Hospice Patients Alliance: Consumer Advocacy

Advanced Directives

In all health care settings, it is helpful to have what is called an advanced directive for health care. An advanced directive contains an individual's instructions about what he wants to be done with regard to future medical care, treatments and procedures, if he is later unable to speak or communicate his wishes on his own. This document should be prepared with the assistance of an attorney for the best protections.

The Patient Self-Determination Act of 1990 (Public Law 101-508, Section 4206 and 4751) was enacted November 5, 1990, as part of the Omnibus Budget Reconciliation Act of 1990 (OBRA '90). "Patient self-determination" refers to the right of competent adults to make their own medical treatment decisions, and includes the right to complete advance directives, saying how and/or by whom decisions should be made in the future in the event the person becomes incapacitated and unable to make his or her own decisions.

According to the OBRA '90, at the time of admission to a Hospice the following must happen:

  • The facility must provide the patient written information concerning the patient's rights under state law to participate in decisions concerning medical care, including the right to accept or refuse medical or surgical treatment, the right to formulate advance directives;
  • The facility must provide a written statement of its policy regarding implementation of these rights;
  • The facility must document in its records whether the patient has executed an advance directive. Note: the facility is not required to provide advance directives to patients;
  • The facility is forbidden to discriminate in the provision of medical care on the basis of whether a patient has or has not executed an advance directive;
  • The facility is required to comply with all state laws regarding advance directives; and
  • The facility must provide for staff and community education on issues related to advance directives.

Hospitals, nursing homes and hospices may have standard forms available which specify whether or not the patient wishes to be resuscitated in the event of a cardiac or respiratory arrest, and sometimes the patient can specify that they do not want such resuscitation, making them "DNR" or "Do not resuscitate patients." Filling out such a standard form can be appropriate in some situations if the patient is truly terminal, but we always recommend that if possible, an attorney be consulted before ever filling one of these forms out.

We recommend that you take a look at three special advanced directive documents that can provide greater protections for the patient:

  • The Patients Rights Council's Protective Medical Decisions Document (PMDD) form. The PMDD is a protective Durable Power of Attorney for Health Care which is available from the International Task Force.

  • The American Life League's "Loving Will".
    The American Life League is a prolife organization that has been at the forefront of fighting abortion. It has also been one of the few prolife organizations to expose medical killings at the end-of-life, in hospices.

  • National Right To Life Committee's "Will to Live".

  • and Illinois Right To Life's Patient Self-Protection Document".

    These documents have special provisions to strengthen the protections for the patient compared to standard advanced directives. In all of these documents you name someone you trust (a family member or a close friend) to make health care decisions for you if you are ever permanently or temporarily unable to make such decisions for yourself. It is extremely important to make sure this person shares the same values you have and to make sure everyone in the family knows about the patient's wishes regarding health care.

    The family that comes together to respect the patient's wishes is most able to honor that loved one's wishes and to protect the patient should anyone, any staff member or agency try to override the patient's wishes. Any one of these documents will be a great help to the patient and family. You can customize them to your own individual wishes.


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