Journal of Gerontological Nursing

CARE OF THE DEMENTED CLIENT

Kay Weiler, MA, JD, RN; Kathleen C Buckwalter, PhD, RN

Abstract

Gerontological nurses can be an invaluable and pivotal resource to these families through education, support, and case management

Abstract

Gerontological nurses can be an invaluable and pivotal resource to these families through education, support, and case management

The care of a client with a dementing illness is difficult, challenging, and complex and should involve a multidisciplinary approach that considers the concerns of the family and the patient. Although resources are being developed to address the complex needs of demented clients, the burden of psychological, financial, and physical care is still largely assumed by the family.1 Gerontological nurses can be an invaluable and pivotal resource to these families through education, support, and case management.2 Often gerontological nurses become involved with a demented client and family at a crisis point, when the family is confused, stressed, or grieving, and has been forced into a decision-making process.3 Consequently, nurses should help families to meet the challenging needs of the dementia victim by developing care strategies that promote comfort and functional behavior for both the demented client and his/her family.

Recent psychiatric and gerontologicai literature has focused primarily on the etiology and progression of dementia,4 on behavioral and environmental strategies,5 ·6 and on caregi ver stress . 7'9 Legal and financial consequences of dementing illness for the family have been largely ignored. Nevertheless, gerontological nurses are frequently called upon to assist families in seeking the information which is needed to make legal and financial decisions prompted by this long-term, inexorably progressive illness.10 However, gerontological nurses are limited in their scope of assistance for dementia victims and their families, unless they have a basic understanding of the legal interventions for health care and financial planning for these incapacitated individuals. This article highlights two legal alternatives frequently used for the benefit of the client who has a dementing illness: conservatorship and guardianship.

Mrs. O was a 65-year-old widowed Caucasian female of Swedish extraction who had resided on a farm in Iowa with her daughter Elisabeth, son-in-law John, and their two teenage children for the past 10 years. She had a son, Carl, living in New York.

Mrs. O had been diagnosed as having hypertension, glaucoma, and Parkinson's disease. About six months prior to presenting at the gerontological unit, Mrs. O began to experience a personality change including paranoid tendencies, delusions, and wandering. Elisabeth had her mother hospitalized for psychiatric and neurological evaluation at which time Mrs. O was diagnosed as having dementia, mixed type, secondary to Parkinson's disease with a multiinfarct component stemming from atherosclerotic changes.

Table

TABLE ILEGAL METHODS FOR A COMPETENT PERSON TO PLAN FOR FUTURE DECISION-MAKING TABLE 2

TABLE I

LEGAL METHODS FOR A COMPETENT PERSON TO PLAN FOR FUTURE DECISION-MAKING TABLE 2

Nursing Assessment of the Legal and Financial Concerns

The gerontological nurse assigned to Mrs. O developed a family-centered treatment plan, explored after-care options, and noted the family's increasing concern with the amount of time and income which were required to provide Mrs. O with continual care. Although Elisabeth and her husband John acknowledged the need to make decisions regarding Mrs. O's personal care, they expressed fear of angering Elisabeth's brother, Carl, and were concerned that they would be devastated both emotionally and financially by caring for Mrs. O at home.

The gerontological nurse specifically assessed environmental modifications, behavioral management techniques, caregiving strategies, and opportunities for respite. She also addressed financial and legal concerns raised by the family which included: 1) Elisabeth did not want to institutionalize her mother unless it was absolutely essential; 2) no health-care emergency existed, however no organized mechanism for making future health-care decisions was in place; 3) Elisabeth wanted to continue with her job but that meant working fewer hours so that she could supplement the care of home health aides and respite workers; 4) although Elisabeth and her husband had some financial resources, Mrs. O's care would significantly diminish those reserves; 5) arguments about financial and caregiving responsibilities for Mrs. O had estranged Elisabeth and her brother, Carl; 6) arguments about financial responsibilities had created ongoing tension between Elisabeth and her husband, John; and 7) Elisabeth and John could identify the need for financial assistance but could not progress beyond this point. They asked the gerontological nurse to assist them in identifying possible options for coping with these serious concerns.

Nursing Intervention - Predischarge Conference Focusing on Legal, Financial Issues

The concerns expressed by Mrs. O's family are common to many situations requiring a long-term care commitment. To address these concerns in a timely manner, the gerontological nurse convened a predischarge family conference. Prior to the conference, the nurse suggested that an attorney might be able to assist the family. With the family's consent, the nurse contacted the County Bar Association and was referred to a local attorney who specialized in family law and who met with the family at the predischarge conference. The gerontological nurse also arranged for a conference telephone call so that Carl could participate in the discussion and decision-making process.

At this predischarge conference, the gerontological nurse described the impact which the dementia had had upon Mrs. O's ability to make simple decisions. Elisabeth and John explained that as Mrs. O's dementia progressed, their financial base would need to be supplemented by her assets. These assets included title to property, bank accounts, and stocks. Because Mrs. O owned these financial assets, she had the sole power to transfer them. However, although Mrs. O needed the benefits of her assets, she did not have the mental capacity to use them.

Table

CONTRASTS AND SIMILARITIES BETWEEN GUARDIANSHIP AND CONSERVATORSHIP16

CONTRASTS AND SIMILARITIES BETWEEN GUARDIANSHIP AND CONSERVATORSHIP16

Legal Considerations and Options

Prior to the onset of dementia, Mrs. O had not established a trust,11 power of attorney,12 or a standby conservatorship13 (see Table 1) for the allocation of her financial assets. Therefore, during the conference, the attorney outlined the basic aspects of a conservatorship and a guardianship for the family. After this discussion, the family decided to proceed and retained the attorney to assist them in obtaining a conservatorship and guardianship of Mrs. O with Elisabeth as the concurrent guardian and conservator.

Conservatorship

A conservatorship is a court-authorized relationship in which the conservator assumes responsibility for the custody and control of the property of another person, the ward. l4 The ward is not considered capable of administering his or her own financial affairs because of a physical, mental, or other incapacity.15

The specific criteria which allow for the creation of a conservatorship and the interpretation of those criteria are controlled by each state's enacted statutes and the state court's interpretations. However, the Uniform Probate Code provides some model guidelines for the enactment and supervision of a guardianship and a conservatorship16 (see Table 2).

The appointment of a conservator divides the ownership of the property into separate rights which are allocated to different people. After the appointment of the conservator, Mrs. O retained the title to her property. She retained the right to any profit from the property and she continued to have her assets diminished by any losses incurred from the ownership of the property.

However, as a result of the conservatorship, she lost the rights to convey, dispose, or encumber her property, and to exclude others from interfering with her property. As the conservator, Elisabeth gained the legal power to transfer, lease, and sell Mrs. O's property. In practical terms, this meant that Elisabeth could use her mother's assets to pay for Mrs. O's personal and healthcare expenses.

It is important to note that as the conservator, Elisabeth had assumed the legal fiduciary responsibility to provide protection for Mrs. O's property and to conserve the property for her mother's benefit. Elisabeth was not required to make the "right" or "best" decisions regarding the disposition of her mother's property.

The standards to which a conservator is held vary among the different states. Some states require the conservator to act with the prudence which one would demonstrate when handling the affairs of another person.17 The standard which Elisabeth was expected to meet was that she must handle her mother's property with such diligence as a reasonably prudent person would ordinarily employ in the conduct of his or her own affairs.18

The duration of the conservatorship was expected to be for the rest of Mrs. O's life. The conservatorship could be terminated by court removal of Elisabeth for breach of duty, her incapacity, on her death. The conservatorship could also be terminated in the unlikely event that Mrs. O regained her capacity.

Gerontological nurses may not realize these details of a conservatorship or may overlook them in recommending that the legal system assist the family in gaining access to the demented patient's financial resources. However, it is the technical aspects of the conservatorship which protect a ward from the unnecessary, illegal, and unethical activities of a conservator. Therefore, if the ward regains capacity or the conservator becomes incapacitated, neglects the ward's property, or disperses the property for a purpose other than the benefit of the ward, the court has the authority to halt a proposed transaction and appoint a new conservator. 19 A Conservatorship is not A Guardianship

The appointment of a conservator does not mean that court has determined that the ward is insane, of unsound mind, or mentally ill.20 The appointment of the conservator did not affect Mrs. O's legal ability to make personal health-care decisions and the family still needed a way to make health-care decisions and give an informed consent on behalf of Mrs. O. Unfortunately, Mrs. O had not drafted a durable power of attorney,21 a standby guardianship,22 or a living will23 (see Table 1) which would have indicated her wishes for future health-care decisions. Therefore, she retained the legal right to make her own health-care decisions; however, she was no longer functionally capable of making the required decisions.

Over the past several months, when a health-care question had arisen, Mrs. O's family and her health-care providers had considered her previous wishes for health care in deciding how to meet her current needs. The physician, gerontological nurse, and family members discussed her medical problem, reviewed the alternatives, and required Elisabeth and Carl to choose a course which was in Mrs. O's best interests consistent with the course which they believed Mrs. O would have chosen for herself.

Mrs. O's family did not want to continue to rely upon this informal method of making health-care decisions. Therefore, the attorney suggested that they plan for future health-care needs by seeking an involuntary guardianship of Mrs. O in conjunction with the conservatorship hearing.

Involuntary Guardianship

An involuntary guardianship is a court-authorized relationship in which the proposed guardian is granted the right and responsibility to make extensive personal decisions for the ward.24 In many states, in order for an adult to qualify as needing a guardian, he/she must lack the understanding or capacity to make, communicate, or carry out responsible decisions concerning his/ her own person.25 Each state independently defines and interprets this incapacity; however, it generally means that the person demonstrates a lack of ability to make responsible decisions about his own personal care.

The judicial system cannot assume that all guardianship proceedings are initiated with beneficent intentions,26 as was the case with Mrs . O. Her right to self-determination was based upon common law principles27 and the constitutional right of privacy.28 Legal withdrawal of an individual's right to make personal decisions is only intended for situations in which it can be shown that the individual is no longer capable of understanding the potential options and consequences of various personal-care decisions.

To protect the interests of the proposed ward during the guardianship proceeding, most states provide him/ her with a legal representative. The legal representative meets with the proposed ward, evaluates his/her wishes and determines if the guardianship would be in that person's best interests. The legal representative is appointed to protect a proposed ward from inappropriate restrictions upon individual freedom and serves only for the duration of the guardianship proceeding.

Mrs. O's family believed that they were representing her best interests and did not understand why another attorney was needed to represent Mrs. O at the guardianship and conservatorship heanng. The procedure and expense seemed redundant to them. However, this system was devised to protect wards from the unnecessary interference of a proposed guardian. Under a guardianship, the guardian has extensive authority to determine the ward's place of residence, provide consent to medical care, and, with court approval, place the ward in a nursing home or mental institution. The guardian also has the power to withhold or withdraw life-sustaining measures for the ward and agree to allow the ward to participate in medical or psychosocial research activities (see Table 2).

Comparison of Guardianship and Conservatorship

The roles of the conservator and the guardian may be assumed by the same individual. However, as Table 2 outlines, the responsibilities of the two roles are distinctly different. Without court authority, the guardian cannot make financial transactions and the conservator cannot make personal-care decisions. Therefore, if a family member sought to serve in only one capacity, the state's definition of die boundaries of that role should be clearly identified and discussed.

Discussion

Generally, the patient and family will not have made any legal provisions specifically for how decisions will be made when the patient is no longer able to make informed and competent choices. Ideally, each individual would specify personal and financial choices in a legal form (as with a living will or a trust) before becoming functionally incompetent as a result of dementia. However, this seldom occurs. Instead, the family and health-care providers usually face difficult decisions in order to respond to the needs of the patient without violating the patient's legal right to self-determination.

The conservatorship and guardianship proceedings may be time and energy consuming, financially expensive, and procedurally complex. However, if the family is able and willing to seek a legal solution to the financial and health-care decisions which must be made, then these problems can be resolved even if the patient has not already specified his/her desires. If the patient never requires an informed consent for health care or if the family does not need access to the patient's financial assets, then the family probably will not perceive a need for an involuntary guardianship or conservatorship. However, it is unlikely that the patient will maintain a stable health status and that the family will have adequate financial resources.

Thus, the legal options suggested in this article may be used to avert prolonged caregiver stress and financial hardship.

Conclusion

The appointment of the conservatorship and guardianship granted Elisabeth legal authority to make future financial and health-care decisions for her mother. Gerontological nurses on inpatient units and in the community should consider these legal and financial concerns when they assess family burdens and stresses. The gerontologicai nurse, in this case, was willing to work with the family, provide psychological support, facilitate access to legal counseling, and assist the family in seeking appropriate financial planning for her patient.

She gained an understanding of the basic principles of conservatorship and guardianship as well as the need for legal counsel and thus, she was able to assist the family in their long-range planning for the patient. Furthermore, she was able to avert future disagreements and economic devastation for family members. When the time came to make difficult decisions regarding placement and long-term care, the decision-making mechanism had been established.

References

  • 1. Brody EM: Parent care as a normative stress. Gerontologist 1985; 25(l):19-29.
  • 2. Standards and Scope of Gerontological Nursing Practice. Kansas City, Standard VI, American Nurses' Association, 1987.
  • 3. Hirst SP, Metcalf BJ: Learning Needs of Caregivers. J Gerontol Nurs 1986; 12(4):24-28.
  • 4. Cummings JL, Benson DF: Dementia of the Alzheimer type: An inventory of diagnostic clinical features. J Am Geriatr Soc 1986; 34(1): 12-19.
  • 5. Peppard NR: Special nursing home units for residents with primary degenerative dementia: Aizheimer's disease. Journal of Gerontological Social Work 1986; 9(2):5-18.
  • 6. Mace NL, Rabins PV: The 36-Hour Day. Baltimore, The Johns Hopkins University Press, 1981.
  • 7. Zarit SH, Todd PA, Zarit JM: Subjective burden of husbands and wives as caregivers: A longitudinal study. The Gerontologist 1986; 26(3):260-266.
  • 8. Rabins PV, Mace NL, Lucas MJ: The impact of dementia on the family. JAMA 1982; 248(3):333-335.
  • 9. Stone R, Cafferata GL, Sang! J: Caregivers of the Frail Elderly: A National Profile Washington, DC, US Department of Health and Human Services, National Center for Health Services Research and Health Care Technology, 1986.
  • 10. Thompson J, Pender KK, Hoffman-Schmitt J: Retaining rights of impaired elderly. J Gerontol Nurs 1987; 13(3):20-25.
  • 11. Restatement (Second) of Trusts § 2,3 (1959).
  • 12. Restatement (Second) of Agency § 1,7,20 (1958).
  • 13. Iowa Code §633.560, 633.591(1986).
  • 14. Uniform Probate Code § 1-201(6) and 5-103(22) 8 ULA 31 (1983).
  • 15. Uniform Probate Code § 5-401(c) 8 ULA 478 (1983).
  • 16. Uniform Probate Code 8 ULA (1983).
  • 17. Uniform Probate Code § 5-416 8 ULA 492 (1983).
  • 18. Iowa Code §633.123 (1986).
  • 19. Uniform Probate Code § 5-414 8 ULA 491 (1983).
  • 20. Regan JJ: Tax, Estate, and Financial Planning for the Elderly, New York, Matthew Bender, Times Mirror Books, 1986, § 16.02.
  • 21 . Uniform Durable Power of Attorney Act § 1 8a ULA 278, 1983.
  • 22. Iowa Code §633.560 (1986).
  • 23. Uniform Rights of the Terminally III Act §1 9B ULA 611 1987.
  • 24. Iowa Code § 633.636 (1986).
  • 25. Regan JJ: Tax. Estate, and Financial Planning for ihe Elderly, New York, Matthew Bender. Tiroes Minor Books. 1986, § 16.02, Comment section.
  • 26. In Re Guardianship of Brown. 436 NE 2d 877 (1982). 27 . Schloendorffv Society cfNew York Hospital, 211 NY 125, 105 NE 92, (1914);/n/te Starar, 52 NY 2d 363, 438 NYS 2d 266, 420 NE 2d 64 (1981).
  • 28. Bariling v Olendole Advent ist Medical Center. 163 CaI App 3d 186, 209 CaI Rptr 220 (1984); Griswold v Connecticut 381 US 479, (1965); Superintendent of Belchertown School v Saikewicz 370 NE 2d 417 (1977); In Re Quintan 355 A.2d 647 (1976), 70 NJ 10.

TABLE I

LEGAL METHODS FOR A COMPETENT PERSON TO PLAN FOR FUTURE DECISION-MAKING TABLE 2

CONTRASTS AND SIMILARITIES BETWEEN GUARDIANSHIP AND CONSERVATORSHIP16

10.3928/0098-9134-19880701-07

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