New Jersey Administrative Code
Title 10 - HUMAN SERVICES
Chapter 48B - DECISION-MAKING FOR THE TERMINALLY ILL
Subchapter 1 - GENERAL PRINCIPLES
Section 10:48B-1.1 - General principles

i. The provision of appropriate end-of-life treatment for terminally ill individuals with developmental disabilities can raise some special ethical concerns. This is particularly the case for individuals with developmental disabilities who are receiving services from the State of New Jersey. On the one hand, the State has a special responsibility to protect individuals with developmental disabilities from all forms of discrimination, including medical treatment discrimination, based solely on the presence of a developmental disability. On the other hand, individuals with developmental disabilities who are terminally ill should not be subjected to medical interventions at the end-of-life simply because the State wishes to avoid the appearance of discrimination, that is, a perception that medical interventions are being withheld solely because of an individual's disabilities. Persons with developmental disabilities, as any other citizen, have the right to receive quality palliative care and the right to refuse medical treatment.

ii. Medical ethics has created a patient-centered framework for weighing the ethical obligation to provide interventions vs. the ethical decision to withhold and/or withdraw medical interventions. This framework identifies five major elements:

iii. To the extent possible, individuals with developmental disabilities who are receiving services from the State of New Jersey should receive the highest quality medical treatment and assessment available, including end-of-life care. Individuals acting on their behalf should seek to weigh the benefits and burdens of treatment in considering the best interest of the individual, that is, they should strive to avoid under-treatment, as well as over-treatment at the end of life. Finally, in all instances, they should make every effort to protect and nourish the dignity of individuals with developmental disabilities confronting terminal illnesses.

i. Individuals with developmental disabilities who are terminally ill should have access to the highest quality of palliative care. Palliative care encompasses a comprehensive approach to meeting the multi-dimensional needs of terminally ill individuals. It includes the provision of the appropriate medical, emotional, physical, psychosocial and spiritual support and care for the terminally ill individual.

ii. A special dimension of a palliative care program is the provision of appropriate medications and therapies designed to alleviate the pain and suffering of the terminally ill individual. The provision of appropriate pain management for individuals with developmental disabilities who are terminally ill presents some special challenges because often the individual may be unable to adequately express the severity and locus of pain and suffering. Therefore, particular attention needs to be paid to this aspect of end-of-life care by health care professionals who are trained to meet this need.

iii. In some instances, individuals with developmental disabilities who are terminally ill may benefit from a hospice program capable of providing comprehensive end-of-life care. Terminally ill individuals should have access to hospice care whenever appropriate. A hospice program may be provided in virtually any type of living arrangement, including, but not limited to, a health care facility specifically designed for hospice care, in a hospital, in a long-term health care facility, in a developmental center, in a community residence as defined in N.J.A.C. 10:44A or 10:44B, or in a private home.

iv. Good end-of-life care for terminally ill individuals often requires the administration of care in a setting familiar to the individual. This can contribute immensely to the emotional and psychological wellbeing of the individual. Accordingly, the Division will seek to utilize generic and specialized resources towards providing appropriate hospice care to terminally ill individuals within developmental centers and community residences in New Jersey.

i. Ethics Committee members shall have knowledge, experience and/or training regarding ethical issues pertaining to end-of-life care and the unique characteristics of individuals with developmental disabilities.