Nearly 1 of every 4 deaths in the United States occurs in a long-term care setting. These deaths are associated with brief lengths of stay, high rates of burdensome treatments and hospitalization, underuse of effective symptom management therapies, and low utilization of hospice and palliative care services. There are numerous challenges to improving end-of-life care in long-term care, including a high prevalence of comorbid conditions among residents, which complicates any diagnostic or therapeutic management plan. Alzheimer disease and other progressive neurodegenerative conditions are common, limiting the ability for residents to report symptoms and making it difficult for health care providers to assess for them. Prognostic ambiguity and poor communication between physicians, staff and family members can delay the transition from a restorative approach to care to one focused on comfort and quality of life. A lack of physician or midlevel providers, and limitations to timely diagnostic testing, increase the odds that residents will be transferred to an acute care facility instead of being managed in the resident’s current setting. Additionally, high staff turnover decreases the effectiveness of palliative care training among nursing home staff and has been associated with lower quality of care.
The assessment of pain in older adults begins with patient report. Patient report is the “gold standard” for assessment and should be attempted in all patients independent of cognitive status, as those with moderate to severe dementia may be able to communicate the presence and severity of pain. However, self-report alone is often insufficient for in individuals with cognitive impairment. It is, therefore, important to use a combination of patient report, caregiver report and direct observation of the patient to inform a clinical assessment. Verbal descriptor scales, the pain thermometer, or Faces Pain Scales can be used as alternatives to verbal numeric rating scales or visual analogue scales, which may be difficult to use for individuals with diminished cognitive status. Observational signs of distress may include changes in facial expressions, vocalizations, body movements, social interactions, activity patterns, and mental status. Several observational scales have been developed to assess for pain, including the Pain Assessment in Advanced Dementia (PAINAD) and the Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC).
The choice of an analgesic medication should be made based on the severity of pain, previous responses to analgesic medications, possible interactions of the analgesic with comorbid conditions or other medications, care setting and support services. Acetaminophen should be considered the first line of therapy for mild pain, although care should be taken not to exceed a total daily dose of 3 g in most older adults. Acetaminophen should also be considered with new dementia-related behavior changes even when the presence of pain is uncertain, as there is evidence that its use may decrease these behaviors, as well as improve activity levels and social engagement. Nonsteroidal antiinflammatory drugs (NSAIDs) should generally be used with caution in older adults because of the high risk of side effects, such as renal failure, gastrointestinal irritation, and worsening heart failure.
Opioids are primarily used for moderate to severe pain, although nonopioid therapies, such as corticosteroids, antiepileptics, antidepressants, and topical agents, such as capsaicin and lidocaine patches, remain important adjunct therapies to control pain. Table 11–1 lists commonly used opioids, with estimated conversions when going from one drug, or route of administration, to another. One opioid that should be avoided for all older adults is meperidine, as its metabolites often lead to neuroexcitatory adverse effects such as delirium. In addition, morphine and codeine should be avoided with patients who have a history of renal insufficiency. Long-acting opioids, such as extended-release morphine or transdermal fentanyl patches, are useful when pain is persistent to ensure continuous pain relief throughout the day, with an additional short-acting immediate-release opioid to provide as-needed breakthrough pain relief. An effective and safe dose for a breakthrough opioid is approximately 10% of the total 24-hour standing dose.
Table 11–1.Common opioids and equivalent potency conversions. ||Download (.pdf) Table 11–1. Common opioids and equivalent potency conversions.
Health care providers are often hesitant to use opioids in older adults because of a concern that they may exacerbate comorbid illnesses or precipitate adverse effects such as delirium. However, there is good evidence that undertreatment of pain is a greater risk factor for the development of delirium than the use of opioids. In long-term care settings in particular, the undertreatment of pain is of serious concern. This is partly because when orders are written for “PRN” (as needed) pain medications, they are rarely given—not even when there is evidence of patient discomfort. Clinicians should be especially specific when drafting orders for patients in long-term care. For example, to evaluate and treat breakthrough pain, an order might state: “Observe patient every 2 hours. If patient exhibits behaviors consistent with physical discomfort (eg, grimacing, guarding, moaning), administer morphine 5 mg oral solution.” or “Ask patient to rate pain every 2 hours. If patient reports a pain level of 5 or higher on a 0 to 10 scale, administer 5 mg of oral morphine.” If opioids are prescribed, constipation should be aggressively managed with a stimulant laxative, such as senna. Methylnaltrexone, a multireceptor antagonist that does not effectively cross the blood–brain barrier, can be given subcutaneously as a second-line agent to reverse refractory opioid-induced constipation. (See Chapter 54, “Managing Persistent Pain in Older Adults,” for more detailed approaches to chronic pain management in the older adult.)
Dyspnea is a common symptom among older palliative care patients, particularly those with chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF), end-stage pulmonary disease, and lung cancer. Dyspnea is characterized by rapid, labored, or shallow breathing—and may be underdiagnosed and undertreated because of the patient’s diminished capacity to communicate during advanced illness. Use of the Visual Numeric Scale or the Modified Borg Scale may facilitate assessment and assist with monitoring treatment efficacy.
Treatment focused on the underlying cause of dyspnea is preferred if it is consistent with the resident’s goals of care. This may include antibiotics for pneumonia or furosemide for a heart failure exacerbation. There is an increase in the body of evidence supporting use of opioids to relieve the sensation of breathlessness. In opioid-naive patients, it is recommended that clinicians start at low doses of opioids (ie, 2 mg of immediate-release oral morphine) and titrate up as needed to achieve adequate symptom control. Supplemental oxygen often provides significant relief of dyspnea for individuals who are hypoxemic, although there does not seem to be similar benefit in nonhypoxic individuals with life-limiting illness.
Simple environmental changes may help patients breathe easier. For example, directing a bedside fan toward the patient’s face and elevating the head of the bed can relieve feelings of breathlessness. Clinicians should note that lengthy discussions with the patient may exacerbate breathlessness. Close-ended questions, providing a nonverbal means of communication (eg, pen and paper), or relying on proxy informants can help reduce the burden of prolonged patient interviews. Shortness of breath may also be linked to anxiety or spiritual distress thus warranting judicious involvement of the interdisciplinary team.
Nausea and vomiting are prevalent symptoms near the end of life, and may result from both disease processes and iatrogenic adverse effects. Identifying the likely cause of nausea is critical to developing an effective therapy. Medication and constipation-induced nausea should always be considered as possible contributors to nausea. Medications commonly associated with nausea in older populations include opioids, antibiotics, antineoplastic agents, vitamins (zinc, iron), and acetylcholinesterase inhibitors. Antiemetic medications can deliver symptomatic relief for nausea. Different antiemetic medications can be used to target specific neurotransmitters to effectively treat common cause of nausea and vomiting (Table 11–2).
Table 11–2.Common causes of nausea and their pharmacologic treatments. ||Download (.pdf) Table 11–2. Common causes of nausea and their pharmacologic treatments.
The approach to delirium for patients with a life-limiting illness is similar to the approach for those who are not at the end of life. However, diagnostic tests and subsequent interventions need to be tailored to an individual’s preferences and goals for care. The assessment of delirium at the end of life should focus on consideration of reversible causes, such as pain, adverse medication effect, urine retention, or fecal impaction. Nonpharmacologic strategies to prevent delirium remain important, including frequent reorientation, promoting daytime activity and a quiet nighttime environment, and avoidance agents that may precipitate delirium, including anticholinergic medications. Small doses of antipsychotics (eg, haloperidol 0.5 mg) are often effective in decreasing agitation at the end of life. Treatment using benzodiazepines is less effective as they may cause worsening agitation in some individuals.
Patients receiving palliative care may exhibit signs of grief or depression; however, it can be difficult to differentiate between the two. Grief is an adaptive, universal, and highly personalized emotional response to the multiple losses that occur at the end of life. This response is often intense early on after a loss, but the impact of grief on daily life generally decreases over time without clinical intervention. Major depression, however, is neither universal nor adaptive, although it is common among persons with advanced illness. Feelings of pervasive hopelessness, helplessness, worthlessness, guilt, lack of pleasure, and suicidal ideation are key in distinguishing depression from grief. Both cognitive therapy and antidepressant medications are effective treatments in reducing distressing symptoms and improving quality of life for those with depression. Clinicians may also consider psychostimulants, such as methylphenidate, for those depressed patients with a prognosis of only days to weeks.
Fatigue is both underrecognized and poorly treated by physicians and yet it is considered the most distressing symptom among patients other than pain. Assessment is focused on identifying correctable causes and determining the impact of fatigue on patients and their family members. Common causes include direct effects from the advanced illness and/or its treatments, anemia, hypoxemia, deconditioning, sedating medications, psychological issues including depression. Trials of moderate exercise have demonstrated significant benefits in patients with cancer. Improvements have been shown to include less fatigue, decreased sleep disturbance, improved functional capacity, and better quality of life. The psychostimulant methylphenidate has some evidence for its effectiveness to treat fatigue in advance illness, although trials have been small. Nondrug treatments, such as prioritizing one’s activities, may also be of benefit.
Hospice care for individuals with advanced dementia improves patient and caregiver outcomes, including better symptom management, fewer unmet needs, decreased hospitalizations during the last 30 days of life, and higher caregiver satisfaction with end-of-life care, compared to those receiving usual care. Unfortunately, hospice is underutilized in advanced dementia, in part because of the difficulty of predicting death within 6 months using current hospice eligibility criteria. Hospice should at least be considered for any nursing home patient with advanced dementia who develops a pneumonia, febrile episode, or eating problem, as these are markers of a poor 6-month prognosis (see Chapter 3, “Goals of Care & Consideration of Prognosis,” for more information).
Many individuals with advanced dementia will develop feeding and eating difficulties. Unfortunately, patient preferences regarding artificial nutrition and hydration are often not documented until it is too late in the disease to have the discussion. Family members are then faced with the decision to administer food and fluids via a percutaneous endoscopic gastrostomy (PEG) tube, often during a hospitalization for pneumonia. There is no evidence that PEG tubes improve survival, prevent aspiration pneumonia, decrease the risk for pressure ulcers, improve patient comfort, or prolong life. Significant harms are associated with use of PEG tubes in advanced dementia including the likelihood of less caregiver contact during the mealtime and high rates of physical and chemical restraint use to prevent the feeding tube displacement. Alternatives to PEG placement include careful hand feeding and proper oral care. Patients who are imminently dying may require little to no intake in the final days of life.