Models for Decisional Help
Balancing Autonomy and Risk
By Heather Connors, Ph.d.
Photo Credit: Corinna Spinale
One of the greatest challenges of serving as someone’s guardian or conservator is knowing when to limit interventions, so as to maintain the individual’s independence and dignity, without unduly risking harm to him or her, or to others.
This challenge was the theme of the Massachusetts Guardianship Policy Institute’s second statewide conference, Decision Making: Balancing Autonomy and Risk, which was held at the College of the Holy Cross in Worcester on November 27, 2018.The Conference welcomed approximately 150 participants from elder services agencies, Councils on Aging, nursing facilities, hospitals, law firms and social service agencies through Massachusetts. It was a day of remarkable presentations, clustered around the mainly clinical questions of how to protect incapacitated individuals while respecting their autonomy.Like last year’s conference, this year’s event was co-sponsored by the Institute and the National Association of Social Workers. Continuing Education Units (CEUs) for the conference were offered to social workers, nurses, care managers, CPCS attorneys, nursing home administrators and guardians.
Massachusetts Senate President Emerita (and current Senator for the First Worcester District) Harriet Chandler helped begin the day with strong encouragement to keep reaching out to seniors and the disabled, especially those who are isolated.
She has been a champion of health care reform throughout her 23 years in the Legislature, and was a pivotal force during the 2006 health care access law debate, as well as health care cost reforms in 2017-18.
Like many other leaders and politicians who engage with issues of aging and disability, President Chandler has had personal experiences that helped her to understand the urgency of this need.
• First Morning Session. The first panel of the day consisted of a group of clinicians from the Boston VA. Michelle Mlinac, PsyD., ABPP, Susan Nathan, MD, Olga Quinlan, LICSW, and Lisa M. Shea, LICSW, presented a program called My Life, My Story. This program, which allows a veteran the opportunity to talk about his or her life through their own narrative, helps providers understand the patient as a person. The panel discussed these narratives as a way of better understanding a person’s decision within its historical context.
• Second Morning Session. The next session, entitled, “Ethical Decision Making for Persons with Diminished Capacity,” was led by David Godfrey, JD, of the American Bar Association Commission on Law and Aging. Atty. Godfrey focused on why we as a society protect people, and the difficulty of balancing between under-protection and over-protection. One of his most startling comments was his dramatization of the cold logic that can drive unbalanced policies in institutionalized settings: “If no one walks, no one falls.” This eye-opener helped to remind participants that risk is part of our everyday lives and is necessary for many people’s quality of life.
• Lunch Session. The lunchtime panel addressed legal liability for guardians when the protected persons for whom they have responsibility take risks. This session included Eileen Sullivan-Boss, Esq., who has an extensive resume as private guardian; Susan Mandra Thompson, Esq., who directs the large guardianship program at Family Services of Fall River; and Andrew Jones, Esq., who is an insurance industry advisor specializing in liability coverage for fiduciaries. This panel discussed both the risky decisions that protected individuals can make, as well as how a guardian might protect him- or herself from liability when consenting to such risks.
• First Afternoon Session. The fourth panel presented on a little-discussed, but very important, issue for guardians: sexual decision-making for people with diminished capacity. The panel, made up of David Godfrey, JD, Kate Granigan, LICSW and Paula Thompson, LICSW, addressed the topic from different perspectives. Mr. Godfrey focused on laws that may guide or limit the decisions of guardians. Ms. Granigan present two compelling case studies that had contrasting outcomes, each of which appeared to be closely related to how much the guardian respected the choices of the protected individual. Finally, Ms. Thompson discussed education about sexuality for persons with disabilities.
• Second Afternoon Session. The day’s last panel addressed the impact of risk on quality of life. The panel consisted of Noah Whiddon, LICSW, Community Living Center (CLC) Complex Case Coordinator at the VA Boston Healthcare System, Brockton Division; Institute member Heather Connors, Ph.D., Director of Research for Guardian Community Trust, Inc., in Andover, Massachusetts; and Penny Brierley-Bowers, Ph.D., Director of Applied Research and Program Evaluation at the University of Massachusetts Donahue Institute.
Mr. Whiddon reviewed the importance of understanding a person’s values, and reminded participants that differences in values may be mistaken for incapacity when a person’s values history isn’t well understood. Heather then discussed how to return autonomy to people under guardianship, using the supported decision making model that has emerged in recent years as a voluntary alternative to guardianship for individuals who have the capacity and social network to compensate for their decision-making limitations. Finally, Dr. Penny Brierley-Bowers discussed trends and progress in measuring quality of life for persons under guardianship in institutionalized settings. This model advances the understanding of quality of life by tying it to more comprehensive measures of well-being that may incorporate a number of separate spheres in which qualify of life can be measured.
• Final Session. The day ended with a brief PowerPoint presentation by Institute member Traci Cucinotta, MBE, MSW, LICSW, describing the origins and upcoming offerings of the Massachusetts Guardianship Academy. The Academy is a new initiative of the Institute that will train people in practices, procedures and standards for guardianship and other decision-making alternatives, as well as providing education about recognizing signs of possible guardianship need, steps to obtain an evaluation of that situation, and what to expect if a guardianship or conservatorship petition is filed.
Conclusions & Next Steps
Feedback about the conference was overwhelmingly positive. Participants asked informed and thoughtful questions throughout the day, and most reported in their evaluations that the sessions provided useful and topical information.
The Institute is planning several projects for 2019, including the launch of several training programs in the Academy. A few conference participants mentioned that they would have benefitted from an introductory presentation about guardianship. In response, we are pleased to note that the Academy will begin offer training both for new guardians and for professionals, beginning in January, 2019. The training for new guardians will be a comprehensive course covering everything from the basics of guardianship, to ethical decision making and the court requirements for a guardian.
Our second-level course will provide advanced trainings for professionals who work with guardians, such as health care professionals who need the cooperation of a guardian in order to provide care for someone who lacks the immediate capacity. This training will give professionals the opportunity to learn a guardian’s responsibilities, authority and limitations. The program is appropriate for hospital and other health care providers, as well as those working with older or disabled populations. More information and registration for both courses may be found at www.guardianship.academy.
Finally, in response to the participants who reported wanting a space to network and learn from other guardians, we will be offering Guardianship Rounds beginning in March 2019. This program will give different guardians an opportunity to present a case and teach colleagues about the challenges and learning opportunities it presented. Guardians wishing to present a case should contact Heather@guardianship.academy for more information.
Heather L. Connors, Ph.D. is a gerontologist and Director of Research for Guardian Community Trust, Inc., a nonprofit organization located in Andover, Massachusetts, that is committed to advocacy for persons with unmet decisional needs. Heather was a principal organizer of the Guardianship Conference, as well as a panelist, and oversees a number of research projects sponsored by Guardian Community Trust.