A Perspectives editor interviewed Mrs J's son, Mr G, and the hospitalist, Dr M, 1 month after Mrs J's death and the intensivist, Dr K, 3 months later.
MR G: She had been at home and had been living there for the last 22, 25 years with my sister, who's slightly mentally retarded. [Over] the last couple of years when my mother's eyesight was failing, she couldn't walk too well, she got very dizzy. During those last couple of years she relied on my sister to help her a lot. You know, to buy groceries. My mother also had Meals-on-Wheels to help her. So, she was living at home. Her primary disease, as I understood it, [was] pulmonary fibrosis. They've had to intubate her several times over the last couple of years…There were no discussions about taking care of her other than the way we were doing it now. Last time one of her doctors, a pulmonologist, told me there was no cure for pulmonary fibrosis and that it would just get progressively worse and worse and, at some point, she was going to die from it…They said that from the last time that she had had this done, about two years ago, her disease had progressed much further. The fibrosis had progressed.
DR K: This woman had a mixed disease. She had [chronic obstructive pulmonary disease], but she also had restrictive lung disease. Her [pulmonary function test results] a few years prior to this admission were already quite poor. So, based on those function tests, it was pretty safe to predict that she was not going to do well over time. I didn't think that she was going to survive beyond the next 8 to 12 months. Her pulmonary function tests were poor, but I thought she might be marginal enough to be discharged either to her home or to some kind of rehab facility. That part I couldn't predict. That was difficult for the family because I think it would have helped everybody's mental preparations, if nothing else, to know exactly how end stage this current episode was.
The central issue in decisions to limit or to withdraw intensive therapies from critically ill patients is not the timing of a transition to "comfort" measures. Appropriate analgesia and sedation rarely conflict with disease-specific treatment, so comfort can and should be ensured while a cure is sought.1 The central issue is whether continued aggressive therapy offers realistic hope of recovery or, if not, whether it is appropriate to allow the patient to die. To frame the issue in this way highlights the gravity of the decision and the difficult issues facing parties attempting to reach consensus about how to proceed.
Legal and Historical Background
North American physicians,2-5 nurses,6,7 bioethicists,8-10 lawyers,11,12 and the public13 have reached a broad consensus that decisions to withdraw life support are appropriate in many clinical situations. The ethical and legal justification of withdrawal of life support rests on the importance of patient consent, which itself is rooted in the concept of autonomy. Every adult patient with decision-making capacity has the right to determine what treatments he or she will receive. This right does not end with the patient's incapacity but can be exercised on the patient's behalf by an appropriate surrogate.14
The belief that it is generally inappropriate to use critical care technology to prolong dying represents a relatively recent and hard-fought consensus.11 When mechanical ventilation first became widely available, decisions to withdraw ventilation were extremely controversial. In 1975, after their daughter lay in a persistent vegetative state for 9 months, Karen Ann Quinlan's parents asked that her ventilatory support be withdrawn. They had the support of their primary care physician but were opposed by most professional medical societies, including the American Medical Association. The parents sued and won a landmark ruling in the New Jersey State Supreme Court permitting their daughter's extubation.15 The Quinlan decision sparked 15 years of intense debate about the appropriate use of life support. In 1990, the US Supreme Court acknowledged the patient's right to forgo life support while affirming the State of Missouri's prerogative to establish an evidentiary threshold for surrogate decision makers.14 More recently, the US Supreme Court has rejected the argument that limitations to life support constitute physician-assisted suicide or euthanasia.16,17
Setting limits to life-sustaining therapy has become common practice in North American and European ICUs. Survey data from 1994 through 1995 show that approximately 25% of deaths in ICUs in the United States and Canada followed a failed attempt at cardiopulmonary resuscitation, whereas 75% followed a deliberate, considered decision to withhold or withdraw some form of life-supporting therapy.18,19 Comparable data are available from European investigators.20 Some physicians have acknowledged stopping treatment despite patient and surrogate requests to continue life support.21
As decisions to limit life support become routine, the intense debate and controversy that once arose around this practice are being forgotten. Younger caregivers and those in training may have little understanding of the wrenching struggles clinicians have experienced over withdrawal of ventilatory support or of the complex cultural and emotional associations raised by limiting nutrition and hydration.22 Without this perspective, young clinicians may misunderstand families whose response to withdrawal decisions may have more in common with the response of the practitioners who first confronted these issues in the 1960s and 1970s than with the response of 21st-century practitioners after 3 decades of intense bioethical, legal, and social debate.
MR G: When we signed the durable power of attorney [for health care], I was with her with the lawyer. She [Mrs J] said at that time, "I can't make this decision [withdrawal of life support] right here and now. I want you to make it for me. And I trust that you will make the right decision at the time." I probably didn't feel very comfortable with it at that time, nor did I feel very comfortable at this time…With what I know now, back in ‘96 I would say, "Please let's mark this down. You don't want to be resuscitated. Don't leave it to one of us, one of the sons or daughters to make this decision for you because it's a very, very difficult decision to make." Because you feel somehow like you're playing God, even though you're not. It feels somehow like you have power over life and death, in a way. And that to me is the uncomfortable part. So, I would do it differently, I would persuade her to mark the box, "Do not resuscitate."
Advance care planning is perceived as an opportunity for patients to direct their care even when illness prevents them from speaking for themselves. Unfortunately, studies have shown that advance directives do not cause patients' wishes to be followed more closely,23 there does not appear to be any impact of advance care planning on care received in the hospital24 or the ICU,25 and medical costs are not affected.26 There has been modest success in Oregon with the Physician Orders for Life-Sustaining Treatment program,27 but the reasons for the overall ineffectiveness of advance care planning are complex.28 This patient's story highlights several difficulties common to ICU patients.29
Diligent pursuit of advance care directives may yield little guidance. During a previous hospitalization, a pulmonary specialist spoke explicitly to Mrs J's son about his mother's progressive pulmonary fibrosis. The patient's primary care physician subsequently addressed the need for advance care planning with the patient, specifically identifying intubation and resuscitation as issues. Mrs J was unable to commit herself to specific decisions about her care. She preferred to appoint her son as her durable power of attorney for health care. Her instructions to him were, in essence, "Do the right thing."
Many patients find it threatening to contemplate the circumstances under which a decision to limit life support might be invoked. This reluctance to make specific decisions is neither unusual nor unreasonable, but it should not end the discussion. A decision to forgo intubation or resuscitation may be beyond the patient's capacity, but that insight marks the beginning of another discussion about the patient's interests and goals.30 The clinician might have responded to Mrs J: "We know that you have severe, progressive lung disease. You have required intubation in the past and will likely need it again in the future. In the event that you develop respiratory failure and require intubation but do not recover as quickly as you have in the past, what guidance would you offer your son and your doctors? How long would you want us to continue to keep you on a breathing machine if it looked as though you would not be able to survive without it?" (See also Chapter 2, Beyond Advance Directives.)
Clinicians who conduct these discussions must learn to address the emotions underlying the patient's preferences. Mrs J's instruction to her son might have prompted the involved clinician to pursue her reluctance to speak about dying. If it proved too difficult for her to explore her fears, then perhaps she would have been willing to talk about her hopes. What did she enjoy about her life? What would she want, and, by extension, what would she have found unacceptable? Another strategy would have been to address directly the patient's reliance on the son. He accepted this responsibility dutifully but uneasily. Was she aware of his discomfort? How could she be confident that he would know what to do? If it was difficult to offer her own wishes, would she be willing to offer him guidance?
Estimating the prognosis is appropriately a part of advance care planning, but it is always easier in retrospect to say that a patient was not going to survive. Mortality prediction models can provide precise and accurate estimates of patient mortality across populations,31 but for individual patients the trajectory of dying remains unpredictable.32 Mrs J had an underlying, progressive, and usually fatal disease (pulmonary fibrosis) that carries a median survival of 2 to 3 years from diagnosis. After developing acute respiratory failure of uncertain cause requiring intubation, she was alive but with severely impaired respiratory function. As noted by Dr K, an attempt to predict short-term survival in this particular patient, in this context, is (educated) guesswork.
Of course, it is the physician's responsibility to attempt such guesswork.33 Both clinicians and patient surrogates are helped by a clear understanding of probable outcomes, and most advance directives presuppose a degree of prognostic confidence.34 Two related insights help the critical care practitioner in this situation. First, narrowing the confidence intervals around prognosis is rarely helpful in making individual patient care decisions.35,36 Most patients like Mrs J have a small chance of surviving their ICU course but not so small that the predicted mortality itself becomes dispositive. Second, prognosis defined as survival to ICU discharge is only a small factor in a complex decision.37 Most patients with advanced lung disease are concerned about functional recovery and quality of life, and most want limits placed on the use of mechanical ventilation.38 Clinicians help families by acknowledging prognostic uncertainty directly and by building on that uncertainty to expand the discussion beyond an exclusive focus on survival.
Patients need reassurance that limiting life-sustaining treatment does not mean limiting care.39 Patients with progressive diseases and poor chances of recovery may equate acceptance of death with surrender or even abandonment. A major goal in conversations with patients is to reassure them that they will be treated as aggressively as is consistent with their wishes but that their physicians' goal is to understand those wishes should curative efforts fail. Collaboration and communication among members of the health care team can provide support and reassurance to family members.40,41
DR M: I usually start by talking to the family about the patient's medical course to make sure we're all on the same page about how sick the patient is. When patients are this sick, we know that it is very unlikely that they will return to any sort of quality of life. The alternative was really just to keep doing what we were doing and then eventually try to wean her off the ventilator. Even if she did get off the ventilator, they needed to think about whether or not they wanted her to be reintubated.
DR K: Her pulmonary disease was such that during the next few months, or within the next year, the chances were that she would have another one of these episodes…I had to adjust the discussion from "Let's get your mom better, extubated, and out of the hospital" to "Sure, we might be able to do it this time but maybe this is something that needs to be addressed before she leaves the hospital."
MR G: I got a phone call from my mother before they intubated her. She said, "I can't breathe, and they want to put on this BiPAP [biphasic positive airway pressure] mask, and I don't want it." I said, "Mom, they're trying to help you. You've got to do what they want. They may have to intubate you, put the tube down." And she said, "Oh, I don't want that. I don't want it." When I arrived she was totally sedated. She was not conscious at all…I was hesitant about taking the tube out and saying, "That's it." I wanted to see if she could make it without the tube. This was discussed when we finally met. They [the physicians] felt that they would be happy to take the tube out but…they wanted me to tell them not to put the tube back in if she failed.
The son's perception of the decision-making process was that the final responsibility was his alone. As a matter of law and ethics, Mrs J's physicians shared decision-making responsibility. The failure to ensure that Mr G appreciated their role placed an undue burden on him.
A patient's right to provide consent for treatment is not abrogated by his/her illness. This right may be exercised on the patient's behalf by a surrogate decision maker. If the patient's wishes are known, this surrogate should apply the patient's wishes explicitly (substituted judgment); when the patient's wishes are unknown, the surrogate should attempt to make a decision in the best interests of the patient. In this case, it seems clear that Mrs J had communicated to her son substantial reluctance about intubation and intensive care. If the hospitalist and the intensivist were unaware of this crucial information, then their effectiveness may have been diminished. Critical care physicians need to be active participants in this exploration of the patient's wishes.42 They might have approached Mr G as follows: "We need to understand what your mother would want in this situation. We can bring medical information and an understanding of prognosis, and you can bring knowledge of who she is as a person and how she has viewed her life. Together, we can try to make the best decision for her."
These 2 standards for surrogate decision making—substituted judgment and the best interests of the patient—represent essential shifts in both perspective and moral responsibility.43 Mr G felt burdened by the perceived responsibility to decide whether this was the day that his mother would die. His real task was less onerous: he was in the best position to help the physicians to understand his mother's wishes. Because Mrs J's physicians focused the discussion on actions rather than on Mrs J's prior wishes or best interests, Mr G perceived, rightly or wrongly, that he was left with responsibility for his mother's death. Shifting the perspective to the patient's wishes is crucial to effective decision making at the end of life.44 Family members whose own grief prevents them from deciding to limit treatment may affirm the appropriateness of limits out of respect for their loved one's wishes. By speaking for their loved one and not for themselves, family members may truly substitute the patient's decision for their own and that positive affirmation may make their loss more bearable. This shift in perspective is the difference between the language of "giving up" on someone, which inevitably carries extremely negative connotations, and that of "letting go," which allows a more self-effacing, even altruistic, interpretation.
Family members and physicians cannot predict perfectly a patient's wishes.45,46 This finding has been cited as evidence against surrogate decision making,47 but some patients have not established preferences for end-of-life care,48 and many patients, such as Mrs J, prefer their surrogates to use their judgment rather than be bound by the specifics of living wills.49,50 Patients cannot anticipate all the possible circumstances of dying, but they can direct the people who have cared for them in their lives to continue to care for them as they die.
Families arrive at decisions to withdraw life support through a social process that has cognitive, affective, and interpersonal aspects (Box 38-1).48,51-53 Certain milestones indicate that families are moving through this process: a willingness to admit that recovery is not likely or not possible, acknowledgment that the patient would not have wanted to continue in his or her current medical condition, and struggling with the conviction that they are doing the right thing (ie, that the decision will not threaten important relationships among surviving family members).52
Box 38-1Letting Go: Processes Whereby Family Members Work Through Their Grief to Arrive at the Point of Being Able to Let Go of a Loved Onea |Favorite Table|Download (.pdf) Box 38-1 Letting Go: Processes Whereby Family Members Work Through Their Grief to Arrive at the Point of Being Able to Let Go of a Loved Onea
|Cognitive Aspects |
|Seek information and understanding about the critical illness, including reassurance that medical care is good and the clinicians providing that care are trustworthy. |
|Affective Aspects |
|Bring closure to a life. Tell the patient's story in a way that creates meaning for the patient's life. Frame the prospect of death to avoid the cultural taboo of "giving up." |
|Interpersonal Aspects |
|Protect and maintain family relationships threatened by the decision to withdraw life support. |
The framework in Box 38-152 can guide clinicians in their family interactions. Family members need clear, consistent information in language they can understand. They need that information as soon as it is available. Delaying giving information to families undermines the anticipatory grieving that is an important part of the affective process of making decisions about withdrawal of life support.54 Prognostic uncertainty in the ICU also can prevent family members from working through with each other the impact of the illness and decision to withdraw. To allow families to process their emotional responses, they need to be aware of the possibility of death even as they are supported in their hope of recovery. Helpful and problematic clinician communication strategies are shown in Box 38-2.86,127,128,129 (See also Chapter 4, Dealing With Conflict in Caring for the Seriously Ill.)
Box 38-2Supportive and Burdensome Clinician Strategiesa |Favorite Table|Download (.pdf) Box 38-2 Supportive and Burdensome Clinician Strategiesa
|Supportive Strategies |
|Frequent, timely (ie, as soon as poor prognosis is recognized, often on admission to intensive care), and consistent communication among clinicians, care providers, and consultants |
|Availability of physician staff to answer questions when they arise |
|Encouragement of family discussion while maintaining focus on what the patient would have wanted |
|Good symptom control |
|The practices of empathy and presence |
|Divisive/Burdensome Strategies |
|Delaying discussion of withdrawal of life support despite poor prognosis |
|Withdrawing from contact with the family as death approaches |
|Placing the burden of decision on one person |
|Arranging for withdrawal of life support, then delaying the actual withdrawal |
DR M: [The decision to withdraw life support] was actually very, very easy. They didn't ever want their mom to suffer. They realized that her quality of life was significantly impaired. We stopped by after the withdrawal process to make sure the family was OK with it, and they were thrilled…In the brief period of time that she was lucid, she was kind of joking with them. The family was wonderful and was most grateful for the opportunity to share some laughs with their mother before she expired.
MR G: She was aware that we were there, we kind of made her laugh…You could see her chest move, and she smiled, but then she would go back into this sort of dazy, glazy kind of look on her face…She made some sounds when I tried to get her to say something, but it was incoherent even at the best of times after the tube was removed. I look back on it, and I still don't feel comfortable about having had to make this decision [to remove the endotracheal tube]. The doctors at the hospital knew, I guess they've gone through this before, they said they didn't want me to feel guilty.
DR K: Definitely. I think it was very, very scary for him to be the one responsible, legally, for making this decision…He wasn't really making a decision to allow his mother to pass away, for example, it was more of a decision to say that she had passed beyond the point where medical intervention was possible and that now we should switch back to a mode where we just allow her to do what her disease process was going to do. But we would use modern medicine to allow her to stay comfortable during that period.
Most families are open to setting limits on intensive care, and most withdrawal discussions are not contentious.37,55,56 Disagreements about how to weigh the continuing burdens of treatment against a small chance of improvement are to be expected57 and are usually handled through an intuitive process of negotiation.58-60 Guided by an appreciation of the patient's wishes, the parties often agree on a time-limited trial of therapy, followed by review and withdrawal of life support, if the patient does not improve.61 Physicians and families are about equally likely to desire continued aggressive therapy.55,62
In this case, the hospitalist perceived Mrs J's family to be comfortable and satisfied with limitations on life support after a trial of aggressive therapy. The family's experience was quite different. Mr G reports being conflicted about his role in his mother's death, leading to lingering guilt over the decision. Despite Dr M's careful attention, he does not appear to have been aware of the depth of Mr G's grief. Even well-intentioned and capable physicians may become so accustomed to the withdrawal of life support that they focus on decision making but fail to attend to the human drama involved. Families have cited the opportunity to voice concerns as important to their experience,63 and there is a growing body of empirical research that documents increased psychological symptoms in family members of ICU patients, including acute stress, high levels of anxiety, depression, and significant posttraumatic stress response.64,65 Predictors of increased psychological symptoms vary among multiple small studies and the specific symptom being assessed. Female sex, being the spouse of a patient, receiving inconsistent or incomplete information, involvement in end-of-life decision making, and the death of the patient have all been identified as risk factors for psychological symptoms.66-70 Two intervention studies have demonstrated the effectiveness of a communication strategy71 and an educational intervention72 in decreasing psychological symptoms. In the study by Lautrette et al,71 122 families were randomized to usual care vs receipt of a brochure on bereavement and meeting with medical staff trained in communication strategies that allowed families more time to speak. In a study by Chien et al,72 a trained ICU nurse assessed the family's needs at patient admission and created an individualized education program. Families' symptoms seem to abate with time,64 but little is known about the long-term effects on families of decisions to limit life support.73 Disagreement and conflict are common in the ICU, although only a few conflicts arise in disagreements over life-sustaining treatment.74,75 Medical futility attempts to frame a dispute over continuing intensive therapy as an issue of prognosis76 so that if the likelihood of functional recovery after a proposed course of therapy is less than 1%, then physicians may assert the prerogative to withdraw therapy without the consent of the patient or surrogate decision maker. However, other researchers have criticized this approach for the absence of any consensus definition of futility, the absence of applicable clinical research data to define this 1% threshold, the variable application of an arbitrary standard, and the setting of goals of care by assertion rather than discussion.77,78
Some regions have assessed community values to mitigate unilateral, futility-based decision making. In Denver, Houston, and other areas, conflicts over continuing aggressive life support are resolved through an algorithm that relies on community-based consensus standards,79,80 an approach adopted by the Council on Ethical and Judicial Affairs of the American Medical Association.81
Futility tends to emphasize power over persuasion, whereas family members of ICU patients desire clear information about the illness and the patient's prognosis (Box 38-3). Unfortunately, skill in communication is not a universal strength of critical care practice.82 In 1 study, 23% of 461 family members believed that neither the patient nor the family was part of the discussion about end-of-life decisions.83 In a 1990 survey of physician members of the American Thoracic Society, 34% of 879 respondents reported continuing therapy that the patient or surrogate had requested be stopped, and 82% made unilateral decisions to withdraw therapy, often without the knowledge or consent of the family and sometimes despite their explicit objections.21 To our knowledge, no more recent US studies have been published; 1 more recent study in France involving emergency mobile units concluded that treatment withholding and withdrawal were common in this setting.84
Box 38-3A Dozen Needs of the Family in the Setting of Critical Illnessa |Favorite Table|Download (.pdf) Box 38-3 A Dozen Needs of the Family in the Setting of Critical Illnessa
|To have questions answered honestly |
|To know specific facts about what is wrong with the patient |
|To know the prognosis for recovery |
|To be called at home about changes in the patient's status |
|To receive information from the physician (at least) once daily |
|To receive information in understandable language |
|To believe that hospital personnel care about the patient |
|To be assured of the patient's comfort |
|To be comforted |
|To express emotions |
|To find meaning in the death of their loved one |
|To have the opportunity to eat, drink, and sleep |
An arbitrary futility threshold does not acknowledge the role of families in decision making,85 the complexity of the decision-making process for families52,86-89 and physicians,90 or the insights into effective dispute resolution gained in other fields.58,91 If family members feel excluded or marginalized, disagreements may be more likely to progress to conflict or harden into impasse (Box 38-4). In 1 randomized controlled trial of ethics consultations in conflicts over ICU treatment, an intervention focused on dispute resolution led to significantly fewer ICU days and ventilator days, and less use of artificial nutrition and hydration, in patients who subsequently died.92 Physicians and nurses who recognize the affective and social dimensions of family decision making will be more effective clinicians.82,93
Box 38-4Families' Reasons to Refuse to Consider a Recommendation to Withdraw Life Support |Favorite Table|Download (.pdf) Box 38-4 Families' Reasons to Refuse to Consider a Recommendation to Withdraw Life Support
|Mistrust of Medical Professionals |
|Conceptual, based on cultural and economic factors |
|Experiential (eg, failure of clinicians to show empathy; prior experience of perceived prognostic inaccuracy) |
|Poor Communication by Medical Personnel |
|Failure to convey a clear understanding of the medical facts |
|Reluctance of clinicians to acknowledge dying until initiating withdrawal of life support |
|Mixed messages from multiple clinicians |
|Guilt on the Part of Survivors |
|Fractured relationships, made worse by time or distance |
|Family's perception of personal responsibility for the patient's death, especially when a decision to withdraw life support is framed as "giving up" on a loved one |
|Cultural, Religious, or Scientific Views Outside the Mainstream |
|Withdrawal of life support interpreted as active euthanasia |
|Ability to find meaning in patient outcomes considered poor by medical personnel (eg, survival in a persistent vegetative state) |
Tapering Life-Sustaining Interventions While Providing Comfort
DR M: [The family] didn't ever want their mom to suffer…So one thing we negotiated was we didn't want to see her have any distress but they wanted to talk to her. And they were really, really pleased at how things had worked out, and she had woken up enough to talk to them before she became really, really somnolent again…What happened was she became progressively more and more and more somnolent, mostly from her lung disease. She ended up being quite comfortable; I don't think we even needed to use [much] morphine to keep her comfortable.
MR G: I was expecting her to talk after the tube was out, but she never regained enough facility to talk to me. I did get her to blink her eyes at one point, because I thought that she was in pain. I said, "Mom, would you blink your eyes and tell me if you need more pain shots?" And she blinked.
Mrs J's family decided to withdraw her ventilatory support. She was extubated and small doses of morphine were administered to treat dyspnea. She appeared comfortable before gradually becoming somnolent and then unarousable. Opioids used to treat dyspnea in patients with advanced respiratory illness can depress respiration and hasten death, but when carefully titrated to control refractory symptoms, this use is established practice2 and appropriate to end-of-life care.16,17,94 (See also Chapter 6, Management of Dyspnea in Patients With Far-Advanced Lung Disease.) Acceptance of the risk of hastened death is legally14 and morally95 justified by the rule of double effect.
The critical care team managed a difficult balance between allowing Mrs J to awaken but not to suffer. Unfortunately, Mrs J's experience may not be the norm. In the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment,96 almost half of the 5176 patient or family members who were able to respond reported patient pain, with 15% reporting extremely severe or moderately severe pain occurring at least half of the time.97 This study was conducted some time ago, but more recent studies98-102 are smaller and have not shown different findings. Some patients may be able to use simple tools to indicate pain, even when intubated.103 If direct patient communication or self-report is impossible, ICU physicians and nurses may sometimes rely on the proxies of behavioral and physiological signs of pain.98,99 (See also Chapter 5, Managing an Acute Pain Crisis in a Patient With Advanced Cancer.)
Families report that seriously ill, hospitalized patients also experience agitation, anxiety, depression, confusion, dyspnea, and fatigue,100,101,104 but few data exist concerning the symptoms experienced by dying ICU patients. More than half of 50 ICU patients who could respond to a modified Edmonton Symptom Assessment Scale reported moderate to severe discomfort, thirst, difficulty sleeping, anxiety, pain, and unsatisfied hunger.102 Pain, anxiety/agitation, and dyspnea can all be effectively managed pharmacologically95,105-107 and can be augmented by positioning, eye care, and mouth care.108
Managing the Withdrawal of Therapy
MR G: They said that with her disease, as it stands now, the retaining of the [carbon dioxide] levels, that that would cause the person just to get sleepier and sleepier and sleepier and…eventually the heart would stop because of the lack of oxygen and the overabundance of [carbon dioxide] in the body…They said they do have to give the person morphine for the feeling of not being able to breathe…They were extremely surprised and, I think, very surprised, in fact, to find that she lived for 2 and a half days after the extubation…in a nicer room, with more comfortable surroundings. More like your home would be, your bedroom in a home, with pictures on the wall and views out the window. The views were beautiful…There was a radio in the room, and there was a couch that you could pull out and actually sleep there if you wanted to stay…I thought it was very, very nice that they could do that as opposed to taking her home.
Any therapy that supports life may be withheld or withdrawn.109-115 The most frequently withdrawn therapies are (in order) blood products, hemodialysis, vasopressors, mechanical ventilation, total parenteral nutrition, antibiotics, intravenous fluids, and enteral feedings. Physicians frequently withdraw therapies in a sequence112 and vary in their practice of withdrawal,109 depending on familiarity, expense, and invasiveness.116 The mechanics of withdrawal of life support are frequently coordinated with families' explicit social, ethical, and religious objectives.86 (See also Chapter 32, Negotiating Cross-cultural Issues at the End of Life, and Chapter 33, Palliative Care for Latino Patients and Their Families.)
Many algorithms for withdrawing different technologies have been suggested44,117-119 and are based on expert opinion.120 Few studies have assessed patient comfort, family satisfaction, or the experience of caregivers during treatment withdrawal.121
The best means of withdrawing mechanical ventilation is debated, weighing the merits of reducing ventilatory support while leaving the endotracheal tube in place (terminal weaning) vs removal of the endotracheal tube (extubation).117,122,123 Patients receiving high levels of ventilatory support, and those with difficulty clearing secretions or protecting their airway, frequently struggle and gasp when extubated and may benefit from having the endotracheal tube in place. Conversely, extubated patients who can support their own ventilation, even briefly, benefit from closer contact with loved ones and may be able to communicate more easily.
Setting: Creating a Caring Environment in the ICU
DR M: One of the sons is an opera singer, and he actually sang to her in the ICU and was thrilled that he'd gotten the opportunity to do that.
MR G: I sang "The Lord's Prayer" to her…She was raised a Roman Catholic, and I felt it was important. This was shortly after the priest came…I felt it was important she have a priest there so we gave her the Last Rites. So, shortly after that I felt that it was a good time to sing to her. And I asked her, and this is one of the things that made her laugh, I asked her if she wanted to hear me sing, and there was no reaction. So, I said, "Do you want [my brother] to sing?" And there was this big laugh,…and she smiled. And the reason she did is because [my brother] sounds terrible. He was by me on the other side of the bed, and he started singing, and she kept laughing. [He laughs.]
Family participation in patient care may provide a sense of comfort, intimacy, and involvement when families might otherwise feel helpless. Caregiving activities can include assisting with face washing or hair combing or even assisting with postmortem care. Family members can communicate with their loved one through speech, touch, visual aids (eg, pictures or photographs), and, as in this example, song. Table 38-1124 outlines practices that may assist in creating a caring environment in an ICU.
Table 38-1Things Clinicians Can Say and Do With Family Members of Dying Patientsa |Favorite Table|Download (.pdf) Table 38-1 Things Clinicians Can Say and Do With Family Members of Dying Patientsa
|Activities Related to Patient and Physical Environment ||Activities Promoting Optimal Communication |
|Personalize and domesticate the patient's environment through use of family pictures, afghans, religious ornaments, personal pillows, music from home ||Carefully listen to the family member; use clear and understandable language; share information in a timely manner; explain all procedures in understandable, lay terms |
|Arrange for time to talk and visit with patient ||Help the family to understand the implications of prognostic information |
|Encourage a family dialogue with and about the patient (eg, tell family stories) ||Anticipate that some family members may respond with anger, emotional outbursts, or temporary inconsolable grief |
|Provide for family privacy with the patient so that personal words can be expressed ||Assist family members to understand, participate in, and accept the transition from aggressive, care-saving goals to end-of-life, palliative care goals |
|Provide for facial tissues and chairs at the patient's bedside ||Coach the family in communicating with various members of the health care team, including physicians, clinical nurse specialists, social workers, pharmacists, clergy |
|Remain in visual contact, but outside hearing range, in case the family needs support ||Ascertain whether family members want to be present during withdrawal of treatment (eg, during terminal weaning or extubation), and advocate for the family's wishes |
|Help the family to prepare for the patient's death; this may involve having family members participate in various aspects of care (eg, bathing, hair combing) || |
|Involve willing family members in assisting with postmortem care || |
It is important to acknowledge family concerns and preferences for inclusion in activities at the end of life. Respect for emotional limits is itself a caring practice. As Mr G acknowledged, "For some reason I did not want to be in the room. I was dreading, literally dreading, the moment when she passed away if I was in the room." Many family members, however, prefer to be present at the time of death. Creation of a supportive milieu around death in the ICU includes allowing for sacred end-of-life rituals. Usually, these are best conducted by the patient's own spiritual leader. ICU clinicians may want to be involved and, in the process, may be positively affected by participating.125
End-of-life rituals are not limited to patients and their families. Health professionals have not been prepared adequately to deal with the emotions associated with death and dying.126 They may need encouragement and assistance in processing their emotional responses to continue to feel positive about their work with dying patients and their families. Support from unit leaders, hospital chaplains, or members of the ethics committee can and should be made available to ICU clinicians who struggle with ethical and other practice issues during their care of dying patients.41 Physician and nurse colleagues can develop a philosophy at the unit level about what constitutes good end-of-life care and can receive comfort from debriefing discussions after the loss of a patient. (See also Chapter 42, Self-care of Physicians Caring for Patients at the End of Life.)