title: Complexities in decision making for persons with disabilities nearing end of life.
abstract: Good end-of-life care requires that clinicians, families, and ethicists be aware of biases that influence patient cases, particularly in the acute care setting where the aim is primarily cure and return to optimal functional level. Persons with disabilities may pose unique challenges; their potential for quality of life is viewed through the lens of highly functional clinicians who might have a biased view of the disabled person's quality of life. The authors aim to present three categories of disability that do not claim to be absolute but rather offer clinicians and ethicists a lens through which to reflect on bias that unconsciously may influence their approach to the patient who is seriously ill and may be nearing the end of life. The categories include (a) a person who has lived with a disability from birth or early life, due to trauma or disease, and is now faced with a serious illness that requires that life-sustaining treatment; (b) the otherwise healthy person who acquires a disability through an acute event of disease or trauma and whose condition requires that life-sustaining treatment decisions be made; and (c) the person who has lived with a progressive chronic illness, such as lung or heart disease or amyotrophic lateral sclerosis, and may have gradually adjusted to disabilities imposed by the condition and now is faced with life-sustaining treatment decisions. The concept of inherent dignity (Pellegrino 2005) is suggested as a filtering lens in case consideration.
authors.affiliation: Patient Care Services, Massachusetts General Hospital, Boston, Massachusetts, USA.
authors.forename: Ellen M
authors.initials: EM
authors.lastname: Robinson
authors.forename: Marion
authors.initials: M
authors.lastname: Phipps
authors.forename: Ruth B
authors.initials: RB
authors.lastname: Purtilo
authors.forename: Angelica
authors.initials: A
authors.lastname: Tsoumas
authors.forename: Marguerite
authors.initials: M
authors.lastname: Hamel-Nardozzi
mesh_terms: D000368:Aged; D003657:Decision Making; D006233:Persons with Disabilities / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D026684:Personal Autonomy; D010551:Personality; D013727:Terminal Care / Q000941:ethics*