Complex Moral Issues: End-of-Life Decisions for People with Significant Intellectual Disabilities



  • Advance directive: Instructs health care decisions when the person is terminally ill, incapacitated, or unable to communicate; can be instructional in nature (directing specific medical decisions) or proxy (authorizing a particular individual to make medical decisions); examples include a living will and durable power of attorney.
  • Allow Natural Death (AND) Orders: Person intends for nature to take its course without CPR interventions because they are unlikely to succeed.


  • Baseline: When used in making a quality-of-life determination, a proxy might consider how the person’s physical, mental, and emotional state prior to the onset of the new medical condition allowed him/her to live; prior desires, interests, preferences and quality of life could also help inform the baseline determination.
  • Best interest standard: Standard for surrogate decision-making that is generally recommended for people who have never been competent or have unknowable wishes; takes into account the net benefits and net costs to the person of all the viable alternatives
  • Blood transfusion: A blood transfusion is a safe, common procedure in which blood is introduced into the body through an intravenous (IV) line inserted into a blood vessel. Blood transfusions are used to replace blood lost during surgery or a serious injury. A transfusion also might be done if the body can't make blood properly because of an illness.


  • Capacity: The ability to understand the nature and consequences of one’s decisions.  The person must be able to understand relevant information, appreciate the situation and grasp its importance for the person’s life, reason adequately, and communicate a stable and clear choice. The threshold for decisional capacity can vary, depending on the decision at hand.
  • Cardiopulmonary Resuscitation: Restoration of cardiac output and pulmonary ventilation following cardiac arrest and apnea, using artificial respiration and manual closed-chest compression or open-chest cardiac massage.
  • Chemotherapy: Treatment of disease by means of chemical substances or drugs; usually used in reference to neoplastic disease.
  • Competence: A determination by a court that a person is or is not capable (lacks the capacity) of handling his/her own affairs.


  • Dialysis: A method of artificial kidney function (can be short or long term).
  • Do Not Hospitalize (DNH) Order: Medical orders signed by a physician to instruct health care providers not to transfer a patient from a setting such as a nursing facility or the person’s home to the hospital unless needed for comfort care. (Note: Specific wording may be state-specific.)  
  • Do Not Resuscitate (DNR): Part of an advance directive that instructs medical personnel not to have cardiopulmonary resuscitation (CPR) done if the heart stops or breathing ceases. One can use an advance directive form to make this request and should also tell the doctor to put a DNR order in the medical record. DNR orders are accepted by doctors and hospitals in most jurisdictions, including all states in the U.S.


  • Gastric tube: Tube placed in the stomach for prolonged administration of food, fluids, and medications
  • Guardian: A fiduciary named by court order to make personal decisions for the individual – can be general (often called a plenary guardian) or limited in scope.
  • Guardian ad litem: Court-appointed individual who is charged to make an impartial inquiry and report back to the court.


  • Hospice: A special concept of care, focused on providing comfort, relieving pain, and offering support for persons with life-limiting health conditions and families.  Hospice provides pain and symptom relief, as well as emotional and spiritual support, typically in the last six months of life. (Hospice Foundation of America)

    The National Hospice and Palliative Care Organization describes hospice as the model for quality, compassionate care for people facing a life-limiting illness or injury.  Hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes. Support is provided to the patient's loved ones as well.  At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity and that our families should receive the necessary support to allow us to do so.

    Hospice focuses on caring, not curing and, in most cases, care is provided in the patient's home. Hospice care also is provided in freestanding hospice centers, hospitals, and nursing homes and other long-term care facilities.  Hospice services are available to patients of any age, religion, race, or illness. Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations.  Available at: National Hospice and Palliative Care Organization


  • Intellectual disability: Intellectual disability is a disability characterized by significant limitations both in intellectual functioning (reasoning, learning, problems solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability originates before the age of 18. The following five assumptions are essential to the application of this definition:
    • Limitations in present functioning must be considered within the context of community environments that are typical for the individual’s age peers and culture.
    • A valid assessment must consider cultural and linguistic diversity as well as differences in communication, sensory, motor, and behavioral factors.
    • For each person limitations often co-exist with strengths.
    • An important purpose of describing limitations is to develop a profile of needed supports.
    • With appropriate personalized supports over a sustained period, a person with an intellectual disability will grow and develop improved life skills and abilities. (Modified from Intellectual Disability: Definition, Classification, and Systems of Supports, 11th edition. The AAIDD Ad Hoc Committee on Terminology and Classification, 2010.)
  • Invasive Procedure: A medical procedure that invades (enters) the body, usually by cutting or puncturing the skin or by inserting instruments into the body.


  • Mechanical Ventilation:  Any mechanically assisted breathing, employing either positive- or negative-pressure devices. Some positive-pressure devices require intubation of the trachea, and others require only a mask applied to the mouth or nose. For the past several decades, the standard way of ventilating a patient with respiratory failure mechanically has involved intubation of the trachea and either pressure- or volume-limited application of positive pressure to the lungs through an endotracheal tube; currently, the need for intubation in any case is coming into question and many patients experiencing chronic respiratory failure can be adequately ventilated by noninvasive devices.
  • Medical Orders for Life Sustaining Treatment (MOLST) forms: A portable and enduring medical order form covering options for cardiopulmonary resuscitation and other life-sustaining treatments. The medical orders are based on a patient’s wishes about medical treatments.

    MOLST Legal Requirements Checklist for Individuals with Developmental Disabilities: This is a form required by the New York State Office for People with Developmental Disabilities (OPWDD). The form documents a series of steps that need to be taken before a MOLST can be executed on behalf of someone who receives services from this state office. The assurances include information about the surrogate decision-maker, specific life-sustaining treatment(s) to be withheld, witnesses to the decision-making, confirmation of lack of capacity, determination of medically necessary criteria and notification to the OPWDD.
  • Medications Used  During Palliative Care: Regular, ongoing assessment of pain, non-pain symptoms (including but not limited to shortness of breath, nausea, fatigue and weakness, anorexia, insomnia, anxiety, depression, confusion, and constipation), treatment side effects, and functional capacities should be documented through a systematic process. Validated instruments, where available, should be utilized. Symptom assessment in adults with cognitive impairments should be performed by appropriately trained professionals with appropriate tools. (National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care. 2nd ed. Pittsburgh (PA): National Consensus Project for Quality Palliative Care; 2009.


  • Nasogastric Tube: Flexible tube passed through the nose and into the gastric pouch to decompress the stomach.


  • Palliative Care: Treatment that enhances comfort and improves the quality of a person’s life during the last phase of life. No specific therapy is excluded from consideration. The test of palliative care lies in the agreement between the person, physician(s), primary caregiver, and the hospice team that the expected outcome is relief from distressing symptoms, the easing of pain, and/or enhancing the quality of life. The decision to intervene with active palliative care is based on an ability to meet stated goals rather than affect the underlying disease. A person’s needs must continue to be assessed and all treatment options explored and evaluated in the context of the individual’s values and symptoms. The person’s choices and decisions regarding care are paramount and must be followed. (The National Hospice and Palliative Care Organization Standards of Practice for Hospice Programs)
  • Palliative Sedation (Proportionate Palliative Sedation (PPS)): Uses the minimum amount of sedation necessary to relieve refractory physical symptoms at the very end of life. To relieve suffering may require progressive increases in sedation, sometimes to the point of unconsciousness, but consciousness is maintained if possible. 
  • Palliative Sedation to Unconsciousness (PSU): Sedation with the intended end point of unconsciousness.
  • Percutaneous Endoscopic Gastrostomy (PEG) tube: Percutaneous endoscopic gastrostomy (PEG) is a surgical procedure for placing a tube for nutrition without having to perform an open operation on the abdomen (laparotomy). It is used in people who will be unable to take in food by mouth for a prolonged period of time. A gastrostomy, or surgical opening into the stomach, is made through the skin using a flexible, lighted instrument (endoscope) passed orally into the stomach to assist with the placement of the tube and secure it in place.
  • Physician’s Order for Life Sustaining Treatment (POLST): A tool for translating a patient’s goals of care into medical orders so that they are easily located and portable across care settings. POLST is not just a specific set of medical orders documented on a form; it is also an approach to end-of-life planning based on conversations between patients, loved ones, and medical professionals. The POLST Paradigm is designed to ensure that seriously ill patients can choose the treatments they want and that their wishes are honored by medical providers. A regarding POLST is reformatted from the written testimony.

    FAQs on POLST as published in Health Care Ethics USA, a publication of the Catholic Health Association. This is reformatted from the written testimony Renewing the Conversation: Respecting Patients Wishes and Advance Care Planning by Amy Vandenbroucke, JD, Executive Director, National POLST Paradigm Program, offered to the Senate Special Committee on Aging at a June 26, 2013 Hearing.
  • Power of Attorney: A Power of Attorney is a document that gives someone the legal authority to act for you.  If you give a Power of Attorney, you are called the principal and the person you give it to is called the agent or the attorney-in-fact.  A Durable Power of Attorney for Health Care is a document that lets you name someone else to make decisions about your health care in case you are not able to make those decisions yourself.
  • Pressure Ulcers: A pressure ulcer is localized injury to the skin and/or underlying tissue usually over a bony prominence, as a result of pressure, or pressure in combination with shear. A number of contributing or confounding factors are also associated with pressure ulcers; the significance of these factors is yet to be elucidated. Pressure ulcers are classified by a staging system with I being the least invasive and IV being the most invasive including exposed bone, muscle and/or tendon. (The National Pressure Ulcer Advisory Panel)


  • Quality of Life: Determination made from first-person or third-person perspective on how well someone’s life is going along a spectrum; can incorporate numerous factors, such as whether desires are generally being satisfied and the amount and duration of pain experienced.


  • Radiation Therapy for Cancer:
    • Radiation therapy uses high-energy radiation to kill cancer cells by damaging their DNA.
    • Radiation therapy can damage normal cells as well as cancer cells. Therefore, treatment must be carefully planned to minimize side effects.
    • The radiation used for cancer treatment may come from a machine outside the body, or it may come from radioactive material placed in the body near tumor cells or injected into the bloodstream.
    • A patient may receive radiation therapy before, during, or after surgery, depending on the type of cancer being treated.
    • Some patients receive radiation therapy alone, and some receive radiation therapy in combination with chemotherapy.


  • Substituted Judgment Standard: Requires guardian to learn as much as possible about the lifestyle and preferences of the person. Uses person’s values/beliefs as a guiding element. The guardian makes decisions that reflect what the person would have decided if he or she were capable of making the decision.
  • Surrogate: A surrogate is a person who acts on behalf of another.  In medical decision-making, a surrogate may serve once a person has been certified as incapacitated to make decisions on his or her own behalf.  Who is first in line to serve as surrogate depends on state laws and court decisions. Examples: family members, spouses, nursing home staff, and guardians ad litem.


  • Terminal Dehydration: Any disorder of salt and water depletion that occurs in the last several days of life as the patient loses the desire or ability to take food and fluids (Meares, 1994; Musgrave, 1990).
  • Terminal Weaning: Removal of mechanical ventilation, which is performed by gradually reducing the fraction of inspired oxygen and/or mandatory ventilator rate, leading to the development of hypoxemia (low oxygen rate in the arterial blood) and hypercarbia (abnormally high carbon dioxide), when the patient is not expected to survive. (Textbook of Palliative Nursing, Department of Nursing Education and Research City of Hope National Medical Center Betty R. Ferrell Research Scientist,Supportive Care Program Nessa Coyle Director, Pain & Palliative Service Department of Neurology Memorial Sloan-Kettering Cancer Center Oxford University Press, Nov 10, 2005.)

    The weaning decision continuum incorporates: (1) when and how to begin the weaning process, (2) how to select therapies to assist with difficult weaning and chart progress during weaning, and (3) when to stop weaning if progress is no longer being made. An inherent assumption of this model is that each patient will display unique responses to the weaning process. (The Third National Study Group on Weaning From Mechanical Ventilation)
  • Total Parenteral Nutrition (TPN):  Nutrition maintained entirely by central intravenous injection or other non-gastrointestinal route.


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