Caregiver/End of Life

Hospice programmes are important for providing end-of-life care to patients with life-limiting illnesses. Hospice enrolment improves quality of life for patients with advanced cancer and reduces the risk of depression for caregivers. Despite the clear benefits of hospice care, patients with haematological malignancies have the lowest rates of enrolment among patients with any tumour subtype. Furthermore, when patients with haematological disorders do enrol into hospice care, they are more likely to do so within 3 days of death than are patients with non-haematological malignancies...

PURPOSE: It is unclear whether life-expectancy estimates of patients with advanced cancer and their caregivers are associated with patient existential, social, or emotional quality of life (QOL) or caregiver emotional QOL. METHODS: Patients with advanced cancer and their caregivers (n = 162 dyads) reported estimates of the chance the patient would live for 2 years or more from 0% (most pessimistic) to 100% (most optimistic). They also completed self-report measures of QOL...

We investigated the relationships of grief and depression to cancer caregiving in early bereavement. We began with three expectations: (a) each outcome would reflect different situational predictors, (b) grief would be more directly related to such predictors, and (c) components of grief would relate differently to the caregiving context and depressed mood. We conducted telephone interviews with family caregivers of incurable cancer patients from two hospitals. A total of 199 family caregivers were interviewed at the time of the patient's diagnosis and reinterviewed 3 months after the patient's death...

PURPOSE OF REVIEW: Death is a certainty in life. Yet, the timing of death is often uncertain. When death occurs suddenly and earlier than anticipated, it is considered as an unexpected death. In this article, we shall discuss when is death expected and unexpected, and review the frequency, impact, causes, and approach to unexpected death in the palliative care setting. RECENT FINDINGS: Even in the palliative care setting in which death is relatively common, up to 5% of deaths in hospice and 10% of deaths in palliative care units were considered to be unexpected...

Alzheimer's disease and related dementias make up the fifth leading cause of death for individuals of 65 years of age and older in the United States. Seventy percent of these individuals will die in long-term care settings. The aim of this integrative review was to examine and synthesize the evidence on grief and bereavement in Alzheimer's disease and related dementias caregivers. This review identified five critical gaps in the existing evidence: (a) a lack of ethnic and gender diversity among caregivers studied, (b) limited use of valid instruments to study dementia caregiver grief and bereavement,...

This investigation explored the relationship between hospice patient disease type, length of stay (LOS) in hospice, and caregiver utilization of grief counseling in bereavement. A 10-year retrospective study was conducted utilizing data from caregivers associated with hospice patients who died between 2004 and 2014. A threshold of inclusion for disease type (≥1.00% of hospice admissions) resulted in a sample size of 3704 patients, comprising 19 different disease types and 348 associated caregivers who received counseling...

BACKGROUND: Although place of death has been recognized as a risk factor in caregivers' bereavement adjustment, the estimation of the effect of the place of death needs careful consideration about many potential cofounders. PATIENTS AND METHODS: This study was a nationwide cross-sectional questionnaire survey for bereaved family caregivers of patients with cancer who died in 3 settings: (1) hospice at home; (2) palliative care units (PCUs); and (3) acute hospitals...

OBJECTIVE: The objective of this exploratory evaluation was to understand the impact of critical care survivorship on caregivers. DESIGN: Family members who attended a quality improvement initiative within our critical care unit were asked to complete 4 questionnaires. SETTING: The setting for this study was a 20-bedded mixed critical care unit in a large teaching hospital in Scotland. Data were collected as a part of an evaluation of a quality improvement initiative...

BACKGROUND: To explore the effect of end of life and other palliative decision making scenarios on the mental health of family members of patients in the neuro-intensive care unit. METHODS: Decision makers of patients in the neuro-ICU at a large, urban, academic medical center meeting palliative care triggers were identified from November 10, 2014, to August 27, 2015. Interviews were conducted at 1 and 6 months post-enrollment. At 1 month, the Inventory of Complicated Grief-Revised (ICG-R), Impact of Events Scale-Revised (IES-R), and the Family Satisfaction-ICU (FS-ICU) were performed along with basic demographic questionnaires...

OBJECTIVE: When caring for a loved one with a life-limiting illness, a caregiver's own physical, emotional, and spiritual suffering can be profound. While many interventions focus on physical and emotional well-being, few caregiver interventions address existential and spiritual needs and the meaning that caregivers ascribe to their role. To evaluate the feasibility and acceptability of the process and content of Caregiver Outlook, we employed a manualized chaplain-led intervention to improve well-being by exploring role-related meaning among caregivers of patients with a life-limiting illness...

In assisted dying, the end-of-life trajectory is shortened to relieve unbearable suffering. Unbearable suffering is defined broadly enough to include cognitive (early dementia), psychosocial or existential distress. It can include old-age afflictions that are neither life-threatening nor fatal in the "vulnerable elderly". The voluntary refusal of food and fluids (VRFF) combined with continuous deep sedation (CDS) for assisted dying is legal. Scientific understanding of awareness of internal and external nociceptive stimuli under CDS is rudimentary...

This is a complex case of post-traumatic stress disorder (PTSD) with comorbid panic disorder occurring in a woman in her mid-60s, with a family history of neurotic illness. PTSD arose in the context of treatment for terminal lung cancer. This patient who had been close to her father watched him die of cancer, when he was about her age. Her diagnosis and treatment prompted traumatic recollections of her father's illness and death that resulted in her voluntary withdrawal from cancer treatment. The goals of treatment were to promptly reduce anxiety, minimise use of sedating pharmacotherapy, promote lucidity and prolong anxiety-free state thereby allowing time for important family interactions...

BACKGROUND: Many 'routine' interventions performed in hospital rooms have repercussions for the comfort of the patient, and the decision to perform them should depend on whether the patient is identified as in a terminal phase. The aim of this study is to analyse the health interventions performed and decisions made in the last days of life in patients with advanced oncological and non-oncological illness to ascertain whether identifying the patient's terminal illness situation has any effect on these decisions...

CONTEXT: Patients with terminal cancer experience refractory symptoms in the last days of life. Although palliative sedation (PS) is recommended for patients suffering unbearable symptoms with imminent death, it requires clear communication between physicians and patients/caregivers. Understanding the demands and perceptions of patients and caregivers in the end-of-life phase are needed for effective communication. OBJECTIVE: To explore patient experiences regarding end-of-life status and PS...

Our responsibility toward others is the domain of ethics. To care particularly of a terminally ill patient, makes the relation asymmetrical. More, the doctor is exposed to unconscious trends like projections, desire of power, and anticipated grief of his/her patient. When warned against these psychological issues, the doctor will have at his/her disposal ethical landmarks that have been internationally accepted: principles such as autonomy and humanity of the patient, proportionality and futility, refusal of euthanasia and the principle of justice in palliative care...

BACKGROUND: Palliative sedation therapy is often required in terminally ill cancer patients, and may cause emotional burden for nurses. The primary aims of this study were 1) to clarify the levels of nurses' emotional burden related to sedation, and 2) to identify the factors contributing to the burden levels. METHODS: A questionnaire survey of 3187 nurses, with a response rate of 82%. RESULTS: Eighty-two percent of the nurses (n = 2607) had clinical experience in continuous-deep sedation...

OBJECTIVE: Knowledge of symptom prevalence and adequate assessment of such symptoms at the end of life is important in clinical practice. We determined the frequency and severity of symptom distress and delirium using the Edmonton Assessment Scale (ESAS) and the Memorial Delirium Assessment Scale (MDAS) and evaluated the clinical utility of the Nursing Delirium Screening Scale (Nu-DESC) as scored by a caregiver as a screening tool for delirium. METHOD: We conducted a secondary analysis of the data from a previous randomized controlled trial on parenteral hydration at the end of life of patients admitted to home hospice...

As there are, to date, few curative treatment options for many neurologic diseases, end of life (EOL) care is an important aspect of the treatment of neurologic patients. In the EOL phase, treatment should be aimed at relieving symptoms, maintaining quality of life, and facilitating a peaceful and dignified way of dying. Common signs and symptoms in the EOL phase of neurologic patients are raised intracranial pressure, seizures, confusion, cognitive deficits, and impaired motor function. Supportive treatment of these symptoms (such as analgesic drugs, dexamethasone, antiepileptic and neuroleptic drugs) is of major importance to maintain quality of life as long as possible...

Terminal illnesses can cause distressing symptoms such as severe pain, mental confusions, feelings of suffocation, and agitation. Despite skilled palliative care in some cases these symptoms may not respond to standard interventions. After all other means to provide comfort and relief to a dying patient have been tried and are unsuccessful, clinical caregivers and patients can consider palliative sedation. Sedation in the context of palliative medicine is the monitored use of medications to induce varying degrees of unconsciousness to bring about a state of decreased or absent awareness in order to relieve the burden of otherwise refractory suffering...

Symptomatic sedation is often required in terminally ill cancer patients, and could cause significant distress to their family. The aims of this study were to clarify the family experience during palliative sedation therapy, including their satisfaction and distress levels, and the determinants of family dissatisfaction and high-level distress. A multicenter questionnaire survey assessed 280 bereaved families of cancer patients who received sedation in 7 palliative care units in Japan. A total of 185 responses were analyzed(response rate, 73%)...