Hospice Symptom Management

Uncomfortable physical symptoms and psychological distress are common at the end-of-life. Many symptoms are typical during the final hours, while others occur earlier for people receiving hospice care. These symptoms are upsetting to patients and caregivers. Many symptoms can be prevented or managed to promote comfort and decrease suffering - a core priority of hospice organizations.
 
This pages reviews the following common symptoms that occur at the end-of-life: pain, dyspnea, and other distressing symptoms: anxiety, constipation, diarrhea, death rattle, delirium, depression, fatigue, hemorrhage, nausea/vomiting, wounds. While some Best Practices described here, and the resources identified, were developed for management of cancer related symptoms, they are broadly generalizable to ease end of life suffering for any condition.
 
Use these links to navigate to key sections:

Dyspnea
Pain
Other distressing symptoms

ElevatingHome recommends users also review Blueprint for Excellence modules on "Care for All Patients," for recommendations on safety and care interventions for all patients in home health and hospice. 


Elevating Home Best Practices
  1. Symptoms that can be expected in the final hours are discussed and documented prior to the last hours
  2. Symptoms in the final hours are treated according to patient/caregiver preferences
  3. Caregivers are educated on what to expect in the final hours and have a plan in place for their own actions and what to expect from hospice staff
Recommended Information: National Cancer Institute PDQ® Cancer Information Summaries: Supportive and Palliative Care
 

Dyspnea

Dyspnea (also called shortness of breath or breathlessness) is a common symptom at the end of life that can be functionally limiting and distressing to patients and caregivers. On the initial home visit, evaluating and addressing dyspnea is a core priority for effective patient care. The Hospice Item Set requires hospice programs to screen for dyspnea during the initial nursing assessment, and if found to be present, patients must receive treatment within 1 day of the screening.
 
Patients in their last days typically become unable to self-report; many are also deeply fatigued and may not wish to respond to a detailed assessment. Thus hospice patients are at risk for over and under-treatment of dyspnea unless assessed effectively (Campbell, Templin, 2010). Observation of symptoms and physical indicators, along with caregiver report should be used to recognize dyspnea (Campbell, 2010).
 

ElevatingHomeBest Practice
  1. Interventions can be combined or intensified until the patient is comfortable. Non-pharmacological interventions to reduce shortness of breath include: positioning and comfort, environmental, use of a fan, mindful breathing, oxygen, reduction of anxiety, and relaxation techniques. Medications can include opioids (morphine or fentanyl) and benzodiazepines (lorazepam) used as an adjunct.
  2. Assessment approaches and interventions depend on whether the patient is verbal and cognitively aware.
  3. For patients who cannot communicate respiratory distress, caregiver and standard assessment tools should be used in assessment for signs of dyspnea and dyspnea relief.
  4. Other respiratory symptoms such as cough, increased secretions and wheezing should also be addressed.
Critical Interventions for Dyspnea
  • All patients should be screened for the presence and severity of dyspnea using an appropriate tool for the patient’s condition (based on their verbal ability and cognitively awareness) and/or diagnosis.
  • If dyspnea is present, the hospice should be prepared to offer pharmacologic and non-pharmacologic treatments on site and at the first visit.
  • If the patient is in respiratory crisis, the nurse should stay in the home until the patient is comfortable and the caregiver is comfortable with the care. The need for nursing in home for 2 hours or more may trigger evaluation of need for continuous nursing care. After leaving, the hospice should call the patient/caregiver at a specific interval post-visit or at bedtime to check in.
  • Reassessments to evaluate comfort should occur on each visit and when the patient exhibits signs of distress. An on-site visit should be triggered if the patient/caregiver calls more than once regarding dyspnea.
  • Educate caregiver on dyspnea, symptoms, what is normal given the patient’s status and how to identify increased discomfort. Also educate the caregiver about what to expect regarding changes in breathing in the last few days.
  • If 2 doses of opioid are not effective, the dose may need to be increased.
  • Patients who have respiratory symptoms and or live alone are initially called by the on-call nurse every evening and weekend in order to develop trust and build relationships. Use a method such as SOS for SOB to help talk someone through the anxiety caused by dyspnea.
  • Both pharmacologic and non-pharmacologic interventions should be included in the treatment plan. See below for both interventions.
Pharmacologic Interventions for Dyspnea

A variety of medications are used for dyspnea. Table 1 shows medications used to reduce dyspnea. For patients with terminal disease and dyspnea, opioids are a first line choice in symptom relief (NCI Dyspnea). 
 
Table 1: Medications to Reduce Symptoms of Dyspnea in Hospice
Reduce respiratory distress
 
  • Opioid treatment is typically with immediate-release morphine, which reduces the respiratory system autonomic response to oxygen need. Opioid dose is titrated to bring relief to the patient (Maxwell, 2007).
Reduce anxiety
 
  • Anxiolytic agents such as the benzodiazepine lorazepam are commonly provided as an adjunct to morphine.
Treatment of cough
 
  • Medications for cough are multifaceted and are determined by the underlying cause of the cough. Opioids suppress cough, antibiotics reduce infections that promote secretions, diuretics reduce fluid in the lungs for patients with heart failure.
  • Some patients also benefit from medications that numb the throat to reduce cough reflex.
Reduce secretions
 
  • Administration of anticholinergics can reduce secretions that contribute to cough and discomfort.
  • Anticholinergics may cause dry mouth as a side effect, so are used as needed when secretions are causing patient distress.
  • Guaifenesin with or without codeine is used to increase viscosity of secretions.  
  • Some hospices offer nebulized saline for patients to loosen thick secretions.
Open airways
 
  • Bronchodilators are used to reduce wheezing
  • As patients near death they lose the ability to use a metered dose inhaler.  Bronchodilators should be provided as aerosol treatments in this case.
  • Corticosteroids are used as adjuncts to other dyspnea treatments to shrink swelling around tumors and in the airways.
Newer Approaches
  • Many hospices have developed techniques for reducing dyspnea that have some evidence but are not yet recommended by guidelines. For example,
  • Some hospices report good results by using nebulized Lasix (furosemide) in dyspnea management as it reduces the sensation of not getting enough air (Newton 2008).
  • Although evidence is inconclusive, some hospices report patients’ getting relief from nebulized morphine.. Nebulized medications may be used if the patient cannot get dyspnea relief through other modalities.
Interventions can be combined or intensified until the patient is comfortable. For further information see NCI Symptom Management NCI PDQ 2014)
 
Table 2: Non-Pharmacologic Interventions for Dyspnea
Manage Environment
 
  • Provide a calming environment based on the patient’s perception of calm.
  • Try temperature or lighting changes, providing music or controlling the number visitors in the room.
Use Fan
  • Many patients benefit from a fan blowing air at the face.
  • A wet cloth on the face in addition to the fan stimulates the trigeminal nerve and may provide the sensation of better ability to breath.
Try Mindful Breathing
 
  • Patients with COPD often feel some relief with pursed lip breathing.
  • Although there is not strong evidence for it, some patients benefit from “pacing” their breathing to synchronize with controlled breathing of a loved one or provider who is acting as a model or coach.
  • Dyspnea generally is not relieved by breathing techniques when the patient has failing pulmonary function due to terminal COPD or in active dying phase.
Use of Oxygen
 
  • Oxygen is not beneficial for patients near death except where it is reported or observed to decrease patient distress. Oxygen should be provided in the method or flow that achieves comfort for the patient.
  • Oxygen delivery mode – mask, cannula or tent - should also reflect the patient’s wishes.
  • When used, humidified oxygen may prevent dry mouth.
  • Oxygen saturation levels of the blood and oximetry monitoring may predict respiratory distress but do not signify distress; some patients display respiratory comfort even in the face of profound hypoxemia.
Positioning and Comfort
  • Many patients are more comfortable upright or in “tripod” sitting position (leaning against a table).
  • Many patients experience a dry mouth or lips – olive oil or swabs may help with relief.
Reduce Anxiety
 
  • Dyspnea can make the patient anxious and fearful.  The increased muscle tension increases oxygen consumption that exacerbates the breathlessness.
  • The first line approach is to reduce dyspnea, which reduces anxiety.
  • If the patient remains anxious, she/he may be offered relaxation techniques and medications for the anxiety, in addition to medications specifically targeted to dyspnea and identified here.
 

Recommended Resource: NIH PDQ: Dyspnea in Patients With Advanced Cancer
 

Pain

A core tenant of hospice care is to adequately manage pain according to the patient and caregiver perceptions. Pain is a prevalent and an under treated symptom. Pain management is a high concern and priority for patients and caregivers, particularly in hospice. Pain screening and assessment are critical steps in pain management and treatment and is also a required measure on the Hospice Item Set. Although opioid dependence and addiction are an important national concern, addiction and dependence is a secondary concern in hospice, where effective management of pain for the patient is a primary consideration.

Pain management should be implemented as a step or laddered approach. Interventions can be layered on top of each other, and added to as needed. Standardized tools support hospice comprehensive assessment and can be cross-walked to CMS requirements to ensure that all required data elements are covered. It is essential to involve the patient and caregiver in identifying strategies and providing feedback on effectiveness.


ElevatingHome Best Practices

  1. All patients admitted to hospice are screened during the initial nursing assessment for the presence or absence of pain and its severity, if present, using an appropriate, standardized tool (Pain Screening HIS J0900A). If pain is found to be present, a full, comprehensive pain assessment appropriately administered and relevant for the patient’s ability to respond is completed within one day of screening (Pain Assessment HIS J0910).
  2. Hospice personnel should ensure that patient’s pain is at an acceptable level before ending the initial hospice visit.
  3. Anticipate and prepare the patient and caregivers to address breakthrough pain. An “E-Kit” in the home may include additional dosages of pain medications. Frequency of breakthrough pain should be evaluated at each assessment and sustained-release doses may be increased if three or more breakthrough doses are used in a 24-hour period.
Recommended Resource: National Cancer Institute PDQ: General Information About Cancer Pain (detailed information can be generalized to all pain conditions)

Helpful Hints and Tools
  1. Hospices should develop crosswalks from their own tools to CMS requirements for screening and assessment to ensure that all required elements are documented.
  2. Relief of pain is identified by the patient’s self-report or, when the patient is unable to self-report, from observation of behaviors by caregiver(s).
  3. Consider whether cultural influences are impacting the patient and caregiver experience of pain. There are cultural and gender differences in expressions of pain and response to pain interventions (Pasero, 2011). At risk populations include racial and ethnic minorities (Green, 2003; Shavers, 2010) the elderly (Stewart, 2012; Cavalieri, 2005) and women (Leresche, 2011)
  4. Many patients prefer brief assessments either because of fatigue or because they have experienced multiple assessments over the course of their illness.
  5. After the initial comprehensive assessment, use a brief follow up assessment to evaluate changes in pain status at each visit.
  6. As patients become closer to death, transition from using self-reported to observational tools and reports from caregiver members as appropriate.
  7. Pain management includes both pharmacologic and non-pharmacologic interventions. Detailed intervention strategies can be found in several tools including the VNAA Clinical Procedure Manual and NIH reference materials.
Critical Interventions
Pain Assessment and Management
  • All patients should be screened for the presence of pain and if present, its severity, using a standardized, patient appropriate tool, taking into account that a patient’s experience of pain is impacted by many factors, including the underlying cause, anxiety, cultural, psychosocial, and spiritual.
  • Determine tools to use based on whether patient is cognitively intact and can self-report. Screening of patient’s pain for those who are cognitively impaired relies on observation of physical symptoms.
  • CMS requires the initial screening to include both evaluation of presence of pain and the severity of pain using a standardized tool. Consider the use of brief tool because of fatigue and the need to continually assessing pain. See Recommended Tools for pain screening below.
  • ElevatingHome recommends initial screening with a standard Verbal Descriptor Scale (VDS) such as the Iowa Pain Thermometer. This tool is simple to use and includes descriptors ranging from “no pain,” to “pain as bad as it could be.” The Faces Pain Scale R or FPS-R tool is also recommended as one of the most validated and commonly used tools to assess for presence of pain and pain intensity (Hicks, 2001; Bieri, 1990). The FLACC is recommended for child assessment and the PAINAD tool for screening of persons unable to self-report.
  • Pain assessment tools for persons unable to self-report do not directly correspond to CMS-coded categories of mild/moderate/severe. Hospices will need to develop crosswalks to ensure that assessments are scored to correlate with CMS requirements.
  • If pain is present, a comprehensive pain assessment should be done which includes the following domains: location, severity, character, duration, frequency, what relieves/worsens pain, effect on function or quality of life (see See Table 3 for interventions relating to assessment domains).
  • A multi-disciplinary approach should be used including assessment of spiritual/existential, cultural and or psychosocial concerns exacerbating pain, and the caregiver’s response to pain (see Table 4).
  • Staff should consider the type of pain (chronic vs. acute) in treatment planning.
  • Cultural influences effecting patient and caregiver experience of pain should also be assessed.
  • A PAIN PLAN should be developed to guide management and treatment of pain with the goal of relieving pain and suffering according to the patient and caregiver preferences Table 5). The plan should include both non-pharmacologic (see Table 6) and pharmacologic interventions (see Table 7), involve the interdisciplinary hospice team members, reduce preventable side effects and address non-physical pain domains such as spiritual and psychosocial pain. It includes caregiver education and involvement.
  • Pain should be reassessed when new pain is suspected, if there are exacerbations or uncontrolled pain, at the time of new drug therapy and as the means to evaluate the outcome of pain interventions.
  • Assess pain around-the-clock if the person is receiving active pain treatment.
  • All patients treated with an opioid should be prescribed a bowel regimen within one day of opioid prescription, or have documentation as to why a bowel regimen is not needed.
  • Patient comfort should be at an acceptable level before ending the initial hospice visit.  Follow up with 24 hours to reassess comfort level.
  • Teach the patient and caregiver how to use pain medications available including sustained and immediate release opioids.
  • Patient pain status should be reviewed at each interdisciplinary care team meeting.
  • Explicitly document the patient’s goals for managing pain.
  • The hospice should assure immediate access to medications needed for prompt relief of symptoms that commonly arise in terminally ill patients.
  • CMS requires that comprehensive pain assessment include at least five of the elements listed in Table 1 (although documenting just one element will allow the hospice to report “yes” a comprehensive assessment was completed):
Table 3: Best Practice Recommendations For Each CMS Pain Assessment Domain
Presence of pain
 
  • Use screening tool to document presence of pain and intensity
  • Use body location chart / schematic
  • Probes:
    • Document all locations for all types of pain
    • Note if pain radiates, is referred or is breakthrough pain
    • Look for nonverbal cues for those who cannot self-report
Severity
 
  • Use evidence-based assessment tools and ascertain intensity of pain:
    • Self-Report Tools: ask if the patient has pain! Obtain pain intensity rating.
    • Staff Observation or Behavioral Assessment Tools: List behaviors that suggest pain. Used for individuals who are unable to self-report. Observe behavioral indicators of pain. Total score is derived – cannot be used to calibrate intensity; our best guess.
Character of pain
 
  • Ask: Tell me about the type of your pain? Offer words to help patients describe pain: e.g., aching, sharp, dull, squeezing, radiating, tender, throbbing, burning, tingling, etc.
  • Probes:
    • Type (one or both): Acute, Chronic, Persistent
    • Character (one or both): Nociceptive, Neuropathic
  • Medical record captures the descriptors
Duration
 
  • Ask: How long has the pain you describe been a problem?
  •  Probes:
    • Examine medical history
    • Gather analgesic history
    • Differentiate type and character of pain (e.g., acute, chronic, referred, radiating, nociceptive/neuropathic, breakthrough)
    • Be sensitive to the person who cannot self-report; note duration of behaviors that suggest pain
Frequency
 
  • Ask: How often does the pain occur? Be aware of nonverbal patient.
  • Probes:
    • Use a day cycle or pain diary
    • Explore radiating or breakthrough pain
    • Always think of interventions that will address pain cycles
  • Think about patterns - intermittent vs. constant vs. mixed
Relief / worsening factors
 
  • Ask:
    • What makes the pain better? / What makes the pain worse?
  • Probes:
    • Basic needs, nonpharmacologic, pharmacologic
    • Physical, psychological, emotional, spiritual or total pain at end-of-life
    • Example: note if actions increase/decrease pain for nonverbal patients
Effect on function or quality of life
 
  • Ask: How does pain affect your ability to function and do what you like?
  • Probes:
  • Has there been any change in your activity level?
  • What can you not do because of pain?
  • What could you do if pain was controlled?
  • Be sensitive to non-verbal cues; explore and validate
  • Examine patient/caregiver goals of care
 
 
Table 4: Elements of a Comprehensive Pain Assessment
  • Review medical history, physical exam and relevant diagnostic testing
  • Evaluate cognitive and functional status; assess for pain behaviors (or use a tool if needed for patients with cognitive impairments)
  • Quantify and document the pain using a valid standard assessment tool (this will enable a re-assessment later to evaluate effectiveness of treatment.)
  • Identify characteristics of current pain: location, intensity, quality, onset, duration, pain relief, and factors that make it better or worse; accompanying non-pain symptoms (i.e. constipation)
  • Obtain pain history including causes of prior pain, medications, and patient response
  • Review current medications and non-medication pain relief strategies such as application of heat or cold, massage, or other interventions;
  • Evaluate non-physical sources of pain, such as spiritual or psychosocial distress
  • Frequently reassess to identify new or ongoing pain
  • Frequently re-assess the effectiveness of pain management.
*Source: ICSI, 2013; Horgas, 2013
 
The risks of under-treatment are exacerbated in special populations who may not be able to fully communicate the intensity of pain or communicate at all.  There are cultural and gender differences in expressions of pain and response to pain interventions.  At risk populations include racial and ethnic minorities (Green, 2003; Shavers, 2010), the elderly (Stewart, 2012, Cavalieri 2005) and women (Leresche, 2011).
 
Table 5: Pain Plan 
A pain plan is multimodal and includes pharmacologic and non-pharmacologic interventions. Development involves interdisciplinary hospice team members, with the goal to alleviate the patient’s suffering and reduce preventable side effects. The plan:
  • Addresses non-physical pain domains such as spiritual and psychosocial pain
  • Includes caregiver education and involvement
  • Is patient and caregiver-centered
  • Acknowledges the trade-offs that may be needed to achieve comfort (for example by noting that higher levels of opioids may decrease the patient’s alertness)
  • Explicitly documents the patient’s goals for managing pain
  • Addresses breakthrough pain and ensure that the patient and caregivers have a plan and tools for managing it – including an ‘e-kit’ if possible (an emergency kit)

Non-Pharmacologic Interventions
A wide variety of potential interventions can help to reduce a patient’s pain. The patient and caregivers are the best source of information on what works and preferences for non-pharmacologic interventions. These interventions should be paired with pharmacologic treatment, and intensified or changed base on patient responses.
Table 6: Non-Pharmacologic Treatment of Pain
Options that can be tried:
  • Companionship
  • Distraction
  • Prayer or other spiritual support
  • Physical changes such as re-positioning, physical therapy, or aquatherapy
  • Heating pads or cold packs
  • Warm baths
  • Massage, acupuncture or other alternative therapies
  • Cognitive coaching, relaxation or breathing techniques, hypnosis
  • Environmental changes such as music, lighting, or aromatherapy


Pharmacologic Treatment of Pain

In hospice settings, the objective of pharmacologic intervention is pain relief acceptable to the patient and caregiver (Qaseem, 2008). Concerns about psychological addiction are usually not relevant in the hospice setting. While many patients and caregivers have concerns that opioids may hasten death, the National Cancer Institute has found this not to be the case. Important considerations in overall pain management include type of pharmacologic treatment, route of administration, dosage, frequency, and adjunct treatments for breakthough pain. Table 7 summarizes these interventions. 
 

For more information see also National Cancer Institute PDQ: General Information About Cancer Pain

Table 7: Pharmacologic Treatment of Pain
Types of Analgesic
Non-opioid analgesics: Acetaminophen and non-steroidal anti-inflammatory (NSAIDs) are the first line for relief of mild pain. These drugs may not be sufficient for patients with moderate to severe pain NSAIDS have a risk of gastrointestinal injury with continued use. Non-opioid analgesics can be used in combination with other medications and non-pharmacologic therapies. They should be used sparingly in frail geriatric patients due to GI and cardiac issues. Topical NSAID creams are now available and may be a better option for these patients
Opioid analgesics: There are a wide variety of opioid analgesics (see table 1) with varying actions and routes of delivery. Opioids are widely used in hospice care because the medication dosing can be titrated relatively quickly. Opioids often have side effects such as nausea and vomiting, pruritus, cognitive impairment, and constipation. Most of these symptoms resolve over time as patients become tolerant. Constipation must always be monitored and treated. Opioids may be combined with other medications to reduce cognitive side effects.
Adjuvant medications:  Analgesics are commonly delivered in conjunction with other medications to prevent or reduce side effects.  Some medications augment the effectiveness of pain relief medications. These include antidepressants, anticonvulsants, and corticosteroids
Dose
Dosages of analgesics depend on many factors including the type and severity of pain, and previous use of analgesics. Medications themselves vary in the onset and duration of effectiveness. There are many protocols for titrating dosages to ensure patient comfort (Qaseem, 2008; AGS, 2009).
Route
Hospice personnel should consider both the medication and the route of delivery that will achieve acceptable relief and be tolerable for the patient.
Options for route of medication delivery include:
  • Oral (preferred and usually effective)
  • Rectal
  • Transdermal (patch)
  • Transmucosal
  • Sublingual
  • Intrastomal
  • Intravenous and subcutaneous
  • Epidural and intrathecal
  • Inhaled
*Avoid intramuscular administration of opioids due to painful injection site and poor absorption. In the final days of life for patients who cannot swallow, other routes may be needed

Management of other common side effects such as constipation, nausea and vomiting and reversible delirium are discussed in the Other Distressing Symptoms Section of this module.

Pain Assessment Tools
  • Verbal Descriptor Scale - This scale consists of six possible suggestions describing the intensity of pain, ranging from “no pain” to “worst possible pain”..
  • 10 Point Scale - The 10 point scale is a vertical or horizontal line numbered 0-10.  0 is labeled “no pain”, and 10 is labeled “worst possible pain.”
  • Wong-Baker FACES Pain Scale (patient visual) - used for children or limited-English speakers. Aligns the numeric rating scale with the appropriate sad/neutral/happy face.
  • verbal descriptor) - captures additional information on pain characteristics
  • The Faces Pain Scale-Revised or FPS-R The Faces Pain Scale-Revised or FPS-R (patient visual) - are recommended as two of the most validated and commonly used tools to assess for presence and intensity of pain (Hicks, 2001, Bieri, 1990)
  • Brief Pain Inventory (BPI) (verbal descriptor) - captures additional information on pain characteristics. BPI User Guide
  • FLACC for assessment for young children (patient visual) Evaluates indicators of a baby’s pain; face, legs, activity, cry and ability to console child.
  • McGill Pain Inventory Short Form (verbal descriptor) - Like type scale used to help patients report the quality and characteristics of their pain.
  • Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC ) (staff observation tool) - rates Facial Expression; Activity/body movement; Social/personality/mood and other physiological changes as evidence of pain in adults unable to verbalize pain.
  • Pain Assessment in Advanced Dementia (PAIN-AD) (staff observation tool) - rates Breathing Independent of Vocalization; Negative Vocalization; Facial Expression; Body Language; and Consolability to assess for pain in patients unable to self-report pain.
  • Pain Thermometer - Visual tool enables the patient to point to a level of pain that corresponds to temperatures on a vertical thermometer.
  • Symptom Distress Scale - This multi-symptom assessment tool asks patients to rate their symptoms on a scale of 1-5 based on descriptive information that accompanies each number. Symptoms include nausea, appetite, insomnia, pain, fatigue, bowel problems, and concentration. Rating of 1 is no problem, and 5 is maximal problem resulting from the symptom.
  • CNA Pain Assessment Tool (CPAT) – This is a review of a tool to be used by care assistance to assess pain in patients with dementia
  • Memorial Symptom Assessment Scale (MSAS) - This tool evaluates for the presence of multiple physical and psychological symptoms including pain and shortness of breath, and asks the patient to rate frequency, severity, and how much the symptoms “ distress or bother” them on a scale of 0-4.  The tool has been validated against other tools and in a variety of populations.  A short form is available.
  • Non-Communicative Patient’s Pain Assessment Instrument (NOPPAIN) - Observational assessment for non-verbal elders

Recommended Resources: National Cancer Institute PDQ Series on Cancer Treatment and management of side effects and University of Iowa GeriatricPain Website for assessment, management, and QI tools.
 

Critical Interventions to Reduce Distressing Symptoms

ElevatingHome Best Practices:
  • Hospice staff should be able to recognize the trajectory of dying in various conditions including likely symptoms, be prepared to discuss the expected path and proactively develop a plan for managing troubling symptoms with the patient and caregiver. The plan should address emergencies. 
  • Anticipation of symptoms and proactive management is based on the patient’s past history or symptoms most likely to occur with certain medical conditions. A medication profile should be developed that addresses the patient’s current meds and anticipates end of life needs. 
  • A thorough history and physical is needed to help identify etiology and guide treatment decisions (Coyne and Panke, 2011).  This should include ascertaining the severity, frequency and interventions that help or make symptoms worse.
  • Interdisciplinary teamwork is an essential ingredient in symptom management.
  • Interventions should include both pharmacologic and non-medication alternatives.  Interventions should be layered and scaled as needed to achieve patient comfort.
Table 8 summarizes interventions for terminal symptoms. Use these links to navigate to additional symptom management information and see NCI: Last Days of Life for evidence-based interventions: 

Anxiety
Anxiety is associated with restlessness or feeling keyed-up or on edge, difficulty concentrating, irritability, muscle tension and sleep disturbances.At the end of life, anxiety can be triggered in response to distressing physical symptoms such as pain or dyspnea or be a reaction to the psychological impact of dying.The goal of screening and intervention is to prevent disabling anxiety or panic attacks and ameliorate anxiety that is contributing to other symptoms such as shortness of breath.

  • A thorough history and physical is necessary to ascertain the causes or contributing factors.
  • Focus should be on physical signs, behaviors, the patient’s experience and potential causes (e.g. medications).
  • Prevent disabling anxiety or panic attacks and ameliorate anxiety that is contributing to other symptoms such as shortness of breath 
  • A thorough history and physical is necessary to ascertain the causes or contributing factors.
  • Focus should be on physical signs, behaviors, the patient’s experience and potential causes (e.g. medications).
  • Non-pharmacologic interventions include providing a soothing environment, encouraging companionship with loved ones and use of therapeutic presence.
  • Pharmacologic treatments my include antidepressants, neuroleptics and anxiolytic agents such as benzodiazepines.
  • Benzodiazepines are of value in treating anxiety and depression and in treating anxiety related to dyspnea.
  • Non-pharmacologic interventions include providing a soothing environment, encouraging companionship with loved ones and use of therapeutic presence.
  • Pharmacologic treatments my include antidepressants, neuroleptics and anxiolytic agents such as benzodiazepines.
  • Benzodiazepines are of value in treating anxiety and depression and in treating anxiety related to dyspnea.
  • Tools for Anxiety Screening and Severity Assessment:  questions are included in the ESAS and the Distress Thermometer, which asks patient to rate distress from 0 (none) to 10 (Extreme distress). Brief Symptom Inventory is a pen and paper administered scale that takes 8-10 minutes using a 5-point rating scale to quickly measure psychological symptoms.
Bowel Management: Constipation

Constipation is defined as having fewer than three bowel movements per week and is often characterized by straining, lumpy or hard stools that are difficult to expel.  Constipation occurs in 50% of hospice patients, with the incidence increasing to 70-100% in cancer patients. All patients who are on opioids are started on a bowel regimen to help prevent constipation. Constipation can be very distressing to patients and affect their quality of life.

  • Assessment starts with a thorough history and physical with specific attention to abdominal examination.
  • The clinician should ascertain the presence of bowel sounds, identify the frequency of stools, note any recent bowel changes and nausea or vomiting.
  • Preventive measures include maintaining adequate fiber in the diet, maintaining fluid intake and activity and assuring adequate time and/or privacy to defecate.
  • Evaluate drugs for their tendency to be constipating. Patients on opioids should be on a bowel regimen to prevent problems associated with constipation.
  • The Constipation Assessment Scale (CAS) can be administered in two minutes, and can differentiate between moderate and severe symptom intensity. Severe constipation can result in a complete obstruction of the colon.
  • Each individual’s treatment plan will be different and dependent upon the etiology and severity of the condition. Products that may be used include bulk, lubricant, surfactant, osmotic or combination laxatives. Stimulant and suppositories are additional alternatives.
  • A bowel regimen typically includes a stimulant laxative and a stool softener with dosage adjusted until the patient is having bowel movements regularly.
  • At the end of life it is commonly triggered by medications, especially opioids, changes in diet, immobility and diminished fluid intake.
  • See ElevatingHome Procedure Manual for specific clinical interventions.
Typical Bowel Program: The National Cancer Institute recommends the following bowel regimen offered by the MD Anderson.
  • Start one of the following regimens if the patient has not had a stool in three days or on the first day that any patient starts taking drugs associated with constipation:
    • Stool softeners (e.g., docusate sodium, one to two capsules per day). For opioid-related constipation, stool softeners may be used in combination with a stimulant laxative. Bulk-producing agents are not recommended in a regimen used to counteract the bowel effects of opioids.
    • Two tablets of a senna preparation twice daily.
    • One bisacodyl tablet at bedtime.
    • Milk of magnesia, 30 to 45 mL, if a bowel movement is not achieved in 24 hours after other methods are instituted.
  • If the amount of stool is still inadequate, increase stool softeners up to six capsules per day or a senna preparation (e.g., Senokot) gradually to a maximum of eight tablets (four tablets twice a day); bisacodyl may be increased gradually to three tablets. If the amount of stool is still inadequate, a glycerin or bisacodyl suppository or enema (phosphate/biphosphate, oil retention, or tap water) is used with caution, especially in patients with neutropenia or thrombocytopenia. Additional procedures for Bowel Programs can be found in the VNAA Clinical Procedure Manual.
Bowel Management: Diarrhea
Diarrhea is less prevalent in hospice patients than constipation, ubt it is very distressing to patients and stressful for caregivers. Effects are significant as patients suffer from skin breakdown, dehydration, fatigue and embarrassment.
  • A thorough history and physical with specific attention to medications and the character and frequency of stools should be obtained by using the National Cancer Institute Scale of Severity of Diarrhea.
  • Treatment is determined by the underlying cause.
  • Maintain hydration. A clear liquid diet is indicated and advanced as the diarrhea resolves.
  • Anti-diarrheals can be used judiciously.
  • Maintaining skin integrity and dignity are additional goals.
  • Medications that can include opioids, absorbents, adsorbents, antisecretory, anticholinergics and alpha-adrenergic agonists.
Death Rattle
Death rattle is defined as a type of noisy breathing related to retained secretions that sounds like snoring or rattling during the inspiratory and expiratory phases of respiration. It is common in dying patients and is a strong predictor of pending death.
  • There are many proposed causative factors including respiratory pathology tumor, fluid retention or aspiration, and non-expectorated saliva or bronchial secretions.
  • Non-pharmacologic interventions are the mainstay of treatment and include gentle suctioning when warranted, repositioning, and decreasing or discontinuing enteral or parenteral fluids
  • Educate caregiver members verbally and in writing about what to expect in the final hours and that death rattle in normal. Written information should be made available.
  • Use of anticholinergic medications (e.g., scopolamine, glycopyrrolate, atropine and hyoscyamine) is mixed with no conclusive evidence that these medications are helpful in its treatment.
Tools 
Delirium
Delirium is defined as acute onset of waxing and waning confusion, decreased attention span, disorganized thinking and altered level of consciousness. Clinical hallmarks may include disorientation, illusions, hallucinations, dysphasia, dysarthria or tremor.Terminal delirium is extremely common in the last days of life and is treated with supportive care.
  • Patients with a significant change in arousal level, orientation and cognitive function may be experiencing delirium. Delirium can be triggered by an underlying, non-terminal disease process, such as a urinary tract infection.
  • A thorough H&P is necessary to help pinpoint possible reversible causes. Interventions are based on the assessment and treatment of predisposing and precipitating factors such as stopping or changing medications, reversing metabolic abnormalities, treating infections and hydration.
  • Assessment is based on a comparison of the patient’s mental status to baseline. Assessment should include a thorough medication review and all non-essential drugs should be discontinued.
  • Patients with agitated or hyperactive delirium may be treated with Haloperidol. Benzodiazipines are not recommended.
  • Provide for a safe and calm environment to help minimize agitation. Other non-pharmacologic treatments include; a quiet room, soft music (if this helps the patient) gentle reorientation, and other relaxation or comfort measures. 
  • See Resources section for tools to assess delirium
Depression
Depression is a mood disorder that is clinically manifest as diminished interest/pleasure, depressed mood, loss of pleasure in almost all activities. There may be lack of interest in eating, sleep disturbance, psychomotor agitation or retardation, fatigue or loss of energy, feelings of worthlessness, diminished ability to think or concentrate, recurrent thoughts of death or suicide. Depression occurs in 25-75% of those at the end of life. 
  • Patients should be regularly screened for depression.
  • There are two classic questions to ask the patient (1) “In the past month, have you felt depressed, down or hopeless?” and (2) “During the past month, have you felt little interest or pleasure in doing things?”
  • Suicide assessment may be indicated for individuals with suicidal ideations or tendencies.
  • A multi-symptom assessment tool that includes assessments of well-being and depression should be used. A thorough assessment includes physical changes such as loss of appetite, weight loss, situational factors, and medications.
  • Interventions include psychotherapy, grief counseling, life review as well as caregiver support, spiritual support, or relaxation techniques.
  • Longer-term interventions include education, cognitive and non-cognitive behavioral therapy and individual/group support.
  • Antidepressants are the primary medications used to treat depression and should be discussed with the patient's treating clinician. In the final days/hours additional medications are likely not indicated.
Fatigue
Fatigue is the patient experience of overwhelming exhaustion and tiredness and is reported in up to 90 percent of patients at the end of life. Fatigue may arise from medical treatment or psychological conditions, such as depression. Education and supportive counseling are essential.
  • Fatigue assessment of the whole person is essential: mind, body and spirit.
  • Management strategies include management of symptoms and underlying causes that contribute to fatigue such as anemia, infection, anxiety, depression, sleep disorders and emotional stress.
  • Energy conservation techniques and rest are the mainstay of non-pharmacologic management. Hospice personnel can counsel patients and caregivers to help prevent fatigue by balancing activities with rest.
  • Possible pharmacologic interventions include antidepressants, corticosteroids, psycho stimulants and medical treatments such as blood products based on the goals of care and medical condition.
  • During the final hours, fatigue and weakness are expected as a normal part of the transition and is irreversible; this fatigue is treated with supportive care.
  • For a patient expected to be in hospice care relatively long term, treatment can be offered to address underlying causes such an anxiety, depression, heart failure or anemia.
Hemorrhage
Hemorrhage is signified by heavy or excessive bleeding. Hemorrhage is a relatively rare occurrence in hospice care according to the National Institutes of Health, but if it occurs may be uncontrolled and not reversible at the end of life. Hemorrhage it is more likely to occur with head and neck cancers, stomach and esophageal cancer, and leukemia or clotting disorders. It is very upsetting to patients and caregivers so should be anticipated based on the patient’s diagnosis.
  • If bleeding is anticipated, it is important to prepare the caregiver and plan to follow the patient’s wishes about interventions.
  • If the patient is at risk for terminal hemorrhage, discuss alternative care settings as caregivers may seek inpatient hospice services rather than home based care.
  • Seepage of blood from eroded areas may signify an impending hemorrhage, but more often, hemorrhage is sudden.
  • Caregiver and caregiver education is crucial because of the distressing nature of heavy bleeding.
  • Keep the patient clean; use dark colored towels or pad to minimize appearance of blood.
  • Keep non-sterile gloves in the home to use if you need to clean up after any bleeding episodes.
  • Provide companionship, empathetic listening and therapeutic presence.
  • Provide non-pharmacologic measures such as breathing, mindfulness or other stress reducing techniques.
  • Medications should be present in the home that can provide sedation, anxiety relief and pain relief. Fast acting sedation may be used in the event of terminal hemorrhage.
Nausea and Vomiting
Nausea is the very unpleasant feeling of being about to vomit. Nausea is present in 70% and vomiting in 30% of patients at the end of life. It is one of the most distressing symptoms in advanced disease and can occur in patients with any terminal condition. Underlying causes of nausea include physiological, metabolic, CNS, psychological, disease related or treatment related.
  • Complete a thorough history and physical with primary attention to an abdominal assessment and identification of potential contributory factors such as dehydration, new medications, constipation or infection.
  • Identify factors that trigger nausea and vomiting, frequency of symptoms and characteristics of emesis.
  • Treat the underlying cause of nausea.
  • Non-pharmacologic interventions include relaxation techniques, music and attention to what foods may be causing nausea.
  • Depending on the underlying cause, many medications are available.  These include anticholinergics, antihistamines, steroids, prokinetic agents, benzodiazepines, 5-HT3 receptor antagonists and neurokinin-1 receptor antagonists.
Wounds
Wounds are open disruptions in skin integrity. Some patients enter hospice with existing wounds. Others may acquire wounds such as pressure ulcers, which result from immobility, poor nutrition and poor perfusion. Pressure ulcers occur in 14-28% of hospice patients while malignant or fungating wounds occurring in up to 20% of patients with metastatic disease.
  • Assessment should include identification of all wound locations, etiology, pressure ulcer stages and risk factors. Evaluate the existence of pain, infection, odor, and moisture due to incontinence.
  • Goals of care should be discussed with the patient and caregiver to help determine what interventions are needed.
  • Goals typically include promote comfort including measures to reduce pain associated with the wound or wound care; promote healing; prevent odors; and promote dignity due to the appearance of the wound or wound care.
  • Depending on treatment preferences, antibiotics are a consideration when an infection is present.
  • Occlusive or layered dressings may be used to prevent seepage or odors. Frequent changing of bandages by the caregiver may improve the appearance of wounds.
  • Oxymetazaline or epinephrine are recommended for vasoconstriction of bleeding wounds.
  • Metronidazole can be used topically in a compress gel or cream to reduce odor (Graves, 2013).
  • Patients or their caregivers may choose not to prioritize prevention of pressure wounds in patients with extreme pain when moved.  In the patient’s final days or hours, it may be a treatment preference not to routinely reposition the patient.
  • See also Blueprint for Excellence Module on Preventing and Managing Pressure Ulcers
Tools For Assessing End of Life Symptoms - See Resources for other screening and management tools
  • The National Comprehensive Cancer Network® (NCCN®) Distress Thermometer*– asks patient to rate distress from 0 (none) to 10 (Extreme distress) 
  • Edmonton Symptom Assessment Tool (ESAS) - This is a multi-symptom assessment tool used to evaluate for the presence and severity of several symptoms including dyspnea.
Death Rattle
  • Respiratory Distress Observation Scale (RDOS) (Campbell, 2010) – This is an adult observational scale that evaluates indicators of respiratory distress including heart rate, respiratory rate, restlessness, accessory muscle use and other indicators. It has been validated for use by trained caregivers, but not yet for use by caregiver members.
  • Recommendations for Death Rattle – includes the Death Rattle Intensity Scale
Delirium
  • Memorial Delirium Assessment (MDAS) is used to rate the severity of delirium- a brief reliable tool for assessing delirium severity among medically ill populations that can be reliably scored by multiple raters.
Depression
  • Geriatric Depression Scale- a basic screening measure for depression in older adults.
Fatigue
  • ESAS – Edmonton Symptom Assessment Tool is a multi-symptom assessment tool used to evaluate for the presence and severity of several symptoms including dyspnea.
Wounds
  • The Braden Scale- A widely used tool to predict the risk of pressure ulcers. Six criteria are examined: Sensory perception; Moisture; Activity; Mobility; Nutrition; and Friction and Shear.
Table 8: Non-Pharmacological Intervention for Terminal Symptoms 
 Environment:
 
  • Provide a calming environment based on the patient’s perception of calm.
  • Try temperature or lighting changes, providing music or controlling the number visitors in the room.
 Fan:
 
  • Many patients benefit from a fan blowing air at the face.
  • A wet cloth on the face in addition to the fan stimulates the trigeminal nerve and may provide the sensation of better ability to breath.
 Mindful Breathing:
  • Patients with COPD often feel some relief with pursed lip breathing.
  • Dyspnea generally is not relieved by breathing techniques when the patient has failing pulmonary function due to terminal COPD or in active dying phase.
  • Although there is not strong evidence for it, some patients benefit from “pacing” their breathing to synchronize with controlled breathing of a loved one or provider who is acting as a model or coach.
 Oxygen:
  • Oxygen should be provided in the method or flow that achieves comfort for the patient, although oxygen is considered not to relieve dyspnea.
  • Oxygen delivery mode – mask, cannula or tent - should also reflect the patient’s wishes.
  • Humidified oxygen may prevent dry mouth.
  • Oxygen is not beneficial for patients near death except where it is reported or observed to decrease patient distress.
  • Oxygen saturation levels of the blood and oximetry monitoring may predict respiratory distress but do not signify distress; some patients display respiratory comfort even in the face of profound hypoxemia.
 Try Positioning and Comfort: 
  • Many patients are more comfortable upright or in “tripod” sitting position (leaning against a table).
  • Many patients experience a dry mouth or lips – olive oil or swabs may help with relief.
 Reduce Anxiety: 
 
  • Dyspnea can make the patient anxious and fearful.  The increased muscle tension increases oxygen consumption that exacerbates the breathlessness.
  • The first line approach is to reduce dyspnea, which reduces anxiety.
  • If the patient remains anxious, she/he may be offered relaxation techniques and medications for the anxiety, in addition to medications specifically targeted to dyspnea and identified here.
  Reviewed September, 2019