Facing the end of life is difficult for most people, including many health care providers. Even in the general population, most people do not have advance directives, have not appointed health care agents to speak for them when they lose the capacity to speak for themselves, and die in hospitals or nursing homes when they would prefer to die in their own homes. If they arrive at hospice care, their stay usually averages weeks, instead of the 6 months available to them under Medicare benefits, for example.
So it is not difficult to imagine the plight of those with intellectual and developmental disabilities who may be unable to make their wishes known regarding end-of-life treatments or who may be excluded from discussions about their terminal illness and the options available to them because (a) they are thought to be unable to express their values and wishes or (b) the quality of their life is not fully valued by others, who may even think that they would be better off dead.
In addition, there has been some conflict in the past between the intellectual and developmental disabilities community and the hospice and palliative care community, fostered by distrust by the former community based on problems accessing health care that was respectful of the abilities, values, and dignity of those with intellectual and developmental disabilities and equal in quality to the health care of the general population; legal barriers to decisions of families and physicians to limit life-sustaining treatments in this population even in the face of imminent death; and social activism on behalf of these individuals seeking aggressive treatment at the end of life based on a vitalistic philosophy.
Because most doctors have little experience caring for persons with intellectual and developmental disabilities, especially when they are dying, and because these persons, their families, and caregivers may have limited knowledge of hospice and palliative care, the need for this text, a first of its kind, is obvious. The audience should include physicians who care for persons with intellectual and developmental disabilities, especially those providing hospice and/or palliative care; and organizations/staff dealing with the health care of those with intellectual and developmental disabilities, including social workers, mental health counselors, chaplains, and even family caregivers. Medical students, who currently have limited education about treating patients with intellectual and developmental disabilities, would also find this text a good resource, especially when dealing with dying patients who have intellectual and developmental disabilities and are in hospital or out-patient settings. Palliative care physicians will benefit most from the chapters in this book in which authors deal with issues surrounding intellectual and developmental disabilities; and the intellectual and developmental disabilities community professions will benefit from chapters on medical treatments at the end of life.
The model of hospice and palliative care is one of interdisciplinary care of individuals who are terminally ill, with attention to medical, emotional, social, and spiritual needs of the dying. In actuality, this type of interdisciplinary care would benefit most medical patients at any time of their life.
Individual chapters of this book, which were written by experts in their fields, include historical and legal aspects of care of those with intellectual and developmental disabilities; medical conditions and their treatment; ethical concerns; social, emotional, and spiritual considerations; and a listing of available supports and resources. As the editors acknowledge, there is some repetition of the history, ethical issues, and legal aspects of medical care of those with intellectual and developmental disabilities. There are interesting and relevant case histories and useful tables summarizing information.
Most helpful to me, as a palliative-care physician, is the emphasis on the fact that persons with intellectual and developmental disabilities now approach the general population in longevity, and they develop the same chronic and terminal illnesses in addition to problems associated with their disability. Also, these persons often have an awareness of their own dying and the death of others and may have unmet needs of grieving. The ability of many of these individuals to communicate their wishes, to assent, and sometimes to give informed consent to their treatments means they should receive truthful explanations of their illnesses at a pace and in terms they can understand, but physicians may need the help of family and other caregivers to accomplish this.
Every effort should be made to have all people, including those with intellectual and developmental disabilities, appoint a health care agent who can carry forth their wishes and negotiate treatments with physicians in light of the patients' values, including their spiritual beliefs, when they no longer have the capacity to make known their own wishes. The risks for persons with intellectual and developmental disabilities at the end of life resemble those of the general population (i.e., not receiving treatments that could prolong a life of quality to them or receiving aggressive treatments that cause them great harm and little benefit).
An approach mentioned several times by these authors is to establish the baseline condition of a person with intellectual and developmental disabilities and ask whether that person can be returned to that baseline by treatment or whether an even lower level or performance would be acceptable to that person. Although it is important to foster and respect autonomous decisions of those with intellectual and developmental disabilities, often decision making is more relational and involves families, caregivers, and health care providers.
Some of the concepts in this text about caring for terminally ill patients with intellectual and developmental disabilities are abstracted from the care of the general population of dying patients. To date, there is scant research on the medical care of dying persons with intellectual and developmental disabilities, and more needs to be done. Some of the research about the social and emotional needs of this population would lead to better health care for all people with terminal illness. Successful care of terminal patients with intellectual and developmental disabilities, although more challenging because of communication problems (on both sides), will hopefully lead to more thoughtful and personal care of the dying population in general, but the greatest need now is to offer the option of palliative/comfort care to those with intellectual and developmental disabilities who are dying, whether or not they seek aggressive treatment aimed at a “cure,” so they may “die well,” especially when curative treatments fail, cause more harm than benefit, or are not desired by patients or those who represent their wishes and values. Treating dying patients who have intellectual and developmental disabilities with the dignity they deserve is the key.
This book is a groundbreaking collection of chapters that I highly recommend to physicians and other providers of care near the end of life as well as to caregivers of people with disabilities.