John, a 60-year-old mechanic, never cried. However, tears came to his eyes as he described his last memories of Andrew, his father. Andrew spent the final days of his life in an intensive care unit (ICU) bed, with his hands restrained to keep him from pulling out one of the many tubes running into his body. Andrew had suffered from heart failure for many years. Recently, his condition had deteriorated and he had been in and out of the hospital, often sent home with antibiotics for his frequent bouts of pneumonia or, eventually, with intravenous inotropes to support his heart. Despite these interventions, Andrew's kidneys had begun to fail, and he was receiving dialysis through a line in his chest, urinating smaller and smaller amounts through a catheter, and receiving a cornucopia of other intravenous medications. Restraints were applied near the very end of Andrew's life because his orientation had started to falter, a probable result of hospital-induced delirium along with the effect of his multiple organ failure. John remembers Andrew begging his family to remove the restraints that held him down. Andrew died in that ICU bed, with his hands tied to the side rails.
Andrew's story reflects a health care culture that values cure over care, sometimes at serious cost. This cultural theme has an unfortunate impact on end-of-life advance care planning in the ICU, which is too often relegated to brief and last minute discussions that fail to allow for patient autonomy and empowerment. As a result, patients are subjected to medically futile treatments that lead to a loss of dignity and fail to improve quality of life. Evidence shows that futile medical interventions can be as demoralizing to nursing staff as they are painful for patients and families.1
Effective end-of-life advance care planning is especially important to ICU nurses, who frequently care for patients at end of life. Estimates indicate that one-fifth of ICU patients die while in the hospital.2 Nurses are among the most trusted of health care clinicians and are well poised to stimulate a culture shift by beginning conversations about end of life earlier and engaging honestly and personally with patients in these discussions.
Recently, the Physician Orders for Life-Sustaining Treatment (POLST) form has emerged as a reliable and effective tool to facilitate patient autonomy at end of life.3 The POLST form addresses specific end-of-life treatment options, including cardiopulmonary resuscitation (CPR), intubation, and comfort care measures; in some states, use of intravenous fluid hydration and artificial nutrition are also discussed.3 Because of its specificity and organization, the POLST form can provide a framework within which nurses can construct honest conversations about end-of-life advance care planning. Nurses who are familiar with these forms and use them as a tool to engage patients in end-of-life conversations can facilitate autonomous decision making at a time when patients need it most. In addition, awareness of evidence-based care guidelines for patients at end of life can help nurses to ensure that they effectively facilitate advance care planning for this population.
FUTILE MEDICAL CARE: WHY MORE IS NOT ALWAYS EFFECTIVE OR OPTIMAL
Failure to engage in adequate end-of-life care planning can result in prolonged medical treatments that cause harm to both patients and nurses. Schneiderman et al7 define futile medical care as interventions aimed at achieving a level of function that is possible but not probable and not generally expected. Futile care often leads to increased pain, humiliation, and loss of dignity on the part of the patient and leaves patients and nurses with a sense of meaninglessness.8 Nurses may experience increased moral distress when they are unable to address patients' end-of-life concerns honestly and are forced to give care they deem to be futile.1 Anger, frustration, and moral suffering also arise for nurses when they feel they cannot advocate for appropriate changes to their patient's treatment plan.5
Families of patients at end of life are often perceived as the most ardent supporters of aggressive treatment. However, recent evidence shows that such assumptions are not always correct. Teno et al9 found that family members whose loved ones experienced more aggressive medical treatment at end of life reported greater dissatisfaction with care than did those whose loved ones received less aggressive treatment. Aggressive treatment in this case undermined families' perceptions of respect and shared decision making offered to themselves and their loved one at end of life.9
Evidence-based care guidelines indicate that before any discussion of medical futility, nurses need to allow patients to define their own goals of care.10 This necessitates a thorough, honest conversation between the patient, who needs to decide these goals, and the nurse, who is obligated to provide a realistic picture of treatment options on which patients can base their decision. Direct and effective communication is especially important because perceptions about what constitutes futile care vary depending on personal values and the lens through which patients, nurses, and families see certain medical interventions.10 Goals of care, and thus the treatments deemed medically futile, should always be driven by the patient. To make appropriate and informed decisions about their care, patients must be presented with an honest, understandable, and complete picture of their prognosis and the anticipated effectiveness of treatment options available.
INCREASING NURSE INVOLVEMENT IN END-OF-LIFE CARE PLANNING
The need for a more effective approach to end-of-life advance care planning has already been recognized publicly. The American Academy of Nursing has identified end-of-life advance care planning as an essential component of care for patients with life-limiting conditions and stressed that this process should begin well before patients reach the terminal stage of their disease.4 The American Academy of Nursing's Task Force on End-of-Life Care has advised that the Patient Self-determination Act be expanded to include requirements for initiation of end-of-life care planning and facilitation of patient autonomy throughout this process.4 Health care is approaching an increased, policy-driven focus on end-of-life care planning and critical care nurses need to be prepared to be part of this process.
Nurses should be compelled to participate in end-of-life care planning by profession as well as policy. Patient advocacy is one of the core tenets of professional nursing. Nurses often spend the most time with patients and are most able to identify with accuracy a patient's moment of transition from potential to cure to futile care.5 Although end-of-life care planning is ideally introduced before this threshold is reached,4,5 nurses' ability to recognize this transition speaks for an attunement to patient condition that other clinicians are lacking and that can be instrumental in recognizing opportunities for earlier initiation of end-of-life advance care planning. In a qualitative study of patient perceptions of end-of-life care, Pattison et al6 chose to include nurse perspectives in interviews because nurses develop closer relationships with patients than other clinicians do. This close relationship and intuitive understanding of patient needs allow nurses a unique window into the patient's values, which often dictate the level of medical intervention he/she is willing to endure.
CURRENT BARRIERS TO END-OF-LIFE CARE PLANNING
Despite recommendations that end-of-life care planning be addressed before patients reach the terminal stage of their disease, evidence shows that early initiation is rarely achieved.4 When it is, directives are often incomplete, unavailable, or simply not followed.4 In a study of 505 patients admitted to a cardiovascular ICU, researchers found that 64% did not have an advance directive on admission.12 Nurses are familiar with the requirement that patients be asked on admission whether they would like to complete an advance directive, but asking this question is insufficient. Of patients who declined to initiate an advance directive in the above study, 33% chose to do so simply because they did not understand the question.12
Even when patients do complete advance directives, they are not guaranteed that their wishes will be valued. Interviews with ICU nurses involved in end-of-life care revealed that nurses often encounter situations where engaging in patient advocacy takes the form of arguing for adherence to advance directives that are completed but are not being followed.5
Nurses also consistently describe situations where they are forced to argue for a patient's wishes against the wishes of physicians.5 Two of the biggest barriers to end-of-life care planning, as identified by nurses, are disagreements among physicians about treatment options and physician's reluctance to engage in honest conversations with patients and families about end-of-life.2 End-of-life care is also significantly threatened by lack of understanding among family members about the implications of lifesaving interventions such as CPR and intubation.2,13 Nurses report that often, family members are not provided with simple but troubling realities, for example, that their loved one will be unable to talk while intubated.13
The nature of the end-of-life discussion itself can present obstacles to care as well. Clinicians feel that the conversation is time consuming and do not know how or when to initiate it in situations where prognosis is unpredictable, as with chronic illness, despite evidence that patients with chronic illnesses actually prefer this topic to be addressed early in their disease process.11,14 Critical care nurses sometimes experience the onus of patient advocacy at end of life in the context of a medical culture that still values cure over care. To act effectively as advocates, nurses need to firmly establish the patient's goals and paint an honest and realistic picture of treatment options for both patient and family.
BENEFITS OF EFFECTIVE END-OF-LIFE ADVANCE CARE PLANNING
Patients as well as families benefit from direct and honest advance care planning at end of life. Perhaps, some of the discomfort that nurses and physicians feel about addressing this topic can be allayed by the knowledge that patients prefer reality over speculation. Patients diagnosed with cancer reported that their desire to know the facts of their prognosis and treatment options outweighed their fear of such a discussion.15 Health care providers who are reluctant to begin these conversations should consider such evidence, as they may be under the incorrect assumption that withholding information protects patients from knowledge they cannot handle or do not want.
End-of-life care planning also enables patients to detach themselves from unrealistic expectations and increases life enjoyment and acceptance of death.15,16 Elderly participants in one study said that they experienced satisfaction when they were able to practice altruism by declining aggressive interventions so that health care resources could be conserved for others who might need them more.16 Rather than forcing patients to choose death, discussing end-of-life care helps patients achieve a sense of control and allows them to make decisions that are in accordance with their values.15
Perhaps, the hardest part of having these conversations is not the patient's reaction but that of their families and loved ones. Patients report that their ability to arrive at a satisfactory end-of-life care plan often hinges on relatives' acceptance of their decisions.15 Family members' misunderstanding of treatment options represents a barrier to end-of-life care,2,13 and so does the guilt that family members feel at the idea of withdrawing supportive treatment. For families, participating in end-of-life care planning helped to assuage this guilt and led to relief once they had been released from the exhausting struggle to keep their loved one alive at all costs.16
Still, guilt and conflict of interest on the part of family members can represent a significant barrier to end-of-life care. Many patients are willing to submit to aggressive treatments to satisfy loved ones, even when they themselves would prefer to forgo added interventions.15 This underlines the importance of beginning end-of-life care planning discussions early, so that patients are able to speak for themselves whenever possible.
POLST FORM: EFFECTIVENESS IN END-OF-LIFE CARE PLANNING
The POLST form originated in Oregon in the 1990s.3 Currently, 44 states have a POLST or related program either implemented or in development.17 The form itself goes by several different names; in New York, for example, the form is called a MOLST (Medical Orders for Life-Sustaining Treatment); in Colorado, a MOST (Medical Orders for Scope of Treatment); and in Idaho, a POST (Physician Orders for Scope of Treatment).17 This article will refer to the form as POLST for clarity.
Evidence shows medical treatment to be consistent with a patient's POLST orders 94% of the time.18,19 In a retrospective study of 400 decedents in Wisconsin, Hammes et al18 found that 84% of patients with a POLST form died at their place of residence. Within this group, researchers found 2 cases of overtreatment relative to POLST orders and no cases of undertreatment.18
Physician Orders for Life-Sustaining Treatment forms facilitate autonomy in end-of-life care planning discussions because they contain specific statements about treatment options and thus give patients the opportunity to make clear and definitive decisions about their wishes.3 Physician Orders for Life-Sustaining Treatment forms are intended for use with patients who have a life-limiting condition and for whom death within a year would not be a surprise.18,20 Evidence indicates that use of POLST forms under these conditions benefits patients by allowing them to consider their treatment goals relative to a specific and immediate health condition.3 Nurses using the POLST form should ensure that they are applying it in this context and that the patient has already been afforded the opportunity to define his/her own goals of care. Many POLST forms do not dedicate space to addressing patients' care goals, and if this is the case, nurses practicing evidence-based care should allow for this discussion before addressing possible end-of-life interventions such as CPR and intubation.
Use of a POLST form as a framework with which to approach end-of-life care planning can help nurses to ensure that an accurate understanding of treatment options is imparted to both patients and family members. Physician Orders for Life-Sustaining Treatment forms are legally recognized as physician orders and generally need to be signed by a provider.3 These documents also require informed consent, so nurses using them should be aware of the laws guarding this process in their state.3
For the purposes of end-of-life advance care planning, nurses do not need to complete the POLST form itself but can instead use it as a platform for honesty and information sharing. Nurses using this tool should also be sensitive to the potential for differences between family members and patients with regard to treatment decisions and care goals. Decisions about medical care should come from the patient whenever possible; this may mean that a nurse will wait until family members have left before initiating this discussion with the patient, especially if there is a known conflict of interest. Although family members are an important part of the patient's care team, the nurse's primary role is to ascertain the wishes of the patient whenever possible and help patients to effectively represent these wishes to family members and the rest of the medical care team.
Physician Orders for Life-Sustaining Treatment forms could actually be used to help clarify terms of disagreement between patients and their family members. An incomplete understanding of what "full code" really means may entice families to push for this declaration when the patient would prefer less invasive care. Sitting down with patients and families and discussing items on the POLST form can help to enlighten families to the implications behind the treatments for which they may be arguing. This approach could also be the impetus for a direct conversation between patients and family members about which treatments are acceptable, with the nurse available to support the patient in expressing his or her wishes.
Physician Orders for Life-Sustaining Treatment forms differ by state, but most include specific questions about CPR, intubation, hospital transfer, and comfort care measures; some POLST forms also address artificial feeding and intravenous fluid hydration.17 Nurses can use the POLST framework to address the realities of each treatment option; for example, the patient will not be able to speak while intubated and may have to be restrained. Discussing medical interventions in this systematic way gives patients the information they need to make informed decisions about the treatments to which they are willing to submit. Patients should be given time to ask questions about each treatment option (intubation, CPR, defibrillation, etc) and engage with the nurse in a more effective kind of cost-benefit analysis; for example, depending on the patient's condition, prognosis, and comorbidities, CPR may or may not be an effective intervention. Understanding the patient's goals of care is invaluable to ascertaining which interventions might be appropriate. For some patients, the goal of paramount importance may be to retain their ability to walk. Treatment and comfort measures should then be guided by this objective.
COMMUNICATION STRATEGIES: HOW TO BEGIN THE END-OF-LIFE DISCUSSION
Evidence-based guidelines for initiating end-of-life care planning discussions can be useful to nurses who are unsure of how to approach this difficult and loaded topic. Discussions should be driven by the philosophy of hope for the best, prepare for the worst.11 Emphasis on nonabandonment is particularly important; for example, that a patient opts for less aggressive treatment at end of life does not mean he/she will not receive treatment or care from involved providers.11 Patients and their families need to know that they can discuss end-of-life wishes without fear that treatment will be abandoned for comfort measures only.
Patients and families also need to know that not all choices must be all-or-nothing. For example, some POLST forms allow patients the ability to specify for how long they will accept a trial of artificial nutrition, should such a thing become necessary. This allows for a customized approach to end-of-life care, so that patients are presented with more options than they may have realized were available to them.
End-of-life care planning discussions necessitate in-person interaction rather than information distributed in written form. Families of patients at end of life reported that written materials, such as pamphlets describing end-of-life care and treatment options, were incomplete and often left them feeling more anxious.16 Families require emotional support and explanations that cannot be found in generic pamphlets; most effective are health care providers who interact directly with patients and families and who focus on maintaining hope and reinforcing the idea that treatment decisions are not final and can be reversed if prognosis or other circumstances change.16
In all end-of-life care planning efforts, the patient's quality of life should be of paramount concern. Curtis11 recommends exploring conditions that a patient would consider "worse than death." In the case of Andrew, discussed at the beginning of this article, being restrained in bed may have been a condition he would have considered worse than death, had someone asked him. This is one of the reasons that honesty is imperative when discussing end-of-life medical interventions-some of the conditions a patient considers to be "worse than death" may be incurred as a result of resuscitation or other efforts to prolong life. Discussing end-of-life interventions works in tandem with Day's10 recommendation that patient goals for care be defined before decisions are made about which treatment efforts are futile and which might be beneficial. Patients cannot make informed decisions about end-of-life treatment options until they have decided on these definitions for themselves.
As important members of the health care team, critical care nurses may find themselves in situations where establishing patient wishes and preparing for end-of-life care decisions fall on them. This is particularly true if we hope to begin these conversations earlier, when nurses might be the first to recognize a need for end-of-life care planning. Awareness of evidence-based communication strategies discussed, as well as end-of-life care planning tools such as the POLST form, should be the responsibility of every nurse who cares for patients at end of life.
IMPLICATIONS FOR PRACTICE AND FUTURE STUDY
Nurses can prepare themselves to engage effectively and comfortably in end-of-life care planning by participating in related education. Browning1 found that ICU nurses who had participated in end-of-life care education programs within a year reported higher levels of empowerment than did their coworkers. Many hospitals offer end-of-life education programs endorsed by the End-of-Life Nursing Education Consortium, a project of the American Association of Colleges of Nursing.21
End-of-life care planning can be supported by incorporation into electronic medical record documentation.4,14 Nurses can advocate for this inclusion and ensure that coworkers are aware of indicators for initiation of end-of-life care conversations (ie, patients who are experiencing frequent hospitalizations, life-limiting illness, and/or for whom death within a year would not be a surprise), as well as the purpose of POLST forms and their significance to end-of-life care planning. Nurses in states where POLST forms are not recognized can advocate for their development and use.
By recognizing a need for end-of-life care planning early, nurses can facilitate a level of autonomy to which their patients might not otherwise have access. By focusing on patient goals and helping them to understand the implications of medical interventions, nurses can support patients in their decisions and represent their wishes accurately and effectively to family members and providers who might be resistant. In so doing, nurses will be supporting a necessary culture shift that will help patients, families, and health care in general to recognize that curing is not always caring.
This conversation can change the lives of ICU patients and the memories they leave behind for loved ones. Had someone begun this conversation early with Andrew, he may have set limits to his treatment before it was too late. He may have been able to go home and spend time with his family rather than remain tied to a bed. Now, instead of tears, John could be left with happy memories of his father's last days. This is the crux of end-of-life planning and the goal of nurses who provide it-leave patients and their families with memories, rather than nightmares.
RESOURCES
To access your state's POLST form and learn about end-of-life care planning resources in your state, visit the National POLST Web site at http://www.polst.org.
References