Perkins School for the Blind Transition Center

Health Care Directives: A Safeguard and a Support

It is essential for all adults to execute advance planning documents, especially those adults on the autism spectrum who have the capacity to do so. Chief among these estate planning documents is the health care directive. Often, parents make all health care decisions for their child for the first 18 years of that child’s life. When a child turns 18, the parent no longer has the legal capacity to make health care decisions for the child. If your child with autism has the capacity to make health care decisions for herself upon reaching 18, it is necessary for her to execute a health care directive to take effect if she subsequently lacks capacity to make a health care decision.

A health care directive typically contains two elements, the proxy directive and the instruction or advance directive. An individual can choose to utilize only one of these directives, but most individuals execute both (within the same document) in order to establish a comprehensive plan.


Proxy Directive


The proxy directive is essential because if an individual loses decision-making capacity without executing one, it will be necessary to establish a guardianship in order to have someone named to make medical decisions for the individual. Guardianships are time-consuming, costly, and they do not ensure that the individual’s choice of agent will be appointed.

In a proxy directive, an individual names an agent (also called a representative or a proxy) to make health care decisions in his or her stead. Most health care directives only become effective if the principal is unable to make or communicate treatment decisions due to mental or physical disability. It is extremely important to name multiple successors to this role in the event that the named agent becomes unable or unwilling to act. Attorneys differ with respect to the number of proxies that can be named at one time, but it is good practice to name only one person as a health care proxy because it is easier for a doctor to turn to one point person. People are sometimes shocked to hear that only one proxy should be named to act in a given time period. To allay these concerns, it is possible to include a consultation clause which states that the individual executing the document wishes that if one person is acting as an agent, he or she must consult with the others. For example, when an adult child is appointed as a proxy for a parent, the document can provide that the child consults with his or her siblings before making a final decision about the parent.

Many health care directives include a conflict clause, which states that if there is a conflict, the proxy’s decision controls. The purpose of this clause is to avoid situations in which a doctor does not consult with a representative before taking certain actions. It is also essential for the health care directive to specifically refer to and apply to the Health Insurance Portability and Accountability Act of 1996 (HIPAA).

The powers explicitly provided to the agent through the health care directive may include supervision of care, ability to employ a care manager or provide a companion, access to medical records, and review and execution of releases required to obtain medical information. An agent should also be empowered to employ or discharge health care personnel, including physicians, psychiatrists, dentists, nurses, and therapists. An agent is typically empowered to arrange for admission of the principal to a hospital or other facility, arrange for home care, summon emergency treatment, and sign admission forms. Other powers often given to a health care proxy include the power to give or withhold consent to psychiatric treatment, power to authorize relief from pain, and power to request, require, or consent to a Do Not Resuscitate order.


Instruction/Advance Directive


The instruction or advance directive is often referred to as a “living will.” The most common version of an advance directive states that if two doctors determine that the principal lacks capacity to make an informed health care decision, and there is no reasonable hope of recovery or of regaining a meaningful quality of life, then life-sustaining treatment (LST) should be withheld or withdrawn in each of the following circumstances:


Permanently Unconscious – There is no reasonable possibility that the principal will return to cognitive life. This includes, but is not limited to, a persistent vegetative state.


Terminal Condition – The condition is reasonably expected to result in death within 12 months regardless of treatment.


Experimental Treatment – LST is unproven or experimental, is unlikely to prolong life, and would merely prolong the imminent dying process.


LST is defined in each of the above three circumstances as the following:


  • Procedure, drugs, surgery, or therapy that uses mechanical or artificial means to sustain, restore, or supplant vital body function


  • Cardiac resuscitation, defibrillation, cardioversion


  • ACLS drugs, cardi-selective drugs/infusions


  • Mechanical respiration, balloon pump (IABP)


  • Blood /blood products transfusion


  • Surgery or invasive diagnostic tests


  • Kidney dialysis


  • Antibiotics


  • Chemotherapy


Instruction directives usually request that all medical treatment be given to provide comfort and to relieve pain. In this most common directive, the individual requests that artificially-provided fluids and nutrition (feeding tube) shall not be given if LST is withdrawn in the three previously-noted circumstances.

One alternative to this common version is a directive in which the principal requests that if any of those three circumstances occurs, they would be treated aggressively, rather than LST being withheld or withdrawn.

The second alternative is like the most common option described previously, except that the individual requests that artificially provided fluids and nutrition always be given, even if LST has been withdrawn. This choice is reminiscent of the Terri Schiavo case in which Ms. Schiavo was kept alive with a feeding tube despite being classified as being in a persistent vegetative state.

Finally, an advance directive can be used to denote whether individuals wish to donate their organs and whether they wish to donate their bodies to science.


Advance Directives for Mental Health Care


Some states have statutory provisions for a psychiatric advance directive (PAD). The New Jersey Advance Directives for Mental Health Care Act became effective in 2006. Like a typical health care advance directive, the mental health care advance directive can include a proxy directive, an instruction directive, or both. The PAD is most suitable for adults who are already diagnosed with mental illness and those who are current or likely consumers of mental health treatment. As with a typical proxy directive, an individual can name a specific mental health care agent to make mental health care decisions in her stead if at least two doctors determine that she is unable to do so. In the instruction directive, an individual can provide his or her general mental health care philosophy and can state preferred treatments and institutions or mental hospitals, preferred medications, preferred means of crisis intervention, specific wishes regarding provision, withholding, or withdrawal of mental health care, and/or consent to admission to a psychiatric facility for a specified number of days.

An advance directive for mental health care is valid for an indefinite period of time if it does not list an expiration date. If the directive expires during a period of incapacity with respect to a particular mental health care decision, it remains in effect until the principal has regained capacity. A principal may modify or revoke a directive, even if the document does not explicitly indicate that he or she may do so. A principal may revoke a directive by oral or written notification to the mental health care representative, a professional, or a reliable witness, or through the execution of a subsequent directive.

A mental health care professional is permitted to depart from the decision of a mental health care representative only if compliance with that decision would:


  • Violate the accepted standard of mental health care or treatment under the circumstances of the patient’s mental health condition;


  • Require the use of a form of care or treatment that is not available to the mental health care professional responsible for the provision of mental health services to the patient;


  • Violate a court order or provision of statutory law; or


  • Endanger the life or health of the patient or another person.


Supports must be put in place for adults on the autism spectrum. One essential safeguard is an executed health care directive to provide an individual’s loved ones with the ability to make health care decisions in the event of incapacity.


Susan M. Green is an attorney with Begley Law Group, P.C. in Moorestown, New Jersey. Begley Law Group, P.C. specializes in planning for disabled individuals and families. The firm’s services include, but are not limited to, estate planning, special needs trusts, and guardianship proceedings. To contact Green, please call 856-235-8501 or visit the firm’s website at

Have a Comment?