Patients with limited communication in end-of-life situations: Initial psychometric properties of a discomfort observation scale

Soto‐Rubio, Ana; Miguel, Jose Manuel Tomás; Pérez-Marín, Marián; Martín, Pilar Barreto

doi:10.1177/1359105317696139

Cited by 6 publications

(8 citation statements)

References 52 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Discomfort Observation Scale (DOS) ( Soto-Rubio A.L. et al, 2017 ): this scale was used to assess the emotional state (ESP) in patients with significant cognitive impairment.…”

Section: Methodsmentioning

confidence: 99%

“…The accurate assessment of needs is of capital importance in order to fulfill one of the main objectives of palliative care: the reduction of suffering of patients and their families ( Sepúlveda et al, 2002 ). These needs have been considerably studied in the last 20 years, and based on these studies specific assessment instruments have been developed ( Davis et al, 2016 ; Soto-Rubio A.L. et al, 2017 ).…”

Section: Introductionmentioning

confidence: 99%

“…Despite the obstacles to communication that may arise in end-of-life situations, the emotional well-being of the patients must be safeguarded ( Oczkowski et al, 2016 ). In cases where the patient presents difficulties communicating verbally, there are behavioral parameters that can be observed and registered in order to assess the patient’s level of comfort/discomfort, such as facial expressions and posture and body language ( Soto-Rubio A.L. et al, 2017 ).…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Emotional Distress of Patients at End-of-Life and Their Caregivers: Interrelation and Predictors

et al. 2018

View full text Add to dashboard Cite

Background: Patients at the end of life and their families experience a strong emotional impact. The well-being of these patients and that of their family caregiver are related.Aim: To study the variables related with the emotional well-being of patients with and without cognitive impairment at the end of life and that of their primary family caregivers.Design: Cross- sectional study.Participants: Data was collected from 202 patients at the end of life with different diagnosis (COPD, cancer, and frail elderly) as well as from their respective 202 primary family caregivers.Results: Structural equation models indicated that the emotional state of the patients was best predicted by their functional independence and the burden of their family caregivers. In addition, the emotional state of the primary family caregiver was predicted by their burden and not by the cognitive state or the functional independence of the patient. Nevertheless, the burden of the family caregiver, which is the only variable predicting both the emotional state of the patient and that of the caregiver, was directly related with the functional independence of the patient and indirectly with the patient’s cognitive state.Conclusion: The family caregiver’s burden is an important factor to take into consideration when aiming to reduce the emotional distress of patients at the end of life with different diagnosis -whether or not they present significant cognitive impairment- and that of their family caregivers.

show abstract

“…Discomfort Observation Scale (DOS) ( Soto-Rubio A.L. et al, 2017 ): this scale was used to assess the emotional state (ESP) in patients with significant cognitive impairment.…”

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Emotional Distress of Patients at End-of-Life and Their Caregivers: Interrelation and Predictors

et al. 2018

View full text Add to dashboard Cite

show abstract

“…Previous studies demonstrated a large variation of clinical evaluation methodologies to monitor the clinical efficacy of palliative sedation [ 9 , 10 ]. Additionally, close monitoring of discomfort during palliative sedation is rare [ 11 , 12 ].…”

Section: Introductionmentioning

confidence: 99%

Monitoring the clinical practice of palliative sedation (PALSED) in patients with advanced cancer: an international, multicentre, non-experimental prospective observational study protocol

et al. 2023

View full text Add to dashboard Cite

Background Palliative sedation involves the intentional lowering of consciousness at the end of life. It can be initiated to relieve a patient’s burden caused by refractory symptoms at the end of life. The impact of palliative sedation needs to be clinically monitored to adjust the proper dose and regimen of sedative medication to ensure that patients are at ease and comfortable at the end of their lives. Although there is consensus among health care professionals and within guidelines that efficacy of palliative sedation needs to be closely monitored, there is no agreement about how, when, and by whom, this monitoring should be performed. The aim of this study is to evaluate the effects of palliative sedation by measuring the discomfort levels and sedation/agitation levels of the patients at regular timepoints. In addition, the clinical trajectories of those patients receiving palliative sedation will be monitored and recorded. Methods The study is an international prospective non-experimental observational multicentre study. Patients are recruited from in-patient palliative care settings in Belgium, Germany, Italy, Spain and the Netherlands. Adult patients with advanced cancer are monitored by using proxy observations of discomfort (DS-DAT) and depth of sedation/agitation levels (RASS-PAL) during palliative sedation. After the palliative sedation period, the care for the specific participant case is evaluated by one of the attending health care professionals and one relative via a questionnaire. Discussion This study will be the first international prospective multicenter study evaluating the clinical practice of palliative sedation including observations of discomfort levels and levels of sedation. It will provide valuable information about the practice of palliative sedation in European countries in terminally ill cancer patients. Results from this study will facilitate the formulation of recommendations for clinical practice on how to improve monitoring and comfort in patients receiving palliative sedation. Trial registration This study is registered at Clinicaltrials.gov since January 22, 2021, registration number: NCT04719702.

show abstract

“…9 Symptom management and comfort care, for example, become challenging when patients are unable to communicate verbally. 10 The prevalence and inadequate treatment of symptoms are high among those with cognitive impairments even when receiving palliative care. 11 Several reviews have identified that despite advancements in palliative care for patients with dementia, patients who are unable to make decisions endure poorly managed end-of-life symptom burden and suffering.…”

Section: Introductionmentioning

confidence: 99%

Experiences of healthcare providers with eligible patients’ loss of decision-making capacity while awaiting medical assistance in dying

et al. 2022

View full text Add to dashboard Cite

Background: In Canada, under Bill C-14, patients who met all eligibility requirements were prevented from accessing medical assistance in dying (MAiD) following their loss of decision-making capacity while awaiting MAiD. The changes introduced with Bill C-7 continue to limit access to patients who did not enter a waiver of final consent agreement with their healthcare providers. Little is known about the experiences with patients’ loss of capacity to consent and subsequent ineligibility for MAiD. Understanding healthcare providers’ experiences has important implications for improving end-of-life care for those with capacity-limiting conditions. Purpose: To explore Canadian healthcare providers’ experiences with end-of-life of eligible patients who became ineligible for MAiD due to their loss of decision-making capacity to consent and the relational influences on their experiences prior to the implementation of Bill C-7 in Canada. Method: A critical qualitative methodology and a feminist ethics theoretical lens guided this study. A voice-centred relational approach that allowed an in-depth exploration of how power, relationality and moral agency influenced participants’ experiences was used for data analysis. Data consisted of semi-structured interviews with 30 healthcare providers. Findings: The analysis resulted in the following four main themes and corresponding subthemes: (1) identifying factors that may result in ineligibility for MAiD due to capacity loss; (2) maintaining eligibility required to access MAiD; (3) preparing for an alternative end-of-life; (4) experiencing patients’ capacity loss. Discussion: This study highlights that while MAiD is legally available to eligible Canadians, access to MAiD and care for eligible patients who were unable to access MAiD due to their loss of decision-making varied based on the geographical locations and access to willing MAiD and end-of-life care providers. The availability of high-quality palliative care for patients throughout the MAiD process, including following the loss of capacity to consent and subsequent ineligibility, would improve the end-of-life experience for all those involved. The need to establish a systematic approach to prepare and care for patients and their families following the patients’ loss of capacity and subsequent ineligibility for MAiD is also identified.

show abstract

Patients with limited communication in end-of-life situations: Initial psychometric properties of a discomfort observation scale

Cited by 6 publications

References 52 publications

Emotional Distress of Patients at End-of-Life and Their Caregivers: Interrelation and Predictors

Emotional Distress of Patients at End-of-Life and Their Caregivers: Interrelation and Predictors

Monitoring the clinical practice of palliative sedation (PALSED) in patients with advanced cancer: an international, multicentre, non-experimental prospective observational study protocol

Experiences of healthcare providers with eligible patients’ loss of decision-making capacity while awaiting medical assistance in dying

Contact Info

Product

Resources

About