Informed Consent in Incapacitated and Unbefriended Patients

Informed consent More than 80% of critical care patients lack the capacity to make decisions regarding the withholding or withdrawal of treatments. Some don’t have a surrogate decision-maker or an advance directive.

How should ICU clinicians make treatment decisions for these patients?

Shared decision-making is essential to deliver the highest value of care possible and its absence leaves much room for uncertainty. Hence, an official Society Policy Statement is necessary. It gives clinicians and administrators guidelines for fair and feasible procedures.

Explore the finer details of informed consent with Hospital Procedures Consultants.

What Happens in the Absence of a Decision-Making Authority?

Clinicians are encouraged to involve patients in the treatment process as they have preferences for their treatments, health conditions, and outcomes. When that option isn’t available, they can adopt one of three approaches:

  1. Providing treatment to prolong life even if the prognosis is dismal.
  2. Withholding or withdrawing treatment if they consider it potentially inappropriate, depriving the patient of the opportunity to survive.
  3. Delaying treatment until the patient regains capacity or a surrogate decision-maker is identified which can prolong pain and suffering.

But none of these lead to better patient outcomes. In fact, they have been associated with prolonged hospital stays and higher total hospital charges. Moreover, one in six patients suffered from a hospital-associated complication when clinicians waited for medical clearance.

How Policy Recommendations Can Help 

Nearly half of clinicians see at least one unrepresented patient every month. Since laws regarding decision-making tend to conflict with one another, the American Thoracic Society (ATS) established comprehensive guidelines to eliminate confusion in medical environments.

Recommendation #1

Institutions should take a proactive approach to treatment by promoting advance care planning and directives. While this may not always be possible in critical care, many patients can name a surrogate before losing capacity.

Promote the use of documents like the Patient Self Determination Act at the time of admission and before any non-emergency procedure. In addition, the patient must repeat their consent in front of a witness. This maintains a record of the patient’s preferences and values, ensuring that they’re well-represented even when incapacitated. 

For example, Jehovah’s Witnesses (JWs) cannot receive blood transfusions due to religious beliefs. This can be followed even when they’re incapacitated and clinicians cannot overrule them if they’re unbefriended.

Recommendation #2

Medical professionals should discuss the procedural indications, potential implications, benefits, alternatives, risks, and outcomes with the patient. 

If the patient doesn’t understand the medical terms, they could appoint a surrogate. However, if they show signs of delirium, it’s best to delay important decisions when possible.

Additionally, clinicians should perform a diligent search of the patient’s belongings and health records to see if they can identify family or close friends who can serve as decision-makers.

If the patient is still unrepresented, they should involve non-hospital individuals who know and care for the patient and are familiar with the patient’s values and preferences for more informed decision-making.

Since making decisions for someone you care about can be very stressful, it should be combined with a multicomponent family-support intervention by the interprofessional ICU team. Doing so can improve the quality of communication, shorten the patient’s stay in the ICU, and offer more patient- and family-centric care.

Recommendation #3

Institutions should facilitate decision-making for incapacitated and unbefriended patients by collaborating with different departments instead of leaving the decision-making solely to certain clinicians.

The latter could lead to:

Bias and conflicts of interest are another risk. Hence, it’s best to leave the decision-making to a diverse interprofessional, multidisciplinary team.

Recommendation #4

In the absence of clear directives or Provider Orders for Life-Sustaining Treatment, institutions should consider all relevant factors to ensure the clinical decisions are in line with the unrepresented patient’s values, goals, ethics, best interests, spiritual, and religious beliefs.

If this isn’t possible, Senior Attorney David Godfrey recommends protocols based on legal considerations.

Recommendation #5

Institutions should have a fair process to ensure procedural due diligence for unrepresented patients. Here are 8 steps for enacting this:

  1. Identify if a patient has the capacity to make their own decisions early. 
  2. The interprofessional, multidisciplinary committee convenes to confirm if the patient is unrepresented and to locate surrogates.
  3. The interprofessional, multidisciplinary committee gathers information about the patient’s prognosis, medical history, and goals of care. 
  4. The interprofessional, multidisciplinary committee should work with the treatment team to ensure that the decision is in the patient’s best interest.
  5. Achieve oversight to expedite procedures in time-sensitive situations. 
  6. Conduct a periodic retrospective review of unrepresented cases for efficient and consistent patient management while ensuring better outcomes.
  7. The hospital’s ethics committee should initiate a review if the recommended treatments are futile or potentially inappropriate.
  8. Obtain a legal guardian for ongoing cases. 

Recommendation #6

Institutions must employ due diligence for all unrepresented patients, even if some states allow them to operate with little to no oversight.

Goals of Healthcare Institutions’ Policy Statements

Policy statements promote 5 ethical goals for decision-making:

  • To protect highly vulnerable patients who cannot advocate for themselves due to the severity of their illness, the lack of trusted advocates, or owing to sedative and pain-relieving medications
  • To demonstrate respect for persons, to acknowledge their worth and dignity, and incorporate their values and goals into treatment decisions
  • To provide appropriate care that doesn’t worsen a patient’s condition
  • To safeguard against unacceptable discrimination from implicit bias
  • To avoid undue influence from competing obligations and financial or non-financial conflicting interests

Finally, a policy statement creates necessary procedural safeguards for healthcare institutions.

Minors and Informed Consent

Obtaining consent on behalf of minors is another important matter. Parental consent or consent from a legal guardian or surrogate may be essential for medical procedures and treatments among patients under 18 years old.

Since there are different laws for different situations, familial setups, types of emancipation, and levels of emergency treatment, it’s best to refer to specific cases (such as this one) for more informed medical decisions. 

To demonstrate how informed consent for minors comes into play, let’s consider a few scenarios clinicians may encounter. If a minor is currently or previously married or in a domestic partnership, the patient’s consent is sufficient. However, if the minor is unmarried and the parents are responsible for the expenses, the clinician can contact the patient’s parents for consent without first obtaining the minor’s consent.

In critical care situations, medical screening examinations and stabilization procedures can be performed without legal consent, however, there should be attempts to obtain it. Without consent, clinicians can still proceed with the treatment under emergency medical conditions because of the “emergency exception rule” or “doctrine of implied consent” outlined by the Emergency Medical Treatment and Labor Act (EMTALA).

This varies from state to state. For example, 15 states allow mature minors, or those aged 12 to 18 years old, to provide consent for medical procedures without the approval of their parents.

Learn More About Informed Consent at Hospital Procedures Consultants

Justice Benjamin Cardozo said, “Every human being of adult years and sound mind has a right to determine what shall be done with his own body.” 

However, this isn’t possible during emergencies when the patient is unconscious or incapacitated, which may lead to confusion. There are enduring and emerging challenges regarding informed consent that need to be considered. This includes the debate about which decision-maker approach is best for unrepresented patients, with some tiered approaches being hailed as the best option for certain jurisdictions and health institutions.

Discover more about informed consent by browsing the articles on our website. You can also enroll in our live and online courses to learn which procedures require consent.


P, Thaddeus M. B, Joshua. S, Shannon S. C, Lynette. B, Andrew B. D, Erin S. G, David M. G, Paula. K, Marshall B. L, Bernard. M, David C. R, Lynn F. S, Jamie L. S, Mark D. S, Renee D. S, Rebecca L. T, Anita J. T, J Daryl. W, Mark R. W, Eric W. W, Douglas B. Making Medical Treatment Decisions for Unrepresented Patients in the ICU. An Official American Thoracic Society/American Geriatrics Society Policy Statement. Practice Guideline Am J Respir Crit Care Med. 2020 May 15;201(10):1182-1192.
Grady, C. Enduring and emerging challenges of informed consent. Comment N Engl J Med. 2015 May 28;372(22):2172. doi: 10.1056/NEJMc1503813.
White, D. Angus, D. Shields, A. Buddadhumaruk, P. Pidro, C. Paner, C. Chaitin, E. Chang, C. H. Pike, F. Weissfeld, L. Kahn, J. M. Darby, J. M. Kowinsky, A. Martin, S. Arnold, R. M. A Randomized Trial of a Family-Support Intervention in Intensive Care Units. Randomized Controlled Trial N Engl J Med. 2018 Jun 21;378(25):2365-2375. doi: 10.1056/NEJMoa1802637. Epub 2018 May 23.
Schweikart, S. J.Who Makes Decisions for Incapacitated Patients Who Have No Surrogate or Advance Directive?. AMA J Ethics. 2019 Jul 1;21(7):E587-593. doi: 10.1001/amajethics.2019.587.
Benjamin, L. Ishimine, P. Joseph, M. Mehta, S. Evaluation and Treatment of Minors. Ann Emerg Med. 2018 Feb;71(2):225-232. Doi: 10.1016/j.annemergmed.2017.06.039. Epub 2017 Aug 11.
Consent Requirements for Medical Treatment of Minors- California Hospital Association.

Read all articles in Featured, medical procedures

Live Courses

Online Courses

Get Live & Online Courses Info

Please send me information on Live and Online Courses

* indicates required