The Attitudes of Progressive Neurological Disease Patients and Their Family Members to End of Life Care: A Cross-Sectional Study

Bužgová, Radka; Kozáková, Radka; Bar, Michal; Škutová, Monika; Ressner, Pavel; Bártová, Petra

doi:10.1177/0030222820936922

Cited by 4 publications

(5 citation statements)

References 33 publications

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“…Regarding PD, our finding of lower support for EUT is somewhat surprising since the deterioration in cognitive and emotional functions and speech disorders which affect many patients at advanced stages of PD significantly influence their quality of life, as well ( 69 ).…”

Section: Discussionmentioning

confidence: 79%

Older adults' attitudes toward using Euthanasia at the end-of life: cancer vs. Parkinson's disease

Lifshitz,

Bachner,

Carmel

2024

Front. Public Health

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BackgroundThere is a paucity of studies that compare older adults' attitudes toward Euthanasia in two different terminal illnesses. Moreover, these studies did not relate to potentially influencing psycho-social factors. The current study aimed to examine the impact of a diverse range of variables on attitudes among older adults toward Euthanasia in two medical conditions: cancer and Parkinson's disease.MethodsA total of 501 individuals aged 75 and above participated in the study. Attitudes toward Euthanasia were measured using vignettes which described two conditions: an 80-year-old man with metastatic cancer and another man in an advanced stage of Parkinson's disease. The questionnaire included measures of relevant experience (with a close family member or a friend dying from a terminal illness), self-efficacy, will to live, satisfaction with life, will to prolong life, fear of death and dying, social support, and psycho-social characteristics. The data were analyzed using hierarchical linear regression models.ResultsA more positive attitude toward Euthanasia was found in the case of cancer compared to Parkinson's disease. Being a woman, having more years of education, lower level of religiosity, greater fear of death and dying and higher self-efficacy contributes to more favorable attitudes toward Euthanasia in both end-of life conditions.ConclusionsThe finding that attitudes toward Euthanasia are statistically significantly more positive in the case of cancer compared to Parkinson's disease can be attributed to the greater prevalence of cancer in the population, and to the public's awareness of the suffering associated with each of these medical conditions. Beyond the important role of the socio-demographic characteristics of gender, education, and religiosity, it appears that fear of death and dying and self-efficacy are important psychological factors in explaining attitudes toward Euthanasia in both illnesses among older people. These findings shed light on older adults' attitudes toward Euthanasia in debilitating illnesses.

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Section: Discussionmentioning

confidence: 79%

Older adults' attitudes toward using Euthanasia at the end-of life: cancer vs. Parkinson's disease

Lifshitz,

Bachner,

Carmel

2024

Front. Public Health

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“…As an example, a caregiver may need to learn how to use new medical equipment for transferring, prepare food for a patient who has difficulty swallowing, and find new ways to communicate, in less than a few months. 6,9 Over the past decade, the field of neuropalliative care has grown as a noncurative treatment option that can provide support for both caregivers and patients. Neuropalliative care is centered around improving QoL of those having neurologic illnesses and their caregivers.…”

Section: Introductionmentioning

confidence: 99%

“…10 Neuropalliative care has been shown to alleviate the physical, emotional, and economic distress that comes with loss of basic functions related to the disease process. 6,9,10 There is a significant lack of literature focused on neuropalliative care, but even fewer studies address caregivers of rapid NDDs. Existing research has primarily focused on patients with neurologic conditions related to dementia, which typically have a slower disease progression.…”

Section: Introductionmentioning

confidence: 99%

“…Frequent changes in care-recipient needs place a significant burden on the financial, emotional, and physical aspects of caregivers' QoL. As an example, a caregiver may need to learn how to use new medical equipment for transferring, prepare food for a patient who has difficulty swallowing, and find new ways to communicate, in less than a few months 6,9 …”

mentioning

confidence: 99%

“…Neuropalliative care is centered around improving QoL of those having neurologic illnesses and their caregivers 10 . Neuropalliative care has been shown to alleviate the physical, emotional, and economic distress that comes with loss of basic functions related to the disease process 6,9,10 . There is a significant lack of literature focused on neuropalliative care, but even fewer studies address caregivers of rapid NDDs.…”

mentioning

confidence: 99%

See 2 more Smart Citations

The Impact of Rapidly Progressing Neurodegenerative Disorders on Caregivers

Mossa,

Mayahara,

Emezue

et al. 2023

J Hosp Palliat Nurs

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Neurodegenerative disorders affect over 6 million people in the United States. A subset of these patients experiences symptoms that progress rapidly, along with a 5- to 10-year life expectancy (amyotrophic lateral sclerosis). This subgroup often becomes dependent on family caregivers. Managing care demands at the end of life that are brought on by rapid disease progression has a negative impact on caregiver quality of life. The purpose of this integrative review is to highlight the gaps in the existing body of research on the effect of neuropalliative care on quality of life of this caregiver population. A total of 13 articles met inclusion criteria and were selected for review. The most frequently occurring themes and findings in the literature shed light on neuropalliative care and provided some insight into both caregivers and patients' perspective at the end of life. What sets this population apart from caregivers and patients of other terminal diseases is the nature of disease progression and the rapid life adjustments that come along with it. Integration of neuropalliative has shown to provide additional support for caregivers and patients; however, it remains underused. To promote equitable access to these services, it is necessary to address several structural barriers.

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Ethics consultations in neuro-oncology

Şener

Neil

Scharf

et al. 2021

Neuro-Oncology Practice

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Background Management of patients with brain tumors can lead to ethical and decisional dilemmas. The aim of this study was to characterize ethical conflicts encountered in neuro-oncologic patients. Methods Retrospective review of ethics consultations performed upon patients with primary and metastatic brain tumors at a tertiary cancer center. An ethics consultation database was examined to characterize ethical conflicts, contextual factors, and interventions by the consultation team. Results Fifty consultations were reviewed; 28(56%) patients were women, median age 54 (range 4-86); 27(54%) patients had a primary central nervous system malignancy; 20(40%) had brain metastasis. At the time of consultations, 41(82%) patients lacked decisional capacity; 48(96%) had a designated surrogate decision maker; 3(6%) had an advance directive outlining wishes regarding medical treatment; 12(24%) had a Do Not Attempt Resuscitation (DNAR) order. Ethical conflicts centered upon management of end-of-life (EOL) circumstances in 37(72%) of cases; of these, 30 did not have decisional capacity. The most common ethical issues were DNAR status, surrogate decision making, and request for non-beneficial treatment. Consultants resolved conflicts by facilitating decision making for incapacitated patients in 30(60%) cases, communication between conflicting parties in 10(20%), and re-articulation of patients’ previously stated wishes in 6(12%). Conclusions Decisional capacity at EOL represents the primary ethical challenge in care of neuro-oncologic patients. Incomplete awareness among surrogate decision makers of patients’ prognosis and preferences contributes to communication gaps and dilemmas. Early facilitation of communication between patients, caregivers, and medical providers may prevent or mitigate conflicts and allow enactment of patients’ goals and values.

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The Attitudes of Progressive Neurological Disease Patients and Their Family Members to End of Life Care: A Cross-Sectional Study

Cited by 4 publications

References 33 publications

Older adults' attitudes toward using Euthanasia at the end-of life: cancer vs. Parkinson's disease

Older adults' attitudes toward using Euthanasia at the end-of life: cancer vs. Parkinson's disease

The Impact of Rapidly Progressing Neurodegenerative Disorders on Caregivers

Ethics consultations in neuro-oncology

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