180 research outputs found
Information and participation in decision-making about treatment: a qualitative study of the perceptions and preferences of patients with rheumatoid arthritis.
Objectives: To elicit the perceptions and preferences of
patients with rheumatoid arthritis regarding information
and participation in treatment decision-making. To analyse
the patientsâ narratives on the background of the ethical
discourse on various approaches to treatment decisionmaking.
Design: In-depth interviews with themes identified using
principles of grounded theory.
Participants: 22 patients with long-standing rheumatoid
arthritis.
Main outcome measures: Qualitative data on patientsâ
perceptions and preferences regarding information and
participation in decision-making about treatment.
Results: Decision-making about treatment has been
described by the patients as a process consisting of
different stages with shifting loci of control and
responsibility. Patients initially received one treatment
recommendation and were not aware of alternative
treatment options. Those participants in this study who
wanted information about negative effects of a treatment
cited ââinterest in oneâs own healthââ and the potential ââuse
of informationââ as reasons for their preference. The
physiciansâ expert knowledge and clinical experience
regarding the effects of medication were cited as
arguments by patients for a treatment recommendation.
Conclusions: The patientsâ accounts of decision-making
about treatment differ from models of physicianâpatient
relationship that have been put forward in ethical
discourse. These differences may be relevant with respect
to the starting point of an ethical analysis of treatment
decision-making. Patientsâ accounts with respect to a lack
of information on treatment alternatives point to ethically
relevant challenges regarding treatment decision-making
in clinical practice
Information and participation in decision-making about treatments: A qualitative study of the perceptions and preferences of patients with rheumatoid arthritis
ABSTRACT Objectives: To elicit the perceptions and preferences of patients with rheumatoid arthritis regarding information and participation in treatment decision-making
Hydrogen-bond equilibria and life times in a supercooled monohydroxy alcohol
Dielectric loss spectra covering 13 decades in frequency were collected for
2-ethyl-1-hexanol, a monohydroxy alcohol that exhibits a prominent Debye-like
relaxation, typical for several classes of hydrogen-bonded liquids. The thermal
variation of the dielectric absorption amplitude agrees well with that of the
hydrogen-bond equilibrium population, experimentally mapped out using near
infrared (NIR) and nuclear magnetic resonance (NMR) measurements. Despite this
agreement, temperature-jump NIR spectroscopy reveals that the hydrogen-bond
switching rate does not define the frequency position of the prominent
absorption peak. This contrasts with widespread notions and models based
thereon, but is consistent with a recent approach.Comment: 4 pages, 4 figure
Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study
This paper focuses on communication between hospital staff and family carers of patients dying on acute hospital wards, with an emphasis on the family carersâ perspective. The age at which people in the UK die is increasing and many continue to die in the acute hospital setting. Concerns have been expressed about poor quality end of life care in hospitals, in particular regarding communication between staff and relatives. This research aimed to understand the factors and processes which affect the quality of care provided to frail older people who are dying in hospital and their family carers
The involvement of cancer patients in the four stages of decision-making preceding continuous sedation until death: A qualitative study
BACKGROUND: Involving patients in decision-making is considered to be particularly appropriate towards the end of life. Professional guidelines emphasize that the decision to initiate continuous sedation should be made in accordance with the wishes of the dying person and be preceded by their consent. AIM: To describe the decision-making process preceding continuous sedation until death with particular attention to the involvement of the person who is dying. DESIGN: Qualitative case studies using interviews. SETTING/PARTICIPANTS: Interviews with 26 physicians, 30 nurses and 24 relatives caring for 24 patients with cancer who received continuous sedation until death in Belgium, the United Kingdom and the Netherlands. RESULTS: We distinguished four stages of decision-making: initiation, information exchange, deliberation and the decision to start continuous sedation until death. There was wide variation in the role the patient had in the decision-making process. At one end of the spectrum (mostly in the United Kingdom), the physician discussed the possible use of sedation with the patient, but took the decision themselves. At the other end (mostly in Belgium and the Netherlands), the patient initiated the conversation and the physician's role was largely limited to evaluating if and when the medical criteria were met. CONCLUSION: Decision-making about continuous sedation until death goes through four stages and the involvement of the patient in the decision-making varies. Acknowledging the potential sensitivity of raising the issue of end-of-life sedation, we recommend building into clinical practice regular opportunities to discuss the goals and preferences of the person who is dying for their future medical treatment and care
Quality assessment of clinical practice guidelinesfor Chagas disease
INTRODUCTION: The development of clinical practice guidelines (CPGs) has increased; this study aimed to assess the quality of CPGs for the management of Chagas disease. METHODS: Following a systematic search of the scientific literature, two reviewers assessed the eligible guidelines using the Appraisal of Guidelines Research and Evaluation (AGREE) II instrument. RESULTS: Five CPGs were included. The AGREE domains of scope/purpose, stakeholder involvement, and clarity of presentation were rated well, and the domains of applicability and editorial independence received poor ratings. CONCLUSIONS: The quality of CPGs for Chagas disease is poor, and significant work is required to develop high-quality guidelines
âIt scares me to know that we might not have been there!â: a qualitative study into the experiences of parents of seriously ill children participating in ethical case discussions
A brief, patient- and proxy-reported outcome measure in advanced illness: Validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS)
Background:Few measures capture the complex symptoms and concerns of those receiving palliative care.Aim:To validate the Integrated Palliative care Outcome Scale, a measure underpinned by extensive psychometric development, by evaluating its validity, reliability and responsiveness to change.Design:Concurrent, cross-cultural validation study of the Integrated Palliative care Outcome Scale â both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis, known-group comparisons, and correlational analysis), reliability (internal consistency, agreement, and testâretest reliability), and responsiveness (through longitudinal evaluation of change).Setting/participants:In all, 376 adults receiving palliative care, and 161 clinicians, from a range of settings in the United Kingdom and GermanyResults:We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms and Communication/Practical Issues). Integrated Palliative care Outcome Scale shows strong ability to distinguish between clinically relevant groups; total Integrated Palliative care Outcome Scale and Integrated Palliative care Outcome Scale subscale scores were higher â reflecting more problems â in those patients with âunstableâ or âdeterioratingâ versus âstableâ Phase of Illness (Fâ=â15.1, pââ0.60). Longitudinal validity in form of responsiveness to change is good.Conclusion:The Integrated Palliative care Outcome Scale is a valid and reliable outcome measure, both in patient self-report and staff proxy-report versions. It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions, and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement
Palliative care professionalsâ willingness to perform euthanasia or physician assisted suicide
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