David Casarett

Do Palliative Consultations Improve Patient Outcomes

OBJECTIVES: To determine whether inpatient palliative consultation services improve outcomes of care.

Diagnosis and Management of Delirium near the End of Life

Patients near the end of life may face a variety of distressing symptoms. Of these, perhaps none is as detrimental to quality of life and is as difficult to diagnose and manage as delirium. Delirium is characterized by a disturbance of consciousness, cognition, and perception, with a course that may wax and wane over a period of hours (1). Delirium occurs in 28% to 83% of patients near the end of life, depending on the population studied and the criteria used (2-6). This syndrome is a challenge for physicians for several reasons. First, it may frighten patients and may cause as much distress as do pain and other symptoms. Second, families may regret the premature separation from a patient who can no longer communicate. Third, delirium may also be a predictor of approaching death for some patients (7). Fourth, delirium robs patients of valuable time and curtails opportunities to make final choices and plans. For all of these reasons, delirium can be a daunting obstacle to good end-of-life care if not addressed appropriately. The skills required for diagnosing and managing delirium at the end of life can be a part of every clinicians repertoire. Prompt recognition and appropriate treatment of delirium can improve patient comfort, optimize quality of life, and enhance the leave-taking process for the patient and family. In this paper, we present strategies for the diagnosis and management of delirium, beginning with a description of a patient with mental status changes. We then describe steps for diagnosing delirium and evaluating potential causes, and conclude by discussing strategies for prevention and treatment. Diagnosis of Mental Status Changes In evaluating mental status changes near the end of life, as with other clinical decisions, the patients and familys goals for care are of central importance. Some patients may wish to preserve their ability to communicate, while others focus on comfort, perhaps at the expense of alertness. For the former patients, diagnostic evaluation and treatment would be appropriate, but for the latter, any diagnostic or therapeutic interventions will be more circumscribed. Mrs. Ghoduay is a 42-year-old woman with ovarian cancer metastatic to the peritoneum, liver, and lung. She has become increasingly agitated over the past week, and her husband, daughter, and nurse believe that these changes are due to pain. However, increases in her opioid dose have produced unacceptable sedation, and she is admitted for evaluation. Her physician, Dr. Marks, finds her to be somnolent and unresponsive to direct questioning. He is unable to assess her pain or other symptoms. Often delirium is obvious, but up to half of delirium episodes are not noted by clinicians (8, 9). Delirium may be missed because the constellation of features that define itacute onset, inattention, altered level of consciousness, and cognitive impairmentare not always readily apparent. Indeed, their detection often requires a careful history and bedside evaluation. To diagnose delirium, clinicians must first have an accurate picture of the patients baseline status. Therefore, Dr. Marks can first inquire about Mrs. Ghoduays mental status at several points in the past. This may require tenacious detective work and questioning of several family members. For instance, Dr. Marks could ask for specific examples of Mrs. Ghouduays interactions with friends and family a day ago, or a week ago. He might also assess her ability to participate in conversations, or to recognize family. This line of questioning can be valuable in identifying the typical fluctuating course of mental status changes that is seen in delirium. Further questioning confirms that Mrs. Ghoduays decline in mental status began approximately 1 week before admission. Since then, her mental status has fluctuated dramatically, with periods of lucidity punctuated by episodes of somnolence and agitation. During that period, her morphine dosage was increased from 100 mg/24 hours to approximately 400 mg/24 hours, including rescue doses. Her oral intake has been limited. On the basis of this information, Dr. Marks believes that delirium is a possible cause of her somnolence. Evaluating Possible Delirium Delirium is a clinical diagnosis made at the bedside. To determine whether Mrs. Ghoduays mental status changes are due to delirium, Dr. Marks will need to rely almost entirely on clinical skills to identify the two features of delirium: cognitive impairment and deficits in attention. Of the tests to assess cognitive function, the Mini-Mental State Examination (MMSE) (10) has the advantage of general availability and familiarity to most clinicians and, in most settings, is recommended as the test of choice. To assess attention, the MMSEs immediate repetition of three objects and a backwards-spelled word (d-l-r-o-w) items can be very useful. Corroboration can be sought in the digit span test, in which inability to repeat at least five numbers forward without errors indicates inattention (11). These tests of cognition and attention support a diagnosis of delirium, but they are not themselves diagnostic. In addition, Dr. Marks can also use one of several instruments that have been developed to distinguish delirium from other causes of altered mental status (Table 1). The most widely used include the Confusion Assessment Method (Table 2)(12), which systematizes bedside observations; the Memorial Delirium Assessment Scale (13); the Delirium Rating Scale (DRS) (14, 15); and the Delirium Symptom Interview (DSI) (16). Each has its own strengths and limitations, and the choice among them depends on the goals of use (Table 1). Table 1. Available Instruments Used To Evaluate Delirium Table 2. Confusion Assessment Method Mrs. Ghoduays mental status seems to improve shortly after admission. Her MMSE score is 16, but she cannot perform the serial sevens task or spell world backwards. She is able to repeat only two digits in the digit span test on several occasions. Throughout the interview, Mrs. Ghoduay is easily distracted and often appears to drift off to sleep. Later the same day, she can be aroused only with difficulty, and attempts to repeat the same tests are unsuccessful. Characterizing Delirium and Identifying Causes On the basis of the results of formal testing and Mrs. Ghouduays fluctuating clinical course, Dr. Marks believes that Mrs. Ghoduays mental changes are most likely due to delirium. Delirium may present as one of three major types: hyperactive, hypoactive, or mixed. Hyperactive or agitated delirium is characterized by agitation and hallucinations and is often readily apparent. In contrast, hypoactive or quiet delirium presents as a decreased level of consciousness with somnolence and can be mistaken for sedation due to opioids or obtundation in the last days of life. Finally, delirium of mixed type, alternating between agitated and quiet forms, may also be difficult to recognize. Of these, Mrs. Ghoduays presentation is most consistent with quiet delirium. Even when delirium is recognized, a cause is often elusive. Although delirium can be due to a single cause, a multifactorial etiology is most common in the palliative care setting (4). Therefore, once delirium is diagnosed, possible causes should be sought in the medication history, physical examination, and laboratory tests. The clinicians task is to identify potential causes that are easily treatable and offer the best chance of improved quality of life (4, 17) (Table 3). Table 3. Contributors to Mental Status Changes near the End of Life Medication History Available data suggest that medication effects are the most common cause of delirium both in the general patient population (8) and in patients near the end of life (4). Several medications commonly used in the palliative care setting deserve attention (Table 3). Opioids can cause both substantial alterations in mental status (18) and more subtle, temporary changes in cognition and attention (19, 20). These changes may become pronounced in the setting of renal failure, particularly with opioids, such as morphine, that have active metabolites (21, 22). Meperidine is associated with a higher risk for delirium because its active metabolite, normeperidine, is cleared slowly (23). Other than meperidine, few data suggest that one opioid is associated a higher incidence of delirium than others. A variety of other medications might also contribute to Mrs. Ghoduays delirium (Table 3). These include sedative drugs, such as benzodiazepines and other sleeping medications; gastrointestinal drugs, such as cimetidine, ranitidine, and metoclopramide; and many nonsteroidal anti-inflammatory agents, corticosteroids, and medications with prominent anticholinergic effects, such as diphenhydramine, hydroxyzine, scopolamine, and amitriptyline (17, 24, 25). In evaluating medications, it is also important to consider over-the-counter medications, including many of those described above and in Table 3. In addition, the use of complementary medications is common, and clinicians may be unaware of their use (26, 27). The side effects and interactions of these agents are poorly understood, and clinicians may wish to screen for these medications as a routine part of a delirium evaluation. When medications are identified as precipitating factors, most can be switched (for example, cimetidine and ranitidine) or their dose can be tapered (for example, corticosteroids). Similarly, in the case of delirium due to opioids, it is sometimes possible to enhance pain relief while improving mental status by rotating to a different opioid, at a reduced equianalgesic dose (18, 28, 29). Although no randomized clinical trials support opioid rotation, expert opinion suggests that this practice can be useful. Careful medication review often identifies several likely contributing medications, some of which may have an important role in pain and symptom management. Because delirium is multifactori

The ability of persons with Alzheimer disease (AD) to make a decision about taking an AD treatment.

Objective: To examine the severity of impairments in the decision-making abilities (understanding, appreciation, reasoning, and choice) and competency to make a decision to use an Alzheimer disease (AD)-slowing medication in patients with AD and the relationships between these impairments, insight, and overall cognition. Methods: Semistructured in-home interviews were conducted with 48 patients with very mild to moderate AD and 102 family caregivers of patients with mild to severe AD recruited from the Memory Disorders Clinic of an AD center. The interview measured performance on the decision-making abilities and three expert psychiatrists’ judgment of competency based on their independent review of the patient interviews. Results: There was considerable variation in patients’ performance on the measures of decision-making abilities. Three expert raters found 19 of 48 (40%) of the subjects competent. Competent patients were more likely to show awareness of their symptoms, prognosis, and diagnosis. A sensitivity analysis suggests that a MMSE score is helpful in discriminating capacity from incapacity only when below 19 or above 23. Conclusions: Persons with mild to moderate Alzheimer disease (AD) have notable impairments in their ability to make an AD treatment decision, especially persons with moderate AD and persons who lack awareness of symptoms, prognosis, or diagnosis.

Comfort feeding only: a proposal to bring clarity to decision-making regarding difficulty with eating for persons with advanced dementia.

Feeding and eating difficulties leading to weight loss are common in the advanced stages of dementia. When such problems arise, family members are often faced with making a decision regarding the placement of a percutaneous endoscopic gastrostomy tube. The existing evidence based on observational studies suggests that feeding tubes do not improve survival or reduce the risk of aspiration, yet the use of feeding tubes is prevalent in patients with dementia, and the majority of nursing home residents do not have orders documenting their wishes about the use of artificial hydration and nutrition. One reason is that orders to forgo artificial hydration and nutrition get wrongly interpreted as “do not feed,” resulting in a reluctance of families to agree to them. Furthermore, nursing homes fear regulatory scrutiny of weight loss and wrongly believe that the use of feeding tubes signifies that everything possible is being done. These challenges might be overcome with the creation of clear language that stresses the patients goals of care. A new order, “comfort feeding only,” that states what steps are to be taken to ensure the patients comfort through an individualized feeding care plan, is proposed. Comfort feeding only through careful hand feeding, if possible, offers a clear goal‐oriented alternative to tube feeding and eliminates the apparent care–no care dichotomy imposed by current orders to forgo artificial hydration and nutrition.

Timing of hospice referral and families' perceptions of services : Are earlier hospice referrals better?

Objectives: To determine whether families of patients who enroll in hospice near the end of life believe that they receive less benefit from hospice services than families of patients who enroll earlier.

Alzheimer's Disease Patients' and Caregivers' Capacity, Competency, and Reasons to Enroll in an Early‐Phase Alzheimer's Disease Clinical Trial

OBJECTIVES: To examine the capacity, competency, and reasons for enrolling of patients with Alzheimers disease (AD) and of their caregivers in an early phase AD clinical trial.

Measuring What Matters: Top-Ranked Quality Indicators for Hospice and Palliative Care From the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association

CONTEXT Measuring quality of hospice and palliative care is critical for evaluating and improving care, but no standard U.S. quality indicator set exists. OBJECTIVES The Measuring What Matters (MWM) project aimed to recommend a concise portfolio of valid, clinically relevant, cross-cutting indicators for internal measurement of hospice and palliative care. METHODS The MWM process was a sequential consensus project of the American Academy of Hospice and Palliative Medicine (AAHPM) and Hospice and Palliative Nurses Association (HPNA). We identified candidate indicators mapped to National Consensus Project (NCP) Palliative Care Guidelines domains. We narrowed the list through a modified Delphi rating process by a Technical Advisory Panel and Clinical User Panel and ratings from AAHPM and HPNA membership and key organizations. RESULTS We narrowed the initial 75 indicators to a final list of 10. These include one in the NCP domain Structure and Process (Comprehensive Assessment), three in Physical Aspects (Screening for Physical Symptoms, Pain Treatment, and Dyspnea Screening and Management), one in Psychological and Psychiatric Aspects (Discussion of Emotional or Psychological Needs), one in Spiritual and Existential Aspects (Discussion of Spiritual/Religious Concerns), and three in Ethical and Legal Aspects (Documentation of Surrogate, Treatment Preferences, and Care Consistency with Documented Care Preferences). The list also recommends a global indicator of patient/family perceptions of care, but does not endorse a specific survey instrument. CONCLUSION This consensus set of hospice and palliative care quality indicators is a foundation for standard, valid internal quality measurement for U.S. SETTINGS Further development will assemble implementation tools for quality measurement and benchmarking.

A Nationwide VA Palliative Care Quality Measure: The Family Assessment of Treatment at the End of Life

OBJECTIVES To evaluate the FATE (Family Assessment of Treatment at End of Life) Survey for use as a nationwide quality measure in the VA health care system. DESIGN Nationwide telephone survey. SETTING Five VA medical centers. PARTICIPANTS Eligible patients received inpatient or outpatient care from a participating VA facility in the last month of life. One respondent/patient was selected using predefined eligibility criteria and invited to participate. MEASUREMENTS The FATE survey consists of 32 items in 9 domains: Well-being and dignity (4 items), Information and communication (5 items), Respect for treatment preferences (2 items), Emotional and spiritual support (3 items), Management of symptoms (4 items), Choice of inpatient facility (1 item), Care around the time of death (6 items), Access to VA services (4 items), and Access to VA benefits after the patients death (3 items). RESULTS Interviews were completed with 309 respondents. The FATE showed excellent psychometric characteristics, with good homogeneity (e.g., Cronbach (alpha = 0.91) and no evidence of significant ceiling effects. The FATE also demonstrated good discriminant validity. For instance, FATE scores varied across facilities (range 44-72; Kruskal Wallis test p < 0.001). Patients who were seen by a palliative care service had better scores (mean 66 versus 52; rank sum test p < 0.001), as did patients who were referred to hospice (67 versus 49; rank sum test p < 0.001). CONCLUSIONS The FATE survey offers an important source of quality data that can be used to improve the end-of-life care of all veterans, regardless of the type of care they receive or their site of death.

Breaking the news: A survey of ALS patients and their caregivers

Breaking the news of the diagnosis of amyotrophic lateral sclerosis (ALS) is a formidable task. To evaluate the process from the perspective of patients and caregivers, we surveyed 94 patient‐caregiver pairs, as well as 50 unpaired patients and 19 unpaired caregivers. We asked respondents to evaluate the physician who first broke the news of the diagnosis based on the time spent discussing the diagnosis, and six attributes of effective communication of bad news derived from the SPIKES protocol (setting, perception, invitation, knowledge, empathy, strategy). Fifty‐six percent of patients rated the way the physician who broke the news as average (30.7), below average (8.6) or poor (16.4). Forty‐eight percent of caregivers rated the physician as poor (14.4), below average (4.8) or average (28.8). Better performance on all attributes of effective communication as well as greater time spent discussing the diagnosis was correlated with higher patient/caregiver satisfaction. Our results suggest that there is room for improvement in breaking the news of the diagnosis of ALS. Greater adherence to certain attributes of effective communication of bad news may improve the way physicians perform this difficult task.

How do AD patients and their caregivers decide whether to enroll in a clinical trial

To examine how patients and caregivers decide whether to enroll in a clinical trial, the authors conducted semi-structured interviews with 22 family caregivers of patients with mild to moderate AD who were recruited for a clinical trial. They found that a caregiver who enrolls a patient in research generally involves the patient in the decision-making process, reports that the patient shares in the decision, and regards the risks and benefits to the patient and to the caregiver as interdependent.