Common Ethical Issues

Ethical issuesIssues 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.

HIPAA
  • The Health Information Portability Authorization Act (HIPAA) defines the standards for protecting personal health information (PHI) when it is transmitted.
  • Although HIPAA rules govern only a very limited set of situations related to sharing health information, confidentiality of clients' and patients' information is of utmost importance. Thus, 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.
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 or a state uses a restrictive definition of marriage.
  • 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 may 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?

For information on how to provide effective services in these and other challenging situations related to diminished capacity, see the outstanding American Psychological Association and American Bar Association handbook, Assessment of older adults with diminished capacity: A handbook for psychologists (PDF, 53KB).

For information resources related to financial exploitation, the Investor Protection Trust has resources for providers and caregivers to detect elder investment fraud and financial exploitation as part of its Elder Investment Fraud and Financial Exploitation Prevention Program .

See also the Alzheimer's Association Respect for Autonomy Fact Sheet

Reporting Elder Abuse
Mandatory Reporting for Elder Abuse

Psychologists are in a unique position to detect, assess and intervene in suspected cases of elder abuse and neglect occurring in the context of family caregiving. Consider the following examples:

  • Daughter of a 68-year old widowed gentleman discovers a bank statement showing $20,000 transfer of funds to girlfriend's account. Daughter is concerned about her father's well-being; she described his 5-year relationship with the girlfriend as “tumultuous” and recently removed him from his home following an argument involving the girlfriend throwing things and yelling at her father.
  • A family caregiver says that her mother received a threatening letter from her long-time friend and handyman who states he will discontinue helping with home repair and transportation unless she pays him more money.

Within the past decade, most states have passed and implemented Elder Abuse Mandatory Reporting laws that define reporting processes for health care, mental health and other professionals working with older adults. Although definitions of abuse and the specific disciplines affected by mandatory reporting vary per state, the forms of abuse generally include:

  • Physical abuse.
  • Sexual abuse.
  • Psychological or emotional abuse.
  • Caregiver neglect.
  • Self-neglect.
  • Financial abuse and exploitation.

Important considerations for the psychologist:

  • Are you a mandated reporter in your state?
  • What are the reporting processes, as defined by your county and state that include law enforcement and adult protective services?
  • What are the unique challenges for intervention?
  • What more do you need to know?
  • What would get in the way of that process?
  • Who are your community partners and programs that offer aid and assistance to older victims and their families?

For more information about elder abuse, mandatory reporting and adult protective services: