Self Determination

The U.S. Supreme Court recognized a state's right to require clear and convincing proof of an incompetent person's wish to withdraw life-sustaining treatment. Cruzan v. Commissioner, Missouri Department of Health, 497 U.S. 261 (1990). The decision resulted in the creation of advance health directives.

On December 1 1991, the U.S. Congressional Patient Self-determination Act (PSDA) took effect. The PSDA requires Medicare and Medicaid providers (such as hospitals, nursing homes, hospices, home health agencies, and HMOs) to give adults information, at the time of admission, about their rights under state laws. The information includes the patient's rights regarding advance directives, as well as the right to accept or refuse medical or surgical treatment. The act also prohibits an institution from discriminating against a patient who does not have or want an advance directive.

If the patient is a minor or is incapacitated, these rights extend to the patient's representative. The decisions that the patient, or their representative, make may not always coincide with the advice of healthcare providers, but those decisions need to be respected. Patients have a right to refuse treatment that may prolong their lives. In some cases, patients who are kept alive with drugs, treatments such as hemodialysis, or other means, may wish to stop these treatments. That is their right.

State Laws

Each state will have specific requirements and limitations regarding end of life planning, e.g. Massachusetts is one of three states that do not recognize a person's right to pre-determine the medical treatments authorized or refused in the event of incapacity (MMS). In addition, when end of life planning documents go into effect may be different from state to state. The State Attorney General's office is often a good starting place for forms and information about end of life planning and Advance Care Directives.

Advance Care Directives

Health care directives include: living will, health care surrogate and durable power of attorney for health care. These documents allow a competent person to inform medical professionals, family members and the legal system regarding medical preferences in the case of incapacity.

Having an advance directive in place is the only way a person can be reasonably sure that his or her wishes will be known and respected.

Advance directives should be:

• In writing
• Signed by the individual
• Compliant with state laws; there are slight variations from one state to another
  • Witnessed
  • Notarized
• Copies of advanced directives should be given to the following individuals:
  • Family members
  • Physician
  • Lawyer
  • Clergy
  • Close friend

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Living will

Review your state laws. "A Living Will is a written statement that expresses your wishes about medical treatment that would delay death from a terminal condition. It also applies to situations of persistent vegetative state or irreversible coma. A Living Will would speak for you in the event that you were unable to communicate. It gives direction and guidance to others, but is not as broadly applicable as a Durable Health Care Power of Attorney. For example, a Living Will does not permit health care providers to stop tube feeding - only an agent appointed by a Durable Health Care Power of Attorney or a court appointed guardian may make such a decision." - Office of the Attorney General of Arizona

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Health care surrogate

Many people believe that if they have a living will or advance directive they do not need to assign a health care surrogate to make decisions about their care if they are unable to do so. However, critical decisions that are not covered by the living will often need to be made. If a health care surrogate is not assigned by the individual, and the person is not able to express his or her desires, then the laws of the state take over and someone is allowed to make those decisions. The normal order is this:

• Court-appointed guardian
• Spouse or parent (for minor child)
• Child
• Parent or Sibling
• Other relative
• Friend

The prolonged court battle that ensued between the spouse of Teri Schiavo and her parents, over the spouse's decision to stop supportive treatments, is a prime example of what can happen if people do not make their wishes clear about end of life issues. Even members of the same family may have profound disagreements. It is the responsibility of the health care surrogate to advise the physician of the patient's wishes.

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A Durable Power of Attorney for Health Care

A power of attorney is a document that allows the principal to designate an agent that will act on behalf of the principal. In many states the power of attorney ends when the principal becomes incapacitated. A durable power of attorney extends the agent's authority to act on behalf of the principal in the event that the principal is incapacitated.

A durable power of attorney usually becomes effective when the principal is certified to be incompetent, and ceases to be effective when the principal regains capacity or when the principal dies. Depending on state law the principal may be able to authorize the agent to oversee the disposition of the body in matters of tissue/organ donation and autopsy.

A durable power of attorney for health care can authorize an agent to:

• refuse or consent to medical treatments
• select physicians and medical facilities
• visit when restrictions would preclude others
• obtain medical and personal records
• obtain court authorization to compel adherence to the principal's health care preferences.