Terminal Restlessness Research Articles

Symptom management for the adult patient dying with advanced chronic kidney disease: A review of the literature and development of evidence-based guidelines by a United Kingdom Expert Consensus Group

Improvement in end-of-life-care is required for patients dying with chronic kidney disease (CKD). The UK government now recommends that tools such as the Liverpool Care Pathway for the Dying Patient (LCP) be used to enhance the care of those patients dying with CKD. The LCP was originally developed for patients dying with terminal cancer, however has been shown to be transferable to patients dying with heart failure or stroke. On this background, in 2005 a UK National Renal LCP Steering Group was formed. The aim was to determine whether or not the generic LCP was transferable to patients dying with CKD. An Expert Consensus sub-group was established to produce evidence-based prescribing guidelines to allow safe and effective symptom control for patients dying with renal failure. These guidelines were finalised by the Expert Consensus group in August 2007 and endorsed by the Department of Health in March 2008. A literature search on symptom control and end-of-life care in renal failure was performed. A summary of the evidence was presented at a National Steering Group meeting. Opinions were given and provisional guidelines discussed. A first draft was produced and individually reviewed by all members of the Expert Group. Following review, amendments were made and a second draft written. This was presented to the entire National Steering Group and again individual comments were taken into consideration. A third and fourth draft were written and individually reviewed, before the guidelines were finalised by the Expert Consensus group. Patients dying with advanced CKD suffer symptoms similar to patients dying of cancer. The Renal LCP prescribing guidelines aim to control the same symptoms as the generic LCP: pain, dyspnoea, terminal restlessness and agitation, nausea and respiratory tract secretions. The evidence for the production of the guidelines is discussed and how a consensus was reached. A summary of the guidelines is given and the complete guidelines document is available via the Marie Curie Palliative Care Institute, Liverpool website.

High-Dose Propofol Drip for Palliative Sedation: A Case Report

Oftentimes, patients at the end of life may present with challenging symptoms refractory to conventional therapies. Agitation and terminal restlessness, 2 common symptoms encountered in the hospice population, are frequently managed using benzodiazepines or typical antipsychotics. In clinical scenarios that either preclude their use or in which they prove ineffective, alternative pharmacotherapy must be considered. Propofol, a sedative-hypnotic unrelated to any other class of drug, may provide palliation of agitation and terminal restlessness refractory to benzodiazepines or antipsychotics. Here, the authors present a hospice patient admitted to the general medical floor of a small community hospital for pain and symptom management. A history of polysubstance abuse contributes to rapidly escalating doses of opioids and midazolam. Failure to control her symptoms resulted in the initiation and successful titration of propofol.

Palliative Sedation in a Specialized Unit for Acute Palliative Care in a Cancer Hospital: Comparing Patients Dying With and Without Palliative Sedation

Palliative sedation is undergoing extensive debate. The aims of this study were to describe the practice of palliative sedation at a specialized acute palliative care unit and to study whether patients who received palliative sedation differed from patients who did not. We performed a systematic retrospective analysis of the medical and nursing records of all 157 cancer patients who died at the acute palliative care unit between 2001 and 2005. Palliative sedation, defined as continuous deep sedation prior to death, was used for 43% of all deceased patients. In 87% of the sedated patients, it was started in the last two days before death. Sedated and nonsedated patients did not differ in survival after admission (eight days vs. seven days, P = 0.12). Sedated patients were younger (55 years vs. 59 years, P = 0.04) and more often had malignancies of the digestive tract ( P < 0.01). In both groups, common symptoms at admission were pain (79% vs. 87%, P = 0.23), constipation, (40% vs. 48%, P = 0.46), and dyspnea (32% vs. 29%, P = 0.77). On the day that palliative sedation was started, sedated patients more often suffered from dyspnea and delirium than nonsedated patients at a comparable day before death. The most important indications for palliative sedation were terminal restlessness (60%) and dyspnea (46%). We conclude that at the studied acute palliative care unit, patients who ultimately received palliative sedation did not have symptoms different than nonsedated patients at admission, but on the day at which the sedation was started, they suffered more often from delirium and dyspnea.

Caring for the Patient and the Family in the Last Hours of Life

Recognition of the signs and symptoms that are common in the final hours of life and a basic understanding of how to manage these signs and symptoms are important to helping the patient and family experience a good death in the home setting. The most common signs and symptoms, including pain, dyspnea, and terminal restlessness or delirium, and their management are discussed. Also addressed are other signs and symptoms, such as cardiovascular signs and symptoms including cold extremities, mottling, and changes in vital signs; respiratory signs and symptoms such as changes in breathing pattern, noisy breathing, and mandibular breathing; and neurological signs and symptoms such as disorientation, sensory changes, and semicomatose state. Changes in metabolism such as fatigue, surge of energy, and increased temperature are presented, along with decreased intake, excretion, and communication changes.

First Do No Harm… Terminal Restlessness or Drug-Induced Delirium

Terminal restlessness is a term frequently used to refer to a clinical spectrum of unsettled behaviors in the last few days of life. Because there are many similarities between the clinical pictures observed in terminal restlessness and delirium, we postulate that at times what is referred to as terminal restlessness may actually be an acute delirium sometimes caused by medication used for symptom control. It is important therefore to consider the causes for this distressing clinical entity, treat it appropriately, and ensure the treatment provided does not increase its severity. This brief review aims to consider the medications that are commonly used toward the end of life that may result in a picture of delirium (or terminal restlessness). These include opioids, antisecretory agents, anxiolytics, antidepressants, antipsychotics, antiepileptics, steroids and nonsteroidal anti-inflammatory drugs (NSAIDs). This review also aims to raise awareness regarding the recognition and diagnosis of delirium and to highlight the fact that delirium may be reversible in up to half of all cases. Good management of delirium has the potential to significantly improve patient care at the end of life.

Using the Minimum Data Set to Determine Predictors of Terminal Restlessness Among Nursing Home Residents

The aim of this study was to determine predictive variables of terminal restlessness that were selected from the Minimum Data Set (MDS) among nursing home residents. A descriptive, cross-sectional design was used to retrospectively review decedents' Minimum Data Set records. Four independent variables from the MDS (distressed mood, problem conditions, pain, and medications) were examined as to whether they were predictive variables of terminal restlessness by utilizing path analysis statistical method. Residents from a nursing home located in the northwestern United States who died during 2000 and 2001, had at least one MDS record and no comatose in their MDS cognitive patterns were selected. A total of 84 decedents' records were consequently recruited for use in this study. A path analysis result showed (a) 44.6% of the variance in distressed mood is predicted by two variables: problem conditions (beta = .557) and pain (beta = .193) and (b) 34% of the variance in terminal restlessness is predicted by two variables: pain (beta = .370) and distressed mood (beta = .313). Results indicate that residents who (a) had more problem conditions and more pain are more likely to have distressed moods and (b) experienced more pain and had more distressed moods have a higher incidence of terminal restlessness. These findings provide important and valuable clinical implications. A careful evaluation of pain is necessary, especially as many elders are not able to communicate well during the terminal phase of their lives. How to access residents' moods and provide appropriate and immediate interventions, comfort, and even just being there for them are imperative for nursing home care providers.

Neuroleptics in Terminal Restlessness

Neuroleptics in Terminal Restlessness

Proactive: Spiritual care for terminal restlessness

According to the Journal of Pain and Palliative Care Pharmacology, 25–88% of all hospice patients, caregivers, and hospice staff will observe significant changes in a patient's behaviors. Some of the changes include picking at sheets or Depends, restlessness movements of the arms and legs, confusion, tight clutching at caregiver's hands, and twitching and jerking. These signs are usually categorized as terminal restlessness. Sometimes, the cause is a medical condition that can be treated.

Terminal restlessness as perceived by hospice professionals

Any hospice professional can identify the syndrome known as terminal restlessness, and all would agree that it is extremely distressing to patients as well as their families and caregivers. Often, caregivers cannot ameliorate the anguish many patients experience at life's end. Many clinicians assert that the causes are physical resulting from medication toxicity, organ shutdown and the associated metabolic changes, pain, urinary or fecal retention, dyspnea and related hypoxia, and sepsis. Yet, many also credit psychosocial and spiritual distress as precipitating factors. The purposes of this study were twofold: to compare the perceptions of practicing hospice clinicians with the literature related to terminal restlessness, and to determine if their experience with terminal restlessness agreed with the components of the one established scale for terminal restlessness found in the literature. In general, the study findings corresponded to the literature in regards to frequency, definition, causes, and behavioral manifestations of terminal restlessness. The clinicians in the study supported the impact of psychosocial and spiritual causes of terminal restlessness and defined the phenomenon in terms of time period; emotional, physical, and spiritual distress; changes in consciousness; and increased activity. However, the study did not support the inclusion of impaired consciousness and withdrawal as comprised in the terminal restlessness scale.

Terminal restlessness: perspectives of an interdisciplinary palliative care team

To explore an interdisciplinary team's perceptions of families' needs and experiences surrounding terminal restlessness. A qualitative exploratory design using two focus groups. Participants were members of an interdisciplinary palliative care team working in a palliative care unit in a university teaching hospital in Israel. The palliative care team confronted several challenging and stressful issues surrounding the management of terminal restlessness that influenced their treatment decisions and relationships with families. Four themes reflected the participants' perceptions and experiences: suffering, maintaining control, feelings of ambivalence and valuing communication to reduce conflict. Findings suggest the need for comprehensive treatment plans to meet the special supportive and information needs of these families, specific supportive strategies for the professional caregivers and further studies to develop ethical criteria and evidence-based guidelines for the use of sedation in the management of terminal restlessness.

Helping the Family Through the Experience of Terminal Restlessness

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Alcohol withdrawal as an underrated cause of agitated delirium and terminal restlessness in patients with advanced malignancy

A significant number of patients with terminal cancer experience terminal restlessness or an agitated delirium in the final days of life. Multifactorial etiologies may contribute to agitation and restlessness for any one patient; alcohol withdrawal may be underrated as a contributing factor. The symptoms and signs of alcohol withdrawal—autonomic dysfunction, tremor, anxiety, sleep disturbances, insomnia, and abnormal vital signs—may continue for 6 to 12 months after the cessation of alcohol. We report four patients with terminal restlessness in whom we believe alcohol withdrawal to be a significant causal factor and a fifth patient who subsequently benefited from our team's increased awareness of this clinical problem. Formal assessment of alcohol withdrawal may be of more value in the palliative setting than using the currently accepted assessment instruments. Many of the medications utilized for the treatment of agitated delirium and terminal restlessness in the palliative care setting are effective therapies for alcohol withdrawal.

Palliative care nursing: a continuum of practice from a generalized approach to a specialized disciplinePallative Care Nursing. A Guide to Practice, 2nd ed. Edited by Margaret O'Connor and Sanchia Aranda Published by Radcliffe Medical Press, Oxford, United Kingdom, 2003387 pages, $dollar;60 (soft cover)

This palliative care nursing guide to practice is highly recommended, and will help any nurse caring for a patient with progressive debilitating disease to understand, individualize and provide the care that is needed. It is especially useful as an introductory text for those new to the field, but seasoned palliative care practitioners will also benefit from reading this text. Written in the main by nurses practicing in Australia and England, this book provides a broad framework for evidence-based palliative care nursing. This second edition has been expanded to include some international authors, although the practice models tend to be those of Australia and England. The nursing principles and practices described, however, have universal applicability. The text is rich with references and is of a size and format that makes it user friendly. Its organization rightly reflects the importance of communication skills, understanding nursing stressors in palliative care, as well as ethical decision-making and spirituality as a prelude to approaching other aspects of palliative care. The book is divided into 24 chapters, each of which starts with a brief introduction about the author and his/her clinical setting. This format is useful as it illustrates the wide arena within which palliative care is practiced. The chapters are organized into three main sections. The first section, “Framing Palliative Care,” includes chapters on the principles of evidence-based practice, communication skills in palliative care, occupational stress in palliative care, ethical decision-making, and spiritual care. The section on “Symptom Control” includes chapters on pain management, breathlessness, fatigue, constipation, nausea and vomiting, nutrition and hydration, malignant wounds, confusion and terminal restlessness, psychological and existential distress, sexuality and body image, and complementary therapies. The third section includes areas that are frequently lacking in palliative care texts, including chapters on working with families, bereavement, palliative care in chronic illness, aging, dementia and palliative care, caring for dying patients in critical care, and pediatric palliative care. The selective use of case studies in several of the chapters, a long nursing tradition, is a helpful way of illustrating key points. The case studies are particularly helpful in the chapters on ethical decision-making, spiritual care, and confusion and restlessness. Broad principles of nursing assessment and management underpin each of the chapters. Where pharmacotherapy is discussed, some chapters are quite specific regarding a step-by-step approach to symptom management (e.g., the management of constipation), while others are more general. For the more general chapters, the nurse will need to refer to other texts to get specifics on the “how to.” In each chapter, however, nursing care and the pivotal role of the nurse in facilitating palliative care for the patient, is strongly evident. This palliative care nursing guide to practice stands out in its recognition that nurses working with progressive, incurable illness and associated distressing symptom clusters need the tools to analyze and evaluate the literature and research that informs their clinical practice. The chapter on evidence-based practice provides both the insight and tools that make this possible. Lucid and practical checklists are provided for assessing the validity of both quantitative and qualitative research studies. This book beautifully illustrates the depth and rewards of palliative care nursing as a continuum of practice—from a generalized approach helpful to most patients to a specialized discipline in caring for the terminally ill.

Drug therapy for delirium in terminally ill patients.

Delirium is a common disorder that often complicates treatment in patients with life-limiting disease. Delirium is described using a variety of terms such as agitation, acute confusional states, encephalopathy, organic mental disorders, and terminal restlessness. Delirium may arise from any number of causes, and treatment should be directed at addressing these causes. In cases where this is not possible, or does not prove successful, the use of drug therapy may become necessary. The primary objective of this review was to identify and evaluate studies examining medications used to treat patients suffering from delirium during the terminal phases of disease. We searched the following sources: MEDLINE (1966 to July 2003), EMBASE 1980 to July 2003), CINAHL (1982 to July 2003), PSYCH LIT (1974 to July 2003), PSYCHINFO (1990 to July 2003) and the Cochrane Library Volume 2, 2003) for literature pertaining to this topic. Prospective trials with or without randomization and/or blinding involving the use of pharmacological agents for the treatment of delirium at the end of life were considered. Two reviewers independently assessed trial quality using standardized methods and extracted data for evaluation. Outcomes related to both efficacy and adverse effects were collected. Thirteen potential studies were identified by the search strategy. Of these, only one study met the criteria for inclusion in this review. This study evaluated 30 hospitalized AIDS patients receiving one of three different agents: chlorpromazine, haloperidol, and lorazepam. Analysis of this trial found chlorpromazine and haloperidol to be equally effective. Chlorpromazine was noted to slightly worsen cognitive function over time but this result was not significant. The lorazepam arm of the study was stopped early as a consequence of excessive sedation. The data from one study of 30 patients would perhaps suggest that haloperidol is the most suitable drug therapy for the treatment of patients with delirium near the end of life. Chlorpromazine may be an acceptable alternative if a small risk of slight cognitive impairment is not a concern. However, there is insufficient evidence to draw any conclusions about the role of pharmacotherapy in terminally ill patients with delirium, and further research is essential.

Treatment of Terminal Restlessness

Treatment of Terminal Restlessness

Treatment of Terminal Restlessness

Terminal restlessness is an important issue in the management of symptoms at the end of life with between 25% and 88% of dying patients exhibiting this condition.1–5 The purpose of this review was to examine the empiric evidence about the pharmacological treatment for terminal restlessness. All available literature, in all languages, from 1966–2002 including randomized trials, concurrent observations, retrospective chart reviews, single case studies, clinical practice guidelines, expert consensus, single expert opinion articles, and editorials were reviewed as “best available evidence.” Of the 72 articles reviewed, 14 met the criteria and were chosen for analysis. Despite the majority of authors recommending neuroleptic medications as a first or second line pharmacological treatment of restlessness, a number of studies demonstrated the effectiveness of other medications such as benzodiazepines (notably midazolam and lorazepam), or phenothiazines, either alone or in combinations. There is insufficient evidence to suggest that a single medication or class of medications is appropriate for terminal restlessness. There is a clear need for additional trials of neuroleptics, benzodiazepines, barbiturates, and combination protocols to determine which protocols are the most effective and have the least side effects.

The impact on the family of terminal restlessness and its management.

The purpose of this qualitative study was to explore and describe the impact of terminal restlessness and its management upon family members who were witness to the event. Approximately 25%-85% of terminally ill patients may experience the symptoms associated with terminal restlessness during the hours or days before their death. They may be physically agitated and cognitively impaired and often appear to be suffering. Treatment of these severe symptoms usually involves the use of sedating medications that can affect these patients' ability to communicate with their families. Using a phenomenological research approach, two focus groups and 20 individual interviews were held with bereaved family members and hospice staff. A content analysis of the data resulted in the emergence of several core themes that reflected the participants' perceptions and experiences; the multidimensionality of suffering, the need for communication, feelings of ambivalence, the need for information and sensitivity and respect. It is suggested that the development and implementation of a multiprofessional team protocol could address the specific concerns, information and care needs of these families at this critical time.

Terminal Restlessness in the Dying: Hospice Attitudes and Practice

An exploratory study was conducted to ascertain hospice attitudes and practices related to terminal restlessness, a syndrome found in an estimated 1 to 2 percent of dying patients (Kaye, 1997). Three hundred two participating hospices responded to survey questions. Chi-square analyses were conducted to explore frequency differences between the independent variable, utilization of a terminal restlessness tool, and each of the dependent variables: location, census, utilization of a treatment protocol, and number of cases of terminal restlessness reported. Chi-square analysis was also conducted to explore a frequency difference between the independent variable, average daily census, and the dependent variable, number of cases of terminal restlessness reported. With the exception of two predicted relationships, there were no significant differences in the proportion of responses between the independent and dependent variables. Implications of these results for hospice attitudes and practice are discussed. Suggestions are made for standardization of identification, assessment, and treatment of terminal restlessness.

Terminal restlessness in the nursing facility: assessment, palliation, and symptom management.

Terminal restlessness, sometimes called agitated delirium, is a common occurrence at the end of life. This type of delirium may appear as thrashing or agitation, involuntary muscle twitching or jerks, fidgeting or tossing and turning, yelling, or moaning. Among older adults, especially those in long-term care situations, the delirium may not appear to be very different from previous episodes observed when the resident experienced an infection, exacerbation of a chronic condition, anxiety, pain, or adverse drug reactions. However, delirium at the end of life is usually multifactorial and exacerbated by the progressive shutdown of multiple body systems. Therefore, the effective management of terminal restlessness requires a different approach than the usual care of residents with delirium. For many nurses, this responsibility means adding new clinical knowledge and skills to their practice inventories. This article provides an overview of terminal restlessness, offers assessment guidelines for older adults in long-term care situations who are dying, and describes comfort and symptom management strategies for these individuals.

Development of an instrument to measure terminal restlessness.

Terminal restlessness is a clinical phenomenon that is frequently observed but poorly defined. Its management is important in providing good quality palliative care. We present the development of an objective observer-rated instrument to measure terminal restlessness.