The first step hospitalists can take toward ensuring a minimally traumatic and potentially meaningful death is to recognize the opportunity for maximizing comfort measures as soon as possible. In many cases, physicians recognize the inexorable process of impending death based on a physiologic or clinical process, such as severe brain injury, malignant arrhythmias, or withdrawal of ventilator support in a patient with decompensated respiratory failure. It is this ability to prognosticate and anticipate the most appropriate focus of clinical care that creates a unique opportunity to guide and support families whose desperation expands as their options dwindle (see Chapter 11: Estimating Prognosis).

The setting of withheld or withdrawn life-sustaining measures is a special context with unique professional challenges (see Chapter 14: Withdrawing Life-Sustaining Measures). First, hospitalists may feel that their clinical services are of little value, as is suggested by the unfortunate tropes “withdrawal of care” and “there’s nothing we can do” and the sad reality that death is imminent. Withdrawal of life support, however, does not entail the retreat of the physician. To the contrary, there are many important clinical skills that a hospitalist can bring to bear in a patient’s last days, the first of which is vigilance for those moments when a family needs a physician to offer a clear and firm commitment to employing every means necessary to ensure patient comfort and promote healthy grieving.

Vigilance entails a further responsibility to remain sensitive to the emotional lives of families. Families who have either requested or consented to withdrawal of life support and allowing natural death are likely to experience dizzying emotions that are tied to the complex process of medical decision-making. For many cancer patients who are dying in the MICU, a veritable army of patients, families, oncologists, and other clinicians have prayed and fought for a cure until that penultimate moment when a downcast clinician breaks the news that death is near. Feelings of shock, guilt, anger, and angst—as well as family tensions—can rise quickly and dominate the conversation. Intense emotions may be kept in check in order to render a decision that life support should be withheld or withdrawn, and a quick transition to “comfort measures only” may proceed. But the hospitalist who then hopes to deliver on that promise of comfort must be sensitive to the intense feelings arising prior to or during the decision-making process that linger and require competent and compassionate engagement. Emotional support is an iterative process.

When a decision is made to forgo life support, families in some way start to believe or accept that the end is near. Alternatively, the context in which no decision to limit care is made, when life-sustaining measures are pursued until the moment of death, is in some ways emotionally simpler. While feelings of guilt are a natural part of grieving, trying “everything” can be a natural antidote for feelings of accountability for death in the hospital. Decision-making among patients, families, and physicians can be heavily influenced by possible feelings of regret, inadequacy, or powerlessness. Thus, whether or not life support is deliberately withheld or withdrawn near the end of life, the hospitalist should liberally and concisely remind family members that disease and trauma are the underlying causes of death, that heroic measures and life support are always trials limited by the risk of harm and suffering, and that sometimes respect for autonomy and patient preferences means letting go before we feel ready.

Hospitalists are well aware that just because death is imminent doesn’t mean that all family members, or even other clinicians, recognize this. In this case, the best possible care of the patient, or the maximization of comfort, may have to be implemented stepwise in order to patiently accommodate the beliefs and preferences of the family. For example, in a debilitated elderly patient with metastatic cancer, a time-limited trial of hemodialysis can be offered with an agreed-upon understanding that if hypotension, delirium, or signs of severe pain or anxiety persist, then symptoms will be managed promptly and hemodialysis will be either discontinued or reconsidered during an interdisciplinary family meeting in the days ahead.

A helpful strategy for communicating in this context is to offer the family a clear description of what the road to recovery looks like and what bad news looks like. Be specific. Provide the family with baseline lab values, vital signs, or treatment goals, and then describe the milestones needed, say for the next family meeting, to suggest whether or not the patient is on the road to recovery. This will set the stage for a possible transition to an exclusive focus on comfort measures.

In addition to emotional vigilance and sensitivity, how else can hospitalists effectively attend to the needs of families who have, moments or days prior, let go of the hope for rescue and recovery and who now face a dying process they long feared? Three strategies can be brought to bear, manifested in the phases of doctor–family communication at the end of life. First, as decisions are made and the specter of death is acknowledged, hospitalists should focus on an ongoing commitment to provide timely and empathic communication, addressing common concerns while drawing on key phrases and resources for healthy grieving. Second, as comfort measures are implemented, core strategies include signposting and delivery of expert symptom management and supportive care. The third strategy entails respectful follow-through, including competent pronouncement of death, provision of postmortem care, and initiating a plan for bereavement.

16.2 LAST DAYS: EMPATHIC COMMUNICATION AND INTERDISCIPLINARY CARE

Empathic communication during a decision-making process or a time-limited trial of medical therapy is easier and more effective when involved clinicians give clear and consistent information and when an interdisciplinary team is involved.

The hospitalist is most effective in his or her role when an interdisciplinary team is available to help families at every step during decision-making and grieving processes. If a case involves difficult prognostication, complex family dynamics, or transfer across clinical units, then interdisciplinary members of a specialized Palliative Medicine Team, if available, can provide both expert guidance and continuity of care. The earlier these team members can assess and establish rapport with patients and families, the better. Other advantages of services provided by a team of Palliative Medicine specialists include the dynamics of efficiency and of interprofessional support that come with a team that routinely collaborates on clinical care.

Some hospitalists personally find empathic communication at the end of life to be a daunting task. There may be no substitute for experience, practice, and exposure to exemplary role models, but having supportive phrases, recommendations, and resources handy can help any clinician communicate with proficiency (see Chapter 7: General Principles and Core Skills in Communication).

16.3 LAST DAYS: SIGNPOSTING AND SYMPTOM MANAGEMENT

One of the most effective ways to help a family prepare for death is to provide signposts for the journey ahead. Signposting should begin with a tactful invitation such as, “Would you like me to share some signs and symptoms that you can expect to see?” Some family members may not be emotionally ready to hear details, and for them an informational handout or brochure can be offered for reading at their own pace. Several valuable resources exist including “Hard Choices for Loving People” which is available in both English and Spanish.

For family members who accept the invitation to talk, a simple explanation of the normal signs of dying can be reassuring. A discussion of signs of possible suffering can also be fruitful because some family members will find it empowering and meaningful to participate in the plan of care. One way to approach this subject is to advise family members that since they know the patient better than the clinical staff, and since they are likely better at interpreting the patient’s facial expressions, body language, and verbal cues, their role in assessing patient comfort is vital. To that end, hospitalists should bring the patient’s nurse and family together to identify signs or symptoms that should be reported to the nurse, physician, or other clinicians for further assessment. Of course in this context the family should be counseled on their options for participating in bedside care, including oral care, verbal reassurance, massage, and ensuring a peaceful environment among family visitors.

When the invitation to signpost is accepted, hospitalists can describe the signs of dying both as a general account of how the body shuts down and as a specific account of how particular disease trajectories will likely unfold. One way to describe the final hours and days of life is to explain how the human body can be expected to undergo a series of changes that reflect a decline in cellular metabolic activity and energy among various interrelated organ systems. Another is to emphasize that dying is both a part of life and, like other transitions such as birth and marriage, an opportunity to engage in rituals that demonstrate respect, honor, and a value for life and love in their many forms. Relatedly, it is important to inquire about families’ spiritual beliefs so that the hospitalist’s framing of the dying process can accommodate expectations such as the release of the patient’s spirit or soul.

Perhaps the most familiar signs of dying are those that relate to the neurologic symptoms of fatigue, somnolence, and decreased alertness. These signs may be caused directly by neurologic injury in the case of stroke or traumatic brain injury or indirectly in case of cerebral hyper/hyponatremia or hypoperfusion associated with sepsis, heart failure, or dehydration. Other organ involvement will accelerate neurologic dysfunction: uremia due to renal failure, hyperbilirubinemia due to hepatic malignancy, or hypoxemia/hypercarbia due to respiratory failure. In each case, neurocellular demand for energy outstrips the available supply resulting in impairment of cortical function and central activation or awareness. In counseling families on the signs of neurologic decline, hospitalists should emphasize that the descent into unresponsiveness is a natural and expected consequence of the body and organs shutting down.

One of the most common questions among families with regard to decreased responsiveness is: “Can she hear me?” It is important to recognize that this question often reflects a personal hope to connect or say goodbye. The answer to this question, therefore, can provide a unique opportunity to promote healing and closure. The hospitalist may reply with something like: “I am not sure if she can hear us. In fact, I could not explain it based on my understanding of her brain injury, but I always assume that my patients can hear me. And I also know that your voice is more recognizable than mine, so I recommend that you speak to her, say the things that are important like ‘I love you’ and ‘I know you love me’, and, when other family members are in the room, just chat with one another—share memories or stories—so that your voices can offer familiarity and comfort.”

Another common question related to the patient’s level of alertness in the last hours of life is: “Should I stay at the bedside?” If death is imminent, it may be prudent to encourage bedside vigilance if the family wishes to be present at the moment of death. A private room with no limits on visitor hours and with a sleeper sofa or futon can be extremely useful in this regard.

On the other hand, sometimes the timing of the dying process is difficult to predict, and family members experience stress and fatigue related to hypervigilance. In this case, the hospitalist may recommend that family members take shifts so they can sleep and take care of their own mental and physical health. And it may be helpful to advise family members in advance that sometimes patients will only take their last breaths when family is not there to witness, as if doing so is a purposeful, protective act. This observation may serve as a narrative construct that relieves guilt.

One of the other most familiar signs of dying relates to changes in breathing patterns and sounds. As the body shuts down, fluid shifts may result in pulmonary edema, organ dysfunction or hypoperfusion may cause metabolic acidosis, and increased intracerebral pressure or brainstem injury may impair the respiratory centers of the brain. In each of these cases, breathing patterns at the end of life are likely to include periods of rapid shallow breathing as well as apnea spells. Families should be advised that changes in respiration are normal signs of dying and not necessarily a sign of pain or suffocation, whether rapid breathing or apnea follows a crescendo–decrescendo pattern (Cheyne–Stokes respirations) or else a clustered–intermittent pattern (Biot’s respirations).

One of the challenges of maximizing patient comfort in the final hours of life relates to the patient’s inability to communicate pain while at the same time possibly demonstrating a rapid breathing pattern that, in other circumstances, might indicate pain or distress. For this reason, it is standard of care to provide either a low-dose infusion or hourly, as-needed doses of opioids. An effective and ethically sound strategy for administering opioids in the tachypneic and unresponsive dying patient is to titrate opioids to a respiratory rate range. For example, to ensure that pain is controlled while avoiding the unnecessary risk of hastening death, a hospitalist could place a nursing order to administer low-dose, concentrated, sublingual morphine for a respiratory rate greater than 30 and to withhold opioids for a respiratory rate less than 8. Development of a comfort care order set for nurses and physicians that includes pharmacologic options for symptom management and protocols for tailoring bedside care to a patient’s needs at the end of life—including a focus on oral hygiene and limitations on vital signs and bloodwork—is a powerful strategy for standardizing and improving care in the last days of life. A link to a sample comfort care order set is provided in the web resources section of this chapter.

For many patients, a declining respiratory rate such as four breaths per minute is a telltale sign that death is likely to occur with minutes, not hours. Similarly, when pulmonary excursion or air movement is limited and respirations consist of “mandibular” or “guppy” breathing, death is almost certainly at hand.

Another respiratory sign of impending death is commonly known as the “death rattle.” This audible, gurgling sound usually indicates that secretions have accumulated in the retropharynx or trachea where air movement creates a resonating sound. This sound is more disturbing to families than it is to the moribund patient. Warning in advance will mitigate this potentially unnerving experience, as will routine oral care, which can be intimately provided by inclined family members. Management can be aided—perhaps modestly—by discontinuing unnecessary fluids, whether enteral or parental, as soon as possible in the course of identifying comfort as the primary goal of care and by employing pharmacologic agents such as ophthalmic atropine given sublingually or parenteral glycopyrrolate.

Other common signs of impending death that hospitalists can include in signposting are those that arise from hemodynamic changes associated with hypovolemia or multiorgan dysfunction. Anuria usually occurs within the final days of life. Myclonus may follow from acidosis or electrolyte disturbances. As blood pressure drops, perhaps approaching 60/40 mm Hg, radial pulses may become thready, limbs may feel cool, and mottling—lacy, irregular patches of discoloration—may appear. These signs usually indicate that the patient is within hours of dying. Common signs of impending death are listed in Table 16.1 along with their usual associated prognosis.