What is Supported Decision Making?
Supported Decision Making (SDM) is an approach to decision making for persons with disabilities to help them make a decision in any area of their lives. SDM involves the use of one or more persons acting as a “supporter” to assist the person with a disability understand, analyze, and if necessary to communicate a choice or decision about any area of life, including in medical care and treatment.
SDM is an alternative to a guardianship or conservatorship to allow a person with a disability to remain independent. SDM may be a formal or informal arrangement between the person with a disability and the supporter or supporters. While currently SDM is gaining widespread use and acceptance by people with intellectual and other developmental disabilities, it is not limited to any specific disability or diagnosis.
How does SDM work?
A person with a disability using SDM selects one or more supporters – a trusted friend or family member – to assist her or him with making a decision. The supporter’s exact role will vary depending on the needs of the person with a disability. The supporter may help to explain a medical procedure or diagnosis in a way the person with a disability can understand; assist with communicating a decision by the person with a disability to a health care provider; or may talk through the pros and cons of a medical treatment or decision with the person with a disability.
How can SDM be used in the Health Care context?
A person with a disability can use the SDM supporter to help make or communicate a decision involving any aspect of health care. For example, the person using the supporter may wish to discuss the benefits and side-effects of a certain medication before deciding to take the medication. A person with a disability may ask the supporter to assist in filling out required paperwork, or to explain medical or health insurance terminology. There are a wide range of areas within the medical and health care fields for which SDM can be used by persons with disabilities. The key is the person with a disability is the one to determine how to use the supporter.
Is Shared Decision Making the same as Supported Decision Making?
While Shared Decision Making and Supported Decision Making share a common acronym and some common principles, the two models are distinct. Under “shared decision making,” a doctor and patient work together to explore various health care options and decide on the best course of treatment considering “what matters most” to the patient.1 In contrast, supported decision making specifically involves the use of at least one third party – the supporter – chosen by a patient with a disability to assist the ultimate decision maker – the patient.
It is important to keep each decision making model distinct. Nevertheless, supported decision making and shared decision making could be used together to decide on a treatment option, with the patient – assisted by the supporter, and the doctor arriving at a treatment decision. Supported and shared decision making also share one critical element, the importance of patient self-determination, regardless of whether or not the patient has a disability that requires the use of a supporter.
Is SDM a legal arrangement?
States are quickly recognizing the use of SDM, but each jurisdiction will be slightly different. Some States have adopted SDM through statute, while other States recognize SDM through court decisions.2 In any event, no matter what State the health care provider practices, SDM should be seen as an alternative to guardianship or conservatorship which allows a person with a disability to make a health care decision.
In most States, a written SDM agreement is not required. As the law is changing rapidly in regards to SDM, each health care provider should remain familiar with the specific laws in the applicable State(s) of practice. In many cases, a person with a disability using a supporter will enter into a written SDM agreement, even if not required under State law. The person with a disability may present a copy of the SDM agreement to the health care provider as an explanation of the role of the supporter.
Who can be a supporter?
Since the person with a disability in need of supports selects the supporter, anyone chosen can serve as a supporter. The supporter, however, should be a trusted person whom the person with a disability knows well. Typically, the supporter will be a parent, other family member, or a close friend. In some cases, the person with a disability may select a staff member from a service provider who works closely with her or him to serve as a supporter.
Health care providers should not question the person’s choice of the supporter. If you suspect that the supporter is abusing or exploiting the person with a disability, you should make a report to the State or local agency responsible for investigating abuse or neglect of persons with disabilities.
What can the supporter do?
The person with a disability determines the role of the supporter in assisting her or him make a decision. The supporter, however, cannot make the decision for the person with a disability. The role of the supporter can include assisting with communications, articulating medical information in a manner the person with a disability can better understand, or accessing medical records on behalf of the person with a disability with appropriate releases. Again, the role of the supporter will vary depending on what role the person with a disability chooses for the supporter.
How should I address the person using the supporter?
Always speak to the person with a disability first, and take the lead from the person with a disability about whom to address. In some instances if the supporter is assisting with communications, the person with a disability may ask the provider to speak directly to the supporter.
How should I address the supporter?
Follow the lead or direction of the person with a disability about how to engage the supporter. The supporter may be in the treatment or exam room, at the registration or check-out desk, or listening on the phone with the person with a disability, so at many points there is the possibility of engaging with the supporter. The person with the disability may ask the health care provider to explain what was said directly to the supporter, or ask that the supporter communicate directly with the provider.
How should I deal with any Privacy Issues?
In many situations the supporter will be in a position to hear or read confidential health information about the person with a disability. The person with a disability using the supporter can sign a HIPAA release form to enable the supporter to have access to protected health information.
What about the capacity of the person to make a decision?
In the vast majority of circumstances, a person with a disability using SDM retains the full legal capacity to make all decisions, including medical and health care decisions. A health care provider should not question the capacity of a person with a disability to make a health care decision solely because the person uses a supporter. SDM in fact exists to enable a person with a disability to avoid a guardianship or conservatorship and retain full decision making capacity. In the context of health care, the supporter may be present to allow the person with a disability to responsibly exercise his or her full decision making capacity.
In some cases, under a limited guardianship, a person with a disability may have a guardian or conservator with powers to make a decision on his or her behalf in some areas of life, while in other areas the person retains decision making capacity and may even use SDM in those areas. In every case, if a patient is subject to a guardianship or conservatorship, the health care provider must always ask for evidence of the powers granted to the guardian or the conservator by a court.
What if the person with a disability has a power of attorney for health care or a health care proxy?
The existence of a power of attorney for health care or a health care proxy does not impact the use of SDM. While some persons with a disability may also grant the supporter the ability to make a decision using a health care proxy or a power-of attorney for health care, such an arrangement only comes into play if the person with a disability becomes incapacitated. The use of a supporter under SDM is wholly distinct from the existence of a power of attorney for health care or a health care proxy.
1 Glyn Elwyn, et al., “Shared Decision Making: A Model for Clinical Practice,” J Gen Intern Med 27, no. 10 (2012): 1361-7, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3445676/.
2 The National Resource Center for Supported Decision-Making has State specific information about SDM at http://www.supporteddecisionmaking.org/states.
This Frequently Asked Questions is for informational purposes only and not for the purpose of providing any legal advice for any planning, claim, case, or any other matter. If you have legal questions about supported decisions making, you should contact an attorney in your State.
This Frequently Asked Questions was developed with funds from the WITH Foundation.
The contents do not necessarily represent the official views of the WITH Foundation.
Visit SDMmedicalcare.org for additional resources.