How to walk a dying patient and their family through an unimpeded natural death in the emergency department
Mr. B presented to the ED acutely septic, likely secondary to an underlying pneumonia. He had advanced dementia and was functionally and cognitively declining at home. His recent life had been punctuated by trips back and forth to the hospital, as he succumbed to the repeated infections typical and expected in the final stages of dementia. We were able to contextualize this acute episode for the patient’s son. He was informed that all of these changes signaled that his father was indeed approaching the end of his life. As he shared personal information about his father, it became clear that attempting to artificially prolong his father’s life in his current condition would not be acceptable to him and that his father would choose a care plan that prioritized his comfort and quality rather than quantity of life.
Prior to the Goals of Care (GOC) discussion with the son, Mr. B was an acutely septic patient with a relatively straightforward treatment plan. In many ways, the discussion made him a more complicated patient, on a road less traveled in the ED: that of the naturally dying patient. Unimpeded natural death is rarely discussed in emergency medicine. And yet, EPs must be able to recognize the symptoms and patterns that are common in the last hours to days of life if they are to provide the high quality EOL care that such patients deserve.
Two Roads to Death
Two major pathways to death have been described: The easy and the difficult road (Figure 1). Depending on the road a patient takes, the intensity of ED management may vary significantly. For instance, some patients are highly symptomatic at the EOL, requiring intravenous medications and even continuous drips to maintain comfort while others can be managed by relatively simple oral regimens in the home setting, with the support of hospice services.
For symptoms like pain, the EM skill set proves sufficient as the management of healthy patients and those at the EOL is similar. EM treatment algorithms are less relevant, however, for symptoms like dehydration, delirium and dyspnea in the dying patient. For this reason, we will focus our attention on the unique approach to these common and often troublesome EOL issues.
1) Dehydration / Poor Oral Intake
Dehydration and poor oral intake are common reasons that patients present to the ED at the EOL1.While reversible causes of decreased oral intake such as thrush or nausea may be identified and treated, anorexia is a normal part of the final common pathway for all dying patients, particularly those with advanced dementia2. While being medically “normal,” a patient’s lack of interest in food can be particularly distressing to caregivers because providing food and nourishment is, in many cultures, a means of expressing love. Accordingly, there are both cognitive and emotional factors that must be addressed when counseling patients and families about anorexia and dehydration at the EOL.
a) Empathy: The provider must empathize with this distressing situation. Caregivers are burdened by personal, cultural, and religious mores, a wish to do everything for their loved one, and by a desire to never abandon someone who may have cared for them in a time of need.
b) Reassurance: Caregivers need to know that anorexia in and of itself does not cause distress to patients. It may even be protective by reducing the risk of aspiration and ensuring a comfortable dying process3.
c) Education: Many families and caregivers will inquire about the use of artificial nutrition and hydration (ANH) in their dying loved one. In those patients with dementia, there is a substantial body of evidence to inform the discussion about artificial nutrition (AN). AN does not prolong life, improve patient comfort, or decrease aspiration events4,5. In fact, feeding tubes can contribute to patient suffering by reducing human interaction, increasing the use of mechanical restraints, and prompting repeated ED visits and hospitalizations for complications6,7. In regards to artificial hydration, there is less evidence to guide use of this intervention, so judgment should inform whether a time-limited trial of intravenous fluids meet patient and family goals8.
Medical management: Focus on providing mucosal lubrication. This will relieve patient discomfort while also allowing caregivers to express their love, as an alternative to feeding. Cleaning swabs with artificial saliva for the mouth and artificial tears for the eyes can be used as needed to ensure patient comfort.
Dyspnea, a subjective sensation of breathlessness, is reported by more than 50% of patients in the end stages of conditions like COPD, AIDS, cancer, and dementia9,10. It is distressing for the patient and generally difficult for caregivers to observe. The prevalence and severity both increase in the last 6 months of life11,12. Not surprisingly, it is one of the most common reasons that patients seek care in the ED at the EOL13. Some causes, such as fluid overload, anxiety, pain, and urinary retention are easily modifiable with minimal intervention. For many patients, however, dyspnea marks the final common pathway to death and invasive interventions are not only unhelpful, but burdensome and inappropriate. Fortunately, the symptomatic treatment of dyspnea is fairly consistent and effective across disease types when comfort is the primary goal of care.
Experiencing physical suffering at the EOL is a common fear amongst dying patients14. Since dyspnea is a very distressing symptom to patients, emphasize to both patients and families that there are effective treatments available for palliation.
Medical management: Opioids – As EPs generally have less experience administering opiates for acute dyspnea and there is little consensus on appropriate starting doses for dyspnea versus pain, physicians should follow the general rule of “start low and go slow.” In the opiate naïve patient, morphine 1 mg IV (or hydromorphone 0.2 mg IV) can be used as an initial starting dose. If no effect is seen, the dose should be escalated in a step-wise manner, doubling the dose with repeated administration every 10-15 minutes, until relief is achieved. For opiate-tolerant patients, the common practice is to use 10% of patient’s 24 hour pain regimen for dyspnea15. One randomized trial was performed using 25% of 4 hour pain requirement dose as an initial regimen, which is shown to be effective in terminal cancer patients16. If available, in-house palliative care consultation may benefit to care for such patients.
Caregivers and medical colleagues commonly express concern that opiates may hasten the dying process. In fact, when carefully administered to target symptom relief, multiple studies have demonstrated the safety of opiates in this population. They neither hasten death nor have a significant impact on patient oxygenation17-20.
b) Oxygen – Hypoxia and dyspnea are often unrelated at the EOL. Accordingly, a large randomized trial has demonstrated that oxygen is no better than room air when used to relieve dyspnea in dying patients21. In some patients, however, particularly those with conditions like COPD, oxygen may be a useful palliative intervention. The EP may consider initiating a time-limited trial of supplemental oxygen, presuming the delivery device does not cause significant discomfort for the patient.
c) Fan – Nonpharmacologic agents like bedside fans may also play a role in the management of the acutely dyspneic patient. In a small randomized trial of patients with advanced illness, over half with underlying pulmonary disease, the use of a small, handheld fan significantly lowered the sensation of dyspnea22. While the precise physiological mechanism for this effect remains unclear, given the low cost and simplicity of this intervention, it should be considered, where available.
d) Anticholinergics – At the end of life, many patients lose the ability to tolerate and swallow their oral secretions23. As air passes over these pooled secretions in the posterior pharynx, a sound known as the “death rattle” is often generated. While this noise does not necessarily indicate patient discomfort, it can be distressing to family and friends at the bedside. Various anticholinergic drugs have been studied for their ability to mitigate this issue. The most commonly used agents are glycopyrrolate, atropine and scopolamine. There is little evidence demonstrating their efficacy over placebo24,25.
Delirium is defined as an “abrupt change and fluctuation in alertness, consciousness, and cognition derived from a medical condition26.” It is the most common neuropsychiatric disorder in terminally ill patients27. As is the case for dyspnea, the prevalence of delirium increases as patients approach the end of life28. The clinical spectrum of delirium ranges from hypoactive (more common, often confused with depression) to hyperactive. Terminal delirium is reversible in 27% to 50% of cases. Nonetheless, terminal delirium portends a poor prognosis, ranging from weeks when reversible to days when irreversible29.
Empathizing with caregivers is the key to a successful clinical encounter. It is incredibly difficult for caregivers to witness acute changes in their loved ones behavior and cognition, often meaning that they are “losing” their family member, prior to the actual death.
Reassure family members that their loved one is not “going crazy” by emphasizing that delirium is a normal part of the dying process in many patients. In addition, specific hallucinations like seeing deceased relatives are particularly common.
a) Address reversible etiologies:
In some patients, simple infections like UTIs and electrolyte abnormalities like hypercalcemia can be easily diagnosed and corrected. Organ system failures and hypoxic encephalopathy are generally irreversible or may require invasive treatments in terminal cancer patients.30 While awaiting resolution of the underlying problem, non-pharmacologic management of delirium should be attempted first, if safety permits. Patients should be placed in a quiet, well-lit room with compassionate and consistent attention from their caregivers. These conditions are often unattainable in the ED, but an effort should be made to keep familiar caregivers at the bedside at all times.
b). Pharmacologic treatment:
In patients who are actively dying, particularly those in the last hours to days of life, delirium is often irreversible, so the focus shifts to palliating this symptom, rather than reversing the underlying cause. The American Psychiatric Association recommends parenteral Haloperidol based on limited evidence in terminal AIDS patients with delirium. Starting doses of 0.5 to 1mg IV are typically used in the palliative care setting.31 While antipsychotics are the 1st line agents used to manage terminal delirium, benzodiazepines are often needed in conjunction to relieve severe agitation.
While transitions of care at the EOL can be complex, a decision making model that incorporates both patient goals and overall symptom burden can assist emergency physicians in determining an appropriate disposition plan for the dying patient.
1. All Life-Sustaining Care Desired
Hospital Admission and "traditional" care + Palliative Care (PC) Consultation*
2. Comfort + “limited” life-sustaining care desired
Admission to regular medicine inpatient bed versus palliative care unit, with a time-limited trial of interventions like antibiotics or non-invasive positive pressure ventilation. A palliative care consult for those admitted to an inpatient bed will ensure optimum symptom management and goal-oriented patient care.
3. Comfort Care Only
a) Intensive Symptom Management required 4 Admit to palliative care unit or inpatient hospice
b) Manageable Symptoms in ED 4 Discharge with Home Hospice** or admit to palliative care unit until home with hospice (or similar) plan can be implemented.
You stand at the bedside and give the patient repeated doses of morphine until he appears more comfortable. In total, it took 4 mg of morphine to achieve the desired effect, so you start the patient on a morphine regimen of 4 mg IV every 4 hours. His son asks what you will do to prevent his father from “starving to death” since he is not eating or drinking. You carefully communicate that all patients lose interest in food at the end of life and that this is a normal part of the dying process that is neither painful nor uncomfortable. In inquiring about the patient’s home situation, it becomes apparent that while he has six hours of assistance daily from a home attendant, his son is currently providing the remaining 18 hours of care that his father needs. As it is late in the afternoon, referrals for hospice and additional home care services cannot be arranged quickly enough to allow for the patient to transition home from the ED. Your hospital has recently opened an inpatient palliative care unit so you call the palliative care consultant, who agrees that this patient would be very appropriate for an admission to their unit. They thank you for ensuring that this patient received such high quality EOL care, particularly given how busy you must be managing an emergency department. They assure you that their staff can assume the challenges of disposition planning if the son decides that his father would indeed want to die at home. As it will be some time before the patient can be transported upstairs, your staff moves the patient and son into a private room in the ED. As you leave your shift that evening, you walk by the room and note the patient’s son, sitting by the bedside, holding his father’s hand. You are reminded of the famous Hippocrates quote about our role as physicians, to “cure sometimes, treat often, and comfort always.”
We want to extend our appreciation for Drs. Tara Liberman and Bethann Scarborough for their palliative medicine expertise, and Dr. David Marcus for his editorial inputs.
* Hospital-based palliative care service (HBPCS) can provides advanced symptom management at the EOL, in addition to ensuring GOC discussion upon admission. For hospitals with 50 or more beds, the prevalence of HBPCS has increased from 24% in 2000 to more than 52% in 2008. Although there is significant variability among regions, larger hospitals tend to have higher prevalence of HBPCS.32
** This plan will likely require involvement of case managers/social workers to coordinate and implement. The family must be capable of managing the physical, emotional and financial demands associated with caring for a terminally ill patient.
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