Maintaining self-control and making personal decisions are important to all persons. Being able to decide where to live, who to live with, daily activities, choosing a doctor, money management, religious preferences, and whether to be buried or cremated are basic human desires and rights.
Everyone wants to be able to make their own life choices. But what about the persons who have been declared incapacitated by the court system and now have a guardian? Do they have a voice in the personal decision-making process or should all decisions be made for them?
Family Service of Roanoke Valley serves as the guardian for up to 80 persons who depend on our case managers to make all their life decisions.
We work as a Guardianship Case Managers and are writing to share how we work with clients—many who are older adults and all who have intellectual, developmental or emotional disabilities and/or co-occurring disorders. We help make sure their rights are respected and their dignity is maintained.
One might argue that if a person has been declared incompetent or incapacitated then they no longer possess the capability to make any decisions. A guardian or conservator has been given the authority to serve as the substitute decision maker. This is a very restrictive measure which can infringe upon a person’s human rights.
However, in accordance with the Virginia Handbook for Guardians and Conservators, the guardian’s role is as follows: “to the extent feasible, encourage the incapacitated person to participate in decisions, to act on his own behalf, and to develop or regain the capacity to manage personal affairs. A guardian, in making decisions, shall consider the expressed desires and personal values of the incapacitated person to the extent known and shall otherwise act in the person’s best interest and exercise reasonable care, diligence, and prudence.”
In other words, it is the responsibility of the guardian (like me) to support the person with the decision-making process taking into consideration the person’s wants and desires.
It can be a challenge to include a person with an Intellectual Disability or Mental Illness in the decision-making process.
Depending on the skill level, he or she may not be able to verbally communicate their wants and needs. In such cases, it is important to try to determine their wishes by their actions or non-verbal behaviors.
We try to gather clear and accurate information on family history, particularly with religious practices and culture. One of the tools developed by the Department for Aging and Rehabilitative Services (DARS) to gather information is the Values History Form.
This is a form used by the Public Guardianship Program for the purpose of finding out the person’s unique preferences such as their preferred living environment, feelings about general health and attitude towards the medical professionals, thoughts on self-autonomy and independence, relationships, beliefs and overall attitude towards life, illness and death.
All persons are generally much happier, with a more positive attitude and behavior, if they can have some type of control over their life. And yes, this includes the persons who have been provided court-appointed guardians, but also older adults in a variety of situations.
The American Psychological Association says research finds that many patients are dying following prolonged hospitalization or intensive care in which their final days involve unrelieved pain and their preferences concerning life-sustaining treatments are not fully discussed, documented or followed.
Families can support their loved ones by involved psychologists at several critical points in an older adult’s life:
Before illness strikes;
After illness is diagnosed and treatments begin;
During advanced illness and the dying process; and
After the death of the patient, with bereaved survivors.
Everyone wants to be treated with dignity, respect and to know what they value most will be upheld. We are grateful to have the honor, as Guardians, to ensure dignity and respect for everyone we work with.
It may be one of the most difficult, but rewarding parts of our job—knowing we’ve done all we can to ensure a person’s wishes are known and followed, even if they aren’t able to verbally communicate or record their intentions the way others are.