People with disabilities often depend on others, and need services and supports to survive and thrive. Therefore, they are particularly vulnerable to undue influence or even coercion in medical decision-making. Most medical decisions will impact family, supporters, employers, case workers, and service providers as well as the patient. Everyone who funds or provides care to a patient has a competing interest. The needs and preferences of the person with a disability are important. So are those of the people who support them. Problems arise when there is a real or perceived conflict. Learning to acknowledge and manage competing interests is an important part of patient-centered care for people with disabilities.
Managing competing interests starts with disclosure and making needs and preferences explicit.
1. During introductions, have each person explain their role in the patient’s life and whether they control funding, or provide paid or unpaid services or supports.
2. Ask each person with a competing interest and the patient to complete a table describing what is important to the person and what is important for the person. Each person should do this independently without input from or consideration for the needs of the patient or any other team member.
3. Make a chart with each team members’ answers.
4. Look for win-win solutions. These are often possible. Where they are not possible, negotiate compromises. If compromise is needed, offer the patient access to an advocate or supporter who does not have any competing interests and whose role is solely to help the patient advocate for themselves. The advocate does not have to agree with the decision or priorities. The Client’s Rights Advocate from Disability Rights California, an authorized representative, or an ombudsman can be called to provide this advocacy.
Case Example
Scenario: A patient who is afraid of needles requires bloodwork.
Competing Interests: It is important to the patient that they avoid painful needle sticks, but important for the patient that a diagnosis is made so they can get appropriate treatment. It is important to the doctor that they take the time necessary to fully inform their patient of their options and the risks and benefits of each one, but important for them to stay on schedule. It is important to the patient’s In-Home Supportive Services (IHSS) worker that they support their client to get to and from the doctor’s office, but important for the worker to not incur over-time hours which could threaten their employment status.
| TEAM MEMBER | WHAT IS IMPORTANT TO? | WHAT IS IMPORTANT FOR? |
| Patient | Avoid painful needle sticks | Get a diagnosis |
| Support Worker | Provide needed support to transport the patient to her appointment | Avoid overtime |
| Physician | Take the time to fully educate patient and obtain informed consent | Stay on schedule |
Possible Solution: For this example, possible solutions may include:
Win-Win:
Send the patient home with a video or written materials to review and discuss with her worker.
Prescribe a numbing cream that can be provided and applied before a follow up appointment.
At the follow up appointment, the doctor can finalize the informed consent with their now educated patient and draw the needed blood.
Compromise:
Schedule the patient at the end of the morning session so if the appointment goes long it won’t impact other patients.
Use Paratransit for transportation home if the supporter has to leave at the end of her shift.
Case Example
Scenario: A patient, who is a trauma survivor, needs ongoing assistance with hygiene care.
Competing Interests: It is important to the patient that her mother help her with hygiene because she trusts her to respect her boundaries. It is important for the patient to learn to accept help from a paid aide because her mother is aging and has a bad back. It is important to the mother that her daughter feels safe and has her needs met. However, it is important for the mother to transfer some of her caregiving responsibilities to someone else as she feels it is too physically demanding. It is important to the regional center case coordinator that their client get her needs met because she is getting recurring urinary tract infections due to poor hygiene. It is important for the caseworker that the support is funded through the patient’s Medi-Cal insurance benefit because the regional center cannot fund an alternative when the client is eligible for in-home supportive services.
| TEAM MEMBER | WHAT IS IMPORTANT TO? | WHAT IS IMPORTANT FOR? |
| Patient | Feel safe during hygiene | Accept help from paid aide |
| Mother | Quality care for daughter | Relief from physically demanding tasks |
| Regional Center Case Worker | Reduce infections with better hygiene | Use the Medi-Cal benefit |
Win-Win:
• Ask the caseworker to help set up self-directed In-Home Supportive Services through Medi-Cal so the patient can hire an aide she likes (this could be a friend or relative).
• Ask the mother to help supervise the new worker during hygiene care without performing the physical parts of the task herself to ensure her daughter feels safe until she trusts the new worker.
Compromise:
• Ask the regional center to fund a ceiling-mounted Hoyer lift for the bathroom so that the mother can continue to provide care while protecting her back.
References:
Disability Rights California: https://www.disabilityrightsca.org/