Surrogate Decision-Making
Background
Persons with mental disabilities who reside or once resided in facilities or programs licensed, operated, or funded by the New York State Department of Mental Hygiene sometimes require major medical and dental treatment. In some instances, they lack the capacity to make an informed decision for the proposed major medical treatment.
Additionally, in many cases, they don't have a family member or guardian who is legally authorized and willing to make this important decision on their behalf.
When a true medical emergency exists, New York State law allows physicians to provided these individuals emergency treatment without waiting for consent. If the proposed major medical procedure is not of an emergency nature, and there is no one authorized and willing to provide informed consent or refusal of treatment on behalf of the patient, one option is obtaining a court order for treatment. That process is sometimes expensive, impersonal and time consuming, and often results in a delay in obtaining needed medical services for the patient.
Surrogate Decision-Making Committees (SDMC) are an alternative approach to the court system for obtaining an informed decision about major medical treatment and are intended to provide a quicker, more easily accessible, cost-free and personalized decision on behalf of mentally disabled individuals:
- Average time from receipt of case in SDMC to hearing and decision - 14 days
- Expedited hearings also available
- Second opinions are NOT required
- Patient attends the hearing
- No fees to either the patient or their provider agency
The SDMC consists of volunteers appointed by the Commission on Quality of Care and Advocacy, and these volunteers exercise SDMC functions through panels of four.
Frequently Asked Questions
Who Serves on the Panels
The SDMC consists of at least 12 volunteers appointed by the Commission on Quality of Care and Advocacy, and this Committee exercises its functions through panels of four.
The panels consists of one member from each of the following categories:
- NYS Licensed Health Care Professional
- NYS Attorney
- Family Member or Former Client
- Advocate for Persons with Mental Disabilities
Currently, the Commission has trained and appointed over 1,600 volunteers to serve throughout New York State.
What Determinations Must They Make?
After carefully reviewing the submitted Case Filing Forms, the Surrogate Decision-Making Panels will make as many as three decisions:
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Determination of the patient's ability to consent to or refuse the proposed major medical treatment.
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Determination of whether there is an authorized surrogate who is willing and available to make the decision to consent or refuse the proposed major medical procedure on behalf of the patient.
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Determination of whether the proposed major medical treatment is in the best interest of the patient.
The panel will only make these decisions in this order to protect the patient's rights. In all cases, the patient will be seen by the panel or its representative, before a decision is made.
What Major Medical Treatment is Included?
Medical, surgical, dental, or diagnostic interventions or procedures which involve. . .
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The use of a general anesthetic (SDMC Program Protocols have been modified to include cases for intravenous (IV) sedation and monitored anesthesia care (MAC) when the MD requires informed consent)
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Any significant invasion of bodily integrity requiring an incision or producing substantial pain, discomfort, debilitation, or having a significant recovery period
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Significant risk
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HIV testing
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Chemotherapy
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Hospice
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Withdrawal or withholding of life sustaining treatment as provided in the Health Care Decisions Act for persons with mental retardation or developmental disabilities
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Any other treatment or procedure for which informed consent is required by law.
What Treatment is Excluded by Law?
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Routine diagnosis or treatment including the administration of routine medications (including psychotropic medications)
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Dental care performed under a local anesthetic
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Emergency medical treatment
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Electroconvulsive therapy (ECT)
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Withdrawal or discontinuation of life sustaining medical treatment (except as provided in the Health Care Decisions Act for persons with mental retardation or developmental disabilities)
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Sterilization
- Termination of pregnancy
Who Qualifies for Consideration?
Persons with mental disabilities in need of non-emergency major medical treatment, residing or once resided in a residential facility or program, operated, funded or licensed by an Office of the Department of Mental Hygiene or the office of Alcoholism and Substance Abuse Services. In addition, persons receiving or who once received individualized support services, case management or service coordination under the auspices of the Office of Persons with Developmental Disabilities (OPWDD) are also eligible for decision-making by the SDMC program.
INCLUDED ARE:
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State Psychiatric Centers
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State Developmental Centers
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Community Based ICFS
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Community Residences
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Family Care Homes
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Residential Treatment Facilities
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Psychiatric Hospitals
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Psychiatric Units of General Hospitals
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Private Schools for the Mentally Retarded
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Individualized Support Services
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Case Management or Service Coordination funded, approved or provided by OPWDD
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Home and Community Based Waiver Clients
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Individualized Residential Alternatives Clients
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Any person who was ever a resident of a facility or program operated, licensed or funded by OPWDD, OMH or OASAS.
Which New York State Counties Can Use the Program?
As of June 1, 2001, the SDMC program operates in all New York State counties.
How Do I Apply?
To have the Surrogate Decision-Making Committee consider a case, you must submit the request in writing (Declaration) on special Case Filing Forms. The Case Filing Forms and instructions may be downloaded and completed for submission to SDMC for processing. Additional supporting information must be obtained from the facility or program where the individual resides. An introductory letter explaining what information is required for processing and submission of forms is also available. Further assistance in completing them may be obtained by calling (518) 388-2820.
Is There Training Available?
The SDMC Training Unit offers a Provider Training Session which provides detailed information and hands-on instructions on preparing a case for non-emergency major medical treatment for review by the SDMC Panel. The session also includes guidance on how to present a case to the SDMC Panel and what to expect at the hearing. The program qualifies for 3 hours of General Interest/Professional Development Credit for Medicaid Service Coordinators. A separate, 2 hour session on the preparation of a case for consideration by the panel for the withdrawal or withholding of life sustaining treatment in accordance with the Health Care Decisions Act is also available, and also qualifies for MSC credit. These sessions can be arranged on-site at the convenience of your agency by contacting SDMC at (518) 388-2820 or webmaster@cqc.ny.gov. Sessions are also regularly available at various DDSO locations throughout the State through the Office of Persons with Developmental Disabilities (OPWDD) Catalog of Training and Talent Development Programs.
Can I Become a Panelist?
The Surrogate Decision-Making Committees are composed of volunteer panelists. Each panel is made up of a member from each of four categories: attorneys admitted to practice in New York State, New York State licensed medical and health care professionals (medical doctors, nurses, clinical social workers, etc.), family (persons who have been consumers of mental hygiene services or who have family members who are or who have been consumers), or advocate members (persons with recognized expertise or demonstrated interest in care and treatment of individuals with mental disabilities). Panel members are appointed after completing a one-day training session and serve for 2-year terms. Members may be reappointed for additional 2-year terms.
The panelists review declarations regarding an individual's capacity and need for treatment. The decisions are made by the panels after a hearing to take testimony on each declaration. The workload is manageable since cases are reviewed by the panelists prior to the hearing and panel determinations are, in most cases, made on the day of the hearing. The nature of these procedures allows the panel members to select the amount of participation which is consistent with their other obligations. Continuing legal education credit is available in conjunction with the training for attorneys. Information about becoming a volunteer is on our website.
Travel expenses for training and hearing participation are reimbursed. Training is provided by the Commission. You will be asked to execute an Oath of Office and indemnification is provided by the State.
If you would like to serve on the panels, please go to our application forms, or contact: webmaster@cqc.ny.gov, or FAX (518) 388-2828, or call (518) 388-2820, or write:
NYS Commission on Quality of Care and Advocacy
for Persons with Disabilities
Surrogate Decision-Making Committee Program
401 State Street
Schenectady, NY 12305-2397
The National Council of State Governments bestowed an "Innovations" award in 1990 upon the Commission for this Surrogate Decision-Making Committee program. The award is given to programs demonstrating an effective, innovative solution to a significant problem common to several states. Articles about the program have been written in prestigious medical journals -- The New England Journal of Medicine [Sundram, Clarence J., "Informed Consent for Major Medical Treatment of Mentally Disabled People: A New Approach," The New England Journal of Medicine, 318, 1988, 1368-1373] and the Journal of the American College of Physicians [Herr, S.S., & Hopkins, B.L., "Health Care Decision Making for Persons with Disabilities: An Alternative to Guardianship," Journal of the American College of Physicians, 271, 1994, 1017-1022]. This program relies extensively upon volunteers who serve on the decision-making panels. Their exemplary services were recognized in 1989 with the receipt of the Eleanor Roosevelt Community Service Citation from the Governor's Office for Voluntary Service.