What Framework Can Be Used to Address Uncontrolled Symptoms at the End of Life?

Introduction and Scope of the Problem

Emergencies in palliative care are infrequent, unpredictable, often lack a formal definition, and can have lasting effects on patients, families, and medical staff. In general, evidence for interventions in emergencies is low quality due to an inability to rigorously study these events in the usual randomized fashion. In the absence of evidence-based guidelines, this chapter proposes that clinicians plan for emergencies using a framework that can be tailored not only to the specific symptom but also to their patient’s specific disease process, goals of care, access to care, physical location, and psychosocial situation.

This chapter then applies the proposed framework to the clinical scenarios of terminal hemorrhage, uncontrolled seizures, dyspnea crisis, terminal agitation, and uncontrolled pain, and provides summaries of evidence for interventions where possible. Through the discussion of terminal hemorrhage, the authors will provide more detailed discussion of the suggested framework and general considerations that may be applied to other palliative care emergencies.

Communication is a key concept and skill in providing palliative care. Calm yet confident clinician guidance, attention to emotion, exploration of goals, and shared decision making continue to be important aspects in palliative emergencies.

Relevant Framework for Approaching Palliative Emergencies

The following framework, developed through literature review, conventional wisdom, and expert opinion, is intended to support busy clinicians. Keep in mind that it is neither individually prescriptive nor exhaustive.

1
Anticipate and identify those at risk . Attempt to estimate the likelihood of the specific emergency in high-, moderate-, and low-risk categories. Utilize clinical experience and pathophysiology of the primary disease process, history of prior events (e.g., prior sentinel bleed, prior dyspnea crisis), comorbidities, medications, and psychosocial issues that increase risk, including health literacy and ability to follow complex instruction.
2
Provide anticipatory guidance and prepare the care team . First, consider whether it is appropriate to discuss potential emergencies with the patient and caregiver based on the likelihood of occurrence and psychosocial factors. Hypervigilance around a possible emergency can produce trauma and a multidisciplinary team can help determine whether the patient or caregiver is able to engage with the information. If appropriate, provide the caregiver a concrete plan with sequential steps and exact dosing and timing on interventions in written format so that it can be referenced at a time of crisis. Share this document with any home-based services such as hospice agencies. To avoid inappropriate resuscitation if the paramedics are called, instruct the family to have a copy of an out-of-hospital Do Not Resuscitate (DNR) order or Medical Orders for Life-Sustaining Treatment (MOLST) and have an action plan easily accessible.
3
Implement preventive measures . “An ounce of prevention is worth a pound of cure” is nowhere more applicable than in palliative emergencies. In this step, determine the modifiable factors and consider the risks and benefits of changes in current management. This often includes assessing medications and optimizing the environment.
4
Actively manage . Provide comfort-directed, disease process–specific care, factoring in the location of care, medication availability, proximity to health care institutions, and patient goals and values. Respect the patient’s wishes to be transferred to a hospital if they choose. Ensure good communication plans among providers, families, and home agencies such as hospice when appropriate during active crisis management.
5
Escalate care . If symptoms are refractory to management in the community setting, escalation of care to an inpatient hospice bed or hospital may be considered. For patients receiving hospice services, crisis symptoms may be managed with continuous care in the home. If symptoms remain uncontrolled or the consequences of treatments are intolerable, consider palliative sedation—the intentional lowering of awareness toward, and including, unconsciousness with the goal of relieving suffering. When considering palliative sedation, take into account life expectancy, ability to transfer to a higher level of care, and patient values.
6
Follow up . Working through a palliative emergency can be difficult and even traumatic for families and staff. Debriefing with staff after an event may help them cope with the emotional nature of the event—thereby improving both satisfaction and wellness—as well as serve as process improvement—whereby the team can look at “lessons learned” and make changes to the plan to refine the care of patients with a similar emergency in the future. Likewise, debriefing with the family caregivers may be able to reduce both posttraumatic stress as well as complicated bereavement.

The next section applies this framework to the following palliative emergencies: terminal hemorrhage, seizures, dyspnea crisis, terminal delirium, and pain crisis.

Evidence-Based Approach to Specific Emergency Conditions

Terminal Hemorrhage

The medical literature lacks a formal definition of terminal hemorrhage, so the authors define it as uncontrollable, typically arterial, bleeding that results in death within a short time. This section will focus on external, visible bleeds as these are the most likely to cause distress at end-of-life. The literature on terminal hemorrhage consists mainly of descriptive or expert opinion and is largely focused on advanced head and neck cancer patients who experience carotid blowout syndrome (CBS), but terminal hemorrhage can also result from gynecological cancer, cancers throughout the gastrointestinal tract, cancers invading the bronchial arteries, and patients with end-stage liver disease and portal hypertension. The most commonly cited incidence of terminal hemorrhage, 3% to 12%, comes from systematic analysis of hospital records of CBS. However, this likely underestimates the incidence of terminal hemorrhage because it does not account for patients who died outside the hospital with a terminal hemorrhage event.

Anticipate and Identify Those at Risk

Risk factors for terminal hemorrhage to consider include tumor size, proximity to large arteries, history of sentinel bleeds (a significant bleed that resolves with packing and pressure), and history of treatments or conditions that can weaken blood vessel walls, including radiation, surgery, diabetes, and atherosclerosis. Unfortunately, no estimates of relative risk of these factors exist to guide physicians. Also consider risk factors for impaired hemostasis, such as thrombocytopenia, coagulopathy, disseminated intravascular coagulation (DIC), and uremia.

Provide Anticipatory Guidance and Prepare the Care Team

The decision to discuss the possibility and plan for a terminal hemorrhage with the caregiver and/or patient is complex because it could lead to severe distress despite the very low likelihood that the event will occur. To help alleviate concerns about suffering, caregivers and patients should be educated that terminal hemorrhage is not painful and is typically quickly followed by unconsciousness, thus suffering is minimized.

Provide caregivers with suction canisters and recommend dark towels to obscure the sight of blood in the canisters and at the site of bleeding. In the event of a hemorrhage, caregivers should be taught to provide local compression with dark towels and follow the “ABCs”: A (assure the patient that you are with them), B (be there; stay with the patient), and C (comfort and calm). Provide guidance on position if applicable; for example, patients with cancers invading the large airways who develop massive hemoptysis should be rolled into a lateral position with the affected side down. Lastly, educate caregivers on the administration of sedative anxiolytics, discussed shortly, but stress that this should never take precedence over the ABCs.

Terminal hemorrhage is frightening and caregivers understandably may call emergency services for help despite anticipatory guidance. Advise family members to have a copy of the written terminal hemorrhage action plan and DNR at the bedside to avoid confusion and inappropriate resuscitation when the paramedics arrive.

Implement Preventive Measures

Palliative care clinicians should weigh the benefits of medications that can increase the risk of bleeding, such as nonsteroidal antiinflammatory drugs (NSAIDs, including aspirin), steroids, anticoagulants, selective serotonin reuptake inhibitors (SSRIs), and sodium valproate. Consider continuing antihypertensives even in normotensive patients to reduce intraarterial pressure and reduce the risk of bleeding. Other possible prophylactic measures include empiric repletion of vitamin K, platelet and factor transfusions if laboratory values are suggestive of deficiency, and antifibrinolytic agents (tranexamic acid [TXA], aminocaproic acid). Interventional procedures such as embolization or stenting can prevent death from hemorrhage, but can come with significant morbidity such as stroke and prolongation of the natural dying process leading to more suffering at the end of life. Thus a thorough shared decision-making discussion is necessary before embarking on such procedures. If a patient has a tracheostomy and suffers an oropharyngeal hemorrhage, inflating the cuff can keep blood out of the lungs and minimize patient distress.

Actively Manage

Hemorrhage can progress to death in a matter of minutes; the mainstay of treatment is not related to medication administration, but rather to the ABCs: Assure the patient that someone is with them; Be there; and be Calm and Comforting. Patient positioning, dark linens, dark towels over suction canisters, and personal protective equipment can minimize the visual impact on caregivers as described previously. Bedside interventions to address bleeding may also include topical surgical dressings, packing, thrombin dressings, merocele packs, and silver nitrate.

Escalate Care

Given both the potential trauma of watching someone bleed excessively in a community setting as well as the potential need for delivery of intravenous medications to control symptoms, patients with terminal hemorrhage may be transferred to an inpatient setting, depending on patient goals and transit time to the nearest inpatient facility with palliative and/or hospice beds. Transfer to a location where palliative sedation can be administered rapidly may be beneficial. Although palliative sedation has strong theoretical support in the medical literature for terminal hemorrhage, its utility is limited due to rapid circulatory collapse and death. The most commonly cited medication regimen is midazolam at a dose of 5 to 10 mg administered intravenously, subcutaneously, or intramuscularly every 10 minutes as needed, but rectal and nasal diazepam and buccal lorazepam are also available for in-home use. Palliative sedation should not take precedence over the provision of assurance, presence, calm, and comfort.

Follow Up

Witnessing an emergency or uncontrolled symptoms such as hemorrhage at the end of life can be traumatic and may increase the risk for development of posttraumatic stress disorder (PTSD), complicated grief, and burnout. This risk may be especially increased for family and staff given the graphic nature of terminal hemorrhage, as most individuals have a significant emotional reaction to seeing excessive amounts of bleeding. In these cases it is especially important to make efforts to debrief health care workers and provide bereavement services to family members.

Seizures

Seizure presentations differ depending on the locations involved, with some patients displaying focal or partial seizures, complex partial or generalized seizures, as well as the more difficult to identify nonconvulsive seizures, often characterized by decreased consciousness. Seizures that fail to resolve spontaneously within 30 minutes or recur 3 times without full return of consciousness are defined as status epilepticus. Status epilepticus carries a poor prognosis with mortality rates up to 34% and as high as 60% to 80% in the elderly. Status epilepticus and recurrent or refractory seizures are palliative care emergencies that can be approached using the framework proposed earlier.

Anticipate and Identify Those at Risk

Common risk factors for seizures include structural brain lesions, systemic conditions (i.e., metabolic derangements, infection, hypoxia), and medication-related factors, including withdrawal, and are well described in the literature. Seizures may occur in 13% of patients with cancer at end-of-life, and an incidence of up to 58% in patients with primary or metastatic brain lesions in the last month of life. Risk also increases when the oral route of medication administration is no longer possible in patients on long-term antiepileptic drugs (AEDs) or GABAergic substances such as benzodiazepines.

Provide Anticipatory Guidance and Prepare the Care Teams

Seizure action plans, as well as other patient and caregiver resources, are widely available online for personalization and printing, and can provide reassurance to patients and caregivers. These action plans often include guidance on safe positioning, medications, and space to record details of the seizure or a reminder to videotape the episode.

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