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 these unpleasant situations by assessing and implementing appropriate interventions.9 Palliative care guidelines may provide guidance when the usual first-line treatments do not promote comfort for critically ill patients.35 Palliative care is a medical and nursing specialty that focuses on quality of life for patients and families dealing with serious illness. More and more hospitals have palliative care consultant teams to help provide such care. Unfortunately, palliative care has been thought of as desirable only when the patient nears death or when several interventions have been unsuccessful for symptom management. However, palliative care guidelines35 and the IOM report Improving Palliative Care for Cancer36 confirm that palliative care ideally begins at the time of diagnosis of a life-threatening illness and continues through cure or until death and into the family’s bereavement period.
Hospice
Hospice is the form of palliative care that focuses on patients with a prognosis of six or fewer months. It is a Medicare-provided service that usually requires patients to forgo life-prolonging treatment. Patients and families often consider this method of care only in the last days or weeks of end-stage illness and may view hospice care as “giving up.” Health professionals can assist patients and families by providing information about the hospice benefit and stressing the support it provides. The focus on quality of life can be helpful to patients and families. Palliative care teams often provide “hospice” care in the hospital, which can include symptom management, and social, spiritual, and bereavement support for families.
Pain Management
Because many critical care patients are not conscious, assessment of pain and other symptoms is difficult. Nonverbal pain assessment scales37 that use facial expressions, body movements, and ventilator dyssynchrony are described in Chapter 8. The World Health Organization advocates a three-step approach to pain management starting with nonopioid medications for mild pain and moving up to opioids for severe pain. In critical care units, opioids are frequently used because of the pain intensity.38
Opioids can cause respiratory depression and hypotension, but usually not when they are titrated carefully. They are particularly beneficial for the ventilated patient because in addition to helping treat dyspnea, they provide sedation, anxiolysis, and analgesia. Morphine is often the drug of choice, although hydromorphone and fentanyl are also used, and there is no upper limit in dosing.9 The SCCM guideline39 for the sustained use of sedatives and analgesia in critical care is an additional resource described in Chapter 9.
Non-Pain Symptom Management
The following symptoms often occur in the dying patient:9 dyspnea, nausea and vomiting, fever and infection, edema and pulmonary edema, anxiety, delirium, metabolic derangements, skin integrity, anemia, and hemorrhage.9
Dyspnea
Patients who are near death are frequently unable to self-report dyspnea.40 Dyspnea is best managed with close evaluation of the patient and the use of opioids, diuretics, sedatives, and nonpharmacological interventions (oxygen, positioning, and increased ambient air flow). Opioids can reduce muscle tension and increase pulmonary vasodilatation. Benzodiazepines may be used in patients for whom anxiety is a key contributor to respiratory discomfort. Benzodiazepines and opioids should be titrated to effect. Treatment efforts are aimed at the patient’s expression of dyspnea rather than at respiratory rates or oxygen levels.41
Nausea and Vomiting
Nausea and vomiting are common and are treated with antiemetics. The cause of nausea and vomiting may be intestinal obstruction. However, treatment for decompression such as nasogastric tubes may be uncomfortable in dying patients, and their use should be weighed using a benefit-to-burden perspective.
Fever and Infection
Fever and infection necessitate assessment of the benefits of continuing antibiotics so as not to prolong the dying process.9 Management of the fever with antipyretics may be appropriate for the patient’s comfort, but other methods such as cooling baths, ice, or hypothermia blankets should be balanced against the amount of discomfort the patient may experience.
Edema
Edema can cause discomfort, and diuretics may be effective if kidney function is intact. Dialysis is not warranted at the end of life. The use of fluids may contribute to edema when kidney function is impaired and bodily functions are slowing. In a Database of Abstracts of Reviews of Effects (DARE) report,42 little relationship was found between thirst and fluid therapy or fluid status. Instead, excellent oral care is the best way to address the discomfort of dry mouth.
Anxiety
Anxiety should be assessed verbally, if possible, or by changes in vital signs or restlessness. Benzodiazepines, especially midazolam with its rapid onset and short half-life, are frequently used. Existential distress can cause anxiety at the end of life, so spiritual or social work resources may also be helpful if the patient verbalizes anxiety.
Delirium
Delirium is commonly observed in the critically ill and in those approaching death. Haloperidol is recommended and restraints should be avoided.
Metabolic Derangement
Treatments for metabolic derangements are tempered with concerns for the patient’s comfort. Only interventions promoting comfort are performed. Patients do not necessarily feel better “when the laboratory values are right.”
Skin Integrity
While always a consideration in a critical care nursing, wounds and other skin issues can be a source of patient discomfort at the end of life. However, aggressive turning regimens and wound care may be counter-productive if the patient has only days or hours to live. Unit protocols may need to be adjusted in favor of comfort for such situations. Families may also want to assist with some aspects of skin care and should be given appropriate tasks, such as applying lotion, if they request.
Anemia
This can be a common problem at the end of life with cancer and other debilitating illnesses. Anemia is treated only when a transfusion could increase the patient’s quality of life, such as providing the energy to participate with family. Routine blood draws to determine blood counts should be stopped since values will likely be abnormal.
Hemorrhage
This can occur with illnesses such as liver failure, and families should be educated about the risks. Again, if the goals of care are comfort, and to allow a natural death, then transfusions to address bleeding are likely not appropriate. As part of enrolling family in the treatment plan, transfusions should be discussed and agreement reached in advance.
Providing Comfort
The nursing interventions at end of life focus on the provision of comfort care as an active, desirable, and important service. Unnecessary verification of vital signs, laboratory work, and any treatment that does not promote comfort is avoided. Positioning the patient who is actively dying has as its purpose only comfort, not the schedule to promote skin integrity. Coordinating this care with the many members of the critical care team is important to ensure consistency across disciplines. When symptom management is not successful in ensuring comfort, the services of the pain team or the palliative care service may be required.
Near-Death Awareness
Two hospice nurses have described the phenomenon of patient behaviors and near-death awareness.43 The same behaviors may be seen in critical care patients near death. Having an awareness of the phenomenon enables more careful assessment of behaviors that may be interpreted as delirium, acid-base imbalance, or other metabolic derangements. Patient behaviors include communicating with someone who is not alive, preparing for travel, describing a place they can see, or even knowing when death will occur.44 Family members may find these behaviors disturbing but find comfort in understanding the phenomenon and in sharing these experiences with their loved one.
Withdrawing Life Support
Family Meetings
Although family meetings should ideally be held within 72 hours of any ICU admission,45 they are frequently only held to formulate a decision to withdraw life support. One clinical practice study showed that earlier meetings led to shorter medical ICU stays, and earlier access to palliative care for patients who eventually died.46
Preparing to Withdraw Life Support
Typically a time to initiate withdrawal is established with the family and health care team. This allows the family to prepare and for all necessary resources to be present. For example, a distant family member may need to arrive, and then the procedure will occur. It is helpful if other staff members are alerted to the fact that a withdrawal is occurring. A neutral sign hung on the door or use of a special room may caution staff to avoid loud conversations and laughter, which can be upsetting to grieving families.
After the decision to remove life support is made and the family is gathered, the family should be told what the impending death may be like. When the patient is totally dependent on ventilatory support or vasopressors and that support is removed, death typically follows in minutes. The patient appears as if asleep, and the usual signs of color and skin temperature changes will not be seen before death. The opposite is true if the patient is not ventilator dependent. Providing information to families for the experience of withdrawal alerts them to what the patient may exhibit as death approaches, reducing the distress families feel during the withdrawal process.47
Implantable cardioverter-defibrillators should be turned off to prevent patient distress from their firing and to avoid interfering with the pronouncement of death. Neuromuscular blocking agents should be discontinued, because paralysis precludes both assessment of the patient’s discomfort and the means to communicate with loved ones. Time for clearance of the medication should be carefully considered in planning the withdrawal process.34
The removal of monitors is usually recommended but families should be given this choice.48 Physicians and nurses may use the monitor to assess the distress of the patient during the withdrawal process and to adjust the amount of medication needed for symptom management. Families may glance at the monitor to verify that electrical activity has ceased, because the appearance of death may be too subtle to detect. One option is to turn the monitor off in the patient’s room but leave the leads on so that vital signs can be monitored from the nurses’ station.
Opioids and Sedatives
Opioids and benzodiazepines are the most commonly administered pre-withdrawal medications because dyspnea and anxiety are the usual symptoms related to ventilator withdrawal.49 A bolus dose of morphine (2 to 10 mg IV) and a continuous morphine infusion at 50% of the bolus dose per hour is recommended as a starting point.50 A midazolam bolus (1 to 2 mg IV) followed by an infusion at 1 mg/hr is also recommended.50 The intent is to provide good symptom control with a respiratory rate below 30 breaths per minute without grimacing or agitation;50 dosages accelerate until the patient’s comfort is achieved. In one study, the use of opiates or benzodiazepines to treat discomfort after withdrawal of life support did not hasten death in critically ill patients.51
Ventilator Withdrawal
There are two methods for discontinuing ventilator support: extubation and terminal weaning. Both involve premedicating the patient to provide comfort. In the first, extubation, the endotracheal tube is withdrawn at the beginning of the process and the patient is on room air, a nasal cannula, or a T-piece. When this method is used, the family should be prepared for respiratory noises and deeper, faster respirations. Some providers do a trial of reduced ventilatory support before extubation to ensure the patient has been appropriately medicated and will be comfortable. One benefit of extubation is that withdrawing the endotracheal tube can remove the discomfort some patients’ experiences. Extubation also leaves the patient with a more natural appearance.
In the other option, terminal weaning, the endotracheal tube is removed at the end of the withdrawal process. In this case, the patient’s comfort is also monitored and, once achieved, ventilator settings are reduced. Positive end-expiratory pressure (PEEP) is reduced to normal, and then the mode is set to patient control. Next, the FIO2 is reduced to 0.21 (21%). All of these steps are taken slowly while observing the patient for distress or anxiety. An experienced physician, a respiratory therapist, and a nurse should be present during this time. Ventilator alarms are turned off. The terminal wean offers the most control over secretions, respiratory noises, and gasping. Patients who survive for some time after ventilator withdrawal should ideally be transferred to a private room so family can visit as much as possible in the remaining hours to days.
Professional Issues Regarding End of Life in the Icu
Health Care Providers
Some interventions have been found helpful for health professionals in improving patient care at the end of life. A standardized order form for withdrawal was found to increase the amount of medications nurses administered for sedation, although it did not improve nurses’ assessment of patients’ dying experience.52 Death rounds for ICU residents where cases were discussed post-mortem were well received and recommended to be included in future rotations.53
Emotional Support for the Nurse
Nurses who care for the dying patient need to have their expertise valued as highly as other high-technology interventions in critical care. Critical care units usually have several nurses who are looked to by other staff to provide end-of-life care, or to assist with withdrawal of life support. When several deaths occur close together, those nurses may be called on frequently. Some consideration in assignment should be given when a nurse has more than one death in a shift or a week. Taking a new admission is also difficult immediately after a death, and it can occur before the family has left the unit. Nurse administrators can provide some additional resources, debriefing, or time off when the burden has been high. Hearing supportive words from colleagues has been reported by critical care nurses as helpful in coping with the death of a patient.54
Nurses experience moral distress when aggressive care is offered to patients who are not expected to benefit from it. These levels of distress are high and have implications for retention of highly skilled nurses.55 Nurses had a number of suggestions when questioned about what could be done to improve end-of-life care, such as facilitating dying with dignity, having someone with patients who are dying, managing patients’ symptoms, knowing and then following patients’ wishes for end-of-life care, and promoting earlier cessation of treatment or not initiating aggressive treatment at all.56
Organ Donation
The Social Security Act Section 1138 requires that hospitals have written protocols for the identification of potential organ donors.57 The Joint Commission also has a standard on organ donation.58 Although an impending death marks a difficult time for family members, the nurse notifies the organ procurement official to approach the family with a donation request. These individuals have training to make a supportive request. If the patient’s disease precludes donation, the family is not approached.
Death may be pronounced when the patient meets a list of neurological criteria. However, there are differences among hospital policies for certification of brain death, which can result in varying circumstances under which patients can be pronounced dead.59 Families may not understand the meaning of brain death, and they are less likely to donate organs when they believe the patient will not be dead until the ventilator is turned off and the heart stops.60 How these conversations are held will determine families’ understanding and positively affect donation. Clinicians should not suggest that the organs are alive while the brain is dead, but rather that the organs are functioning as a result of the machines used.9
Family Care
Families look for the good news in any message received from health professionals and are often surprised when told that death is the only outcome possible.54 Families need assistance in forming their expectations about outcomes. Ongoing communication about the patient’s progress is preferable to waiting until the patient is near death and then communicating with the family.
One intervention used with families at the end of life is a grieving cart. In one ICU,61 the cart has a top drawer with English and Spanish versions of the Bible, Koran, and Book of Mormon, and pamphlets about grief and bereavement. The lower portion of the cart holds paper cups, napkins, and condiments. Fresh coffee and tea are brewed on the unit and served with muffins and cookies from the cafeteria. Family responses have been positive because they are reluctant to leave the bedside at such a time.
Delivering Bad News
Patients and families do not come to the critical care unit with the expectation of death. Even those who have had previous admissions expect to be “saved.” They tend to listen to imparted information looking for good news; even when bad news is given, they may initially deny it or have great difficulty taking it in.62 Having this in mind while talking to families may assist professionals in interpreting families’ responses.
Preparing families for changes in the patient as the health condition deteriorates helps them to make plans. They need to know if other family members should be called, if someone should spend the night, or if financial arrangements should be changed before an impending death (e.g., to enable a surviving spouse to have access to funds). Anticipated physical changes can be described to help prepare families.
Families may refuse to forgo life-supporting treatments and want “everything done” because of mistrust of health professionals, poor communication, survivor guilt, or religious or cultural reasons.30 Effective communication throughout the hospitalization and information provided throughout the stay predispose the family to better acceptance of news as the patient deteriorates. Family satisfaction is increased when they feel supported during their decision making and hear more empathic statements from physicians.63
Family Responses to Bad News
Families may experience a sense of crisis as emergencies occur or as the patient deteriorates and dies. Responses to the news of the death vary. Family members may show anger or be quiet, exhibit emotions or stoicism. Culture or religious beliefs may affect their response to news. It is helpful to ask if they would like to see a chaplain or a social worker. Quiet, calm, some privacy, and support are always appreciated.
Multidisciplinary family meetings in the ICU consistently have been shown to help families and health care providers arrive at a common understanding of the patient’s prognosis and goals for future care. An analysis of the amount of opportunity families had to speak in these meetings revealed that when families had greater opportunity to talk, their satisfaction with physician communication increased and their ratings of conflict with the physician decreased. After the patient’s death, greater family satisfaction with withdrawal of life support was associated with the following measures:64
• The process of withdrawal of life support being well explained
• Withdrawal of life support proceeding as expected
• Patient appearing comfortable
• Family and friends being prepared
• Appropriate person initiating discussion
These meetings provide the opportunity to listen to family; to acknowledge and address emotions; and to pursue key tenets of palliative care, such as patient preferences, surrogate decision making, and nonabandonment.65
Policies Regarding Family Presence during Cardiopulmonary Resuscitation
Critical care nurses and emergency nurses have taken family members to the bedside for resuscitation or invasive procedures, but most hospitals do not have written policies for the family’s presence.66 Development and implementation of such policies benefit both staff and families.13 Witnessing the steps of resuscitation may help family accept the patient’s death.
Visiting Hours
Visiting in the ICU continues to be restricted,67 despite national calls for increases in patient or family control over the care. Restricting visiting for dying ICU patients is unconscionable. Providing the visiting time to help family members say good-bye is an important function. Family members may have difficulty in seeing the person they knew among all the tubes. Coaching can be provided about how to approach the patient and about how the patient may still be able to hear despite appearing to be nonresponsive. Children, unless they represent a significant source of infection, should be allowed to say good-bye, but they may need adult assistance in understanding the situation. Families may have religious or cultural ceremonies that are important for them to perform before the patient dies or experiences withdrawal of life support. These practices are to be encouraged and facilitated as much as possible.
Continuity of Nursing Care
Continuity of care by the same nurse is important as patients near death. When possible, and agreeable to staff and families, the same nurse can be assigned over consecutive shifts to maintain continuity. Nurses have sometimes stayed with the family after the end of a shift when death was imminent so the family would not need to adjust to another person at this difficult time.54
After Death
After the death, the family may wish to spend time at the bedside. They need adequate room to sit and their time with the body should be unhurried and private. They can be asked if they need assistance or resources or whether they wish to be alone or have someone nearby. Nurses need to be aware of their own judgment on what is an appropriate response, because individuals respond differently to the same news, even within the same family. Frequently, the bed is needed for another patient, and juggling is required to ensure that the family has sufficient time even as another patient needs to be admitted. This is another reason to try to transfer patients earlier out of the unit to a private room elsewhere in the hospital. Supporting families after a death involves immediate bereavement support, information on what to do about the death, bereavement support for the future, contact with the family after death, and assessment of the quality of care the patient experienced.68 Having material already prepared with the necessary after-death information is quite helpful at this time.
Collaborative Care
The ability to provide collaborative, compassionate end-of-life care is the responsibility of all clinicians who work with the critically ill. Interdisciplinary collaborative efforts are associated with improvement in care. In 2008 the SCCM published a revised guideline, “Recommendations for End-of-Life Care in the Intensive Care Unit,” to provide guidance for end-of-life care for the team.69 The Evidence-Based Practice box on End-of-Life Care provides a summary of the topics included. The Robert Wood Johnson Foundation (RWJF) Critical Care End-of-Life Peer Workgroup70 identified seven end-of-life care domains for use in the ICU:
1 Patient- and family-centered decision making
4 Emotional and practical support
Individuals71 and groups72 have developed websites for online tools to improve end-of-life care. The same attention should be placed on improving end-of-life care that is placed on skills of electrocardiogram interpretation or hemodynamic monitoring.
