End-of-Life Decision Making in Intensive Care

End-of-life decision making is a growing need in the ICU, covering a continuum of treatment possibilities. The author describes end-of-life decision making in the ICU and suggests strategies for improving the process for healthcare providers as well as patients and patients’ families.Mrs J., a 75-year-old widow, was admitted to the intensive care unit (ICU) after heart surgery. Before the surgery, she hd been active in her community and enjoyed canning, quilting, and helping her elderly friends. Her greatest fear about surgery was that she might have a stroke, and she asked her daughter, Grace, who was the designated decision maker on Mrs J.’s advance directive, to promise that if something happened to prevent Mrs J. from returning to her independent lifestyle, Grace would make sure that life-prolonging treatment was not continued.Initially, Mrs J. did well after surgery, but she had a debilitating brain stem stroke several days later and required intubation, mechanical ventilation, and tube feedings. Grace, being very clear about her mother’s wishes, asked the physicians to stop the mechanical ventilation and the tube feedings. Three physicians were involved in Mrs J.’s care. Because of philosophical differences related to their specialties, they could not agree on a decision to discontinue treatment, despite repeated requests from Grace. Grace began to feel angry, and nurses caring for Mrs J. felt torn and frustrated.Scenarios such as this are not uncommon in ICUs and require that those caring for patients in the unit be proficient not only in saving lives but also in providing expert care at the end of life. In this article, I focus on one aspect of end-of-life care in the ICU, namely, end-of-life decision making. On the basis of recent research in nursing, medicine, and social sciences, I describe end-of-life decision making in the ICU and suggest strategies for improving the process for healthcare providers as well as patients and patients’ families.New drugs, devices, and tools are developed every day for use in ICUs that increase the ability to counteract or modify the effects of diseases that, in the past, were surely fatal. These possibilities can be exciting, and “enthusiasm for high technology and sophisticated interventions characterize the culture of American medicine.”1 In fact, both caregivers and patients have high expectations for cure in the ICU because of all the resources for treatment that are available.2However, in the enthusiasm for technology and cure, often patients’ wishes, quality of life, and consideration of the burden of treatment compared with the benefit are overlooked. Furthermore, the complexity of ICU situations often makes it difficult to determine patients’ preferences and values with certainty. Communication and relationships with patients and their families can be lost in the technological intensity of the ICU.2In the past several years, increased attention has been paid to improving end-of-life care for both patients and their families. An example is the Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments (SUPPORT),3 a landmark study about patients’ preferences for end-of-life care. Many patients die in the ICU, most often after life-sustaining therapy has been withheld or withdrawn.4,5 However, despite the growing emphasis on end-of-life care, neither physicians nor nurses think that their educational preparation or clinical experiences have prepared them well to help patients and patients’ families at the end of life.6–8End-of-life decision making is the process that healthcare providers, patients, and patients’ families go through when considering what treatments will or will not be used to treat a life-threatening illness. Several forms of this decision making are possible. First, advance directives (ie, living wills and/or durable power of attorney for healthcare) provide an opportunity for patients to express their preferences in writing before a critical illness occurs. The SUPPORT trial3 and related studies9,10 indicated that advance directives had little impact on the actual care received by patients at the end of life. Even when a patient had specific instructions in his or her advance directive about end-of-life treatments, the instructions were followed less than 50% of the time.9 On the other hand, compared with patients who did not have an advance directive (specifically, a durable power of attorney for healthcare), patients who had such a directive were significantly more likely to have a do-not-resuscitate (DNR) order.11Another common form of end-of-life decision making centers on resuscitative efforts.12–14 These decisions may result in DNR orders and can vary in content; some patients may request no resuscitative efforts, whereas others may wish to have limited efforts, such as medications or defibrillation only, if a cardiac arrest occurs. In a study by Simpson,14 36% of all patients admitted to 2 British ICUs on an emergency basis during a 3-month period eventually had DNR orders written, and 77% of all ICU deaths occurred after DNR orders had been written. Although Weiss and Hite12 found that patients who had DNR orders were less likely than patients without such orders to be admitted to an ICU again and were less likely to be receiving mechanical ventilation or to be in the ICU at the time of death, others13,14 found that many patients continued to receive all other aggressive treatments, with the aim of cure, when a decision had been made not to resuscitate the patients if a cardiac or respiratory arrest occurred.A third form of end-of-life decision making is withholding or withdrawing life-sustaining therapies, such as antibiotic therapy, use of vasopressors, dialysis, administration of fluids and nutritional feedings, and mechanical ventilation.4,11,14,15 Although cultural differences exist between acceptance of withholding therapies and acceptance of withdrawing the therapies,8,13,16–18 many agree that withdrawing therapies is “morally equivalent” to withholding them.8 Patients’ family members are often asked to consider withholding or withdrawing life-sustaining therapies in the ICU,15 and in a Canadian study,4 90% of ICU deaths occurred after some sort of life-sustaining treatment had been withheld or withdrawn. Decisions about these therapies most often occur simultaneously with or after decisions to forgo resuscitation (DNR orders).When decisions have been made to withhold or withdraw therapies, a decision to pursue “comfort care” may follow. Comfort care involves discontinuing any diagnostic or therapeutic procedures, such as obtaining blood samples for laboratory tests or physical therapy, that do not contribute to the patient’s comfort, as well as ensuring that adequate amounts of analgesics and sedatives are given to control pain, dyspnea, or other uncomfortable symptoms. In the study by Fins et al,11 46% of 200 consecutive patients who died in one medical center had comfort care plans in place at the time of death. These comfort care measures were implemented, on average, 2 days before death. These findings parallel those of the SUPPORT study,3 in which end-of-life decisions to forgo resuscitation were often made within 2 days of death. Patients in the SUPPORT study were seriously ill and knowledge of their impending death was clear, yet decisions about end-of-life care were delayed. These findings suggest that for these types of patients, consideration of the timeliness of this decision making is needed.Most often in Western healthcare, the physician is the major decision maker in the end-of-life process. In an integrated review of current research, Baggs and Schmitt19 found that physicians often make these decisions alone or with minimal input from others. Other investigators20,21 found that physicians make treatment decisions in consultation with other physicians. When patients’ family members are involved, physicians are most commonly the initiators of discussions about end-of-life treatment issues15 and often dominate the discussions. This dominance may occur because physicians think they have superior knowledge, have difficulty understanding the lay perspective, or try to relieve patients’ families of guilt and confusion.19Several studies11,12,19 have indicated that in the ICU, patients are rarely involved in the end-of-life decision making. The reported percentage of ICU patients involved in making their own DNR decisions ranges from 0% to 32%.13,17,20,22 Because of the severity of patients’ illnesses in the ICU, this finding may be understandable; patients may not be physically or mentally able to participate. Another explanation for this finding may exist, however. Although healthcare providers in a US study,7 including physicians, nurses, chaplains, and social workers, stated that patients should be the initiators of end-of-life discussions, almost all of the providers (93%) expressed a belief that not all patients have the right to make end-of-life decisions. It is unclear how patients’ “rights” were defined in this study,7 and reasons for the healthcare providers’ beliefs were not explored. In a more recent study,23 96% of participants, which included nurses, physicians, pharmacists, dieticians, administrators, and others, agreed that patients have the “absolute right” to determine what care the patients receive at the end of life.Most often, physicians look to the family members of ICU patients as surrogate decision makers for the patients. Studies12,14 have indicated that patients’ family members are involved with end-of-life decisions 60% to 80% of the time. Involvement of patients’ family members in decision making is more common in the United States than in other countries; in the United States, patients’ family members are legally recognized as surrogate decision makers when patients are incapacitated.5,24 In other countries, decisions to limit treatment at the end of life are often made by a physician without involving the patient’s family or with notification of the family of the decision after the fact.16,20–22Evidence of nurses’ involvement in the end-of-life decision making is limited. In studies that included nurses,14,25 most nurses reported participating in end-of-life discussions with patients or patients’ families at some time, but in the majority of studies on this issue, the focus was on physicians, patients, and patients’ family members.With the exception of advance directives, which patients ideally write before a life-threatening illness occurs, most end-of-life decision making occurs as a patient is nearing death.3,5 Stroud8 found that end-of-life decision making occurs in a stepwise fashion. Usually, the decision to forego resuscitation (DNR orders) is made first; 1 to 5 days later, decisions are made to withhold or withdraw other therapies, such as dialysis, parenteral nutrition, or mechanical ventilation.Two groups of researchers26,27 explored the process that patients’ family members go through as the family members make decisions to withdraw life-sustaining therapies. Tilden et al26 found that families first begin to “recognize the futility” of a loved one’s situation by asking questions and closely watching care providers for cues to the prognosis of the loved one. As the family members begin to realize the probable bleak outcome, they move to the next step of coming to terms with the reality of the patient’s suffering and begin to imagine what the patient would want, on the basis of known values or expressed preferences. Shouldering the surrogate role is the third step and involves the work of taking on the responsibility of making decisions on their loved one’s behalf. Finally, facing the question of whether to forgo life-sustaining therapies is the last step in making these decisions. In this study,26 which included ICU patients with a variety of diagnoses, most families moved through these steps in a linear fashion.Similarly, Swigart et al27 found that surrogate family decision makers move through a series of steps in making end-of-life decisions. Understanding the critical illness by seeking information about the irreversible physiological processes that are occurring and developing trust in the healthcare team and the care provided are the first step of the process. Reviewing the patient’s life and bringing closure to that life story are the second step; this step involves considering the patient’s role in the family, thinking about the patient’s values, and evaluating the patient’s quality of life. The third step involves taking on the role of surrogate decision maker as a way to maintain family roles and relationships, seeing the surrogate role as a way to continue to act as a responsible, caring family member for the patient and others in the family.27 This process takes time and allows the family to develop the sense of doing the right thing.The results of another study28 illustrated similar steps, but from the point of view of the healthcare team rather than patients’ family members. The first step in the process is laying the groundwork, which is done by building trust and relationship with the patient or the patient’s family members, teaching about the illness, and “planting seeds” related to end-of-life issues. This step is followed by a step called shifting the picture. In this step, the members of the healthcare team work together to present consistent information to the patient’s family, create new expectations, and change the scope of treatment choices available. Finally, the team helps the family members accept a new picture, by reiterating information, involving other disciplines to the family, and helping family members their from cure to a of the research that end-of-life decision making that patients’ families and process information, and in to make choices with which the families feel The a of the processes of healthcare providers and patients’ family providers’ past and related to end-of-life care in have an on the end-of-life decision majority of physicians and nurses feel to end-of-life decision and in a US study,7 96% of physicians, nurses, care providers, and social were unclear on the role of the durable power of attorney for In another nurses reported to provide care for patients at the end of life by and is an in end-of-life decision making. do not have on advance directives or DNR in more difficult decision making in some of physicians in the United States with physicians in indicated a in the percentage of physicians who decisions to forgo life-sustaining treatment with patients’ families compared with of life-sustaining therapies is not in some countries, such as withholding therapies is these cultural In a of intensive care physicians, of the physicians that when making decisions to withhold or withdraw treatment, if a patient was not to make a decision for or they would not to determine if the patient had expressed any about end-of-life care. end-of-life found that in care is rarely withheld or withdrawn. In 50% to of deaths in ICUs occurred after decisions to limit care, families in the decision making only to of the also end-of-life decision et found that end-of-life decision making than did they had made a with the patient to the patient’s life and were more to forgo were more their included the patient’s quality of life and use of healthcare and of a clear role in the decisions made at the end of life. of and heart or respiratory are most commonly with DNR In with seriously ill patients, et found that of and quality of life patients’ to ICU care with mechanical quality of life before did not patients’ decision findings about the of advance directives on choices made for end-of-life care have been some that of patients’ through such as advance directives or through with the patients, decisions made by patients’ families and the burden of decision making for the nurses and physicians have end-of-life decision making as the most in clinical Because physicians write the they often feel a burden of responsibility when making end-of-life questions such I to make these that physicians have a difficult and with the responsibility for decisions that physicians to at However, nurses that they often have of when caring for patients the end of often with thinking that treatment was or continued in In a study by et of nurses reported they had their at some time when caring for patients at the end of life. When nurses with often nurses feel they are to a patient’s suffering without providing any benefit to the commonly are of the nurses in these Although nurses have some of this of understanding of most likely is the process of end-of-life decision nurses as between physicians and patients’ families. describe as for patients’ what physicians have in lay relationships with patients’ families help the nurses what and how information family members can receive at one In this nurses the by physicians in a way and at a that patients’ families can patients’ families look to nurses for the related to prognosis and quality of life for the is about patients’ on end-of-life decision to that patients to be involved in the process. In a study by et of seriously patients had about and were to about their preferences for end-of-life care. In another study,4 90% of patients’ family members or surrogate decision makers to decision making related to end-of-life care with a only to all decision making to a patients’ families to be involved, being involved is not an and it is with In 2 in which on the experiences of patients’ family members with of life-sustaining therapies, and guilt were as 2 major of end-of-life decision making for the families. with a Tilden et found that 1 to 2 after the of making a decision to withdraw life-sustaining therapy for a loved family was later, were members making these decisions for patients as work that was and Patients’ families also reported guilt that they the patients to if decisions were not made or In some family members felt or that they were able to their loved members who have made end-of-life decisions for a patient have of providers that are and those that decision making Swigart et al27 that patients’ family members end-of-life decision making through a taking the patients’ life, values, and whereas the healthcare team end-of-life decision making through a in the past, end-of-life decision making was as a something that was done when death of a patient was often after the patient was no able to in making decisions. This to Patients to about and be involved in decisions about what will at the end of their Patients’ family members that related to end-of-life care be in the of a life-threatening patients at high for and discussions about prognosis and with the patient’s can increase the use of DNR orders and comfort that to change is how healthcare providers care. care is defined as that to relieve suffering and quality of life for patients with a life-threatening illness and their care is not something that is because is more can it is an aggressive of care to patients’ and the of patients and patients’ families. care, which that patients forgo all treatment, care can be patients are seeking cure for a As a patient’s care can help the patient and his or her family their from cure to comfort and providers can also change the way they think about providing care. It is as to be and when providing care as it is to how to provide medications and interventions for a patient in the of an with end-of-life decision making and providing end-of-life care should be included in educational for nurses, physicians, and other healthcare care healthcare providers with life and death every Patients’ family members, may have these and the of this will be with them for a members have the of making end-of-life decisions for a loved one as and members are making decisions in the of and and often need others who and the patient to their decisions and may for information to their decisions made by patients’ family members will have a impact on the Patients have a role in their and the patients’ living or will change the families how decisions are made can also relationships between family as healthcare providers, what are asking of patients’ family members when them to in these decision making is most when members of the healthcare team work together in patients and the patients’ between team members is in this between physicians and nurses when with end-of-life in the ICU may the by when the that the other in these The healthcare which may physicians, nurses, social workers, chaplains, and others, to a consistent to patients and the patients’ families in to and decision of care to patients and their families through life-threatening illnesses or is one to and of end-of-life trust is one of the first steps in laying the for end-of-life decision in the ICU often develop relationships and with patients and the patients’ because of the intensity of the care and the time the groups as patients’ and often as between patients’ families and the trust patients and patients’ families place in ICU also between patients’ family members and members of the healthcare team when care providers about a patient’s life, values, and and when and what this decision making to the patient’s In for families to feel and in this a relationship of trust is aspect of this relationship that end-of-life decision making is and to the of this process on patients and their family members effects the process can have on all their members have asked that healthcare providers and to their and and helps of guilt and burden for family members when they feel they have been able to for their loved one and have been and of with patients and patients’ families also an role in of end-of-life decision making. Communication with patients and their families to and often, without the families to to have the difficult the burden on patients’ and the of nurses, because the nurses feel they are suffering for a family members may need to have the several before they can the should be clear, and Patients’ families have reported they physicians and nurses to be and not about of the and is more to families than use of such as or without specific often a patient’s family members and about the patient’s Other to medical to nurses’ lives but to patients and patients’ Finally, that not the of responsibility for decision making on patients’ family members helps the burden for family members the and do to is more difficult for them than is the making and coming to a decision as a decision making will continue to be a growing need in the ICU as medical the ability to life. the Mrs J.’s situation many of the that contribute to end-of-life decision making for all Mrs J. had expressed her preferences both in writing and in discussions with her in advance of a life-threatening Grace, Mrs J.’s daughter, had a to her mother’s and in with the healthcare team about those of Mrs J.’s nurses developed a and caring relationship both with her and her daughter, coming to and Mrs J.’s values and what was most to her in life. Her nurses also in for her with physicians and the eventually for a of the Grace this and about her mother’s life. As a result of this the decision was made to discontinue mechanical ventilation and to stop tube feedings. for comfort care were written, and Mrs J. died a days later with her at her and between patients and their between patients and patients’ families and the healthcare and between members of the healthcare the that will the end-of-life decision making. this process will the by both healthcare providers and patients’ family members, patients, and make the ICU a more and caring place in which to