Bill Overview
Title: State Registries for Advance Directives Act of 2022
Description: This bill authorizes the Department of Health and Human Services to award grants to states for developing or maintaining registries of advance care directives. These are legal documents that set out decisions about the type and extent of medical care an individual would accept or refuse in the event the individual is unable to make such decisions.
Sponsors: Rep. Suozzi, Thomas R. [D-NY-3]
Target Audience
Population: Individuals capable or interested in creating advance care directives globally
Estimated Size: 90000000
- Advance care directives pertain to decisions regarding medical care preferences for individuals unable to make decisions themselves. Such scenarios typically involve incapacitating medical conditions.
- Advance care directives are applicable to situations involving end-of-life care, persistent vegetative states, terminal illness, severe injury, or severe cognitive impairments.
- Most adults are capable of creating an advance directive, but not all do. Awareness and creation of these documents vary widely across different populations.
- The act encourages the development of systemic registries that ensure accessibility and reliability of directives when needed. This system primarily benefits those who possess advance directives.
- The affected global population includes individuals who either already have or are likely to create advance directives due to their health, age, or cultural background that values such preparations.
Reasoning
- The target population includes adults in the U.S. who are directly concerned about advance care directives, especially those with chronic illnesses, aging concerns, or socio-cultural inclinations toward preemptive medical decision-making.
- We should consider a range of commonness within the population, as not all adults are equally aware or concerned about advance directives, and many might not create these documents unless specifically prompted.
- The potential impact of the policy on wellbeing will vary due to differences in state implementation, personal priorities, and health conditions among the population.
- The policy's limited budget must be particularly focused on states with larger aging populations and higher incidence of chronic illnesses to maximize the registry's utility and accessibility.
Simulated Interviews
Retired nurse (Florida)
Age: 70 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 15.0 years
Commonness: 5/20
Statement of Opinion:
- I think having a central registry for advance directives would be incredibly useful, especially in emergencies.
- As someone who has seen the benefits of advance directives in the healthcare setting, I fully support improving access.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 7 |
| Year 2 | 8 | 7 |
| Year 3 | 8 | 7 |
| Year 5 | 8 | 7 |
| Year 10 | 9 | 7 |
| Year 20 | 8 | 6 |
Software Engineer (California)
Age: 45 | Gender: male
Wellbeing Before Policy: 6
Duration of Impact: 10.0 years
Commonness: 7/20
Statement of Opinion:
- I haven't thought much about advance directives, but knowing they would be easy to register could change that.
- If the process is easy, I might consider making one soon.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 6 |
| Year 2 | 7 | 6 |
| Year 3 | 7 | 6 |
| Year 5 | 8 | 6 |
| Year 10 | 8 | 6 |
| Year 20 | 8 | 5 |
Marketing manager (New York)
Age: 30 | Gender: female
Wellbeing Before Policy: 8
Duration of Impact: 20.0 years
Commonness: 15/20
Statement of Opinion:
- It's good to know a registry might be out there, but it's not something I prioritize right now.
- Maybe in a few years when my parents get older, I'll look into it more.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 8 |
| Year 2 | 8 | 8 |
| Year 3 | 8 | 8 |
| Year 5 | 8 | 8 |
| Year 10 | 8 | 8 |
| Year 20 | 8 | 8 |
Teacher (Texas)
Age: 53 | Gender: other
Wellbeing Before Policy: 6
Duration of Impact: 10.0 years
Commonness: 10/20
Statement of Opinion:
- Having an advance directive registry sounds like a smart move. It would give me peace of mind knowing my wishes are officially recorded.
- I would probably go ahead and do it if it's made simple and statewide.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 6 |
| Year 2 | 7 | 6 |
| Year 3 | 8 | 6 |
| Year 5 | 8 | 6 |
| Year 10 | 8 | 6 |
| Year 20 | 7 | 5 |
Retired factory worker (Ohio)
Age: 65 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 10.0 years
Commonness: 9/20
Statement of Opinion:
- Advance directives are crucial for me and my family already knows my wishes.
- Organizing them in a registry would help ensure they're followed no matter what happens.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 5 |
| Year 2 | 7 | 5 |
| Year 3 | 7 | 5 |
| Year 5 | 7 | 5 |
| Year 10 | 6 | 4 |
| Year 20 | 5 | 3 |
Civil Engineer (Illinois)
Age: 40 | Gender: female
Wellbeing Before Policy: 6
Duration of Impact: 20.0 years
Commonness: 6/20
Statement of Opinion:
- Registries for advance directives would simplify the process for everyone involved.
- I've already looked into them and would appreciate a central place to store these documents.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 6 |
| Year 2 | 7 | 6 |
| Year 3 | 7 | 6 |
| Year 5 | 7 | 6 |
| Year 10 | 8 | 6 |
| Year 20 | 8 | 5 |
College student (Colorado)
Age: 22 | Gender: male
Wellbeing Before Policy: 7
Duration of Impact: 20.0 years
Commonness: 18/20
Statement of Opinion:
- I've heard my parents talk about these but haven't really thought about them for myself.
- Maybe down the line I'll consider it, this policy might be useful when I do.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 7 |
| Year 2 | 7 | 7 |
| Year 3 | 7 | 7 |
| Year 5 | 7 | 7 |
| Year 10 | 7 | 7 |
| Year 20 | 7 | 7 |
Retired librarian (Pennsylvania)
Age: 80 | Gender: female
Wellbeing Before Policy: 6
Duration of Impact: 5.0 years
Commonness: 7/20
Statement of Opinion:
- I completed my directive years ago, so having a registry ensures my choices are followed regardless of where I move.
- This policy would bring me relief by validating and securely storing my wishes.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 6 |
| Year 2 | 7 | 6 |
| Year 3 | 7 | 6 |
| Year 5 | 6 | 6 |
| Year 10 | 5 | 5 |
| Year 20 | 5 | 4 |
Freelance artist (Nevada)
Age: 55 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 10.0 years
Commonness: 11/20
Statement of Opinion:
- After dealing with cancer, I'm more aware of end-of-life issues and a registry might make setting up directives easier.
- I would want to ensure my new directive is accessible during emergencies.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 5 |
| Year 2 | 6 | 5 |
| Year 3 | 7 | 5 |
| Year 5 | 7 | 5 |
| Year 10 | 7 | 5 |
| Year 20 | 6 | 4 |
Retired teacher (Arizona)
Age: 67 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 20.0 years
Commonness: 8/20
Statement of Opinion:
- Creating a directive registry could motivate more people in my community to prepare their own documents.
- Having such accessibility is crucial as we age and face unforeseen health issues.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 7 |
| Year 2 | 8 | 7 |
| Year 3 | 8 | 7 |
| Year 5 | 8 | 7 |
| Year 10 | 8 | 7 |
| Year 20 | 7 | 6 |
Cost Estimates
Year 1: $150000000 (Low: $100000000, High: $200000000)
Year 2: $135000000 (Low: $90000000, High: $180000000)
Year 3: $120000000 (Low: $80000000, High: $160000000)
Year 5: $100000000 (Low: $70000000, High: $130000000)
Year 10: $70000000 (Low: $50000000, High: $90000000)
Year 100: $10000000 (Low: $7000000, High: $13000000)
Key Considerations
- Variability in costs due to state-specific factors including existing healthcare infrastructure and population size.
- Potential resistance or challenges in digitization and data security, especially in states with less advanced IT infrastructure.
- Long-term financial benefits through cost savings in the healthcare sector due to more efficient medical decision-making.