Restoring rights — a path towards guardianship reform 

Personal autonomy is a right so basic it is often taken for granted. Yet state courts routinely appoint guardians for individuals deemed incapable of making their own personal decisions, stripping them of their personal autonomy. Recently, however, thanks to Brittney Spears, Michael Oher, and other high-profile exposés, the power of court-appointed guardianships to restrict rights and civil liberties has captured the attention of lawmakers who are now positioned to implement much-needed reform.   

Guardianship adjudications do not necessarily require findings that the ward be unconscious or have advanced dementia. A variety of factors along the continuum of mental and physical decline can lead to a judicial determination that guardianship is warranted — even when the ward appears in court and testifies otherwise. Where a full or plenary guardianship is granted, the guardian may be granted complete control over every intimate health and welfare decision. Predictably, unscrupulous guardians have abused this immense and often unfettered power, to the detriment of the susceptible individuals in their control. Investigations have revealed widespread abuse and exploitation among guardians, from failure to properly provide for the ward’s personal preferences and health needs, isolation of the ward from family, disregard of the family’s wishes, and neglect or abuse.

To avoid guardianship, the Uniform Law Commission recently approved a new Uniform Health-Care Decisions Act (2023) that empowers individuals to exercise control over their own health decisions. The new act reaffirms the importance of preparing plans — in advance of a mental or physical health crisis — to retain as much decision-making authority as desired. The act recognizes that individual decision-making should be respected and supported where possible, and that viable, less restrictive alternatives to guardianship exist along the continuum of capacity. To that end, the act authorizes individuals to prepare instructions specifying their own preferences for how care decisions should be made, and makes it easier to prepare health care power of attorney documents appointing a trusted health care agent to make decisions on one’s behalf, where necessary. In so doing, the UHDA recognizes the valuable role of friends, family, or others who support an individual in making care decisions, permitting such supporters and advocates to assist in both preparing and carrying out the care recipient’s wishes and instructions.   

Within a health care power of attorney document, a care recipient may choose to give their agent power to make every health and welfare decision. However, powers of attorney can also be drafted by the care recipient to retain for themself as much autonomy as desired. This can be done, for example, by placing limits on the grant of decision-making authority, or specifying that the agent will assume a supportive role but will not usurp the decision-making authority of a care recipient who is able to make their own choices. Incorporating such supported decision-making options recognizes that lapses or limitations in decision-making capacity do not necessarily prevent all decision-making. Instead, such arrangements allow the care-recipient to maintain some autonomous decision-making where feasible and with appropriate support.  

To account for the possibility of eventual mental or physical decline, a health care power of attorney can also grant progressively increasing decision-making powers to the agent, that are triggered only if the care recipient’s condition deteriorates or declines. For example, within the power of attorney document (or series of documents), the increased grant of power to the agent might take effect only under certain conditions. In such cases, the health care agent need only make decisions when the care-recipient is unable to do so, and can otherwise take on a supportive role when the care-recipient can make their own decisions. Moreover, the new UHDA recognizes the discretion of medical professionals to find that the patient — with support if necessary — may be capable of making some decisions about their care, if not others, and that decision-making ability, even if limited, should be respected. State legislatures would do well to adopt this new act. 

To be sure, health care powers of attorney may be not be effective or suitable for every circumstance, and in some instances other arrangements, including guardianship, are warranted. In such cases, limited guardianships allow the care recipient to retain some autonomy over decisions they are capable of making, and provide a viable alternative to the total loss of liberty and control that comes with a full guardianship. Yet under some circumstances, full decision-making authority must be given to a guardian for reasons of health and safety. In such cases, adequate guardrails can ensure that susceptible people who lack capacity to make decisions for themselves are not unfairly deprived of their liberties, dignity and autonomy, or victimized by unscrupulous guardians. The Guardianship Bill of Rights Act recently introduced by Sen. Bob Casey (D-Pa.), aims to address the problem of guardianship abuse by curtailing unnecessary guardianships, bolstering guardianship alternatives, and protecting the civil rights of those in guardianships.

The UHDA and the Guardianship Bill of Rights Act tackle the problem of guardianship abuse and overuse on two fronts, and together can dramatically increase the scope of protection for those who may need decision supports but not the restrictions of guardianship, and for those in guardianship proceedings whose human dignity must be protected. If enacted, these two complimentary pieces of legislation will help to address guardianship’s shortcomings at the state and federal level, safeguarding the right of each of us to make our own decisions about our health and welfare, for an uncertain future. 

Grace W. Orsatti is an Assistant Clinical Professor at the Thomas R. Klline School of Law of Duquesne University where she directs a legal clinic focusing on estate planning, incapacity planning, and alternatives to guardianship.