Surrogate Decision-Makers

What is known

There is significant burden associated with the role of surrogate decision-maker. [1]

A systematic review examining how well surrogate decision-makers predicted the patient’s wishes showed that they were accurate in two thirds of the cases. It was suggested that 'accuracy' may not be the only benefit which is important to patients when relying on patient-designated surrogates. [2] 

Relationships between health care providers and family members, and amongst the family members themselves, have a significant impact on those who participate in end of life decision making. [3] An important area of potential conflict with surrogate decision-makers is in the care of critically children. [4]

In regard to the role and use of surrogate decision-makers, there are significant differences between practices in different national health systems, based on how much focus there is on patient autonomy, the amount of formal reliance on surrogate decision-makers, and the extent to which medical predominance in decision-making is regarded as acceptable or as paternalistic. [5] 

In some cultures family-centered decision-making is valued much more highly than patient autonomy. [6]

What it means in practice

  • The role of the surrogate decision-maker is to try to ensure that any decisions which are made about the patient’s care are consistent with what is known of the patient's own values and wishes, and they should adhere to any documented advance care plan. This may be difficult for family or friends who are dealing with their own impending loss.
  • Surrogate decision-makers experience considerable stress in their role of supporting the patient. In order to perform this role they need a very supportive relationship with the health care providers caring for the patient, and adequate information. Distress is often a factor in conflict over end-of-life decisions.
  • Whilst formal arrangements for proxy decision-making focus on named individuals who are appointed as surrogates, in practice many families make collective decisions. In some families, there can be resistance to disclosing diagnosis and prognosis to the patient, which makes advance care planning very difficult. Skilled and sensitive communication is required to deal with these conflicting perspectives, whilst at the same time ensuring that patients’ and families’ own values are respected.
  1. Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011 Mar;154(5):336-46.
  2. Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med. 2006 Mar 13;166(5):493-7. 
  3. Meeker MA, Jezewski MA. Family decision making at end of life. Palliat Support Care. 2005 Jun;3(2):131-42. 
  4. Masri C, Farrell CA, Lacroix J, Rocker G, Shemie SD. Decision making and end-of-life care in critically ill children. J Palliat Care. 2000 Oct;16 Suppl:S45-52. 
  5. Moselli N, Deberanrdi F, Piovano F. Forgoing life sustaining treatments: differences and similarities between North America and Europe. Acta Anaesthesil Scand. 2006 Nov;50(10):1177-86. 
  6. Thomas R, Wilson DM, Justice C, Birch S, Sheps S. A literature review of preferences for end-of-life care in developed countries by individuals with different cultural affiliations and ethnicity. J Hosp Palliat Nurs. 2008 May-Jun;10(3):142-63.

Guidelines

Overview articles (free full text)

GPs

Patients, Carers and Families

Last updated 15 February 2017