The Decision Makers

Clinicians_in_Intensive_Care_UnitLet’s say you are walking across the street and you look up, only to see a bus hurtling towards you. Now you are in a coma, and doctors want to test a risky new treatment on you.  How do they get your consent? This is where a health care proxy plays an important role. A proxy is typically a guardian, spouse, or child of elderly parents, and acts as the single person designated to make decisions about what is best for the patient. A health care proxy’s job is “to carry out and follow the patient’s wishes in the event the patient is too ill to make medical decisions for himself [1].” Far from a rare occurrence, a recent paper by Julia Buckley and Olga Molina states that in critical care units, health care proxies make about 70-90% of the medical decisions [2] for the more than 5 million patients admitted to the ICU each year [3].

How can a patient make his or her wishes known? One increasingly common method is a living will, which is “a legal document where a patient writes down his or her wishes about medical care in case the patient becomes unable to make their own decisions in the future [1].” While it is up to the patient whether to be detailed or specific, the generality of many living wills often causes profound ethical dilemmas. As Dr. Richard Demme describes, “Due to the absence of agreed-upon medical definitions for these terms, sometimes we doctors are left with question marks hanging over our heads [4].”

But even the most detailed living will cannot cover every foreseeable issue that may arise.  For example, one would imagine that all bases are covered with an order to Do Not Resuscitate (DNR), which dictates that in the event of heart failure or similar condition, you are not to be resuscitated or donate any organs. However, what happens if your doctor wants to give you a novel, unproven treatment that requires patient consent?  In such cases, a health care proxy, who can be appointed to supplement a living will, comes into play [4]. If a proxy has not been specified, the court appoints one, or else resolves any disputes between family members or the care center itself.  If a patient has no living will, he or she must make his or her wishes clear to the proxy, who can attest to those wishes in court if need be.  However, this verbal-only approach leads to some ethically difficult situations.

It is difficult to prove that you are following someone’s wishes without a written record of them, and this is the main reason that a living will is necessary.  According to the American Bar Association, a proxy can only make decisions based on two factors: the patient’s wishes and the patient’s best interest.  If the patient’s wishes are clearly known, the proxy must follow them.  If not, he or she must decide what will best help the patient [5].  However, carrying out these decisions is easier said than done.  How can signing a DNR for a patient be in his or her best interest?  If the patient clearly told you before he or she became incapacitated that a treatment was undesirable, how can you prove it?

Two notable cases illustrate this dilemma.  The first is Cruzan v. Director, Missouri Department of Health, a case that went to the Supreme Court. The patient, Nancy Cruzan, was in a car accident that left her in a persistent vegetative state. After learning that she had virtually no chance of recovery, no living will, and no health care proxy, her parents asked the hospital to end the life support procedures. The employees refused, and all of the subsequent courts upheld the decision, saying that “clear and convincing evidence was not produced to show that Cruzan herself would have chosen to refuse treatment.” Since the patient was in a coma, her family could not indisputably show that she would have chosen to refuse treatment, and the Supreme Court noted that that decision could only be made by a proxy in this case [6].

Another far more famous case is that of Schiavo vs. Schindler, a case which spanned fifteen years. Terri Schiavo, the patient, collapsed and entered a vegetative state, leaving neither a living will nor a proxy. Her husband, Michael, was appointed as her guardian by the court in Florida. After treatment attempts failed, it became reasonably clear that Mrs. Schiavo was not going to regain consciousness. Because she remained in a comatose, vegetative state, Michael requested that her feeding tube be removed. Her parents, the Schindlers, fought this decision, claiming that Terri could still recover and that Michael had personal interests in her death: namely, his new girlfriend and the money he had obtained on Terri’s behalf in a malpractice lawsuit.

The legal battle led to the involvement of pro-life and civil rights groups on both sides, as well as the creation of a new law to prevent the removal of Terri’s feeding tube by Jeb Bush, then the governor of Florida.  Terri Schiavo died on March 31, 2005 after Michael won the legal battle.7 This case raises important ethical issues: what happens when two parties who are equally involved in the patient’s life clash over medical treatment? Does the state have the right to intervene in what could be considered a very personal and individual decision when there is no default position?  Appointing a proxy or having a well-constructed living will solves this problem.

Both of these cases illustrate the clear need for a proxy and a living will.  Appointing a proxy and telling him or her of your wishes can solve many ethical dilemmas, especially when circumstances that you have not mentioned in your living will arise.  People deserve to have a voice in their own medical treatment, even when they cannot physically speak for themselves.


1.“FAQ/Glossary.” do your  Last modified 2010. Accessed May 15, 2013
2.Buckley, Julia W., and Molina, Olga.  “Honoring Patient Care Preferences:  Surrogates Speak.”  Omega: 65:4, 257-280.  2012
3.“Statistics Brochure.” Society of Critical Care Medicine. Accessed May 15, 2013.
4.URMC Scripts.  “Would You Still Have a Voice if You Were Silenced?  The Role of Health Care Proxies.”  Last modified April 22, 2013.  Accessed May 15, 2013.
5.“Ethical Issues Surrounding Surrogate Health Care Decisions.”  American Bar Association. Last modified 2005. Accessed May 15, 2013.
6.“Cruzan v. Director, Missouri Department of Health.”  CaseBriefs.  Last modified 2013.  Accessed May 15, 2013.
7.“Terry Schiavo Case Resources.”  University of Miami Ethics Programs.  Last modified 2013.  Accessed May 15, 2013.

Katherine Oosterbaan is a first-year student at the University of Chicago majoring in Chemistry. Follow The Triple Helix Online on Twitter and join us on Facebook.