Durable Powers of Attorney and Death in the Critical Care Unit

A growing concern in critical care today is the influence of persons designated via durable powers of attorney for health care (referred to hereafter as DPOAs) in making end-of-life decisions for a loved one in an intensive care unit (ICU). Recently a young nurse who had transferred out of the ICU to work in an outpatient setting almost tearfully explained to me that she had left critical care because it too often felt as if she were doing serious harm to her patients rather than helping them. The challenge arose when treatments advocated for by DPOAs appeared to conflict with the patient’s previously expressed wishes, resulting in prolonged suffering for the patient and emotional distress for the health care team. What a terrible conundrum! What began as a legal solution to help ensure that patients’ wishes were honored has become an ethical problem for everyone involved.To better understand this issue, it is helpful to reflect on how we, as Americans, have historically approached dying—both as a medical event and as a cultural phenomenon. I will examine the complex issues of personal choice that underlie this topic. Next, I will review some of the issues encountered by a person who has agreed to serve as the DPOA for health care for a friend or loved one, as well as the ethical and emotional dilemmas encountered by nurses and health care professionals who care for critically ill patients. Finally, I will consider strategies that may help support everyone involved as they navigate this difficult time.Modern medicine has radically changed the way we die. Less than 100 years ago, dying was almost always a “natural” event. When a person “took ill,” physicians did whatever they could, but with few tools at their disposal, nature soon took over, and the patient died. In many cases the death came relatively quickly. Most deaths happened in the home. There were social and cultural norms that helped patients and families navigate the reality of dying.1 In his article, “It’s Mourning in America,” Cody Delistraty1 notes that the culture surrounding death and grieving has changed radically since the beginning of the 20th century. Today death happens in the home only about 30% of the time and, except for hospice, family and friends are often absent. Delistraty points out that dying in America has changed from a rather public affair with cultural norms and practices to support those who are grieving to a rather private experience with limited opportunity to express one’s grief.Because of the successes of modern medicine, apart from accidents and sudden cardiac events, most deaths now require a choice, what I would call a most fearsome choice. This choice carries with it one of the most profound consequences of our lives: it shapes how we die and, to some extent, even when we die. Today, I rarely hear the words death or died. We use euphemisms such as she passed, he entered eternal time, someone “lost” their spouse, or “he’s gone.” These 2 realities of modern life, the medicalization of dying and cultural avoidance of the mention of death, mean that most people do not have any personal history with death and dying. They lack the “old-fashioned' established “norms” or traditions to guide them and they have no shared language to talk about death or dying and what these experiences mean to us as individuals and as members of our families, communities, societies, and workplaces.When we do reflect on death, we often approach it as an abstract concept or theoretical discussion rather than a lived reality. But all this is not so true for you, the critical care nurse. In the ICU, death happens rather regularly and it often happens to patients who may have been with you for a while. You have a professional and a human concern. Nevertheless, you too are sort of trapped in what has become our “modern” lack of social and cultural norms surrounding death and dying. In the meantime, the health care team needs to know what to do when the patient’s heart suddenly stops beating or they become so ill that a mechanical ventilator is needed. So, dying in the hospital, and particularly in a critical care unit, requires a variety of difficult choices. Here and now, decisions must be made. Dying in this situation becomes a legal issue. Who is to be responsible for making decisions for the person if they are unable to do so themselves?In the best-case scenario, the patient will have thought carefully about their wishes. Thankfully hospitals and physicians encourage patients to complete advance directives and have them on file. Although they are often inadequate for the specifics of the situation, advance directives serve as a beginning point for discussion. A patient may have had several conversations about their desires with a loved one. However, for many people, the issue may be too fraught for them to contemplate with any specificity. And because these conversations are often treated as theoretical—framed with “if” scenarios—they allow people to avoid confronting many of the most important and difficult issues. For example, most people outside the health care environment have little understanding of the realities of dying with various diagnoses or treatments and the associated issues such as being cut off from interactions with family and friends when sedated and connected to a ventilator, experiencing pain and eroding bodily function, and potentially continuing in such a condition for an extended period. These issues are often left out of our thinking. Mortality, difficult to begin with, becomes more complex and difficult at every turn.The responsibility involved in end-of-life decisions makes the process challenging for individuals making choices for themselves—and the process is often even more difficult for those entrusted to carry out those wishes. Now the ethical and the legal become entwined. For critical care nurses, this feeling of responsibility is also felt keenly because almost everything you do could have lifesaving or life-ending ramifications. As a critical care nurse having served as DPOA for a colleague, I can attest that the sense of responsibility is enormous. The decisions DPOAs make on behalf of patients may leave DPOAs with long-lasting questions, doubts, or feelings of guilt. It is little wonder then, that many DPOAs, when faced with the difficult decision to terminate a ventilator or other life support system, find it difficult if not impossible to do. Here you, as the person most conversant with both the patient and the surrogate decision maker, have the opportunity to work with the DPOA to help ensure that good decisions are identified and carried out.The good news is that these people have agreed to act as a DPOA because they care for the person involved and want to do both what the person wishes and what is best for them. They want to leave this situation knowing they have done their best and that what they did was a good thing to do. As with most critical care situations, this is a time when you are caring for both the patient and the DPOA or the patient’s family. As a nurse, you are in an ideal position to support the DPOA in making informed decisions that can help both them and you feel more at peace with the end-of-life process.My goal here is to try to identify ways to cope with or manage the inherent tension that is manifest in these situations. To begin, you should clearly identify your own feelings, concerns, and yes, biases about the death of this particular patient. To do this though, you must first give serious consideration to your ideas about death for yourself and/or for loved ones, being aware that these ideas will change as you age, as realities change, and as you have more experience. It is helpful to initiate as many conversations as possible with people whom you trust and with whom you feel comfortable being challenged. Dying is something we each must do alone. But preparing for death is immeasurably helped by hearing what others have to say and using wisdom from them to work our way through the questions and concerns we have. This preparation will help equip you to initiate meaningful conversations with your patients, their families, and their DPOAs. It is also helpful to have some “language” ready at hand to use when talking with patients and their families such as “are you worrying about what might be happening, or might be going to happen?” Mostly, of course, when we just listen, we will find that their thoughts and concerns give us ideas about questions to ask and possible paths forward. Several shorter conversations are usually helpful, as we all tend to get overwhelmed with the difficulty of these realities. Social workers can also be quite helpful in giving us language and in leading such discussions with families.In their desire to do what’s best for a friend or loved one, DPOAs may not realize that pursuing every possible treatment is often not the most compassionate or beneficial choice. My best understanding of the nature of ethical action is from a contemporary philosopher, Professor Robert Sokolowski. To paraphrase him, moral action is where one takes the good of the other to be their own good.2 Ethics then, is much less about what is right or wrong and more about identifying and implementing to our best ability what is “good” where perfection is impossible. What is good may be clarified by looking carefully at the reality of the particular patient, family, DPOA, and medical situation. The nurse’s role then is to gently help the family or DPOA to see the realities of prolonged ventilation and bedrest, the stress this puts on the patient, themselves, and other members of the family and friends, and the likely outcome. With luck, you may help family members begin to see that in trying to prolong life they may be, in fact, merely prolonging death. It may be helpful to remind them that nature is still finally in charge. Many of us have seen patients get better and eventually go home who had been deemed “dying” and taken off the ventilator. So their decision is not necessarily final. Further, it may be useful to help DPOAs and yourself recall that what seems best in difficult situations often changes with time and the reality that is present. Many patients whose original thought was to “do everything” alter that decision in the light of the realities they face.3 When they cannot change their mind themselves, the DPOA has the right, perhaps even the responsibility, to try to think “for” their loved one, to put themselves in the patient’s place to arrive at a loving decision … to take the good of the other as their own good. The two are inextricably intertwined.As I write this, I am reminded that this is a discussion about how you as a nurse might do more even when I know you are already deeply immersed, if not overwhelmed, by the complexities of the world you navigate. So, what are you to do with all this? My immediate thought is that you must first and foremost, take care of yourselves! I think of this as the “Copernican turn” of nursing health. We cannot take care of others if we are not well ourselves. Most of us find it difficult to talk with any specificity about our work and our feelings with our loved ones who are not in health care. If possible, work with your organization or your nursing association to build a support system for yourself and your colleagues. Perhaps plan a regularly scheduled time at a local café for a latte and a chat. Debriefing after a difficult time can often be worthwhile. Again, moral action is action where we take the good of the other to be our own good. The goods of the patient, family, DPOA, critical care nurses, and administrators are different, yet intimately intertwined. Nursing administrators must be a part of these conversations and any solutions that can be found. Situations such as we have discussed here can sap energy and joy from nurses and physicians. Perhaps you can help clarify the good of your patient, the family, or the DPOA and yourself to achieve as close to a “good death” as possible. Doing so will leave the patient’s family with something of a sense of well-being while also setting you up for a more satisfying future.