Patient / Surrogate Decision-Making

by Shaylona Kirk, MD

The following is an ABN Literature review as of October, 2010 and is provided as a general overview of the topic and should not be interpreted as legal advice on surrogate decision-making.

Authority for Self-Determination and Surrogate Decision-Making

The Patient Self-Determination Act was passed by the U.S. Congress in 1990. This law makes it clear that patients have the right to make decisions regarding their medical care. It also guarantees patients the right to designate a surrogate (another person) to make treatment decisions for them if they become unable to make their own decisions.

The Act requires that health care facilities discuss advance healthcare directives with patients upon admission or the initiation of treatment. This law, however, does not apply to individual physicians. To comply with the law, most health care institutions provide patients written material about patient health care decision-making rights and facility policies regarding advance directives on admission. Patients are asked if they have an advance directive and the answer is documented in the patient’s record. Healthcare facilities must educate their staff about the requirements for advance directives.

In Arizona, of the 45,128 people who died in 2008, 32,806 died in either a hospital or some type of long-term-care facility (Arizona Department of Health Services). Since the vast majority of deaths in Arizona occurred in an institution, patients, families and care givers should anticipate that advance directives and surrogates may guide care for many individuals toward the end of life. (Read an ABN discussion on Advance Directives.)

Surrogate Decision-Making in Arizona

Surrogate medical decision-makers for incapacitated patients may be:

  1. designated by the patient (a durable power of attorney for healthcare or healthcare proxy);
  2. appointed by the court (a guardian); or
  3. a statutory surrogate selected according to state protocol in the following order:
  • spouse
  • adult child
  • parent
  • domestic partner
  • sibling
  • close friend

If after "reasonable effort" none of these individuals can be located or if they decline to make the decisions, the attending physician may make the decision after consulting with the ethics committee, or if that's not possible, after consulting with another physician who concurs with the treatment decision (Arizona Revised Statutes {ARS} 36-3231 ).

Medical Support of Decision Making for Incapacitated Patients

The American Medical Association (AMA) Code of Medical Ethics states that “there are two basic principles that should guide any treatment decisions: respecting and promoting patient autonomy and fostering the well-being of the patient” (AMA 3). Three standards have been established to guide decision-making for incompetent patients in light of these principles: 1) the documented advanced directive, 2) substituted judgment, and 3) the best interest standard (AMA 3).

Documented Advanced Directives

Documented advanced directives allow patients to retain control over healthcare decisions in anticipated situations, even after they become incompetent, by means of a living will that provides specific instructions. In addition, the patients may designate healthcare proxies (surrogates) whom they trust to interpret their wishes in unforeseen circumstances.

Substituted Judgment

If a patient does not have documented treatment preferences, then decision-making should proceed by substituted judgment, in which the surrogate is asked to make a decision in the manner the patient would, taking into account the patient’s previously expressed preferences and values. The purpose of the substituted judgment standard is to extend patient autonomy. The surrogate decision maker is expected to rely on known preferences and values of the patient to make medical decisions. The effectiveness of this standard relies on the ability of the surrogate to accurately predict the patient’s preferences.

Best Interest

If there is no basis for interpreting how the patient would have decided, surrogates should instead base treatment decisions on what would be in the patient’s best interest, or what would most likely promote the well-being of the patient. Best interest is also the standard used for adult patients with cognitive issues that prevented them from ever having decision-making capacity.

Surrogate Decision-making: Reducing Stress and Enhancing Accuracy

Improving Communication

Studies have shown that families, including surrogate decision-makers, are generally not well-informed about the medical decisions that need to be made. The time spent providing information to family members is insufficient and physicians and nurses often lack the skills to communicate complex medical information in a way the family can understand. Many of the problems that arise during surrogate decision-making situations may be resolved by improved communication.

Arnold and Kellum suggest two interventions that will improve family (surrogate) decision-making: regular family meetings and written informational or decisional aids. Families can remain informed and have questions answered when they have regular meetings with the patient’s health care provider. These meetings are especially important upon admission of the patient, when there is a change in the patient’s status, or when the goals of care need to be re-evaluated. Regular meetings may decrease instances of conflict between family members and caretakers as well as between family members themselves. Physicians often report that they lack sufficient time to communicate effectively with families. In these instances, written informational and decisional aids may help reduce the communication time burden. When physicians meet with family members or other surrogates, they can build upon the written information that was given to the family previously and answer any remaining questions (Arnold & Kellum S351-S352).

When a patient becomes incapacitated and it is necessary for the surrogate to step in as decision-maker, the surrogate should be given respect and support. When guiding a surrogate through the decision making process it may be helpful to frame questions in such a way as to encourage the surrogate to think about what their loved one would want. For instance, instead of asking, “What do you want us to do for your mom?” the surrogate could be asked, “What do you believe your mom would choose if she could speak for herself?” or, “If your mom were sitting here now, what do you think she would say?” Empirical data have suggested asking the surrogate what their loved one would want results in more accurate predictions of the patient’s wishes (Arnold & Kellum S350). When techniques such as this are found to be helpful, providers should be educated to incorporate the techniques into their practice.

Effective communication between physicians and surrogates is essential for appropriate decision-making and for the well-being of the surrogate. Many surrogates experience symptoms of Post Traumatic Stress Disorder (PTSD) after going through a rough decision-making process, and helpful clinicians may reduce some of these deleterious after-effects. Clinicians should remember to support the surrogate and family as well as the patient. This support can begin before the patient is incapacitated if the clinician includes future surrogate decision-makers in advanced care planning discussions that they have with their patients. During decision-making, clinicians can lessen the burden on surrogates by helping them see that their role is to help the clinician best understand what outcomes of treatment align best with the patient’s goals rather than assume full responsibility for treatment decisions (Vig 1278).

Improving the Accuracy of Surrogate Decisions

Studies have shown that surrogates are frequently inaccurate when making predictions about the wishes of the patient. (Shalowitz, Garrett-Mayer, & Wendler, “The Accuracy” 493). A systematic review of studies providing empirical data on how accurately surrogates predict patients’ treatment preferences was published in 2006. The review included 16 studies which presented hypothetical situations to surrogate-patient pairs and analyzed the paired responses. It was found that overall, surrogates predicted patients’ treatment preferences with 68% accuracy. However, despite the fact that surrogates fail to predict patients’ end-of-life treatment preferences accurately in one third of cases, surrogates are still more accurate than physicians at predicting patients’ preferences (Shalowitz, Garrett-Mayer, & Wendler, “The Accuracy” 496).

It is commonly thought that patient designation of a surrogate and prior discussions of treatment preferences between the patient and surrogate are factors that improve surrogate accuracy. The Shalowitz review compared accuracy of patient-designated vs. legally assigned, next-of-kin surrogates and found that there was no significant difference in accuracy of surrogate decisions between the two. Prior discussion of patient treatment preferences was also not shown to significantly improve accuracy (Shalowitz, Garrett-Mayer, & Wendler, “The Accuracy” 496).

The recognition that the substituted judgment standard may not always reflect the wishes of the patient has encouraged the development of approaches which can enhance the accuracy of these decisions. One approach is based on a narrative model, and focuses richly on respect for persons rather than more narrowly on autonomy. Surrogates are asked to consider the life story of the patient, share their reflections with the doctors, and then together the surrogates and doctors can make decisions that seem consistent with the patient’s previous choices and experiences (Torke, Alexander & Lantos 1515).

Another approach uses a population-based treatment indicator. Relevant information about a patient is entered into a computer program, and the program generates statistics about what people with similar traits would choose in similar circumstances. A preliminary model of a population-based treatment indicator was made. A study was done comparing how accurately the model indicator predicted patients preferences versus how accurately real-life surrogate decision-makers predicted patients’ preferences. It was shown that the model indicator was as accurate as surrogates at predicting patient preferences, and the authors assumed it would be more accurate than surrogates once more data were included. This indicator might be used to supplement the surrogate decision-making process, replace the surrogate decision maker, or as an option patients request on their advanced directives. It still needs to be determined if patients would even want an option like this or if it would meet legal requirements for designated surrogacy (Shalowitz, Garrett-Mayer, & Wendler, “How Should Treatment Decisions Be Made” 423-426).

Provider Roles with Surrogates

The Role of the Physician

Physicians do not generally receive formal training about how to navigate interactions with surrogate-decision makers. There is debate about what the appropriate role of the physician is in these situations. The AMA says that “physicians should offer relevant medical information and explanations as well as medical opinions based on professional expertise” (2).

A study was undertaken to determine how responsibility is balanced between physicians and surrogates for life-support decisions. Four distinct physician roles were identified in these situations:
“1) informative role in which the physician provided information about the patient’s medical condition, prognosis, and treatment options but did not elicit information about the patient’s values, engage in deliberations, or provide a recommendation about whether to continue life support;
2) a facilitative role, in which the physician refrained from providing a recommendation but actively guided the surrogate through a process of clarifying the patients’ values and applying those values to the decision;
3) a collaborative role, in which the physician shared in deliberations with the family and provided a recommendation; and
4) a directive role, in which the physician assumed all responsibility for, and informed the family of, the decision” (White 743).

The authors of this study believe that since individuals and situations are unique, physicians should remain flexible in their approach to these cases. No physician in the study asked the family what role they preferred the physician to play in the decision-making process. It may be more respectful of surrogates if physicians asked and responded to the surrogates’ preferences for decision-making. In addition, clinicians need to learn the necessary techniques to adapt their approach to the needs of the surrogate (White 749).

In a study about what factors help or hamper surrogate-decision making, it was found that helpful clinician characteristics included: availability, frank sharing of information, and offering of treatment recommendations. In addition, surrogates found decisions easier to make and consequences easier to deal with when they received positive reinforcement for their decision-making and felt respect from the clinicians. When there were too many clinicians involved in the case and in the decision-making process, surrogates found the process more difficult (Vig 1276).

In general, physicians should respect a surrogate’s decision when it is based on “well-reasoned substituted judgment or the best interest standard.” If a physician does want to challenge a surrogate’s decision, the ethics committee should be consulted, and if the dispute is still not able to be resolved, it should be referred to the courts (AMA 6).

The Role of Other Healthcare Providers

A primary role for nurses in advanced care planning is that of educators. Nurses are able to provide detailed information about the purpose of advanced care planning documents as well as about what to expect when choosing a treatment option. Due to the amount of time nurses spend with the patient, and with the patient’s family, nurses are well-positioned to initiate advanced care planning discussions with patients and their families and surrogate decision-makers. In many instances, advance directives are a routine part of the admission procedures and routine nursing care that nurses perform. Nurses can also continue discussions of advanced care throughout the patient’s stay, when the patient is more comfortable to talk about the topic or when changes in medical status occur. Social workers may also be involved in advanced care planning discussions and can aid in ensuring a productive conversation between the patient, the family members, and other providers (Black 178-180).

End-of-life decisions are dependent upon multiple beliefs and influences, so it is important that patient values are elicited and that that health care providers and surrogate decision-makers are present for these discussions. Nurses and other health care professionals can encourage the patient to have these discussions and can ensure that the patient has the information needed in order to choose a surrogate.

Nurses and social workers may also serve as patient advocates, promoting the patient’s wishes with family members and healthcare providers. These health care professionals can ensure that health care surrogates are aware they have been appointed and are informed of the patient’s expressed preferences. If the chosen surrogate and the patient’s family members are aware of the patient’s preferences before the patient becomes incompetent, this may preclude later disagreement and problems. Nurses are able to communicate with surrogates about the patient’s status and ensure that the surrogates understand their role. Nurses can also help clarify medical information or other questions the patient or surrogate may have concerning the advance directives (Black 180-182).

References

AMA – Surrogate Decision Making
http://www.ama-assn.org/ama1/pub/upload/mm/369/ceja_4a01.pdf

Arizona Revised Statutes section 36-3201.
http://www.azleg.state.az.us/FormatDocument.asp?inDoc=/ars/36/03201.htm&...

Arizona Revised Statutes section 36-3231
http://www.azleg.state.az.us/FormatDocument.asp?inDoc=/ars/36/03231.htm&...

Patient Self Determination Act http://www.fha.org/acrobat/Patient%20Self%20Determination%20Act%201990.pdf

Nationwide Surrogate Consent Statutes
http://www.abanet.org/aging/legislativeupdates/pdfs/Famcon_Chart.pdf

Arizona Department of Health Services. “Table 2A-4: Age-Specific Mortality by Place of Death and Decedent Status.” Arizona Health Status and Vital Statistics 2008 Report. Bureau of Public Health Statistics, Arizona Department of Health Services, 2009.
http://www.azdhs.gov/plan/report/ahs/ahs2008/t2a.htm

Arnold, Robert M. and Kellum, John. “Moral Justifications for Surrogate Decision Making in the Intensive Care Unit: Implications and Limitations.” Critical Care Medicine 31 (2003): S347-S353).
This article discusses the moral justifications for family members being the surrogate decision makers and the limitations they face. The authors also suggest that family members be given better support when making decisions and suggestions are given about how to improve communicatin.
http://journals.lww.com/ccmjournal/Abstract/2003/05001/Moral_justificati...

Black, Kathy. “Advance Directive Communication: Nurses’ and Social Workers’ Perceptions of Roles.” American Journal of Hospice and Palliative Medicine 23.3 (2006): 175-184.
A very small study about the role of nurses and social workers in advanced planning discussions with patients.
http://ajh.sagepub.com/content/23/3/175.abstract

Shalowitz, David I., Garrett-Mayer, Elizabeth, and Wendler, David. “How should treatment decisions be made for incapacitated patients, and why?” PLoS Medicine 4.3 (2007): 423-428.
Discusses the fact that surrogate decision makers are often inaccurate when predicting patients’ preferences. Compares the accuracy of surrogates to that of a preliminary population-based treatment indicator.
http://www.plosmedicine.org/article/info:doi/10.1371/journal.pmed.004003...

Shalowitz, David I., Garrett-Mayer, Elizabeth, Wendler, David. “The accuracy of surrogate decision makers: a systematic review.” Archives of Internal Medicine 166 (2006): 493-497.
Reviews studies that provide empirical data on how accurately surrogates predict patients’ treatment preferences.
http://archinte.ama-assn.org.ezproxy1.lib.asu.edu/cgi/content/full/166/5...

Torke, Alexia M., Alexander, G. Caleb, and Lantos, John. “Substituted judgment: the limitations of autonomy in surrogate decision making.” Journal of General Internal Medicine 23.9 (2008): 1514-1517.
This article briefly describes the evidence against the substituted judgment standard that is currently used in surrogate decision-making, and offers alternative approaches to making decisions for incapacitated patients.

Vig, Elizabeth K., Starks, Helene, Taylor, Janelle S., Hopley, Elizabeth K., Fryer-Edwards, Kelly. “Surviving surrogate decision-making: what helps and hampers the experience of making medical decisions for others.” Society of General Internal Medicine 22 (2007): 1274-1279.
This article describes a study that was done in order to better understand the medical decision-making from the surrogate’s perspective.
http://www.springerlink.com/content/n143n11655n5t357/

White, Douglas B., Malvar, Grace, Karr, Jennifer, Lo, Bernard, and Curtis, Randall. “Expanding the paradigm of the physician’s role in surrogate decision-making: an empirically derived framework.” Critical Care Medicine 38.3 (2010): 743-750.