Terminal Restlessness Research Articles

Pharmacologic Management of End-of-Life Delirium: Translating Evidence into Practice.

End-of-life delirium affects a vast majority of patients before death. It is highly distressing and often associated with restlessness or agitation. Unlike delirium in other settings, it is considered irreversible, and non-pharmacologic measures may be less feasible. The objective of this review is to provide an in-depth discussion of the clinical trials on delirium in the palliative care setting, with a particular focus on studies investigating pharmacologic interventions for end-of-life delirium. To date, only six randomized trials have examined pharmacologic options in palliative care populations, and only two have focused on end-of-life delirium. These studies suggest that neuroleptics and benzodiazepines may be beneficial for the control of the terminal restlessness or agitation associated with end-of-life delirium. However, existing studies have significant methodologic limitations. Further studies are needed to confirm these findings and examine novel therapeutic options to manage this distressing syndrome.

Factors affecting access to subcutaneous medicines for people dying in the community

Objectives: Common terminal phase symptoms include pain, dyspnoea, anxiety, terminal restlessness, nausea and noisy breathing. This study identified the proportion of community pharmacies across two Australian states stocking medicines useful in managing terminal phase symptoms, while exploring factors considered predictive of pharmacies carrying these medicines. Methods: Community pharmacies from across the states of New South Wales (NSW) and South Australia (SA) were concurrently mailed a survey. Respondents were asked questions relating to medicines stocked, expiry date of stock, awareness of people with palliative care needs and demographic characteristics of the pharmacy. A ‘prepared pharmacy’ was defined as a pharmacy that held medicines useful in the management of terminal phase symptoms. Results: The proportion of prepared pharmacies across NSW and SA was 21.9%. Multiple logistic regression demonstrated eight predictors of prepared pharmacies, of which awareness of people with palliative needs using their service was the strongest. Conclusions: One-fifth of community pharmacies carry formulations useful in managing terminal phase symptoms. The main factor associated with this was awareness of people with palliative needs using the pharmacy. Strategies that engage with pharmacists in anticipation of the terminal phase are critical, supporting people with palliative needs to remain at home to die, if desired.

Symptom Control in Palliative Care

Patients with palliative diseases often suffer from a variety of onerous symptoms with marked impairment in quality of life. The treatment is often difficult. One reason is that patients usually have several problems at the same time. Another reason is that the need for medication can cause additional side effects, which in turn have to be treated as well. In this article we explain most of these symptoms and give treatment recommendations based on the current literature (excluding pain therapy). In particular, this article is divided into the following sub-items: mucositis/stomatitis, dyspnea, nausea, constipation, anxiety, depression, weakness/fatigue, delirium, sleep disorders and terminal restlessness, pruritus, pleural effusion, ascites. Most palliative patients need individualized treatment. Sometimes medication has to be used in an off-label way, and sometimes one must just hold a hand and be there for the patient or their relatives. The most important principle in working with palliative care patients is to maintain or restore quality of life. Our therapy should always be adapted to the needs of the patient and the most important goal is to preserve our patients' autonomy.

Hydration and symptoms in the last days of life

ObjectivesAt the end of life oral fluid intake is often reduced. Consensus about the most appropriate management for terminally ill patients with limited oral fluid intake is lacking. The objective...

Use of a Robotic Cat to Treat Terminal Restlessness: A Case Study.

Terminal restlessness and delirium are common clinical issues faced by patients at the end of life. For many providers, recognition and treatment of this condition can be challenging. This becomes increasingly difficult when the dying patient has end-stage Alzheimer's dementia and the patient is manifesting terminal restlessness. Use of both pharmacological and nonpharmacological modalities is often employed for this condition, but the degree of restlessness in this population may not always be readily apparent. In addition, pharmacological therapy, especially antipsychotics, has multiple adverse effects and many nonacute-care hospital facilities may have limitations on its use. Consideration of the use of robotic animal aids has recently been introduced to assist in treating terminal restlessness in this population. This case study describes the effectiveness of using a robotic cat to successfully assist in the treatment of a patient with terminal restlessness.

What can nurses do to manage incontinence challenges in end-of-life care?

What can nurses do to manage incontinence challenges in end-of-life care?

Dying in an Institution

Dying in an Institution Kallie Wilbourn (bio) Girl Behind the Door: A Memoir of Delirium & Dementia Stephanie Dickinson Rain Mountain Press www.spdbooks.org/Products/9781495106088/girl-behind-the-door.aspx 236Pages; Print, $15.00 When considering a memoir as reading choice I tend to wonder why I should care to read someone’s account of his or her life. However, Girl Behind the Door is not primarily Stephanie Dickinson’s story but an unflinching account, as seen through a poet’s eyes and mind, of her mother Florence’s death in a “Memory Care Unit.” This memoir is also, though not in a hectoring way, an indictment against the cold, materialistic attitude our modern American society imposes on many old people, and how little comfort and respect that comes down to for an old person who is dying in an institution. The environment of Florence’s death is itself dead, an airless facility with artificially homey furnishings set in an Iowa landscape and community blighted by industrial agriculture and no longer recognizable as the home where Dickinson grew up. Though she has lived in the facility for some years, Florence, like the surrounding countryside, is treated like an object. Palliative care consists primarily of drugs—drugs that are intended to make her less trouble to overworked staff but do little to relieve the demented woman’s wrenching terror and physical discomfort until her regimen is switched to the quasi-death morphine provides. Eschewing strict chronology throughout her memoir, Dickinson begins with her arrival at the “Memory Care Unit” but allows past events that arise as she witnesses her mother’s ordeal to illustrate their history and relationship. The result is a fluid, layered narrative issuing from feelings and memories as she observes her mother’s decline and dying. When Dickinson’s two older brothers join her, one sees the family portrait that results from Dickinson’s blend of past and present and that Florence was a single, hard-working mother who has been unlucky; In terms of marriage and was never easy to live with, but who has earned her three children’s love and loyalty. The mother-daughter relationship, especially, has seen a great deal of conflict. This was a mother who though critical of all her children favored her sons and expected her daughter to mirror the mother’s perfect, imagined self—a self she seemed to believe could earn redemption and better luck through perfection in appearance and deportment. Florence’s symbiotic demands on her daughter have caused friction and adolescent rebellion against the mother’s model female ideals, which included a style of dress and propriety many young women rejected in the 1970s: You ingrate, Stephanie; after all I’ve done for you and this is how you act? Wearing those rags to meet your college roommate in…I’ve bought you beautiful clothes. Where are all those wonderful pantsuits? This exchange will be familiar and even comic to many daughters and mothers. But we learn from Stephanie Dickinson’s unfolding narrative that rebellion against Florence’s expectations prompted flirtations with danger Dickinson barely survived. And though Dickinson matures into a responsible if unconventional woman, she never fulfills her mother’s ideals or seems to her mother successful or even very respectable, an attitude the adult Dickinson has come to accept. It is with this attitude of acceptance that she holds vigil over her mother’s deathbed and tries to intervene on her behalf for more mercifully effective care. Dickinson’s writing style narrating her mother’s dementia and dying is consistently detailed and gritty: Florence lies there, twisting and turning. I’ll later learn that this is called terminal restlessness. Her eyes are almost closed and her mouth ajar, as if it has to stay partly open for the groaning to come out. Some may see betrayal in Dickinson’s unsparing account of her mother’s death and their conflicted relationship. The friction between mother and daughter may in fact have resulted in greater detachment than is common. However one could just as well see Dickinson’s depiction as that of a poet, one for whom words and...

Ethical dilemmas faced by hospice nurses when administering palliative sedation to patients with terminal cancer.

Palliative sedation is a method of symptom management frequently used in hospices to treat uncontrolled symptoms at the end of life. There is a substantial body of literature on this subject; however, there has been little research into the experiences of hospice nurses when administering palliative sedation in an attempt to manage the terminal restlessness experienced by cancer patients. Semistructured interviews were conducted with a purposive sample of seven hospice nurses who had cared for at least one patient who had undergone palliative sedation within the past year in a hospice in the south of England in the United Kingdom. A phenomenological approach and Colaizzi's stages of analysis were employed to develop themes from the data. Facilitating a "peaceful death" was the primary goal of the nurses, where through the administration of palliative sedation they sought to enable and support patients to be "comfortable," "relaxed," and "calm" at the terminal stage of their illness. Ethical dilemmas related to decision making were a factor in achieving this. These were: medication decisions, "juggling the drugs," "causing the death," sedating young people, the family "requesting" sedation, and believing that hospice is a place where death is hastened. Hospice nurses in the U.K. frequently encounter ethical and emotional dilemmas when administering palliative sedation. Making such decisions about using palliative sedation causes general discomfort for them. Undertaking this aspect of care requires confidence and competence on the part of nurses, and working within a supportive hospice team is of fundamental importance in supporting this practice.

The experiences of caregivers of patients with delirium, and their role in its management in palliative care settings: an integrative literature review.

ObjectivesTo explore the experiences of caregivers of terminally ill patients with delirium, to determine the potential role of caregivers in the management of delirium at the end of life, to identify the support required to improve caregiver experience and to help the caregiver support the patient.MethodsFour electronic databases were searched—PsychInfo, Medline, Cinahl and Scopus from January 2000 to July 2015 using the terms ‘delirium’, ‘terminal restlessness’ or ‘agitated restlessness’ combined with ‘carer’ or ‘caregiver’ or ‘family’ or ‘families’. Thirty‐three papers met the inclusion criteria and remained in the final review.ResultsPapers focused on (i) caregiver experience—distress, deteriorating relationships, balancing the need to relieve suffering with desire to communicate and helplessness versus control; (ii) the caregiver role—detection and prevention of delirium, symptom monitoring and acting as a patient advocate; and (iii) caregiver support—information needs, advice on how to respond to the patient, interventions to improve caregiver outcomes and interventions delivered by caregivers to improve patient outcomes.ConclusionHigh levels of distress are experienced by caregivers of patients with delirium. Distress is heightened because of the potential irreversibility of delirium in palliative care settings and uncertainty around whether the caregiver–patient relationship can be re‐established before death. Caregivers can contribute to the management of patient delirium. Additional intervention studies with informational, emotional and behavioural components are required to improve support for caregivers and to help the caregiver support the patient. Reducing caregiver distress should be a goal of any future intervention.© 2016 The Authors. Psycho‐Oncology Published by John Wiley & Sons Ltd.

Palliative sedation at a university palliative care unit--a descriptive analysis

Palliative sedation (pS) is indicated in the presence of end-stage disease with treatment-refractory symptoms not tolerable for the patient. We investigated the practice of pS at a university palliative care unit. Before starting pS the following data were documented: indication and decision making, type of sedation, life expectancy evaluated by the physician using the palliative prognostic index. Over the time of pS communication skills, depth of sedation, relief in symptoms, substitution of fluid and nutrition and used medications were collected. During evaluation time 99 patients died. 34 patients received pS (34 %). All patients suffered from cancer. Indications for palliative sedation were: terminal restlessness (56 %), dyspnea (39 %), pain (32 %), psychological distress (15 %), agitated delir (9 %), vomiting (3 %) and bleeding (3 %) (multiple nominations possible). In 31 cases (91 %) nurses were included for decision making. In 33 cases continuous sedation were initiated immediately (median duration 27.5 hours). The most applied medication was midazolam (94 %), sometimes combined with neuroleptics (44 %) and propofol (15 %). 91 % of the patients additionally received opioids. Artificial fluid was substituted in two cases. Palliative sedation started in the median 27.5 hours before death. The final physician assessment revealed complete symptom relief in 12 patients (35 %), very strong symptom relief in 20 patients (59 %) and moderate symptom relief in 2 patients (6 %). pS was successfully used as last resort for relief of treatment-refractory symptoms in one third of decedents at the investigated palliative care unit.

An Observational Study on a Protocol for Withdrawal of Life-Sustaining Measures on Two Non-Academic Intensive Care Units in The Netherlands: Few Signs of Distress, No Suffering?

ContextBecause anticipation of death is common within the intensive care unit, attention must be paid to the prevention of distressing signs and symptoms, enabling the patient to die peacefully. In the relevant studies on this subject, there has been a lack of focus on measuring determinants of comfort in this population. ObjectivesTo evaluate whether dying without distressing signs after the withdrawal of life-sustaining measures is possible using a newly introduced protocol and to analyze the potential influence of opioids and sedatives on time till death. MethodsThis was a prospective observational study, in two nonacademic Dutch intensive care units after the introduction of a national protocol for end-of-life care. The study lasted two years and included adult patients in whom mechanical ventilation and/or vasoactive medication was withdrawn. Exclusion criteria included all other causes of death. ResultsDuring the study period, 450 patients died; of these, 305 patients were eligible, and 241 were included. Ninety percent of patients were well sedated before and after withdrawal. Severe terminal restlessness, death rattle, or stridor was seen in less than 6%. Dosages of opioids and sedatives increased significantly after withdrawal, but did not contribute to a shorter time till death according the regression analysis. ConclusionThe end-of-life protocol seems effective in realizing adequate patient comfort. Most patients in whom life-sustaining measures are withdrawn are well sedated and show few signs of distress. Dosages of opioids and sedatives increase significantly during treatment withdrawal but do not contribute to time until death. Dying with a minimum of distressing signs is thus practically possible and ethically feasible.

THE EXPERIENCES OF CAREGIVERS OF PATIENTS WITH DELIRIUM AND THEIR ROLE IN ITS MANAGEMENT IN A PALLIATIVE CARE SETTING

IntroductionDelirium remains the most common and distressing neuropsychiatric complication in patients with advanced cancer. This study examines the experiences of caregivers of patients with delirium and their role in its...

Palliative pharmacological sedation for terminally ill adults.

Terminally ill people experience a variety of symptoms in the last hours and days of life, including delirium, agitation, anxiety, terminal restlessness, dyspnoea, pain, vomiting, and psychological and physical distress. In the terminal phase of life, these symptoms may become refractory, and unable to be controlled by supportive and palliative therapies specifically targeted to these symptoms. Palliative sedation therapy is one potential solution to providing relief from these refractory symptoms. Sedation in terminally ill people is intended to provide relief from refractory symptoms that are not controlled by other methods. Sedative drugs such as benzodiazepines are titrated to achieve the desired level of sedation; the level of sedation can be easily maintained and the effect is reversible. To assess the evidence for the benefit of palliative pharmacological sedation on quality of life, survival, and specific refractory symptoms in terminally ill adults during their last few days of life. We searched the Cochrane Central Register of Controlled Trials (CENTRAL; 2014, Issue 11), MEDLINE (1946 to November 2014), and EMBASE (1974 to December 2014), using search terms representing the sedative drug names and classes, disease stage, and study designs. We included randomised controlled trials (RCTs), quasi-RCTs, non-RCTs, and observational studies (e.g. before-and-after, interrupted-time-series) with quantitative outcomes. We excluded studies with only qualitative outcomes or that had no comparison (i.e. no control group or no within-group comparison) (e.g. single arm case series). Two review authors independently screened titles and abstracts of citations, and full text of potentially eligible studies. Two review authors independently carried out data extraction using standard data extraction forms. A third review author acted as arbiter for both stages. We carried out no meta-analyses due to insufficient data for pooling on any outcome; therefore, we reported outcomes narratively. The searches resulted in 14 included studies, involving 4167 adults, of whom 1137 received palliative sedation. More than 95% of people had cancer. No studies were randomised or quasi-randomised. All were consecutive case series, with only three having prospective data collection. Risk of bias was high, due to lack of randomisation. No studies measured quality of life or participant well-being, which was the primary outcome of the review. Five studies measured symptom control, using four different methods, so pooling was not possible. The results demonstrated that despite sedation, delirium and dyspnoea were still troublesome symptoms in these people in the last few days of life. Control of other symptoms appeared to be similar in sedated and non-sedated people. Only one study measured unintended adverse effects of sedative drugs and found no major events; however, four of 70 participants appeared to have drug-induced delirium. The study noticed no respiratory suppression. Thirteen of the 14 studies measured survival time from admission or referral to death, and all demonstrated no statistically significant difference between sedated and non-sedated groups. There was insufficient evidence about the efficacy of palliative sedation in terms of a person's quality of life or symptom control. There was evidence that palliative sedation did not hasten death, which has been a concern of physicians and families in prescribing this treatment. However, this evidence comes from low quality studies, so should be interpreted with caution. Further studies that specifically measure the efficacy and quality of life in sedated people, compared with non-sedated people, and quantify adverse effects are required.

Using continuous sedation until death for cancer patients: A qualitative interview study of physicians’ and nurses’ practice in three European countries

Background: Extensive debate surrounds the practice of continuous sedation until death to control refractory symptoms in terminal cancer care. We examined reported practice of United Kingdom, Belgian and Dutch physicians and nurses. Methods: Qualitative case studies using interviews. Setting: Hospitals, the domestic home and hospices or palliative care units. Participants: In all, 57 Physicians and 73 nurses involved in the care of 84 cancer patients. Results: UK respondents reported a continuum of practice from the provision of low doses of sedatives to control terminal restlessness to rarely encountered deep sedation. In contrast, Belgian respondents predominantly described the use of deep sedation, emphasizing the importance of responding to the patient’s request. Dutch respondents emphasized making an official medical decision informed by the patient’s wish and establishing that a refractory symptom was present. Respondents employed rationales that showed different stances towards four key issues: the preservation of consciousness, concerns about the potential hastening of death, whether they perceived continuous sedation until death as an ‘alternative’ to euthanasia and whether they sought to follow guidelines or frameworks for practice. Conclusion: This qualitative analysis suggests that there is systematic variation in end-of-life care sedation practice and its conceptualization in the United Kingdom, Belgium and the Netherlands.

St Christopher's Hospice Clinical Guidelines: Anticipatory end-of-life care medication for the symptoms of terminal restlessness, pain and excessive secretions in frail older people in care homes

The term ‘frail older people’ has been defined as people over 75 years of age with geriatric syndrome, i.e. the presence of numerous chronic diseases and signs and symptoms such as incontinence, falls, cognitive impairment and reduced mobility (Saavreda Munoz and Barreto Martin, 2008). However, some older people are ‘frail’ before the age of 75 years. Therefore, frailty in older people should generally be associated with older people who have advanced, progressive, incurable illness and/or considerable health and social needs (Department of Health, 2001). The process of dying in frail older people requiring 24-hour care appears to differ from, for example, the process of dying in mid-life from cancer (Hockley and Clark, 2002). People dying with a cancer diagnosis generally maintain high functional capacity up until the final 3 months of life, when there is a marked decline (Lunney et al, 2003; Costantini et al, 2008). However, frail older people tend to follow a dwindling trajectory towards death in that they gradually become more disabled (Lynn and Adamson, 2003). Their functional deterioration particularly worsens in their final year of life, when they can become much more dependent in terms of activities of living (Lunney et al, 2003; Costantini et al, 2008). Death in frail older people can also be relatively unexpected, e.g. frail older people can die ‘suddenly’ from silent pneumonia or quietly in their sleep (Lynn and Adamson, 2003). Frail older people often have multiple morbidities, which may be complicated by varying degrees of dementia/cognitive impairment (Rashidi et al, 2011). For example, Lievesley et al (2011) undertook a survey of all residents living in Bupa’s UK care homes in 2009. The most commonly occurring disorders were dementia (43.6%), stroke (20.2%), heart disease (20.6%) and arthritis (18.3%). Although these data are only from one care home …

Dealing with the dying patient - treatment of terminal restlessness and agitation

Dealing with the dying patient - treatment of terminal restlessness and agitation

Four Essential Drugs Needed for Quality Care of the Dying: A Delphi-Study Based International Expert Consensus Opinion

The majority of dying patients do not have access to necessary drugs to alleviate their most common symptoms, despite evidence of drug efficacy. Our aim was to explore the degree of consensus about appropriate pharmacological treatment for common symptoms in the last days of life for patients with cancer, among physicians working in specialist palliative care. Within OPCARE9, a European Union seventh framework project aiming to optimize end-of-life cancer care, we conducted a Delphi survey among 135 palliative care clinicians in nine countries. Physicians were initially asked about first and second choice of drugs to alleviate anxiety, dyspnea, nausea and vomiting, pain, respiratory tract secretions (RTS), as well as terminal restlessness. Based on a list of 35 drugs mentioned at least twice in the first round (n=93), a second Delphi round was performed to determine ≤ 5 essential drugs for symptom alleviation in the last 48 hours of life that should be available even outside specialist palliative care. There was ≥ 80% consensus among the participants (n=90) regarding morphine, midazolam, and haloperidol as essential drugs. For RTS, there was consensus about use of an antimuscarinic drug, with 9%-27% of the physicians each choosing one of four different drugs. Based on this consensus opinion and other literature, we suggest four drugs that should be made available in all settings caring for dying patients with cancer, to decrease the gap between knowledge and practice: morphine (i.e., an opioid), midazolam (a benzodiazepine), haloperidol (a neuroleptic), and an antimuscarinic.

Higher doses of opioids in patients who need palliative sedation prior to death: Cause or consequence?

BackgroundPalliative sedation (PS) is necessary in a significant percentage of patients dying on an acute palliative care unit (PCU). Common indications are terminal restlessness, pain and dyspnoea. On our PCU, terminal restlessness was the main indication for PS but pain was the most prevalent symptom during admission. Because delirium is often drug induced in terminal cancer patients and opioids are amongst the most frequently implicated drugs, we hypothesised that the underlying pain problem and its treatment might have been related to the need for sedation. Patients and methodsTo test this hypothesis, we did a retrospective analysis on the use of medication with potential cognitive side-effects, focusing on analgesics, in 68 patients who died on the PCU after PS and 89 patients who died without PS. ResultsUltimately sedated patients used opioids in significantly higher doses; they were more often treated with a rotation to another opioid and with amitriptyline. The dose of opioids used at various time points between admission and death was strongly related to the probability of PS. ConclusionsOur findings support the hypothesis that, although pain was not the main indication for PS, pain and its treatment might have been primarily related to the need for palliative sedation in this patient cohort.

Deathbed Phenomena: Its Role in Peaceful Death and Terminal Restlessness

Dying patients and their caregivers frequently experience that which is known as deathbed phenomena, that is, visions of past deceased relatives or friends, religious figures, and a visionary language pertaining to travel. Collective research supports mounting evidence that deathbed visions typically yield peaceful deaths. Yet within the literature, numerous hospice patients experience the symptoms of terminal restlessness and frequently succumb to anguished deaths. Why are some patients and caregivers guided by peaceful deathbed phenomena and others are not? Does a relationship exist between the lack of deathbed phenomena and the onset of terminal restlessness in dying patients? This clinical paper intends to answer these questions and might elucidate the factors that contribute to a dying patient's death ending as either a peaceful event or the one affected by terminal restlessness. This knowledge gained could lessen the occurrence of anguished deaths and perhaps change our way of viewing dying.

Terminal restlessness: causes, assessment and management

One of the main wishes of people in the terminal phase of life is to be comfortable and free of unpleasant symptoms. Similarly, relatives also wish to see their loved one free of pain and distressing symptoms. Terminal restlessness is an unpleasant condition that may be observed during the last days or hours of life. It has been estimated that it affects between 25% and 85% of terminally ill patients. It is very upsetting for relatives and healthcare professionals to witness. Furthermore, relatives who observe a loved one in obvious distress at the time of death may deal with their bereavement less well, as a poor death lingers unpleasantly in the memories of those who live on. There exists some confusion and inconsistency in the terminology related to terminal restlessness. This article will provide an overview of the causes, clinical features, assessment and management of terminal restlessness. It will also examine the controversial subject of the use of sedation as a management strategy for terminal restlessness at the end of life. Conflicts of interest: none