Trajectory of Dyspnea and Respiratory Distress among Patients in the Last Month of Life

Campbell, Margaret; Kiernan, Julia E.; Strandmark, John; Yarandi, Hossein

doi:10.1089/jpm.2017.0265

Cited by 34 publications

(26 citation statements)

References 35 publications

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“…The most frequently reported were: to assess/monitor sedation depth after palliative sedation initiation ( n = 29), to assess effects or side effects of opioid use ( n = 7), 29,34,45,54,56,81,91 to evaluate signs/symptoms of impending death ( n = 8) 21–23,37,42,60,61,79 and to examine associations between level of consciousness and discomfort or other symptoms ( n = 6). 40,44,50,60,61,64 It is noteworthy that only four studies sought to validate level of consciousness instruments in the palliative care setting. 18,73,87,93 Of these, only one aimed to develop a new tool.…”

Section: Resultsmentioning

confidence: 99%

Identification and evaluation of observational measures for the assessment and/or monitoring of level of consciousness in adult palliative care patients: A systematic review for I-CAN-CARE

et al. 2019

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Background: The use of observational measures to assess palliative care patients’ level of consciousness may improve patient care and comfort. However, there is limited knowledge regarding the validity and reliability of these measures in palliative care settings. Aim: To identify and evaluate the psychometric performance of observational level of consciousness measures used in palliative care. Design: Systematic review; PROSPERO registration: CRD42017073080. Data sources: We searched six databases until November 2018, using search terms combining subject headings and free-text terms. Psychometric performance for each identified tool was appraised independently by two reviewers following established criteria for developing and evaluating health outcome measures. Results: We found 35 different levels of consciousness tools used in 65 studies. Only seven studies reported information about psychometric performance of just eight tools. All other studies used either ad hoc measures for which no formal validation had been undertaken ( n = 21) or established tools mainly developed and validated in non-palliative care settings ( n = 37). The Consciousness Scale for Palliative Care and a modified version of the Richmond Agitation–Sedation Scale received the highest ratings in our appraisal, but, since psychometric evidence was limited, no tool could be assessed for all psychometric properties. Conclusion: An increasing number of studies in palliative care are using observational measures of level of consciousness. However, only a few of these tools have been tested for their psychometric performance in that context. Future research in this area should validate and/or refine the existing measures, rather than developing new tools.

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Section: Resultsmentioning

confidence: 99%

Identification and evaluation of observational measures for the assessment and/or monitoring of level of consciousness in adult palliative care patients: A systematic review for I-CAN-CARE

et al. 2019

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“…There will be 18 patient-caregiver dyads per each group (total N = 72; 36 patients and 36 caregivers). Sample size is based on calculated breathlessness, [18] the main patient outcome measured, and the HF patients’ and their family caregivers’ greatest concern [27, 28]. This sample size will have at least 80% power to detect a reduction of one SD using one-sided two-sample t-test at a significance level of 0.05.…”

Section: Methodsmentioning

confidence: 99%

Study protocol of coaching end-of-life palliative care for advanced heart failure patients and their family caregivers in rural appalachia: a randomized controlled trial

et al. 2019

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BackgroundHeart failure (HF) afflicts 6.5 million Americans with devastating consequences to patients and their family caregivers. Families are rarely prepared for worsening HF and are not informed about end-of-life and palliative care (EOLPC) conservative comfort options especially during the end stage. West Virginia (WV) has the highest rate of HF deaths in the U.S. where 14% of the population over 65 years have HF. Thus, there is a need to investigate a new family EOLPC intervention (FamPALcare), where nurses coach family-managed advanced HF care at home.MethodsThis study uses a randomized controlled trial (RCT) design stratified by gender to determine any differences in the FamPALcare HF patients and their family caregiver outcomes versus standard care group outcomes (N = 72). Aim 1 is to test the FamPALcare nursing care intervention with patients and family members managing home supportive EOLPC for advanced HF. Aim 2 is to assess implementation of the FamPALcare intervention and research procedures for subsequent clinical trials. Intervention group will receive routine standard care, plus 5-weekly FamPALcare intervention delivered by community-based nurses. The intervention sessions involve coaching patients and family caregivers in advanced HF home care and supporting EOLPC discussions based on patients’ preferences. Data are collected at baseline, 3, and 6 months. Recruitment is from sites affiliated with a large regional hospital in WV and community centers across the state.DiscussionThe outcomes of this clinical trial will result in new knowledge on coaching techniques for EOLPC and approaches to palliative and end-of-life rural home care. The HF population in WV will benefit from a reduction in suffering from the most common advanced HF symptoms, selecting their preferred EOLPC care options, determining their advance directives, and increasing skills and resources for advanced HF home care. The study will provide a long-term collaboration with rural community leaders, and collection of data on the implementation and research procedures for a subsequent large multi-site clinical trial of the FamPALcare intervention. Multidisciplinary students have opportunity to engage in the research process.Trial registrationClinicalTrials.gov NCT04153890, Registered on 4 November 2019

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“…Breathlessness is frequently underreported and undertreated ( 91 ), it is important to increase awareness of breathlessness as an issue affecting people with advanced dementia ( 90 ). Due to restricted communication capacities, self-reporting of breathlessness, and observing the degree of mobility limitation due to breathlessness is rarely possible (MRC-breathlessness scale).…”

Section: Common Symptoms and Complications Treatment Optionsmentioning

confidence: 99%

Palliative Care in Advanced Dementia

et al. 2020

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Dementia syndrome is common and expected to increase significantly among older people and characterized by the loss of cognitive, psychological and physical functions. Palliative care is applicable for people with dementia, however they are less likely to have access to palliative care. This narrative review summarizes specifics of palliative care in advanced dementia. Most people with advanced dementia live and die in institutional care and they suffer a range of burdensome symptoms and complications. Shortly before dying people with advanced dementia suffer symptoms as pain, eating problems, breathlessness, neuropsychiatric symptoms, and complications as respiratory or urinary infections and frequently experience burdensome transitions. Pharmacological and nonpharmacological interventions may reduce symptom burden. Sensitive observation and appropriate assessment tools enable health professionals to assess symptoms and needs and to evaluate interventions. Due to lack of decisional capacity, proxy decision making is often necessary. Advanced care planning is an opportunity establishing values and preferences and is associated with comfort and decrease of burdensome interventions. Family carers are important for people with advanced dementia they also experience distress and are in need for support. Recommendations refer to early integration of palliative care, recognizing signs of approaching death, symptom assessment and management, advanced care planning, person-centered care, continuity of care, and collaboration of health care providers.

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Trajectory of Dyspnea and Respiratory Distress among Patients in the Last Month of Life

Abstract: Respiratory distress escalated in the last days. Inability to self-report raises care concerns about under-recognition and under-treatment of respiratory distress.

Cited by 34 publications

References 35 publications

Identification and evaluation of observational measures for the assessment and/or monitoring of level of consciousness in adult palliative care patients: A systematic review for I-CAN-CARE

Identification and evaluation of observational measures for the assessment and/or monitoring of level of consciousness in adult palliative care patients: A systematic review for I-CAN-CARE

Study protocol of coaching end-of-life palliative care for advanced heart failure patients and their family caregivers in rural appalachia: a randomized controlled trial

Palliative Care in Advanced Dementia

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