All persons with intellectual, developmental and other disabilities are valuable and deserve respect consistent with human dignity throughout their lifetime. Every person’s ability or disability cannot be a deciding factor in end-of-life decisions.
Resources for caring for each person at the end of life must be appropriate, sufficient, and available without discrimination.
In addition to palliative care needs such as pain management, spiritual, and emotional needs, people with disabilities often face additional challenges.
They may:
- Have more complex physical and mental health problems
- Be more socially isolated and vulnerable
- Have challenges in accessing health care and understanding their diagnoses and treatment options
- Be diagnosed with a terminal illness at a later stage and have a poorer prognosis as a result
- Have a greater risk of dementia (i.e., people with Down Syndrome are more likely to develop dementia at a younger age than the general population)
- Find it difficult to understand information about their health and treatment
- Find it challenging to communicate with others how their symptoms impact them
- Struggle to express their wishes about their care.
People with IDD need advocacy for a variety of supports, prior to and at end-of-life, including:
- Education and resources to understand their diagnoses and treatment options, and to clarify and carry out their wishes
- Ongoing connection with the people who matter to them most
- Care and support from providers who can meet complex needs and who specialize in spiritual, medical, psychological, palliative, pastoral care, etc.
- Support to remain in the environment of their choice throughout their illness and death.
It is The Arc New York’s position that:
- End of life is defined as the last 6 months of life, consistent with the current standard in the public health law. Individuals may be considered to be at the end of life when:
- They have a terminal condition that is progressive, irreversible, or incurable (such as late-stage Alzheimer’s disease or terminal cancer);
- Death is expected in less than 6 months;
- They are permanently unconscious; and
- Treatment would not extend the individual’s life.
- Individuals are not at the end of life when they are living in a stable condition that requires significant life-sustaining treatment (such as a mechanical ventilator or a feeding tube) and wish to continue receiving such treatment.
- Discussions about care at the end of life should occur, if possible, prior to being at the end stage of life. These discussions should include statements about what care the person would like to receive if he or she were in one of the end-of-life conditions described above. Those who are closest to the person (ordinarily the family, legal guardian, trusted caregivers, nurses, friends, and others) are best able to identify the person’s preferences when the person is unable to express them directly.
- Legal or other professional assistance should be used to develop living wills, health care proxies, and other such statements about personal preferences. These statements should be updated periodically taking into account the individual’s wishes, medical advances, technological improvements, and changing perspectives during one’s lifespan.
- Withdrawing or withholding care may be appropriate in some situations, but should not itself imply lack of respect for the importance of that person’s life. Withholding or withdrawal of life-sustaining treatment (including nutrition and hydration) should be consistent with the persons end of life decisions
- The principles of informed consent, as contained in statute, require that decision-makers have:
- The legal authority to provide consent if the person does not have the capacity to provide consent
- The legally determined surrogate is authorized to make treatment decisions in accordance with the Family Health Care Decisions Act, SCPA Section 1750-b Health Care Decisions for People with I/DD.
- All of the information needed to make a decision
- The ability to assess the information adequately
- Freedom from undue influence by others
- Guardians and healthcare proxy representatives must always provide the person with the information they need to express their preferences, must seek to determine the uncoerced, authentic voice of the person and, failing that, must seek what is in the person’s best interest.
- The legal authority to provide consent if the person does not have the capacity to provide consent
- The wishes of persons who have clearly and competently expressed them should be honored by caregivers and health care providers.
- All service providers providing services must be knowledgeable and well-versed of all laws, regulations, statutes and policies that apply to end-of-life decisions.
- People with IDD may benefit from ethics committees and/or judicial review when policies are unclear or there is dispute among providers, family members, surrogates, etc.
- Instructional strategies and training materials should be provided that will assist individuals with intellectual, developmental or other disabilities to access relevant information, analyze it effectively, and utilize it to assess options and make choices.
- Religion and spirituality of the person are important and must be respected. Their religious or spiritual preferences should be identified or articulated by the individual or his or her loved ones. Spiritual or pastoral care must be offered when it is desired.
- Health professionals need to take time to understand the way in which an individual communicates, to ensure that signs and symptoms are identified correctly and to address underlying worries in a sensitive manner. They also need to be aware of consent issues, and to ensure that the patient is the primary decision maker where capable and central to discussions related to care. This can only be achieved if everyone involved in the patient’s care, including the family, care providers and advocates, share information and co-operate closely.
- Needed treatment should be available in the most appropriate context, taking into account the person’s preferences and health care needs. People should not be required to live in a nursing home in order to receive care that could be provided in a more natural setting such as the person’s home
- Hospice care at the end of life shall be available when it is appropriate. Adequate pain relief is essential to alleviate and prevent suffering at the end of life.
- The legally determined surrogate (parent, spouse, etc.) or court-appointed guardian is authorized to make treatment decisions when the person is not able to make these decisions directly in accordance with the Health Care Decisions Act for Persons with Mental Retardation and the Family Health Care Decisions Act.
- Family and caregivers are an integral part of the end-of-life process and should not be forgotten. They can provide essential physical, emotional, and spiritual support for their loved one.
- Prompt hospital ethics committee and/or judicial review is appropriate and necessary when application of this policy is unclear or in dispute among health care providers, family members, guardians, friends and other significant caregivers. All other avenues such as the use of internal Ethics Committee, Guardianship Committee or Surrogate Decision-Making Committee should be exhausted.
