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Attitudes towards end-of-life decisions and the subjective concepts of consciousness: an empirical analysis.

ABSTRACT: BACKGROUND: People have fought for their civil rights, primarily the right to live in dignity. At present, the development of technology in medicine and healthcare led to an apparent paradox: many people are fighting for the right to die. This study was aimed at testing whether different moral principles are associated with different attitudes towards end-of-life decisions for patients with a severe brain damage. METHODOLOGY: We focused on the ethical decisions about withdrawing life-sustaining treatments in patients with severe brain damage. 202 undergraduate students at the University of Padova were given one description drawn from four profiles describing different pathological states: the permanent vegetative state, the minimally conscious state, the locked-in syndrome, and the terminal illness. Participants were asked to evaluate how dead or how alive the patient was, and how appropriate it was to satisfy the patient's desire. PRINCIPAL FINDINGS: We found that the moral principles in which people believe affect not only people's judgments concerning the appropriateness of the withdrawal of life support, but also the perception of the death status of patients with severe brain injury. In particular, we found that the supporters of the Free Choice (FC) principle perceived the death status of the patients with different pathologies differently: the more people believe in the FC, the more they perceived patients as dead in pathologies where conscious awareness is severely impaired. By contrast, participants who agree with the Sanctity of Life (SL) principle did not show differences across pathologies. CONCLUSIONS: These results may shed light on the complex aspects of moral consensus for supporting or rejecting end-of-life decisions.

SUBMITTER: Lotto L

PROVIDER: S-EPMC3280319 | biostudies-literature | 2012

REPOSITORIES: biostudies-literature

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Attitudes towards end-of-life decisions and the subjective concepts of consciousness: an empirical analysis.

Lotto Lorella L Manfrinati Andrea A Rigoni Davide D Rumiati Rino R Sartori Giuseppe G Birbaumer Niels N

PloS one 20120215 2

<h4>Background</h4>People have fought for their civil rights, primarily the right to live in dignity. At present, the development of technology in medicine and healthcare led to an apparent paradox: many people are fighting for the right to die. This study was aimed at testing whether different moral principles are associated with different attitudes towards end-of-life decisions for patients with a severe brain damage.<h4>Methodology</h4>We focused on the ethical decisions about withdrawing lif ...[more]

PMID: 22355392

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Project description:BackgroundIdentifying essential competencies in end-of-life care, as well as general practitioners' (GPs) confidence in these competencies, is essential to guide training and quality improvement efforts in this domain.AimTo determine which competencies in end-of-life care are considered important by GPs, to assess GPs' confidence in these competencies in a European context and their reasons to refer terminally ill patients to a specialist.Design and settingCross-sectional postal survey involving a stratified random sample of 2000 GPs in Switzerland in 2014.MethodSurvey development was informed by a previous qualitative exploration of relevant end-of-life GP competencies. Main outcome measures were GPs' assessment of the importance of and confidence in 18 attributes of end-of-life care competencies, and reasons for transferring care of terminally-ill patients to a specialist. GP characteristics associated with main outcome measures were tested using multivariate regression models.ResultsThe response rate was 31%. Ninety-nine percent of GPs considered the recognition and treatment of pain as important, 86% felt confident about it. Few GPs felt confident in cultural (16%), spiritual (38%) and legal end-of-life competencies such as responding to patients seeking assisted suicide (35%) although more than half of the respondents regarded these competencies as important. Most frequent reasons to refer terminally ill patients to a specialist were lack of time (30%), better training of specialists (23%) and end-of-life care being incompatible with other duties (19%). In multiple regression analyses, confidence in end-of-life care was positively associated with GPs' age, practice size, home visits and palliative training.ConclusionsGPs considered non-somatic competencies (such as spiritual, cultural, ethical and legal aspects) nearly as important as pain and symptom control. Yet, few GPs felt confident in these non-somatic competencies. These findings should inform training and quality improvement efforts in this domain, in particular for younger, less experienced GPs.

Project description:IntroductionThe concept of death is abstract, complex and has a number of meanings. Thus, its understanding and the approach taken to it depend, to a large extent, on aspects such as age, culture, training and religion. Nursing students have regular contact with the process of death and so it is of great interest to understand the attitudes they have towards it. As we live in a plural society it is even more interesting to not only understand the attitudes of Spanish students but, also, those of students coming from other countries. In the present article, we seek to identify and compare the attitudes held by nursing degree students at Hekima-Santé University (Senegal) and the University of Huelva (Spain) about end of life processes. The study identifies elements that condition attitudes and coping with death, whilst considering curricular differences with regards to specific end of life training.MethodA descriptive, cross-sectional and multi-center study was conducted. The overall sample (N = 142) was divided into groups: Hekima-Santé University (Dakar, Senegal) and the University of Huelva (Huelva, Spain). The measurement instruments used were an ad-hoc questionnaire and Bugen´s Coping with Death Scale.ResultsStatistically significant differences (p = 0.005, 95%CI) were found in relation to overall Bugen Scale scores. We can confirm that specialized end of life training (University of Huelva, Spain) did not lead to better coping when compared with a population whose academic curriculum did not provide specific training and who engaged in more religious practices (Hekima-Santé University, Senegal).ConclusionsIn cultures where religion not only influences the spiritual dimension of the individual, but acts in the ethical and moral system and consequently in the economic, educational and family sphere, the accompaniment at the end of life transcends the formative plane. Considering the plural society in which we live, the training that integrates the Degree in Nursing with regard to the care of the final process, must be multidimensional in which spirituality and faith are integrated, working emotional and attentional skills, as well as cultural competence strategies in this process.

Project description:BackgroundMany patients at the end of life require analgesia to relieve pain. Additionally, up to 1/5 of patients in the UK receive sedation for refractory symptoms at the end of life. The use of sedation in end-of-life care (EOLC) remains controversial. While gradual sedation to alleviate intractable suffering is generally accepted, there is more opposition towards deliberate and rapid sedation to unconsciousness (so-called "terminal anaesthesia", TA). However, the general public's views about sedation in EOLC are not known. We sought to investigate the general public's views to inform policy and practice in the UK.MethodsWe performed two anonymous online surveys of members of the UK public, sampled to be representative for key demographic characteristics (n = 509). Participants were given a scenario of a hypothetical terminally ill patient with one week of life left. We sought views on the acceptability of providing titrated analgesia, gradual sedation, terminal anaesthesia, and euthanasia. We asked participants about the intentions of doctors, what risks of sedation would be acceptable, and the equivalence of terminal anaesthesia and euthanasia.FindingsOf the 509 total participants, 84% and 72% indicated that it is permissible to offer titrated analgesia and gradual sedation (respectively); 75% believed it is ethical to offer TA. Eighty-eight percent of participants indicated that they would like to have the option of TA available in their EOLC (compared with 79% for euthanasia); 64% indicated that they would potentially wish for TA at the end of life (52% for euthanasia). Two-thirds indicated that doctors should be allowed to make a dying patient completely unconscious. More than 50% of participants believed that TA and euthanasia were non-equivalent; a third believed they were.InterpretationThese novel findings demonstrate substantial support from the UK general public for the use of sedation and TA in EOLC. More discussion is needed about the range of options that should be offered for dying patients.

Project description:BackgroundMany people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further support with decision-making. To develop this support, it is important to understand the decision-making process.AimExplore with family carers and people living with dementia the decision-making process and factors that influence decision-making in dementia end of life care, to produce a model of decision-making in the context of dementia end-of-life care.MethodsSemi-structured interviews with 21 family carers and 11 people with dementia in England (2018-2019) from memory clinics, general practice and carer organisations. Interviews were analysed using thematic analysis and findings were mapped onto the Interprofessional Shared Decision Making model, refined to produce a modified model of decision-making in dementia.ResultsParticipants described five key decisions towards the end-of-life as examples of decision making. We used these experiences to produce a modified model of decision-making in dementia end-of-life-care. The model considers the contextual factors that influence the decision-making process, including: personal preferences; advance care planning and Lasting Power of Attorney; capacity and health and wellbeing of the person with dementia; support from others and clarity of roles. The decision-making process consists of seven inter-linked stages: 1) identifying the decision maker or team; 2) sharing and exchanging information; 3) clarifying values and preferences; 4) managing and considering emotions; 5) considering the feasibility of options; 6) balancing preferred choice and the actual choice; and 7) implementation and reflecting on outcomes.ConclusionsThe modified model breaks down the decision-making process and attempts to simplify the process while capturing the subtle nuances of decision making. It provides a framework for conversations and supporting decisions by carers.

Project description:ObjectiveTo describe the end-of-life care preferences of individuals, and to examine the influence of age and gender on these preferences.Design, setting and participantsA retrospective cohort study was conducted. Participants included all adults (≥21 years old) (n=3380) who had completed a statement of their preferences as part of a national Advance Care Planning (ACP) programme in Singapore. Data were extracted from the national and Tan Tock Seng Hospital ACP database.Main measuresEnd-of-life care preferences were obtained from the ACP document and differentiated by health status (healthy, chronically ill or diagnosed with advanced illnesses). To analyse the data, descriptive statistics and logistic regression analysis were used.ResultsAcross healthy and chronically ill patients, the majority did not opt for cardiopulmonary resuscitation (CPR) or other life-sustaining measures. Among individuals with advanced illnesses, 94% preferred not to attempt CPR but 69% still preferred to receive some form of active medical treatment. Approximately 40% chose to be cared for, and to die at home. Age and sex significantly predict preferences in those with advanced illnesses. Older age (>=75 years) showed higher odds for home as preferred place of care (OR 1.52; 95% CI 1.23 to 1.89) and place of death (OR 1.29; 95% CI 1.03 to 1.61) and lower odds for CPR (OR 0.31; 95% CI 0.18 to 0.54) and full treatment (OR 0.32; 95% CI 0.17 to 0.62). Being female was associated with lower odds for home as preferred place of care (OR 0.69; 95% CI 0.57 to 0.84) and place of death (OR 0.70; 95% CI 0.57 to 0.85) and higher odds for full treatment (OR 2.35; 95% CI 1.18 to 4.68).ConclusionThe majority preferred to not proceed with life-sustaining treatments, but there was still a strong preference to receive some form of limited treatment. Better understanding of end-of-life care preferences through ACP can better guide end-of-life care programme planning, and resource allocation decisions.

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Attitudes towards end-of-life decisions and the subjective concepts of consciousness: an empirical analysis.

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Attitudes towards end-of-life decisions and the subjective concepts of consciousness: an empirical analysis.

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