacity at the request of the facility where he resides. Whose consent is needed--the person being tested who is technically his own legal decision-maker or the family caregiver who has been overseeing all healthcare and housing decisions? (Probably both should be engaged in the consent process.)
A family caregiver recognizes that her mother is dangerously self-neglectful in her present living circumstances. But no advanced directive is available to empower the caregiver to move her mother against her will. How should the caregiver be advised?
Issues of privacy, informed consent, access to hospitalized or residential care patients, access to medical records or inclusion in conferences with healthcare staff, competency and decision making about care, especially end-of-life care may lead to complex, ethical conflicts or concerns when treating family caregivers. This section offers information about legal and ethical issues and some approaches to supporting the caregiver dealing with such issues.