A Statement of Common Principles on Life-Sustaining Care and Treatment of People with Disabilities

A STATEMENT OF COMMON PRINCIPLES
ON LIFE-SUSTAINING CARE AND TREATMENT
OF PEOPLE WITH DISABILITIES

WHEREAS:

  • All people have fundamental human, civil, and constitutional rights.
  • Among these fundamental rights are the rights to life-sustaining care and treatment and to self-determination and autonomy.
  • These rights must not be sacrificed because a person has a cognitive, psychiatric, emotional, developmental, intellectual, sensory, or physical disability.
  • People acting as surrogates for persons who are limited in their ability to exercise self-determination and autonomy must never sacrifice the fundamental rights of those persons and must always act in accord with the rights and best interests of those with limited ability.

AND WHEREAS:

  • Disability is a natural part of the human condition.
  • Historically, people with disabilities have been subjected to prejudice and discrimination.
  • Disability has been used as a justification for depriving people of their fundamental rights.
  • Children and adults with significant disabilities have been especially vulnerable to violations of their fundamental rights, including the denial of access to life-sustaining care and treatment, such as routine medical treatment and food and fluids.
  • People may be capable of exercising their right to self-determination and autonomy in some situations and not in others.
  • People who do not have disabilities may not be able to anticipate what their wishes would be if and when they become disabled.
  • When people are capable of making decisions regarding life-sustaining care and treatment, their informed decisions must be respected.
  • For people who are limited in their ability to exercise their right to self-determination and autonomy with respect to life-sustaining care and treatment, family members, friends, or legally authorized surrogates can help them to make informed decisions about such matters as long as these decisions do not threaten their lives.

THEREFORE:

In fulfillment of fundamental rights and in recognition of the historical treatment of people with disabilities in society:

  • People with disabilities are entitled to exercise their rights to life-sustaining care and treatment and to self-determination and autonomy.
  • Absent clear and convincing evidence of the desires of people with disabilities to decline life-sustaining care or treatment, such care and treatment should not be withheld or withdrawn unless death is genuinely imminent and the care or treatment is objectively futile and would only prolong the dying process.
  • For the limited number of people who have lifelong cognitive disabilities and who have never had the ability to exercise self-determination regarding life-sustaining care and treatment, such care and treatment should not be withheld or withdrawn unless death is genuinely imminent and the care or treatment is objectively futile and would only prolong the dying process.
  • When doubt exists as to whether to provide life-sustaining care and treatment a presumption must always be made in favor of providing such care and treatment.


Individuals can endorse this statement by contacting The Center on Human Policy by mail (Syracuse University, 805 South Crouse Avenue, Syracuse, NY 13244-2280), fax (315-443-4338), or e-mail (thechp@syr.edu). Please state your endorsement of “A STATEMENT OF COMMON PRINCIPLES ON LIFE-SUSTAINING CARE AND TREATMENT OF PEOPLE WITH DISABILITIES” and provide the following information:

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Organizations can also endorse this statement. The President or Director of the organization should contact The Center on Human Policy by mail (Syracuse University, 805 South Crouse Avenue, Syracuse, NY 13244-2280), fax (315-443-4338), or e-mail (thechp@syr.edu). Clearly state that you are endorsing A STATEMENT OF COMMON PRINCIPLES ON LIFE-SUSTAINING CARE AND TREATMENT OF PEOPLE WITH DISABILITIES” on the behalf of your organization and provide the following information:

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