Mrs. K, an 82-year-old woman with moderate to severe Alzheimer’s dementia, advanced heart failure, emphysema, and diabetes mellitus with neuropathy and nephropathy has just been readmitted with difficulty breathing, two days after being discharged to the care of her daughter. In the previous admission for the same problem, she was treated in the intensive care unit, narrowly avoiding intubation by the use of aggressive pulmonary toilet, antibiotics, and diuretics for possible pneumonia and congestive heart failure. Just after her second admission, the attending physician approached Mrs. K’s daughter to discuss forgoing life-sustaining treatment. “In my opinion, if your mother should have a cardiac arrest, resuscitating her would be futile,” said Mrs. K’s physician. The daughter reacted angrily and insisted that “everything be done,” because her mom is strong and can get better (as she has previously).
Conflict may be defined as disagreement between people when a decision must be made or an action taken. Healthcare providers encounter conflict in everyday practice, and one of the most difficult and distressing situations physicians face is conflict with family members over forgoing life-sustaining treatment. What should be a cooperative effort to achieve treatment goals turns into an exercise in frustration and distress.
In the hospital, death is routine to the caregivers, but not to patients and families. Given the emotional impact of decisions surrounding death and dying, conflicts are not surprising but are still disturbing to all parties involved and can diminish trust between doctor and patient or family. This impaired trust profoundly influences the ability of families to believe or understand the prognosis and accept physicians’ recommendations based on the patient’s goals. Physicians, meanwhile, may be angry and frustrated, distrust the family’s motives, worry about litigation, or believe that they are asked to violate their professional ethos by providing care that “does not work.” Although physicians and patients (or families) may disagree about the proper course of action in other settings, conflicts in the context of severe illness involve high stakes, great vulnerability, deep fears, and strongly held beliefs. The focus here is on clinician–family conflicts, and not conflicts between clinicians and patients, because when decisions about withholding or withdrawing life-sustaining treatment are contemplated, patients are often incapacitated. Furthermore, a competent patient’s wishes are justifiably given much more respect than the judgements of surrogates.
Decisions about withholding or withdrawing life-sustaining treatment can receive a great deal of publicity. While some cases, such as Terri Schiavo in the USA, reach the courts and media, most conflicts about end of life decisions do not. Even without legal or media attention, these conflicts can have serious consequences. They negatively affect the quality of care and decision making, as well as the satisfaction of both family members and healthcare providers.
Decisions about withdrawing, withholding, or continuing life-sustaining treatment require consideration of moral as well as medical concerns. Clinicians may feel that they are violating professional norms to “do no harm” when they are asked to continue burdensome interventions that they consider to be of little or no benefit. Recognizing moral dimensions is an important first step, including professional obligations of compassion, respect for patients’ and families’ values and beliefs (which may differ substantially from those of the physician), competence (e.g., in prognosticating and communicating), honesty, and humility. Humility, and its antithesis arrogance, bear particular weight when families face the need to trust physicians’ prognoses and recommendations.
Statutes and legal precedents from a number of jurisdictions frequently apply to end of life decision making. Many courts have addressed “right to die” cases permitting the withdrawing or withholding of life-sustaining treatment, although the standard of evidence required regarding what the patient would have wanted may vary. For example, the US Supreme Court decision in Cruzan v. Director, Missouri Dep’t. of Health (1990) clarified the circumstances under which a patient may refuse medical treatment or authorize another to speak for him or her, and permitted states to develop their own right to die laws. Statutes may legitimize advance directives (living wills and/or durable powers of attorney for healthcare), address the circumstances under which a patient can refuse medical treatment, provide guidance for surrogate decision making, address physician-assisted suicide, or require healthcare organizations or doctors to inquire about advance directives. Professionals should be familiar with laws in their own country and locality, and know how to access legal advice when necessary.
Besides policies set by governments, institutions (hospitals, nursing homes, health systems) frequently include end of life issues in their policies. Some healthcare institutions have “futility” policies; most will have policies about withdrawing and withholding life-sustaining treatment (e.g., do not resuscitate orders) and surrogate decision making. Other relevant policies may not be formal or obvious, for instance intensive care units and emergency rooms may restrict family access to patients during certain hours or certain events (e.g., resuscitation) (Kopelman et al., 2005).
End of life decision making and care have attracted an enormous amount of research, ranging from comparisons of patients’ and surrogates’ preferences to interventional studies aiming to increase advance directive use or discussions about limiting treatment (Lynn et al., 2000; Prendergast, 2001). Most of these studies portray an unfortunate reality: the wishes of patients are rarely known, poorly predicted by surrogates, unreliably followed when they are known, and patients’ symptoms remain inadequately treated (Fagerlin and Schneider, 2004; Silveira et al., 2005). The approach below integrates, when available, evidence about end of life decision making.
As for other problems in medicine, developing a differential diagnosis for end of life conflicts can help clinicians to consider carefully all of the possible explanations for the disagreement. Rather than reacting to the manifest problem (e.g., establishing code status), the first crucial step is to actively inquire what are some possible root causes of the conflict. After reflecting on root causes, addressing conflicts in end of life care should begin with a few open-ended questions. Asking the family about the patient’s past history, what other clinicians have told them about their loved one’s condition, and their choices (e.g., “Can you tell me why you are leaning toward resuscitation in the event she stops breathing?”) allows one to identify the reasons behind decisions, as well as assess understanding. With that information, clinicians can explicitly create a differential diagnosis of the sources of conflict, which fall into three general categories: family features, healthcare provider features, and contextual (organizational and social) features. These are often present in combination and may interact.
“Family” refers here to a patient’s collection of intimates, who may or may not be related by blood ties. Two types of circumstance can explain the family’s role in conflict. In the first, families do not understand the medical issues. In the second, they understand the clinical situation but reach a different conclusion from healthcare providers.
Inadequate understanding of the medical situation by the family could include a completely different understanding of the prognosis. An optimistic belief that cardiopulmonary resuscitation will succeed, for instance, could reflect its 77% success rate on television (Diem et al., 1996). Consultants or nurses may inadvertently convey a different prognosis to the family than the primary physicians, so it is often useful to choose one healthcare professional to serve as the primary communicator, while other clinicians convey information through this spokesperson. Families often poorly process and imperfectly remember “bad news,” even when it is clearly and consistently provided. Repeating key concepts, giving written as well as verbal information, encouraging questions (“I expect you will have questions about what we discussed today. Write them down for our talk tomorrow”) and periodically assessing understanding of the situation may improve information transfer and decrease frustration.
Denial – the inability to explicitly recognize a set of facts because of its unacceptable psychological consequences – commonly affects the ability to understand medical situations. Symptoms of denial include displacement – a focus of concern on trivial, but controllable, matters – and an inability to discuss “bad news” (Weissman, 2004). Mrs. K’s daughter, in the case described, asked about her mother’s oxygen level and laboratory results; conversations about the “big picture” were quickly turned into discussions about relatively unimportant medical processes. Effective techniques for managing denial include open-ended listening; non-defensive, neutral responses; silence; and frequent, regular opportunities for the patient or family member to communicate with a consistent healthcare provider. Reflecting and validating family members’ emotions can be especially valuable. Saying “It must be very hard for you to see your mother so ill,” and “You’ve been a wonderful caregiver for her for many years” may prompt an exchange that begins to deal with the grief, guilt, or anger that can cause denial.
Finally, healthcare language can adversely affect understanding. Problems associated with interpretation of language can be avoided by using language appropriate to the family’s educational level, by frequently assessing understanding, and by avoiding shorthand terms. Phrases like “usually,” “most of the time,” or “we cannot rule out,” used by physicians to convey uncertainty, may be interpreted variably (Knapp et al., 2004). Families are more likely to understand “out of 100 patients like your mother, about half will survive six months or longer” (Morrison, 2000) than “your mother has a 50% six month survival rate.” Some caution is in order, however, given the impossibility of precise prognoses for individual patients (Fox et al., 1999). Providing a range of possible outcomes can usefully convey uncertainty, for example “Almost all patients like this will not survive to be discharged from the hospital; some die within hours or days, others might stay alive for weeks or even months with in-hospital treatments. A rare few beat all the odds.” Other language commonly used in discussions with families (“death with dignity,” “everything done”) contribute to misunderstandings. In Mrs. K’s case, her daughter may have interpreted use of the term “futile” to mean that the physician did not think her mother was worth treating.
Grief can contribute to an inability to make any decisions, especially decisions that may result in a loved one’s death. When Mrs. K’s daughter said “I will not be able to live without her,” it reflected her inability to cope with her mother’s death. Supportive, open-ended dialogue allows the family to recognize, express, and begin to work through grief. Family members’ guilt, often manifest during times of crisis, may also contribute to an unwillingness to make decisions. Guilt is recognizable when family members say, “I cannot do this,” or “I will not be able to live with myself.” Physicians may unwittingly increase feelings of guilt when they ask the family to take responsibility for medical decisions (e.g., “Do you want us to resuscitate her?” rather than, “What do you think your mother would want us to do?”) (Tomlinson et al., 1990). Even if surrogates do not always make decisions that patients would make (Fagerlin and Schneider, 2004), inaccuracy in no way undermines the family’s role in decision making. Another way to treat the family’s guilt is to take responsibility for medical decisions (e.g., “You tell me about what was important to your mother, and I will recommend what we should do for her”). The family can set positive goals and objectives of treatment (e.g., maximizing comfort) and clinicians recommend actions to achieve those goals. Clinicians should also praise family members, when appropriate, for respecting their loved one’s values and wishes at the end of life.
Occasionally, secondary gain (“conflict of interest”) may lead a family to make a decision with which the healthcare team disagrees. Secondary gain, often suspected when conflict arises, is always present to some degree when intimates make decisions for and about each other (Goold, 2000). Identifying potential sources of secondary gain – avoiding unbearable grief, avoiding overwhelming caregiving responsibilities, or avoiding financial ruin – is nonetheless illuminating. Addressing wishes to postpone the death of a spouse because of grief and loneliness requires a very different approach, for instance, than addressing wishes to keep a spouse or parent alive to collect a pension.
Even if they understand and accept the situation, family members may make decisions with which the healthcare team disagrees. Clinicians’ values and those of patients or families differ. Individuals may have vastly different ideas about what constitutes a reasonable chance worth pursuing, a good quality of life, or a “good death.” If Mrs. K’s daughter, deciding according to her best understanding of her mother’s wishes, chooses resuscitation because it might prolong her mother’s life for a few days, weeks, or months even though the chance of survival to discharge is very small, this decision probably reflects a difference in values and should be respected. Empirical data suggest that these conflicts occur infrequently; with good communication, doctors and families usually come to mutually agreeable moral decisions.
Clinicians, like patients, may be uncomfortable with prognostic uncertainty (Spikes and Holland, 1975; Kahneman et al., 1982; Novack et al., 1997; Christakis and Lamont, 2000; Meier et al., 2001), which may lead them to approach limiting treatment decisions in overly hesitant or overly confident ways. Statements like “She won’t leave the hospital alive” or “She has less than six months to live” fail to take into account the near-universal uncertainty in prognosis (Christakis and Lamont, 2000), and can make families suspicious they are not being told the whole story. Likewise, communicating information or recommendations too vaguely can lead to confusion or false hope. Clinicians who have known the patient for a long time might provide overly optimistic prognoses.
Like patients and families, healthcare providers are often uncomfortable discussing death; anxiety about one’s own mortality may lead clinicians to avoid frank discussions about death or to provide false reassurance that “everything is OK.” Clinicians also face the troubling thought of a medical “failure” (Spikes and Holland, 1975). Healthcare providers tend to underestimate the quality of life of chronically ill patients, especially for demented patients, and are more likely than patients or families to think that such patients would choose to forgo life-sustaining treatment. Other clinician attitudes that influence conflict include beliefs about the sanctity of life, the proper role of family members, difficulty with radically different values, or insecurity about one’s competence or skill. Insight into one’s own limitations and beliefs helps clinicians to understand feelings of anger and frustration with certain families and then to discuss with the family areas of disagreement (Novack et al., 1997; Meier et al., 2001).
Similarly, knowledge or skill deficits can catalyze clinician–family conflicts. Clinicians may be unaware of the prognosis or treatment options and misinform the family, although now numerous resources provide information on prognostic indicators for patients with a variety of clinical conditions (Gage et al., 2000). They may not understand ethical, legal, or hospital policies surrounding end of life care. Mistaken beliefs regarding the legality of withdrawing ventilators or artificial nutrition, for example, may lead a provider to refuse to accede to the family’s desire. A lack of training in palliative care and symptom management can make interventions more burdensome for the patient, and hence lead clinicians to perceive they are inflicting suffering. Finally, healthcare providers may be ill-trained in interpersonal communication regarding end of life decisions, leading to misunderstandings, confusion, and frustrations (Tulsky et al., 1995, 1998). Fortunately, skills training is now more widely available.
Healthcare professionals, like patients and families, can be overworked, fatigued, frustrated, stressed, and otherwise beset by competing concerns. Physicians in training have heavy workloads and may be poorly motivated to spend additional time with patients or care for more of them and hence especially intent on making decisions quickly. The intern caring for Mrs. K may feel that her scarcest resource, time, is “wasted” on a demented, terminally ill woman. The culture of the hospital, with its prioritization of emergency, life and death decisions, high technology, and speedy discharges, as well as (in some systems) poor reimbursement for conversations with families, contributes to an emphasis on “high-tech” interventions and the avoidance of time-consuming family conferences. Insight into one’s emotional status may help, although larger cultural changes in medicine will probably be needed (Scott et al., 1995; Field and Cassel, 1997; Mildred and Solomon, 2000).
Both the immediate and the general context in which clinician–family communication occurs can influence conflict. Conversations about end of life decisions that are unexpected (to the family), unannounced, or unplanned are more likely to result in conflict than those preceded by preliminary communication between clinicians and family, that occur at a preplanned time and location, and that have agreed-upon participants. As no competent surgeon would begin an operation without a plan for the procedure, clinicians should enter family discussions prepared with information about prognoses and with prepared methods to communicate information and ask and answer questions. The actual participants are important. Trust, which often accompanies long-standing doctor–patient relationships, can be invaluable for effective, solution-oriented communication. With the increasing use of hospitalists, seeking the input and participation of continuity clinicians may help in communication.
System-wide social and organizational factors also contribute to conflicts. Hospitals and health systems are worried about finances; doctors are under pressure to constrain the use of limited resources, and there is a pervasive social feeling that too much money is spent on medical care. Consequently, when a patient’s prognosis seems to be hopeless, clinicians may feel, on the one hand, that life-prolonging treatment should be stopped quickly. On the other hand, some incentives such as reporting mortality rates for surgeons may encourage physician over treatment.
Patients and families face economic pressures of their own from serious illness; in the USA, medical expenses are the most common cause of personal bankruptcy. Families may prolong inpatient treatment because it costs them less than caring for a patient at home, or end things quickly if they bear substantial financial costs of care. Sadly, economic circumstances predict greater suffering at the end of life, and the availability of hospice care can depend on where a patient lives, their particular diagnosis, and whether or not they are insured (Silveira et al., 2003, 2005).
Hospital policies may also promote conflicts in end of life decisions. When intensive care and other units restrict visiting hours, this minimizes contact between families and patients and may impair communication between them, and keeps families from seeing what their loved one is going through (Rosenczweig, 1998; Kopelman et al., 2005). Similarly, requiring physicians to sign orders limiting life-support treatments may lead to unwanted resuscitation, particularly in settings (e.g., nursing facilities) staffed primarily by other clinicians. Organizations as well as doctors have legal fears regarding end of life decisions. In most of the major court cases in the USA since the mid 1980s, organizations refused to accede to family wishes, leading to legal action.
By considering this list of potential sources of conflict, clinicians can more readily and accurately identify the causes of difficult interactions with families of desperately ill patients around decisions to limit treatment. Improving the quality of end of life care requires development and research in interventions designed to identify and decrease these sources of conflicts. Training may help to improve physicians’ capacity to elicit and identify psychological and social factors at play in conflicts at the end of life (Smith et al., 1998) and improve their ability to give bad news, deal with emotions, and negotiate treatment goals. Hospitals and healthcare organizations should also experiment with structural changes, such as changing visiting time or increasing support for family meetings, to minimize conflicts and facilitate acceptable and relatively efficient solutions. It is hoped that by more accurately identifying the “diagnosis,” the effective “treatment” (empathic end of life care) and “prevention” (early clinician–patient discussions and institutional change) will follow.
Mrs. K was intubated and transferred to the intensive care unit when she experienced respiratory distress. Her daughter received counseling from clergy. She consistently expressed a request that her mother’s treatment not exclude the goal of extending life. Several days after transfer to the intensive care unit, Mrs. K died.
An earlier version of this chapter has appeared: Goold, S. D., Williams, B., and Arnold, R. M. Conflicts around decisions to limit treatment: a differential diagnosis. Journal of the American Medical Association Feb. 16, 2000; 283(7): 909–14. Copyright (2000), American Medical Association. All Rights Reserved.