End-of-Life Care
Marian Grant
Objectives
• Discuss the concepts of patient- and family-centered communication and decision making.
• Discuss professional issues and end-of-life care in critical care units.
Be sure to check out the bonus material, including free self-assessment exercises, on the Evolve web site at http://evolve.elsevier.com/Urden/priorities/.
The aging of the population and increasing acuity of hospital patients has made end of life an important clinical topic in critical care, although requisite improvements in end-of-life care have been slow to follow. Because the primary purpose of admission of patients to a critical care unit is, typically, to provide life-saving care, the death of a patient may be perceived as a failure. The critical care culture emphasizes saving lives, and the language that describes the end of life often employs negative terms, such as forgoing life-sustaining treatments, do not resuscitate (DNR), and withdrawal of life support.
Lately, more attention is being given to the quality of the end-of-life experience of the critically ill, with recognition of the increasing numbers of patients who die in critical care units. This chapter focuses on the evidence available for the care nurses render to dying critical care patients, and their families.
End-of-Life Experience in Critical Care
Attention to the end of life of hospitalized patients began with the publication of the landmark Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT).1 In this major report, more than 9000 seriously ill patients in five medical centers were studied. Despite an intervention to improve communication, shortcomings were found, aggressive treatment was common, and only one half of physicians knew their patients’ preferences to avoid cardiopulmonary resuscitation (CPR).1 More than one third of patients who died spent at least 10 days in a critical care unit, and for 50% of conscious patients, family members reported moderate to severe pain at least one half of the time.1
Following closely after the publication of the SUPPORT study, the Institute of Medicine (IOM) released a report, Approaching Death: Improving Care at the End of Life, which detailed deficiencies in care and gave seven recommendations to improve care:2
2 Health professionals should improve care for the dying.
4 Health profession education should include end-of-life content.
5 Palliative care should be developed, possibly as a medical specialty.
6 Research on end of life should be funded.
7 The public should communicate more about the experience of dying and options available.
In SUPPORT and the IOM report, critical care patients were not distinguished from other hospitalized patients, preventing distinctions between types of units. To describe the number of deaths in critical care units, hospital discharge records from six states and the National Death Index were reviewed.3 Of the more than 500,000 deaths studied, 38.3% were in hospitals, and 22% (59% of all hospital deaths) occurred after admission to the critical care unit. Terminal admissions associated with critical care accounted for 80% of all terminal hospitalization costs.3 The likelihood of dying in the hospital increased with age, with the likelihood of dying after critical care unit admission at 25% of all deaths for each age category. Although 90% of people would prefer to die in their own homes,2 more than 20% of those who died received high-tech, aggressive care in an intensive care unit (ICU) before death.3
Planning for the End of Life
Advance Directives
The Patient Self-Determination Act supports the patient’s right to control future treatment in the event the individual cannot speak for himself or herself. Advance directives, typically comprised of a living will and a health care power of attorney, are intended to ensure that patients receive the care they desire at end of life, but their actual contribution has been less than desired. Like other preventive measures, advance directives are underused, even though they are inexpensive and potentially effective. Most patients have expressed a desire to avoid “general life support” if dying or permanently unconscious, but few have confirmed preferences regarding specific life-sustaining treatments.4
Advance Care Planning
Cultural influences in the United States discourage discussion of death. Planning for decisions to be made at a later date when one is deemed incompetent is difficult, but knowledge about patient preferences helps family members make difficult treatment choices. In this case, the term family means whomever the patient states is the family.
Advance care planning for those with chronic illness is advantageous for all involved.5 When surrogate decision makers know the patient’s wishes for end-of-life care, they can be more congruent and knowledgeable about those wishes in future decision making. If these wishes have not been put in writing by the patient as an advance directive, they may at least have been discussed with the surrogate decision maker. Families and care providers should be informed if patients decline aggressive care, so they will not be left with difficult decisions in emergency situations. Critical care nurses can help facilitate such discussions.
Ethical and Legal Issues in Advance Care Planning
Legal and ethical principles guide many of our decisions in caring for the dying patient and the family. The patient is respected as autonomous and able to make his or her own decisions. When the patient is unable to make decisions, as is often the case in critical care, the same respect should be accorded to the patient’s surrogate decision makers.
Withholding and withdrawing care are considered to be morally and legally equivalent.6 However, because families experience more stress in withdrawing treatments than in withholding them,7 treatments should not be started that the patient would not want, or that offer no benefit.
The goal of withdrawal of life-sustaining treatments is to remove treatments that are not beneficial and may be uncomfortable. Any treatment in this circumstance may be withheld or withdrawn. Treatments that cause discomfort should not be continued. When disagreements arise, ethics consultations can help to resolve conflicts regarding inappropriately prolonged, nonbeneficial, or unwanted treatments.8
Forgoing life-sustaining treatments is not the same as active euthanasia or assisted suicide. Allowing a person to die by withholding or withdrawing life-sustaining treatment fosters a more natural death after an incurable illness or trauma.9
Critical Care Issues in Advance Planning
Cardiopulmonary Resuscitation
CPR is a key issue when discussing advance care planning with patients and families. The benefits of resuscitation may be overestimated for survival and for the more relevant outcome of returning to baseline functional status. In a meta-analysis of 51 studies, the rate of overall survival to discharge after in-hospital CPR was 13.4%.10 Poorer outcomes occurred among those patients with sepsis the day before resuscitation, metastatic cancer, dementia, coronary artery disease, and for those resuscitated in the ICU. A Norwegian study reported that only 17% of patients older than 75 years survived resuscitation to return home.11
As important as survival is the functional status outcome following resuscitation.12 Functional status among almost half of the survivors of in-hospital CPR had deteriorated compared with their condition 2 months before the event.12 Six months after resuscitation, 30% of those patients had died, and two thirds continued to lose function.12 Despite these dismal statistics, CPR is often offered as an option without fully informing patients or families of the low possibility of surviving CPR, or the potential for decline in functional status.
One evolving aspect of CPR is the presence of family members in the room during resuscitation. The American Association of Critical-Care Nurses (AACN)13 and the Emergency Nurses Association (ENA)14 have issued position statements recommending that families be present during CPR and invasive procedures. Family presence is a significant source of support for the patient, and may benefit the family. Observing the resuscitation can aid in the grieving process, especially when resuscitation is not successful. The family will know that everything was done that could have been done.
Misunderstandings Around Do-Not-Resuscitate Orders
Even as a patient’s condition deteriorates, there is often reluctance to consider a DNR order.15 A DNR order is intended to prevent the initiation of life-sustaining measures such as endotracheal intubation or CPR. However, some providers equate DNR with “do not treat.” Sadly, this means that patients with a DNR order sometimes receive less care16 and some treatments are withheld.17 Families should be assured that patients will continue to receive nursing and medical care, including pain and symptom management, but that aggressive measures to extend life will not be employed. DNR orders should be written before withdrawal of life support is initiated; this documentation ensures that the patient is not subjected to unwanted interventions during the period between initiation of withdrawal and death.
Prognostication and Uncertainty
It is often challenging to identify which patients will survive an ICU stay and which will not. This is because prognostication on an individual basis can be very difficult. Evidence shows that physicians’ ability to prognosticate the length of time before death is limited18,19 and that the time to death usually is overestimated. Patients’ treatment wishes usually are not known, may be vague,20 or change over the course of an illness.21 Because of uncertainty, and because a few patients who were thought not likely to survive actually return to visit a critical care unit, professionals are often not confident about issues of survivability. This, combined with the fact that many families cling to small hopes of survival and recovery, results in generally overly optimistic prognoses.
Decision Making and Communication
Patients and families prefer to share decision making with health professionals in cases of life and death. However, shared decision making about end-of-life treatment choices in physician-family conferences are often incomplete.22 Higher levels of shared decision making are associated with greater family satisfaction. Families go through a process in their decision making in which they consider the personal domain (rallying support and evaluating quality of life), the ICU environment domain (chasing the doctors and relating to the health care team), and the decision domain (arriving at a new belief and making and communicating the decision).23 Improving ICU communication when patients are dying reduces lengths of stay and resource use.24 This is because improved communication identifies those patients for whom critical care is either not desired, given patient or family goals of care, or medically inappropriate given the patient’s prognosis.
Critical Care Recommendations to Improve Family Interactions
A consensus statement from the Society of Critical Care Medicine (SCCM) recommends focusing on and supporting the families of ICU patients.25 Forty-three recommendations are presented, including an endorsement of a shared decision-making model; family care conferencing; culturally appropriate requests for truth-telling and informed refusal; spiritual support; staff education and debriefing; family presence at rounds and resuscitation; open and flexible visitation; family-friendly signage; and family support before, during, and after a death. One use of this guideline is to assess the level of family support for each ICU so that the most deficient areas could be addressed with quality-improvement actions. The categories used in this guideline are for general support of ICU families, as seen in the Evidence-Based Collaborative Practice: End-of-Life Care box. The needs of a family with a dying patient include decision-making support; spiritual and cultural support; emotional and practical support, including visitation and family preparation for death; and continuity of care.26
Cultural and Religious Influences
Cultural and religious influences on attitudes and beliefs about death and dying differ dramatically. A cultural and religious assessment is warranted in all situations, because cultural or religious affiliation does not imply that patients or families follow all of the tenets of that group. The cultures of the predominant religions commonly seen in the surrounding community should be familiar to the local health care team. These differences may affect how the health care team is viewed, how decisions are made, whether aggressive treatment is preferred, how death is met, and how grieving will occur.27 Satisfaction with ICU care has been associated with the extent to which the family is satisfied with their spiritual care, especially when the patient is near death.28 Use of hospital chaplains or other spiritual resources is highly encouraged. Staff members’ own attitudes about the specific practices of a culture should be carefully assessed29 and tempered with respect and humility. Interpreters are necessary when the patient or the family members do not speak English. In order to ensure accurate translation of any important information, family members should not be used as interpreters.
Discussing Prognosis
Discussions about the potential for impending death are never held early enough. Often, the first discussions with the patient or family occur in conjunction with the topic of discontinuation of life support. This is frequently some time after the health care team has concluded the prognosis is poor and there is a need to stop life support. That gap in time is often why the family lags the team in understanding and accepting what is happening medically. The late timing of the first discussion is also an issue for those families who may come to terms with withdrawal before physicians.30 It is important to give families time to adjust to this information, and make preparations by early and regular discussions about prognosis, goals of therapy, and the patient’s wishes.31
Conflict and Staff Distress
Nurses and doctors frequently disagree about the futility of interventions. Sometimes, nurses consider withdrawal before physicians and patients do, and they then feel the care they are giving is unnecessary and possibly harmful. Nurses in one study were found to be more pessimistic, yet more often correct than physicians about the prognoses of dying patients. However, the nurses also proposed treatment withdrawal for some very sick patients who survived.32 This issue is a serious one for critical care nurses, because concerns over providing futile care can led to emotional and ethical distress and, ultimately, to burnout.33
Comfort Care and Symptom Management
Many patients die an undignified death with uncontrolled symptoms. This is particularly likely in critical care, where the shift from the traditional intensive rescue approach to one of comfort care of the dying is difficult and dramatic.34
Steps Toward Comfort Care
Comfort care is a broad term with different meanings depending on the patient and the ICU. Typically, it refers to removing any treatments that are no longer providing a medical benefit and/or may be causing discomfort to the patient. It is important to educate families as to the physiological reasons for discontinuing treatments, so that they understand that the benefits of such treatments are usually outweighed by the discomfort they can cause dying patients. In addition, comfort care recognizes that certain symptoms, like pain or agitation, which were perhaps lower priorities while seeking aggressive curative treatment, may now instead be the most important issues to be addressed.
Withdrawal of specific treatments can also have effects necessitating symptom management. If a series of interventions is to be withdrawn, there tends to be a typical sequence of withdrawal. First, dialysis usually is discontinued along with diagnostic tests and vasopressors. This can cause fluid issues and dyspnea and may necessitate the use of opioids or diuretics. Next, intravenous fluids, monitoring, laboratory tests, and antibiotics are typically stopped.34 This results in a more natural death, but with accompanying symptoms from dehydration or infection that must be managed. Efforts to discontinue artificial feeding may be met with concern from the family, because offering food has great social significance. However, fluids or food are usually physically burdensome to the dying patient and should only be continued if the patient wants or can tolerate them.
Palliative Care
Patients in the last stages of their illness require aggressive symptom management. The most relevant clinical goal is to manage or palliate
