Patient perspectives regarding communication about prognosis and end-of-life issues: How can it be optimised? (original) (raw)
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BMJ open, 2014
Timely communication about life expectancy and end-of-life care is crucial for ensuring good patient quality-of-life at the end of life and a good quality of death. This article describes the protocol for a multisite randomised controlled trial of a nurse-led communication support programme to facilitate patients' and caregivers' efforts to communicate about these issues with their healthcare team. This NHMRC-sponsored trial is being conducted at medical oncology clinics located at/affiliated with major teaching hospitals in Sydney, Australia. Patients with advanced, incurable cancer and life expectancy of less than 12 months will participate together with their primary informal caregiver where possible. Guided by the self-determination theory of health-behaviour change, the communication support programme pairs a purpose-designed Question Prompt List (QPL-an evidence-based list of questions patients/caregivers can ask clinicians) with nurse-led exploration of QPL content, c...
Discrepant Perceptions About End-of-Life Communication: A Systematic Review
Journal of Pain and Symptom Management, 2007
Little research has compared the perceptions of health professionals (HPs), patients, and caregivers about the communication of prognostic information. The objectives of this literature review were to determine 1) patient and caregiver perceptions of levels of information received about prognosis and end-of-life (EoL) issues regarding a life-limiting illness; 2) patient perceptions of and factors related to their understanding and awareness of prognosis; 3) HPs' perceptions of patients' wishes about disclosure of prognosis and factors related to their decision whether to disclose; and 4) concordance between HPs and patients/ caregivers regarding the information given by HPs about prognostic and EoL issues. Relevant studies meeting the inclusion criteria were identified by searching computerized databases (MEDLINE, EMBASE, CINAHL, PsychINFO, Cochrane Register of Controlled Trials [Central]) up to November 2004. The reference lists of identified studies were hand searched for further relevant studies. Inclusion criteria were studies of any design evaluating communication of prognostic information that included adult patients with an advanced, life-limiting illness; their caregivers; and qualified HPs. Fifty-one studies were identified.
Communication about cancer near the end of life
Cancer, 2008
Cancer communication near the end of life has a growing evidence base, and requires clinicians to draw on a distinct set of communication skills. Patients with advanced and incurable cancers are dealing with the emotional impact of a life-limiting illness, treatment decisions that are complex and frequently involve consideration of clinical trials, and the challenges of sustaining hope while also having realistic goals. In this review, the authors sought to provide a guide to important evidence about communication for patients with advanced cancer regarding communication at diagnosis, discussing prognosis, decision making about palliative anticancer therapy and phase 1 trials, advance care planning, transitions in focus from anticancer to palliative care, and preparing patients and families for dying and death. Cancer 2008;113(7 suppl):1897-910.
End-of-life communication in advanced cancer: international trends (2009–2014)
BMJ supportive & palliative care, 2020
Objective To examine trends in end-of-life communication with people with cancer in general practice. Methods Mortality follow-back survey among general practitioners (GPs) in representative epidemiological surveillance networks in Belgium (BE), the Netherlands (NL) and Spain (ES) in 2009-2010 (ES: 2010-2011) and 2013-2014. Using a standardised form, GPs registered all deceased adult patients in their practice and reported for five end-of-life care topics whether they had been discussed with the patient. Non-sudden cancer deaths were included (n=2306; BE: 1233; NL: 729; ES: 344). Results A statistically significant increase was found between 2009/2010 and 2014 in the prevalence of communication about diagnosis (from 84% to 94%) and options for endof-life care (from 73% to 90%) in BE, and in GPs' awareness of patients' preferences for medical treatment and a proxy decision-maker in BE (from 41% and 20% up to 53% and
PLOS ONE, 2022
Objectives To explore patients' experiences and recommendations for discussions about their prognosis and end of life with their physicians. Methods Patients with advanced cancer or advanced chronic obstructive pulmonary disease (COPD) were enrolled in qualitative interviews, which were analyzed with a phenomenological and thematic approach. Results During interviews with fourteen patients (median age 64 years), we identified the following themes for discussion about prognosis and the end of life: topics discussed, the timing, the setting, physician-patient relationship, responsibilities for clinicians, and recommendations. Patients preferred the physician to initiate such discussion, but wanted to decide about its continuation and content. The discussions were facilitated by an established physicianpatient relationship or attendance of relatives. Patients with cancer had had discussions about prognosis at rather clear-cut moments of deterioration than patients with COPD. Patients with COPD did not consider end-of-life discussions a responsibility of the pulmonologist. Patients recommended an understandable message, involvement of relatives or other clinicians, sufficient time, and sensitive non-verbal communication. Conclusions Patients appreciated open, sensitive, and negotiable discussions about prognosis and the end of life.
Journal of Pain and Symptom Management, 2012
The objective of this study was to explore the attitudes of older people and primary care professionals towards communication of diagnosis, prognosis and symptoms in heart failure. Forty-four interviews were conducted with people aged > 60 years with heart failure (New York Heart Association III-IV) recruited from general practices in the UK. Ten focus groups were held with primary care professionals involved in heart failure management. Data were analysed thematically with the aid of the NUD*IST computer program. Participants reported problems with communication, including not being given enough information about their condition, or being given complex information that they did not understand. Many understood little about heart failure and the causes of, and ways to manage, their symptoms. Few participants had had discussions about the prognosis with any health professional, and this was confirmed in professional accounts. Difficulties with terminology were frequently reported: a diagnosis of 'heart failure' was rarely communicated to patients to avoid causing anxiety. Educational needs were identified by most primary care professionals in relation to heart failure management and specifically in relation to communication.
Journal of Pain and Symptom Management, 2007
Evidence-based recommendations concerning how to discuss dying, life expectancy, and likely future symptoms with patients with a limited life expectancy and their families are lacking. The aim of this systematic review was to review studies regarding prognostic/endof-life communication with adult patients in the advanced stages of a life-limiting illness and their caregivers. Relevant studies meeting the inclusion criteria were identified by searching computerized databases up to November 2004. One hundred twenty-three studies met the criteria for the full review, and 46 articles reported on patient/caregiver preferences for content, style, and timing of information. The majority of the research was descriptive. Although there were individual differences, patients/caregivers in general had high levels of information need at all stages of the disease process regarding the illness itself, likely future symptoms and their management, and life expectancy and information