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

1. ASK

An Ethics Workup

EthicsA framework for applying ethical decision-making about health care treatment on another’s behalf.

The ability to workup the ethical aspects of a case is an essential part of clinical reasoning.  The emphasis in the ethics workup is on a sensible progression from the facts of the case to a morally sound decision. 

Using the five principal steps of the ethics workup, developed by the Georgetown University Center for Clinical Bioethics, guardians and health professionals holding a variety of philosophical and religious positions regarding ethics can share a basic framework for thinking about and discussing morally troubling cases:

Ethics Workup Step 1 Step 2 Step 3 Step 4 Step 5

Table of Contents

Read About the Ethics Workup:

  1. What Are the Facts?
  2. What Is the Issue?
  3. Frame the Issue.
  4. Identify and Weigh Alternative Courses of Action and Then Decide.
  5. Critique.

Case Analysis Scenarios: Five case studies related to people with significant intellectual disabilities requiring decisions for life-sustaining treatment.

  1. Mary Johns is a 50-year-old woman who has a profound level of intellectual disability and adaptive skills.
    Should you consent to a “do not resuscitate” order in the event her heart stops or she stops breathing? Should you consent to a gastric tube to provide her with nutrition?
  2. Robert Perkins is a 45-year-old man with Down syndrome.
    Should the guardian consent to a gastric tube to provide Mr. Perkins with nutrition?  How can the conflict between the caregiving staff and primary care physician be mediated?
  3. Louise Parker is a 65 year old woman with profound intellectual disability.
    Should you consent to renal dialysis?
  4. John Rosario is an 85-year-old man with profound intellectual disability.
    Should you consent to the antibiotic treatment?
  5. Denise Miller is a 62-year-old nonverbal female diagnosed with profound intellectual disability. 
    Should you consent to a gastric tube to provide her with nutrition?

1. What Are the Facts?

It is vitally important to clarify the facts of the case in
order to anchor the decision.  These facts are both medical and social.  For example,
both an estimate of prognosis and an understanding of the patient's home situation
are often relevant to an ethical decision.

Persons involved (who?)
Diagnosis, prognosis, therapeutic options (what?)
Patient preferences, beliefs, values (what?)
Chronology of events, time constraints on decision (when?)
Medical setting (where?)
Reasons supporting claims, goals of current care (why?)

Nurses and social workers may be instrumental in ensuring that the patient/family and other nonmedical health professionals understand the medical facts and that the health care team understands pertinent nonmedical information about the patient and family.


2. What Is the Issue?

Is there a conflict at the personal, interpersonal, institutional or societal level?  Is there a question that arises either at the level of thought or feeling?  Does the question have a moral or ethical component?  Why?  (e.g., does it raise issues of rights, moral character, etc.). The issue may not be ethical, but rather a diagnostic problem or a simple miscommunication. 


3. Frame the Issue.

Some guardians and health professionals will explore the issue using only one moral approach.  Others will eclectically employ a variety of approaches.  But no matter what one's underlying moral orientation, the ethical issue at stake in a given case can be framed in terms of several broad areas of concern, representing aspects of the case which may be in ethical conflict. 

It is therefore useful, if somewhat artificial, to dissect the case apart along the lines of the following areas of concern:

  1. Identify the appropriate decision maker(s).

    There are three rules of thumb for health care decision-making:


    • Patients with intact decision-making capacity make their own decisions.  Decisionmaking capacity entails the ability to 1) understand the information necessary to make this particular decision (task specific), 2) reason in accord with relatively consistent values, and  3) communicate a preference. 
    • Surrogates make health care decisions for incapacitated patients with a prior history of capacity by using the substituted judgment standard.  To the extent that the patient’s values and preferences are known they should direct decision-making.  The surrogate asks, “what would the patient choose if able to make and communicate a preference?” not “What would I choose if the choice were mine?
    • Surrogates of patients who never possessed decision-making capacity: infants, small children and profoundly retarded adults, make decisions using the best interests standard.  The surrogate asks, “Which option is most likely to benefit and to not harm the patient?” and considers relief of suffering, preservation and restoration of function, and the quality and extent of the life sustained
  2. Apply the criteria to be used in reaching clinical decisions.

    • The specific biomedical good of the patient:  One should ask,
      what will advance the biomedical good of the patient?   What are the
      medical options and likely outcomes?

      Determine the effectiveness of proposed interventions [A treatment is effective to the degree that it reverses or ameliorates the natural progression of the disease].  This is an objective medical determination to the degree that this is possible.
    • The broader goods and interests of the patient:  One should ask, what broader aspects of the patient's good, i.e., the patient's dignity, religious faith, other valued beliefs, relationships, and the particular good of the patient's choice, are pertinent to the decision at hand?

      Use a benefit-burden analysis to determine if the benefits of the proposed intervention outweigh the burdens.  This is a subjective determination, which can only be made by the patient or by those who know the patient well.
    • The goods and interests of other parties:  Health professionals must also be attentive to the goods and interests of others, e.g., in the distribution of resources.  One should ask, what are the concerns of other parties (family, health care professionals, health care institution, law, society, etc.) and what differences do they make, morally, in the decisions that need to be made about this case?  In deciding about an individual case, however, these concerns should generally not be given as much importance as that afforded the good of the individual patient whom health professionals have pledged to serve.

      The physician explains the medical options to the patient/surrogates and if indicated makes a recommendation.  The patient/surrogate makes an uncoerced, informed decision.  Limits to patient/surrogate autonomy include the bounds of rational medicine/nursing/social work, the probability of direct harm to identifiable third parties, and violation of the consciences of involved health care professionals.  In problematic cases the interdisciplinary team may meet to ensure consistency in their recommendations to the patient/surrogate(s).
  3. Establish the health care professionals’ and guardian’s moral/professional obligations.
    The primary object of all clinical decision making ought to be to secure the health, well-being or good dying of the patient and to do this while simultaneously respecting the integrity of the patient and all those involved in decision making and implementing the plan of care.

4. Identify and Weigh Alternative Courses of Action and Then Decide.

In clinical ethics, as in all other aspects of clinical care, a decision must be made.  There is no simple formula.  The answer will require clinical judgment, practical wisdom, and moral argument.  Guardians should work closely with health care professionals to authorize a decision that secures the best interests of the patient:  health, wellbeing, good dying. 

It is appropriate to ask clinicians for a recommendation based on their clinical expertise and experience.  This should then be weighed with the guardian’s knowledge of the patient and estimate of best interests. Since we live in a morally pluralistic world, good people can reason differently about what ought to be done. 

Ethically relevant considerations:

  • Balancing benefits and harms in the care of patients
  • Disclosure, informed consent, and shared decision making
  • The norms of family life
  • The relationships between clinicians and patients
  • The professional integrity of clinicians
  • Cost-effectiveness and allocation
  • Issues of cultural and religious variation
  • Considerations of power (Fletcher, Brody, Miller & Spencer)

Grounding and source of ethics:  philosophical (based in reason), theological (based in faith), socio-cultural (based in custom).


5. Critique.

It is important to be able to critique the decision that has been made by considering its major objections and then either responding adequately to them or changing one's decision. Some cases can even be taken to an ethics committee for further reflection.

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