Governance









White Paper on Surrogate Decision-Making and Advance Care Planning in Long-Term Care

Table of Contents
  1. Introduction
  2. Competence
  3. Decision-Making Capacity
  4. A framework for assessing decision-making capacity
  5. Surrogate Decision-Making
  6. Advance Directives
  7. Guardianship
  8. An Ethical Framework for Surrogate Decision-Making
  9. Decision-making by mentally incapacitated long-term care facility residents
  10. The hierarchy of medical decision-making for incapacitated nursing home residents
  11. Guidance for guardians and other surrogates about medical decision-making
  12. What surrogates and health care provider should expect from each other
  13. Some Important Clinical Issues
  14. Summary and Conclusions
  15. References

A framework for assessing decision-making capacity

The capacity to make decisions implies the ability to communicate choices, to understand relevant information, to appreciate the idea of consequences, and to manipulate information rationally.1,2 To make medical decisions, a person must be able to understand the nature of the illness for which a particular treatment is offered, the probable course of the illness without the proposed treatment, and the nature and consequences of treatment options, including risks and benefits. This understanding need not be physiologically sophisticated, nor should cognitively impaired patients or surrogate decision-makers be held to a higher standard than cognitively unimpaired patients who make decisions about their own medical care. When determining decision-making capacity, one should attempt to understand how the patient arrived at a decision and to recognize the influence of the patient's personal values.3

The ability of a cognitively impaired person to make decisions may wax and wane because of the primary cognitive impairment or because of acute illness that may be superimposed upon underlying impairment. Decision-making capacity may be affected by medications, anxiety, or even time of day; it is often task-specific and situational and will depend on the complexity, as well as the risks and benefits, of the diagnostic procedure or treatment in question. A patient may possess the capacity to consent or refuse to have analgesics for pain, for example, yet may lack the capacity to consent to a complex chemotherapy regimen for cancer.

Table 1 - A Framework for Assessing Capacity to Make Medical Decisions1,6

Can the person make and express personal preferences at all?

Can the person give reasons for the alternatives selected?

Are the supporting reasons rational in the sense that the person begins with a plausible idea and reasons logically from that premise to a result?

Can the person comprehend the personal implications, namely the probable risks and benefits, of the various choices presented and selected?

Decision-making capacity can be assessed through open-ended questions that take into account the gravity of the situation, the patient's cognitive status, and the complexity of the decision to be made. One might begin by asking a patient to describe his or her illness and the likely result of specific treatments or treatment alternatives. Decision-making capacity is suggested by consistent responses to questions that are phrased in different ways. Patient's performance may be improved by delaying the capacity decision, enhancing the disclosure of information with visual aids, addressing psychological issues, or facilitating family support. (Grisso and Applebaum)

Formal testing is not usually necessary to determine whether someone can understand the nature and consequences of a particular medical decision and to make and communicate that decision. No single test or instrument is adequate to determine decision-making capacity, and the results of any test need to be interpreted in the context of the whole clinical presentation. The mini-mental status exam (MMSE),4 for example, though helpful as a screening tool for detecting cognitive impairment, is neither sensitive nor specific for evaluating decision-making capacity, especially in the middle range of its scoring.5

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