As with the general population, it is important to Initiate the advance care planning process for all people with intellectual/developmental disabilities (ID/DD) 18 years of age or older.
The first step is to determine the capacity or ability of the person with DD/ID to choose who they trust to make health care decisions. If the person has the capacity to choose a health care agent, encourage the individual to complete a health care proxy using the same Five Easy Steps.
If the person with DD/ID does not have the capacity to choose a health care agent, consider initiating guardianship, with the authority to make medical decisions, including decisions regarding life-sustaining treatment.
Family members and staff serving those with ID/DD should also engage in advance care planning.
Before an individual with ID/DD can appoint a health care agent, it must be determined that he or she is able to choose an agent. The ability to choose a health care agent is referred to as capacity determination and means:
The individual must sign and date the proxy in the presence of two adult witnesses.
Any adult who knows the person with ID/DD well and is willing to make health care decisions, except for individuals affiliated with the residential agency or facility, unless the individual is related by blood or marriage. Those excluded include a governing body member or CEO, employee or physician of residential agency/facility.
Yes. Wishes for treatment may be included on the health care proxy. This includes providing, withholding or withdrawing life sustaining treatment, such as cardiopulmonary resuscitation, intubation and mechanical ventilation, artificial hydration and nutrition, blood transfusions, pain medication, chemotherapy and antibiotics.
If instructions pertaining to artificial hydration and nutrition are not included, and the agent does not know the individual’s wishes – the agent does not have the authority to withhold/withdraw artificial hydration and nutrition.
Because it is difficult to predict the future, it is more important to document personal values, beliefs and goals for care.
A health care agent does not have authority to make health care decisions until the individual with ID/DD has been determined to lack capacity to make such decisions.
A licensed physician or clinical psychologist:
The individual, the health care agent, the CEO of the residential facility, and the guardian (if one exists) must be notified of a determination of the incapacity or the inability to make medical decisions.
Yes. The individual can object to an incapacity determination and the objection prevails. The individual can also object to a health care decision made by a health care agent and the objection prevails.
In order to overcome the objection, a court must determine that the individual lacks capacity to make a health care decision.
Capacity to make a health care decision is the ability to adequately understand and appreciate the nature and consequences of proposed professional medical treatment.
The NYSDOH MOLST checklist #2 applies to “Adult Patients Without Medical Decision- Making Capacity who Have a Health Care Proxy” and can be used in any setting. The NYSDOH MOLST Checklist #2 is the appropriate checklist to accompany the MOLST form.
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