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Delirium: Opportunity for Comfort in Palliative Care

Close, Jacqueline F. PhD, RN, GCNS-BC, FNGNA; Long, Carol O. PhD, RN, FPCN

Journal of Hospice & Palliative Nursing: August 2012 - Volume 14 - Issue 6 - p 386–394
doi: 10.1097/NJH.0b013e31825d2b0a
Research and Practice: Partners in Care Series

Delirium is a very common neuropsychiatric disorder seen in the very ill and at the end of life and is distressing to patients, families, and caregivers. Although common, delirium is frequently misdiagnosed and poorly managed. Too often, patients are merely labeled as confused or agitated. This lack of recognition, assessment, and treatment can lead to poor outcomes, including functional decline, new nursing home placement, and even death. Prompt assessment, prevention, and both pharmacologic and nonpharmacologic intervention by nurses and the interdisciplinary team can significantly reduce distress, assure comfort, and maximize safety in all care settings.

Jacqueline F. Close, PhD, RN, GCNS-BC, FNGNA, is District Clinical Nurse Specialist for Geriatrics, Palomar Pomerado Health, San Diego, CA.

Carol O. Long, PhD, RN, FPCN, is Geriatric Consultant and Codirector, Palliative Care for Advanced Dementia, Beatitudes Campus, Phoenix, AZ.

Address correspondence to Jacqueline F. Close, PhD, RN, GCNS-BC, FNGNA, Palomar Health, 15255 Innovation Dr, San Diego, CA 92129 (Jacqueline.close@pph.org).

The authors have no conflict of interest to disclose.

Delirium, or acute confusion, is a very common, serious, and potentially preventable neuropsychiatric disorder that may occur in the very ill and at the end of life as part of the dying process. Patients are often labeled as confused or agitated, and no further assessment or evaluation is done. Delirium frightens patients and families and also robs patients of valuable time to spend with loved ones. Patients remember their episode(s) of delirium as very distressing, and delirium is a negative experience for family members, caregivers, and professional nurses alike.1 Delirium is associated with emotional distress, as patients with delirium are often anxious, angry, or depressed. Pain is much more difficult to treat in patients with delirium, and those with hyperactive delirium are at risk for falls and other types of injuries.2 Delirium also interferes with the patient’s ability to make choices about their care.3 Delirium is one of the major contributors to poor health outcomes and often results in the institutionalization of older adult patients.2

The purpose of this article is to provide an overview of delirium, the prevalence, key features, risk factors, subtypes, pathophysiology, assessment, and evidence-based nursing interventions, both pharmacologic and nonpharmacologic. A case study illustrates the challenges and opportunities in caring for hospitalized patients with delirium who may require palliative care. While this article provides a general overview of delirium in the acute care setting, delirium can occur anywhere in the continuum of care, including the home, skilled nursing, outpatient settings, or hospice settings.

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CASE STUDY: PART 1

You are the nurse assigned to Mrs Smith and have taken care of her for the 3 days. Mrs Smith is an 88-year-old woman with end-stage heart failure and has a history of type II diabetes mellitus, osteoarthritis, numerous urinary tract infections, and uncontrolled hypertension. She had been hospitalized four times over the past year for exacerbations of heart failure. She recently fell at home, fracturing her right hip, and underwent surgery torepair her hip. Two days postoperation, she became disoriented and frightened and would not follow nursing instructions. She periodically lashed out at her caregivers and did not recognize her husband of 65 years. She knew what year it was but could not tell where she was or how she got there. She needed constant reminders to stay in bed while she insisted on going to the bathroom (she still had an indwelling bladder catheter). Mrs Smith was awake most of the day and half of the night, vacillating between agitation and lethargy and not quite understanding why everyone was making her do things that hurt. She received pain medication around-the-clock and was able to report her pain levels when asked about them. She could not hear (her husband took her bilateral hearing aids home because he did not want her to lose them), and her eyeglasses were lost in the emergency department. She was unable to report her inability to hear or see well without her hearing aids and glasses.

On day 3 postoperation, Mrs Smith was exhausted and could not assist with her personal care. Her husband came to visit and tried to wake her, but she just opened her eyes and stared blankly at him. She had not used her incentive spirometer since early postoperation because it was on the floor under her bed, where it fell when she was looking for her glasses. Her husband was upset that his wife was not “herself” and he could not understand what was happening. Nurses complained that Mrs Smith was too hard to care for and that she must have “dementia.”

Mrs Smith did not want aggressive treatment while hospitalized other than surgery for her hip fracture. She had gone through many hospitalizations and she told the nurses repeatedly that she “was tired of going to the hospital and being so sick,” stating that she just wanted to go back home, surrounded by family and friends.

You suggest that she may have delirium because of her age, surgery, many comorbidities, and hearing and vision problems. The geriatrics educator trained in gerontology is contacted to hold an in-service on delirium.

During the impromptu staff in-service, the educator explains that the identification of delirium remains a clinical diagnosis, based on bedside observation of the patient and information from families and caregivers. According to Inouye et al,4 the diagnosis of delirium should be based on careful bedside monitoring of the four key features of delirium, which include (1) acute onset and fluctuating course, (2) inattention, (3) disorganized thinking, and (4) altered level of consciousness.5 In practice, primary care providers often fail to detect symptoms of delirium, with studies reporting that symptoms are documented in only 30% to 50% of affected patients.6 The fluctuating symptoms that characterize delirium make it hard to detect, especially when primary care providers spend only brief intervals of time with patients. Nurses, on the other hand, spend more time at the bedside and therefore have the opportunity to anticipate, assess, and treat symptoms of delirium across all healthcare settings.

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BACKGROUND

Prevalence and Incidence

The risk of developing delirium is positively associated with age, frailty, and the number of chronic and acute medical problems. In studies on delirium in hospital settings, the prevalence and incidence rates of delirium differ in the published literature. Delirium has been reported to be present in 14% to 24% of new admissions to the hospital. The incidence of new cases of delirium has been shown to be from 6% to 56% in hospitalized patients.7 In a 2003 study by Agnostini and Inouye,8 15% to 53% of older postoperative adults were diagnosed with delirium. In another study of patients in an intensive care unit, 70% to 87% of patients were diagnosed with delirium.9 Delirium also has been found in 51% to 85% of post–acute care admissions.10 Patients with dementia or any cognitive impairment have a very high incidence of delirium superimposed on dementia, ranging from 22% to 89%.11

Delirium is the most common complication experienced by patients with advanced illness, occurring in up to 85% of patients in the last weeks of life.12 Delirium is also very common in hospitalized patients, occurring in 26% to 44% of patients with late-stage cancer and up to 88% of patients with terminal illness.13 Fang et al14 speculate that the prevalence of delirium in cancer patients is from 11% to 35%, and in terminal cancer patients, the prevalence may be as high as 85%. In palliative care units, the probability of developing delirium can be as high as 88%.15

“Terminal restlessness,” “nearing or near death awareness,” and “terminal anguish” characterize delirium as “a clinical spectrum of unsettled behaviors in the final days of life.”16 (p345) Despite the fact that delirium is common in older, very ill patients and as part of the dying process, nurses can provide significant interventions to reduce distress and provide comfort to the patient and family. Delirium in people who are terminally ill includes the detection and elimination of the underlying cause (when possible) and nonpharmacologic and pharmacologic treatments. Patient and family education and reassurance are paramount to easing anxiety and providing for a therapeutic environment.

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Risk Factors

There are numerous risk factors for developing delirium. These include predisposing risk factors and precipitating risk factors.

Predisposing risk factors for delirium are risk factors present before the patient becomes ill that may affect a patient’s vulnerability for developing delirium. Some of these predisposing risk factors include advancing age, preexisting cognitive impairment, severity of illness, depression, vision or hearing impairment, and functional impairment.17 Other literature describes all of the same predisposing risk factors but also includes male sex, depression, alcohol abuse, abnormal serum sodium level, and vision and hearing impairment.17-19 Inouye7 lists the top predisposing factors for developing delirium as (1) baseline cognitive impairment or dementia, (2) severe underlying illness and comorbidity, (3) functional impairment, and (4) advanced age.

Precipitating risk factors precede the development of delirium and are any noxious insults or events that happen during an illness regardless of the setting. These risk factors may include medication errors, immobilization, dehydration, malnutrition, iatrogenic events, medical illnesses, infections, metabolic abnormalities, alcohol or drug withdrawal, environmental or psychosocial factors, and the use of indwelling bladder catheters or physical restraints.7 Sleep deprivation, fecal impaction, and urinary retention are frequent causes for delirium at the end of life.

Delirium is very common in patients with advanced cancer and may involve multiple physiological causes such as infection, end-stage organ failure, and adverse medication events, and in some cases, it is caused by paraneoplastic syndromes.20 In patients with cancer, delirium may develop from structural or metabolic problems and complicates the assessment and management of pain, dyspnea, nausea, anxiety, and other symptoms.20,21

The onset of delirium is acute in most cases, and the cardinal clinical symptoms include difficulty sustaining attention, a fluctuating course, cognitive changes, and altered level of consciousness.22 The patient is unable to maintain attention for any period of time, and he/she may be disoriented to time and place. Perception disorders, hallucinations, identification mistakes, and distortion in the size of objects are frequently noted.

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Subtypes of Delirium

Delirium can manifest itself in three different subtypes: hyperactive, hypoactive, and mixed delirium. Mixed delirium includes elements of hyperactive delirium and hypoactive delirium.

Hyperactive delirium is characterized by agitation, hypervigilance, restlessness, emotional instability, hallucinations, and delusions. Patients with hyperactive delirium exhibit behaviors most commonly recognized as delirium, and these behaviors include psychomotor hyperactivity and excitability. These patients are easily identified by several associated behaviors, such as fast or loud speech, irritability, combativeness, impatience, swearing, singing, laughing, uncooperativeness, euphoria, anger, wandering, distractibility, and nightmares.23

Hypoactive delirium is characterized by withdrawal, flat affect, apathy, lethargy, reduced alertness, and decreased responsiveness. The patient may be somnolent and exhibit reduced psychomotor activity such as unawareness, decreased alertness, sparse or slow speech, slowed movements, staring, and apathy. This is the “quiet” patient for whom the diagnosis is often missed.23 Patients with hypoactive delirium are often misdiagnosed as demented or depressed, and at the end of life, hypoactive delirium not only can be mistaken for depression but is also difficult to differentiate from opioid sedation.24

In palliative care settings, hypoactive delirium can be misdiagnosed as depression or fatigue, particularly if a formal assessment is not completed. Using valid and reliable screening tools for palliative care patients can assist in diagnosing and differentiating delirium, especially when hypoactive delirium might otherwise go unrecognized.25

The third type of delirium is mixed delirium and involves fluctuations between hyperactive and hypoactive behaviors. Mixed delirium is very difficult to diagnose because of the changing presentation of the patient, who alternates between a hyperalert and a hypoalert state. An astute assessment and evaluation will capture the mixed type of delirium, but this may go unnoticed because of the fluctuations between the two states.

Regardless of the type of delirium the patient is experiencing, it is imperative that delirium is prevented, if possible, recognized, assessed, documented, and treated to lessen the negative outcomes resulting from this syndrome. The associated poor outcomes of delirium are very distressing to the patient and family members as well as healthcare professionals, and nursing support is vital to both the patient and family to lessen fears and anxiety.

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Challenges

Delirium has a negative impact on patient outcomes. It is associated with emotional distress, as people with delirium are often anxious, angry, or depressed. Pain is much more difficult to treat in patients with delirium, and patients with hyperactive delirium are at risk for falls and other types of injuries.2 In addition, outcomes of patients diagnosed with delirium during hospitalization include an increased incidence of functional decline, new nursing home placement, and even death.26 Studies indicate that delirium was associated with increased mortality at hospital discharge and at 12 months postdischarge.27 Delirium was also associated with poor functional status among patients with and without dementia.28 Healthcare costs of patients with delirium are more than 2½ times the costs of patients without delirium, and the added financial burden can run from $16,303 to $64,421 per person.29

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Clinical Assessment

The identification of delirium remains a clinical diagnosis, based on bedside observation of the patient and information from families and caregivers. According to Inouye et al,4 the diagnosis of delirium should be based on careful bedside monitoring of the four key features of delirium, which include (1) acute onset and fluctuating course, (2) inattention, (3) disorganized thinking, and (4) altered level of consciousness. Many healthcare providers consider delirium a common and serious problem, yet few monitor for this condition, and most admit that it is underdiagnosed.30 Fluctuating symptoms make delirium hard to detect, especially when primary care providers spend only brief intervals of time with patients. Nurses, on the other hand, spend more time at the bedside and could therefore assess for and treat symptoms of delirium across healthcare settings.

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Pathophysiology

The pathophysiology of delirium is not completely understood, and the proposed causes for delirium are numerous (Table 1). It has been suggested in the literature that delirium may be a disturbance in cerebral oxygenation, a disturbance in neurotransmission, a disturbance in cytokine production, or a disturbance in plasma esterase activity.31,32 Patients receiving palliative and end-of-life care are particularly vulnerable for developing delirium.

TABLE 1

TABLE 1

Delirium can be caused by many different metabolic or ischemic insults to the brain, such as hypoxemia, hypercapnia, hypoglycemia, or any major organ dysfunction. Trauma, infection, surgery, or any other physical insult to the body can lead to increased production of proinflammatory cytokines that, in susceptible patients, induces delirium.32 Peripherally secreted cytokines can intensify responses in the microglia (phagocytes that clean up waste products from the nervous system) that in turn cause severe inflammation of the brain.32 Proinflammatory cytokine levels have been shown to be elevated in patients with delirium.33

The Predictive Model of Delirium explains delirium as the relationship between the vulnerability (predisposing risk factors) of the hospitalized older adult and noxious insults during (precipitating factors) hospitalization. This relationship can contribute to the development of delirium.7 This model considers the development of delirium related to baseline patient vulnerability and precipitating factors or noxious insults occurring during hospitalization. Noxious insults are untoward negative incidents occurring to a patient while the patient is hospitalized, such as a urinary tract infection directly related to the presence of an indwelling urinary catheter or a patient fall sustained during an episode of hyperactive delirium. Highly vulnerable patients (those who have several risk factors) may experience an episode of delirium with few noxious insults. On the other hand, patients with low vulnerability (few risk factors) may need to experience several noxious insults to trigger an episode of delirium.7

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Assessment and Measurement Tools

Screening Instruments

Screening instruments identify the presence of cognitive impairment but do not diagnose delirium.34 The Mini-Mental State Examination is used to evaluate cognitive changes and assesses orientation, instantaneous recall, short-term memory, attention, constructional capacities, and use of language.35 The NEECHAM Confusion Scale is used for a rapid assessment as well as monitoring of acute confusion in hospitalized older individuals.36 The Delirium Observation Screening Scale is an assessment tool designed to assist nurses in the early recognition of delirium during regular care and is based on the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV), criteria for delirium.37 The Nursing Delirium Screening Scale is an observational five-item instrument designed to be completed in 1 minute and is a simple, yet accurate, continuous, “around-the-clock symptom monitoring.”38 (p373) The tool of choice should be the one best suited for the patient population being screened.

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Diagnostic Instruments

Diagnostic instruments are an adjunct to clinical and cognitive evaluation and help in diagnosing delirium.39 The Confusion Assessment Method (CAM) is a diagnostic tool designed for use by a nonpsychiatrically trained interviewer to identify and recognize delirium quickly and accurately both at the bedside and in research settings.5 The CAM is used as the primary tool to screen residents in nursing homes.40 The Delirium Rating Scale-Revised-98 is used both as a diagnostic and severity-based instrument based on the DSM-IV and common symptoms found in delirious patients. This is used to rate the severity of delirium over time and differentiates patients with delirium from patients with dementia, schizophrenia, and depression.41,42

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Severity of Symptom Instruments

These scales are used to rate the severity of the symptoms of delirium. The Memorial Delirium Assessment Scale (MDAS) is a brief, reliable tool for assessing delirium severity among medically ill, adult patients and can be accurately scored by multiple raters. The MDAS is highly correlated with existing measures of delirium and cognitive impairment.42 The Bedside Confusion Scale (BCS) is used for continuous observation of an alteration in attention, with or without a change in level of consciousness. The BCS is designed for the palliative medicine population, requires minimal training, and takes approximately 2 minutes to complete.43 The Delirium Index measures the severity of symptoms of delirium and is based on observation of the patient, without additional information from informants.44 (For additional details on the psychometric properties of each instrument, consult the detailed reference list at the end of this article). Table 2 describes the assessment tools used in screening, diagnosing, and determining the severity of delirium.

TABLE 2

TABLE 2

Delirium is very common at the end of life, but if assessed and identified early, interventions may be put in place to lessen the symptoms and ensure the patient’s comfort along with patient and family well-being. The most important approach to treatment of delirium is to reverse underlying causes if possible, and in palliative care, the goals of treatment for delirium are balanced with a caring approach, providing a safe environment, and avoiding uncomfortable interventions. Addressing only one of the factors contributing to the delirium is not likely to help improve the delirium. However, a multifactorial intervention strategy that addresses as many predisposing and precipitating factors as possible supports positive nursing care.

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CASE STUDY: PART 2

On day 4, Nancy, Mrs Smith’s daughter, came to visit after her father had called her to express his deep concern and worry about his wife’s condition. The nursing staff was very adept at using the CAM to assess for delirium, and Mrs Smith was positive on the first assessment and continued to score positively for the next three assessments, done 8 hours apart. Nancy works with the older adult population in a hospital and immediately suspected that her mother was experiencing delirium. The primary care nurse talked at length with Nancy about the numerous predisposing risk factors that made her mother vulnerable to delirium, including advanced age, severity of illness, and comorbidities such as heart failure, diabetes, osteoarthritis, a history of urinary tract infections, hypertension, and diminished vision and hearing. Since her admission, Mrs Smith also had several precipitating risk factors for delirium, including numerous medications, immobilization, dehydration, malnutrition, an indwelling bladder catheter (risk for urinary tract infection), and sleep deprivation.

The nurse and Nancy discussed the numerous risk factors, and together, they developed a comprehensive plan of care. The care plan included safety measures to minimize the risk of falling, the discontinuation of the indwelling bladder catheter after a sample was sent for urinalysis, the continuous evaluation of the effectiveness and side effects of her pain medications, and respiratory treatments, including assistance in using the incentive spirometer. A chest x-ray was ordered, which revealed atelectasis in both lower lobes and consolidation on the left. Antibiotics were started because she had developed a urinary tract infection in addition to pneumonia. Nancy decided to stay with her mother in her hospital room to provide a familiar presence because that would help keep her mother calm and oriented. Nancy also helped physical therapy mobilize her mother to prevent functional decline. Nancy also assisted with and insisted that her mother use the incentive spirometer to expand her lungs and facilitate optimal oxygen exchange. With Nancy at her mother’s bedside, food and fluids were provided continuously, facilitating her mother’s recovery. Mrs Smith’s husband brought in her hearing aids and glasses as well as familiar objects from home. A calendar and clock were placed where she could see them, and pictures of her grandchildren were put on the bedside table.

Mrs Smith had a written advance directive for healthcare and named her husband as durable power of attorney. Over the last couple of years, both Mr and Mrs Smith had many conversations about treatment options should they not be able to make their own decisions. Nancy and Mr Smith also made it clear to the medical and nursing staff that Mrs Smiths’ wishes were not aggressive treatment, but palliative care. Advance directives were reviewed and orders were clarified to ensure that Mrs Smith’s wishes were respected and supported. The palliative care team was consulted and became involved in Mrs Smith’s care. The family, primary care provider, nurses, and palliative care team worked collaboratively with Mrs Smith and her family to ensure comfort and symptom control without aggressive treatment.

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Nursing Interventions

Delirium is a medical emergency, and the goals of care are to (1) provide safety for the patient (2) identify the cause, and (3) treat the cause when possible or appropriate. Treatment focuses on the use of nonpharmacologic (nursing interventions) and pharmacologic therapy as needed, and the foundational principle is to treat the underlying cause. In palliative care, treatment of the cause or causes may not be feasible or possible related to the disease process, and the goals of care will change as the disease progresses. However; patient safety, patient well-being, and patient comfort are the cornerstone of excellent palliative nursing care.

The first priority for nursing is to maintain a safe, familiar environment for the patient, whether the setting is the hospital, hospice, long-term care, or home. Low nonglare lighting will prevent visual distortions. Surrounding the patient with familiar objects, such as family photos or favorite possessions, will provide comfort. Having a clock and calendar within sight will help the patient stay in the present. Any object of comfort should be placed within reach for reassurance. Reorientation to time, place, and person when and if appropriate is often helpful. Soft, soothing music may promote a healing environment. Gentle reorientation and reassurances that you will keep them safe may help. Glasses and hearing aids must be in working order and properly placed to maximize communication. Family members should be allowed to stay with the patient, especially if the surroundings are unfamiliar, such as in a hospital, hospice, or palliative care unit. Physical restraints should never be used because they are a precipitating risk factor for delirium and can escalate the behaviors rather than alleviate them. Education and support are imperative in assisting families through this difficult time, as they may not understand their loved one’s behaviors. The bedside nurse is in the ideal situation to provide much needed comfort and assurance.

Familiar sights, sounds, smells, and touches may perhaps provide a sense of security and also assist in relieving some distress.46 Aromatherapy may be useful in reducing anxiety in palliative care patients. For example, sandalwood oil may be effective in reducing anxiety when used as massage oil.47 Gentle massage to the hands and/or feet may help relieve anxiety and quiet agitation.

Nurses intuitively know how to provide the best, evidence-based care for their patients and are therefore at the forefront of delirium prevention. Nurses are also vital to the well-being of their patients and derive great satisfaction when those same patients have improved and shown progress after an episode of delirium.

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Pharmacological Treatment of Delirium

Treatment of delirium is aimed at removing or treating the underlying cause. The decision to treat with medication will depend on the patient’s distress or the risk that the behaviors pose to self or others.48 When using medications in the older adult population, it is imperative to start low and go slow and the medications are titrated to effect.48 Haloperidol is most often recommended because it has fewer anticholinergic side effects, is less sedating, has fewer active metabolites, and rarely causes orthostatic hypotension or cardiovascular side effects.46 Second-line atypical agents for treatment of delirium are olanzapine, risperidone, and quetiapine.49 Benzodiazepines are not recommended for delirium in older adults because of the risk of rebound confusion, agitation, and risk for falls. These drugs can cause oversedation and exacerbate confusion.

In addition, haloperidol is contraindicated for patients with Parkinson disease or Lewy body dementia.

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CASE STUDY: PART 3

On her fifth postoperative day, Mrs Smith was walking with the aid of a front-wheeled walker; she was alert to her baseline, was eating and drinking without encouragement, and seemed ready for discharge to her home with home healthcare. Prior to discharge, a medical social worker held a family conference to ensure that the plan of care was clear for Mrs Smith. The palliative care team collaborated with Mrs Smith and spent time with her and her family to make certain all understood the goals of care. Mrs Smith was adamant that she would not undergo any further diagnostic tests or aggressive treatments for her heart failure. She wanted to spend what time she had at home with family and friends. This was vitally important to her. The palliative care team assured Mrs Smith and her family that her wishes would be followed and they were there to support her. Mrs Smith’s husband and daughter agreed with her wishes as they realized she would not want to live if she had no quality of life to do the things that brought her joy.

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Summary

Delirium is stressful for both the patient and family across all settings. The prevalence is highest in vulnerable populations and particularly for older individuals, in intensive care units, those who are postoperative, and those with advanced illness.44 The predisposing risk factors of advanced age, severity of illness, multiple comorbidities, and vision and hearing impairments, as well as her fall and subsequent surgery to repair her fractured hip, left Mrs Smith very vulnerable to delirium. The precipitating risk factors, or the events happening after hospitalization, contributed to Mrs Smith’s delirium, which included immobilization, dehydration, malnutrition, urinary tract infection, pneumonia, and sleep deprivation. These predisposing and precipitating risk factors alert nursing staff that delirium is an acute onset that requires immediate intervention. Nurses play a key role in the prevention and recognition of delirium, thus contributing to optimal outcomes for hospitalized patients. An array of interventions that range from safety to comfort must be considered for the patient experiencing delirium, regardless of setting. Palliative care teams can provide support and assistance in symptom control, pain management, and family support. The patient and family goals for palliative care are a difficult balancing act for all involved but, when done well, bring comfort to those for whom we care.

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Figure

Figure

Keywords:

delirium; interventions; older adult; risk factors

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