Key Clinical Questions
Overview
There is substantial evidence that patients with advanced chronic illness often receive inappropriate or inadequate care, have poorly managed symptoms, experience spiritual distress and financial worries, and possess incomplete knowledge about illness progression. Hospitalized dying patients frequently receive aggressive care up to and including life-sustaining treatment and resuscitation, but inadequate preparation for potential death. Since approximately 50% of deaths occur in the hospital setting, substantial numbers of patients may experience increased suffering due to futile or iatrogenic interventions, needless delays to timely discharge, and insufficient patient and family inclusion in decisions about end-of-life care.
Recent government data show the aggregate costs of dying in the hospital amount to $20 billion. The average cost of an admission ending in death is three times that of a patient who is alive at discharge ($26,000 versus $94,00). Patients who had procedures (73%) were more likely to die than those who had none (27%). Twelve percent of those who died were admitted for an elective procedure, while 72% were admitted through the emergency department. Medicare insured 67% of all the patients who died in hospitals at a cost of more than $12 billion. Although more studies are needed to show whether this is too much or too little to spend, abundant evidence suggests that there is significant room for improvement in the area of end-of-life care.
An underlying diagnosis of metastatic cancer, end-stage renal or lung disease, severe liver disease, or congestive heart failure and a decline in performance status increase the likelihood of dying in the hospital. Other factors include prolonged length of stay without evident progress and a diagnosis of frailty in elderly patients. The dying process may begin with a gradual decline in a patient initially admitted with multiple comorbidities. The decline to death may occur more rapidly with a sudden cardiac event or respiratory failure. Sometimes invasive procedures such as the placement of a percutaneous feeding tube, stent, endoscopic retrograde cholangiopancreatography (ERCP), or bronchoscopy may precipitate the decline of a compromised, frail patient.
Care on the General Unit
The dying process usually occurs over hours to weeks and should be suspected when certain signs are present (Tables 219-1 and 219-2).
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Factors that may prolong the dying process include artificial hydration, nutrition, and supplemental oxygen as well as unresolved emotional or spiritual conflicts that include the patient’s “readiness” to die, family conflict, or need for reconciliation (Table 219-3).
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Ideally, the patient’s health care team (eg, the patient’s primary nurse, a social worker or care coordinator, and sometimes consultants or the hospital chaplain) periodically meet with key family members and with the patient, if appropriate, to update progress, answer questions, address issues relating to prognosis, and provide additional perspective and support. As soon as the team recognizes the dying process as more imminent, a subsequent family meeting should take place with members of the multidisciplinary care team. Clinicians should document in the medical record attendees, a summary of understanding about the disease process, the patient’s values and preferences, any decisions about life-sustaining treatment, and next steps.
In a private place, the health care team should spend more time listening to the family than speaking, soliciting, and responding to questions. The team should assure the family that the patient will not be abandoned and will be kept comfortable. The team should also empathetically respond to the stress, fears, and challenges of a family facing the death of a loved one. Honest sharing of the prognosis helps the family prepare emotionally and practically for the patient’s death. Although families may not believe the prognosis, the medical team should be honest and not withhold information that may result in a false sense of hope. Disclosing a poor prognosis should include planning on the medical team’s part, firing a “warning shot,” and asking who the patient wants present for that conversation.
Clinicians should aggressively manage distressing symptoms. Allowing the family access to the patient by providing relaxed visiting hours and overnight stay, if possible, promotes a normal grieving process and enhanced communication (Table 219-4).
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