At a Threshold: Making Decisions When You Don’t Have All the Answers

Many people who sustain a brain injury also lose decisional capacity. They need someone who will be a partner with clinicians in making decisions on their behalf. This article reviews ethical aspects of decision making; the legal foundation in the United States for surrogate decision making; the experience of surrogate decision making on behalf of people who have a brain injury, including similarities and differences between such decision making for the dying and for those who have a brain injury; and ways to approach intractable disagreements between surrogate or family and clinicians. It provides guidelines for clinicians and surrogates and suggests topics for research. Two people who have suffered a brain injury and the spouse of one are coauthors.

In the last 30 years, decisions about care and treatment of people who have a brain injury have been a leading source of innovation in health care. Karen Ann Quinlan’s hospital and physician refused to honor her parents’ request to remove her from the ventilator. Out of that conflict emerged institutional ethics committees and living wills. The drawbacks of living wills led to efforts to replace them with a surrogate or proxy, who would act as a partner for health care professionals (HCPs) to consider the patient’s needs and make decisions for her. The conflict between Nancy Cruzan’s nursing home and her family about removing her feeding tube led to several results: Congress passed the Patient Self-Determination Act of 1990; the US Supreme Court recognized the right of patients to refuse beneficial treatment, including medical nutrition and hydration; and the same Court also determined that when surrogates are asserting what the patient wanted, states have a right to set standards of evidence by which to assess surrogates’ claims. More recently, the controversies over the removal of Terri Schiavo’s feeding tube stirred up additional issues, for example, whether advance directives (ADs) prevent some people who have a brain injury from becoming people who have a disability, because the language and rationales of ADs undervalue the life of people who have disabilities. Occasionally, I refer to these three cases as “the three controversies.”

Despite the power of these controversies, little has been written in the United States about surrogate decision making on behalf of people who have a brain injury . That fact affords an opportunity to look afresh at the experience of this group of surrogate decision makers. The three controversies are ethics fights about responsible (ie, “ethical”) care of people who have a brain injury. These surrogates sought to carry out an ethical commitment to honor the wishes of their loved ones. Against them were arrayed, depending on the particular case, HCPs, institutions, networks of health care institutions, governmental bodies, and elements of the public, asserting allegedly more compelling ethical commitments to these patients. No moral struggles of surrogates in this article have the drama and wide significance of the three controversies, but moral struggles are central to this article.

From a different perspective, these controversies represent ways that surrogates and family members act as members of the health care team and that they are invisible as such members to health care professionals .

Learning often proceeds by studying similarities and differences between entities. In this article, I compare and contrast the experience of surrogates for people who have a brain injury with that of surrogates for the dying. There is much to be learned from this analogy. I also draw on my observations in the Neurologic Family Information Group (NFIG) of Rush University Medical Center; the experience of Marvel Vena and Mark Jolicoeur as persons who have had a brain injury; and the story of Laurie Jolicoeur, Mark’s wife. At the end, I offer suggestions for research.

Introducing the coauthors

I start by introducing Marvel Vena, Mark Jolicoeur, and Laurie Jolicoeur. After an automobile accident approximately 25 years ago, Marvel Vena did not recover consciousness. Imaging found a large arteriovenous malformation, which was repaired in an extremely lengthy surgery. After rehabilitation and 7 years of struggle to relocate herself in the business world and before the Americans with Disabilities Act, she had to take disability.

At the time of his brain injury, Mark Jolicoeur was an architect and Laurie was a high school Latin teacher. The couple had been married for approximately 10 years and had two small daughters. Mark presented at the emergency department of an academic medical center markedly confused and not knowing what was happening to him. A cyst was wrapped around his brain stem. He was successfully operated on, but shortly after discharge from the hospital, he needed a second operation to repair an arteriovenous malformation. Now 10 years after surgery, he is doing well.

Law and ethics that enable surrogate decision making

The experience of surrogate decision makers is so tightly interwoven with health care ethics that I need to begin with some comments about ethics in health care. In health care, ethics is not an add-on. It is built in. Institutions and HCPs constantly carry out ethics commitments to people who are sick and injured. HCPs know that their work involves ethics, but they tend not to notice the ethics that are built in. Clinicians tend to associate ethics with end-of-life or use of resources. If clinicians are discussing which antibiotic to choose, they are likely to consider that discussion medical, and not ethical, even though they are using value-laden terms like broader coverage, greater effectiveness, less toxicity, or even just plain “ better .” This discussion also explores the evidence behind claims for and against each antibiotic. Clinicians sometimes frame these discussions in a way that broadens medicine and narrows ethics.

Many different approaches to health care ethics have been developed since the early 1970s. One of the most widely used is ethics principles . Guided by the principle of beneficence , neurosurgeons sought to do Marvel and Mark good, to remove harms, and to help them avoid additional harms. Guided by nonmaleficence , neurosurgeons sought not to inflict avoidable harms on them. One extreme of doing harm is excessive confidence. In relation to that extreme, the neurosurgeons reined in haste, carelessness, ignorance, arrogance, pride, and so forth. The other extreme of doing harm is deficient confidence or timidity . In relation to that extreme, the neurosurgeons worked confidently in tight quarters and with a lot at stake. They worked close to the golden mean between excessive confidence and timidity.

Guided by respect for autonomy , the neurosurgeon spoke with Laurie about Mark’s situation and what he needed, and she authorized the surgery. Justice means the appropriate distribution of benefits and burdens throughout the society, but it also means, “what is due” . What is due, in this article, to people who have a brain injury is beneficent and nonmaleficent treatment, and respect for the patient’s own self-determination. In certain ways, each of these principles implies the others, making tight distinctions among them difficult.

As an alternative to ethics based on the priority of autonomy, Malec proposes an “ethics of relationships”: “We find our own worth and meaning in the very ways that we give worth and meaning to others. These others, in turn, find their worth and meaning in their interactions with each of us.” Before ADs, United States physicians and surgeons asked family for consent, relying on the ethics of relationships. Schaller and Kessler recommend that if an AD is not available, German neurosurgeons should “turn to the patient’s relatives to try to get the best approximation of what the patient would have wanted to be done.” Bernat accepts asking the family, if the family meets the following conditions: “(1) the family members are in agreement with each other on the desired course of action, (2) they seem to be trying to make the decision that the patient would make or at least are acting in the patient’s best interest, and (3) their decision is consistent with good medical practice.”

Further, Malec writes, “each individual actively and with partial autonomy contributes to the maintenance and constant re-creation of society.” Just as clinicians often do not see the ethics that is built into their work, I have never seen a surrogate who has connected his decisions with the re-creation of society. The state makes this connection by authorizing surrogates to temporarily take over decisions for the patient and giving them a few rules to follow.

Surrogates and patients seem to be better able to link their experiences with society after treatment and rehabilitation, when they have regained a certain amount of normalcy. In the Brain Injury Association of Illinois, in the NFIG, and certainly in other places, Marvel applies what she has learned as a patient for the benefit of surrogates and other patients who have brain injury. Similarly, Laurie Jolicoeur draws on her experience as a surrogate for the benefit of others. She says, “Whenever I now connect with someone who has been through something that has been of a serious nature, my experience is a basis of a bond—being human in a whole new way.” When I told Mark about the NFIG, he said emphatically, “Good.”

Surrogates know—or will learn—another part of the ethics of relationships well: they not only help resolve “ethical controversies and dilemmas… [but] also create” them .

A prerequisite of informed consent is that the patient is competent. Here I consider only the surrogate’s competence. In the United States, a surrogate must, like the patient, be legally and clinically competent. A surrogate is legally competent if (1) she is of majority age, which is 18 in most states; and (2) no court has decided that she lacks decisional capacity.

Instead of “clinical competence,” this article uses “decisional capacity”, which is defined as the ability to understand the nature and consequences of this decision .

The basis of the United States approach to decision making in patient care is the ethical and legal principle of autonomy. This principle presupposes that physicians have performed their responsibilities under the principles of beneficence and nonmaleficence in diagnosing the patient’s condition and in recommending a treatment. Abigail Zuger writes, “Few adults retain dominion over their own health care for long. Other people keep infiltrating the territory.” In many cultures, family members cannot infiltrate the patient–doctor relationship, because they are already close to it. The patient is one person among others who consider his health care and take part in decisions about it. The United States emphasis on the patient is a fiction that is both useful and distorting. One distortion is that the patient may approach the doctor as if nobody else has anything at stake in the patient–doctor relationship. Another is that by concentrating solely on the patient, clinicians risk losing the wisdom of others in the family.

Decisional capacity and informed consent or refusal

Like patients, surrogates need to decide voluntarily, without coercion or manipulation. Occasionally, one sees a family member who is not the surrogate usurp that role or pressure the surrogate. Clinicians need to keep an eye out for behavior in the family that is inconsistent with the responsibilities of this surrogate.

One of the responsibilities of family and surrogate is to help determine whether the patient is able to communicate about the decision, even if she cannot use words or sounds. Pencil and paper, assistive devices like letter or picture boards, hand squeezes, and eye blinks may be enough for the patient to express her wishes.

Communicating through eye blinks and hand squeezes requires clinicians to dust off—and enhance—a habit they worked hard to shed: conversing by means of closed questions. With patients who communicate only by hand squeezes and eye blinks, open questions will not work. Clinicians need to ask yes/no questions and to ask the same yes/no question both positively and negatively. Drawing on Ayub Khan Ommaya, James Young notes that, “negative questions require a middle cognitive step, which is very revealing of wakefulness.” Finally, clinicians need to be able to ask these questions in a sequence that begins to look like a conversation and that leads to the information that is wanted.

If a patient cannot communicate and be understood in any way at the time that treatment is being considered, he needs a surrogate.

Emergency treatment and medical necessity

How do the ethics of informed consent and surrogate decision making accommodate people who need treatment so urgently that clinicians cannot wait until the patient can participate or until they can locate a surrogate? In the United States, if the patient (1) needs treatment urgently, (2) lacks decisional capacity, and (3) has no surrogate available to properly talk with clinicians about her care in a timely manner, treatment can proceed. Under these conditions, the values of life and health trump autonomy. Sometimes this situation is called “medical necessity.”

Criteria for surrogate decision-making

The primary legal and ethical criteria for surrogate decision making in the United States are substituted judgment and best interests . Substituted judgment means that, as much as possible, the surrogate seeks to make the decision that the patient would have made in this situation. This is the standard that is used unless the surrogate and family have no information at all about what the patient would have wanted. In that case, the standard is the patient’s best interests.

The decision about Mark’s first surgery is an example of substituted judgment. Mark was not able to decide for or against that surgery. He knew that something was wrong and that “the people I love were very concerned about me and I trusted them implicitly.” Not being able to authorize or refuse surgery does not mean that he was not included. Laurie, his surrogate, included Mark as far as his understanding and attention would allow.

Reasonable physician versus reasonable person standard for information needed for consent

What information should the surrogate be seeking from the doctor to be properly informed? In the United States, there are two main standards. One is the reasonable physician, which means that the physician must give the information that a reasonable physician would give. In brain injury, Marvel sees something like the reasonable physician standard: “Neurosurgeons… don’t address that this surgery is going to change you afterwards” (cf also Ref. ). Paraphrasing a neurosurgeon, she adds, “That’s understandable, because if they said that you’d be different afterwards, nobody would ever have surgery. They minimize those consequences because it would scare the patient to death.” An interesting research question would be whether neurosurgeons inform patients less fully than other surgeons about the undesirable side effects of neurosurgery. A follow-up ethics question would ask whether this is justifiable paternalism.

In this article I rephrase the reasonable person standard: The surrogate needs to know what the surrogate needs to know. Jonsen and colleagues call this the “subjective” standard, which they consider ideal. It is reasonable for the neurosurgeon to think that she has provided the information that the surrogate needs, but the surrogate has no way of knowing on her own that she has enough information. Therefore, Marvel says, the surrogate should focus on:

1.

What is the patient’s diagnosis at the time that the decision is being made?
2.

What are the major treatment options for this diagnosis?
3.

What treatment is the neurosurgeon recommending?
4.

What are the benefits of treatment, if it works; what are the risks of treatment; and what are the unavoidable side effects of treatment?
5.

Marvel recommends that family ask, “What’s the worst-case scenario, the best, and in between?”

The neurosurgeon’s answers will prompt more questions, but eventually the answers will become repetitive and questions will no longer occur to the surrogate. It is advisable for the surrogate to say back to the members of the neurosurgical team what she is hearing. We recommend to people who come to the NFIG that they write down their questions, so that they do not forget them. Surrogates can be distracted from their questions by the patient’s condition, what the neurosurgeon is telling them, and nonverbal communication from the neurosurgeon, among other things. As long as the surrogate has questions and there is time before treatment, the surrogate should not censor her questions. If she has to stop, she should write down questions that have not been answered and see whether she wants to come back to them later.

Responsibilities of the surrogate

The primary focus of this article is ADs. In the future, however, Advance Care Planning is likely to be the larger conceptual and behavioral framework within which clinicians, family, and patients can consider, prepare, and honor ADs for people who may need someone to make decisions for them. In 1991,

leaders of the major health organizations in La Crosse, Wisconsin, collaborated on the development and testing of an improved model of end-of-life planning and decision making. The program was unique because it used an integrated-systems approach that not only depended on printed material and videos to educate the community, but also provided the personal assistance of trained staff. This approach was then integrated as the routine standard of care through consistently applied policies and practices.

Five hundred forty patients died in La Crosse hospitals between April 1995 and March 1996. Eighty-five percent of them had an AD. Of this group, 96% had an AD in their medical record. Family and physicians seemed to know the patient’s preferences, which were typically followed.

For readers who are not familiar with United States ethics standards, this portion of the article reviews United States law and ethics pertaining to surrogate consent to treatment or refusal of treatment on behalf of the patient. The surrogate is, however, not just a decision maker. The surrogate is a partner with health care professionals. Together they consider who the patient is, how the patient understands well-being, and what decisions and actions will serve the patient best.

In the United States, a person becomes a surrogate for a person who has lost decisional capacity by being designated surrogate in the patient’s Durable Power of Attorney for Health Care (DPOAHC) or health care proxy. A year or so before his brain injury, Mark and Laurie signed ADs. The Durable Power of Attorney for Health Care was crucial for Laurie as a surrogate. She became his active surrogate when Mark called her “three times in quick succession” and had “the exact same conversation.” Laurie was the first to recognize that her loved one was not making sense or responding appropriately. Surrogates may well be the first to recognize that they are at the threshold of surrogacy for their loved one. At the time, they are not likely to be with someone who can say to them, “Now you’re the surrogate, let me orient you to your responsibilities.” Many people who have come to the NFIG report experiences like Laurie’s.

Readers will need to check the laws where they work that govern decision making for people who lack decisional capacity. In Illinois, the Health Care Surrogate Act authorizes a family member or close friend to become the surrogate if the patient does not have an applicable AD, such as a living will or DPOAHC. A living will may not apply to the patient’s condition. People in the media frequently said that the way for viewers and readers to avoid being in Terri Schiavo’s situation was to fill out a living will, but in Illinois a living will would not have helped her because she did not have a terminal condition, she was not imminently dying, and the Illinois Living Will Act specifically prohibits withholding medical nutrition and hydration if that withholding is expected to cause the patient’s death. The DPOAHC does not apply if the agent has died, lost decisional capacity, traveled to some place where s/he cannot be reached, decided that the agent’s tasks are too stressful for her/him, and so forth.

With some exceptions, I strongly advocate that societies and cultures carefully consider how practices that they are adopting and adapting from the United States will fit their prevailing practices. Customs contain wisdom and should not be discarded without careful consideration. There is enough wisdom in customs that involve the entire family that I recommend that surrogates be careful to involve the entire family as much as possible under the circumstances.

The third way is to be appointed the patient’s guardian by a court. Sometimes the agent of the DPOAHC or the surrogate under whatever legislation authorizes surrogates will need to seek that appointment. This usually occurs when there are major intrafamily conflicts.

Box 1 lists some primary guidelines for surrogates and outlines tasks that these guidelines can help with.

Box 1

General guidelines for surrogates
1.

Be a partner with professional members of the health care team.
2.

Represent the patient.
3.

Distinguish between the patient’s wishes and her or his own and those of others in the family.
4.

Inquire about the loved one’s condition, prognosis, treatment, benefits, burdens, and risks of treatment or nontreatment.
5.

Foster each family member’s expression of opinions and concerns.
6.

Help the family to value conflict that clarifies issues and options and to reduce impatience and hostility as much as they are capable of.
7.

Return power to the patient when the patient regains decisional capacity.
8.

Find ways to rest, to be as good a decision and partner with physicians as possible.

Specific tasks these guidelines can help with
1.

Understanding the patient’s condition, prognosis, treatment, and benefits and burdens of the decision as if s/he were the patient her/himself
2.

As clearly as possible stating the patient’s wishes, together with the limitations of her/his understanding
3.

Stating her/his own wishes for the patient, and distinguishing those wishes from the patient’s
4.

When the patient has expressed wishes for or against a particular treatment, for example, mechanical ventilator support, distinguishing between an application of that treatment modality that can reasonably be expected to be required for a long time and a short-term or “bridge” application of it
5.

Being a channel of communication between clinicians and the family
6.

Getting enough rest
7.

Including the conscious patient who lacks decisional capacity tactfully and respectfully in discussions of treatment plans
8.

Stepping back and turning decisions back over to the patient if the patient regains decisional capacity and if the patient wishes to participate in decisions again
9.

Advocating, if necessary, that HCPs include the conscious patient who lacks decisional capacity as much as possible or return decisions to the patient when decisional capacity returns
10.

Having a good-enough understanding of whatever explicit instructions or wishes the patient has given for this kind of situation, or being able to infer “well-enough” from the patient’s values, life history, previous decisions, and so on, how s/he would decide, if s/he could take part,
11.

Encouraging family members and friends to explore the issues deeply and widely and not to avoid stating points of disagreement
12.

Helping family and friends not to fight with one another when they state their own concerns, as if their own view were the only valid option
13.

Tolerating the stresses and ambiguities of not being able to read the patient’s mind or predict the future
14.

Recognizing that the proper time to evaluate a decision, from the ethics point of view, is at the time the decision is made, not after one knows how the decision turned out
15.

Asking for input by the ethics committee or ethics consultation service

Lists of general guidelines and specific tasks for surrogates