Proxy Partners is a communication skills training program to prepare volunteers to work with people who want help to make their own health care decisions. When completed, all curriculum materials will be available to nonprofit groups at no cost.
Massachusetts Health Decisions, a nonprofit health education organization, is developing a communication skill-building curriculum to train volunteers to establish and sustain a helping relationship with a person who wants support to make their own health care and related decisions. If desired, the volunteer may also serve as a health care agent in the event of future incapacity.
Who will benefit? There already exist programs and laws that provide decision makers for people who are incapacitated or incompetent, such as court appointed guardians, advance directives, and surrogate consent laws. The focus of this curriculum is for people who have decision making capacity but are alone. They may have no spouse, family, nor any close friends. They may be a “solo senior” living by themselves, or in congregate housing, an adult with a physical or cognitive disability, or simply a new resident or immigrant in an unfamiliar community. Many “solos” have expressed a desire for trusted help with making current health care and related decisions. And to better ensure that their preferences will be honored if they later become incapacitated, they might also like the same person to serve as their appointed health care surrogate in an advance directive.
What’s the primary goal of the training? The Proxy Partners skill-building training will focus on acquiring, practicing, and mastering effective but non-directive communication skills. Additional self-directed online learning will address key health care and health planning decisions, as well as goal setting strategies that may arise during a long-term supportive relationship.
Who can use the program? The program materials might be used by organizations to augment an existing “partnering” program, e.g., group living facilities and other ‘aging-in-place’ arrangements such as co-housing and ‘village’ associations; religious organizations with health and well-being outreach committees; home health care volunteer groups; local commissions on aging; ARCS. Other groups might wish to use the program and materials to start their own partnering programs: clinical professional society retirees or auxiliaries; volunteer departments of existing provider organizations such as hospice, home care and hospitals; patient advocacy groups; and academic or private industry retiree associations.
MHD will be conducting several pilots in 2019 with varied participants to finalize and evaluate the curriculum. The goal is to create a complete curriculum package that includes all training, online, promotional, and “train the trainer” materials that could be adapted for use by any appropriate organization in any state or community.
Will there be a cost to use the program materials? No. The program will be licensed by Massachusetts Health Decisions for controlled distribution but all the materials, both online and to conduct your own live training, will be available at no cost. This project is fully funded through a grant to MHD. Nonprofit organizations can use whatever parts of the program–either materials for live training or the online modules–they find useful.
Training program
2 or 3 in-person sessions, 9:00-4:00pm, 2 weeks apart
Day 1:
Program overview & goals
Background, introductions & schedule
Outline of live and online training
How the training might be used: in existing groups, or to form new programs
“Helping Skills for Proxy Partners”
• Learning objectives
• Plan for the day
• Communication research overview
Skills
• Understanding the need to be a helper
• Using effective nonverbal behavior
• Using effective verbal behavior
• Practice techniques: – modeled; self-assessment; with partner; with actors
• Review & homework
Day 2 and beyond
Review and plan for the day
Skills (cont’d from Day 1)
• Using self-involving behavior
• Understanding others’ communication
• Establishing effective helping partnerships
• Setting realistic goals
Introduction to advance directives and advance care planning
Making and sustaining partnerships in your organization or community
Self-directed online learning:
• Skills practice – review, and videos for self-directed continuing education
• Talking with clinicians
• Making health decisions for others
• Advance directives conversations
• Substituted judgement
• Informed consent
• Palliative care & hospice
• Key religious perspectives
• Setting reasonable boundaries
• Signs of incapacity
• Enlisting social services
• Grief & loss in adults
• Problems & conflicts: The work of patient advocates & ethics committees
Brief list of resources:
NIDUS: (Canada) Personal Planning Resource Centre and Registry
‘Elder Orphans’ Have a Harder Time Aging in Place
A Backup Plan for Solo Seniors: Health Care Decision Making for People Aging Alone