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

What surrogates and health care provider should expect from each other

Clinicians providing care for an incapacitated patient should discuss medical care with the patient's surrogate. Health care providers have responsibility for providing adequate information, as well as their own informed opinions, to surrogates.

Surrogates who do not know what the patient would have wanted should be guided by the principle of best interest of the patient, which in turn is based upon clinical evidence, concern for the patient's comfort and dignity, and an understanding of the risks, benefits, and burdens of each option for treatment. Understanding the patient's prognosis, including his or her life expectancy, may help guide decisions about treatment.

Surrogates should expect health care providers to discuss the options for treatment, including the benefits and burdens of each. Discussion should include a description of the natural course of the illness if untreated. Providers should also describe the medical reasoning underlying their recommendations, which should take into account the patient's prognosis, cognitive function, comfort, and well-being. Provision of written materials can be especially helpful for surrogates. Some jurisdictions may require that guardians obtain written documentation from a clinician before granting a request to withhold or withdraw life-saving treatment.

Health care providers should expect surrogates to understand their role, to be available for discussions, to respond promptly to requests for decision-making, and to be willing to formulate goals of care to avoid delays in appropriate treatment and to prevent initiation of undesired procedures and treatments. Health care providers and surrogates should be willing to avail themselves as necessary of ethics committees, ombudsmen, and other community resources that may help them to arrive at the best possible decisions. Ideally, clinicians and guardians are expected to make and communicate decisions with the same care that they would bring to decisions about a close family member of their own.

Table 3 - What Surrogates Should Expect From Health Care Providers
  • Accessibility
  • Communication about diagnosis, prognosis, available treatment options, and life expectancy
  • Description of the benefits and burdens of each treatment
  • Recommendations for treatment and discussion of the reasoning underlying the recommendations
  • Access to pertinent written education materials or journal articles
  • Written communication of recommendations about treatment and their justification, when requested
  • Access to ethics committees
  • Emotional support
Table 4 - What Health Care Providers Should Expect of Surrogates
  • Basic comprehension of the surrogate's role
  • Availability for discussion
  • Prompt response to requests for decision-making
  • Willingness to discuss overall goals of care
  • Willingness to collaborate in care planning
  • Willingness to make use of available community resources including ethics committees and ombudsmen when necessary.

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