Patient perspectives regarding communication about prognosis and end-of-life issues: How can it be optimised? (original) (raw)
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
Journal of Palliative Medicine, 2011
Background: Communication is a necessary tool for ensuring the provision of quality patient-centered care for patients who have life-threatening illnesses, and discussing all relevant end-of-life issues should not be limited to cancer patients. Objective: To examine the incidence and timing of general practitioners (GPs) discussing end-of-life issues with patients whose deaths were expected, and to identify the factors associated with them discussing these issues. Methods: Between January and December 2008, GPs participating in a nationally representative sentinel surveillance network of GPs were asked to register, using standardised forms, the extent of discussing 10 end-of-life issues with patients. Results: We examined 252 patients who died nonsuddenly, 38% of whom died of cancer, and 86% of whose treatment goal was palliative care. Our findings show that GPs often waited until very close to death before they discussed end-of-life issues with patients, and discussed spiritual and social issues less than physical symptoms, diagnoses, and psychological problems. In 74% of cases, the GPs were informed of their patients' preferred place of death; and 8 out of 10 patients with known preferences for place of death, died there. Being diagnosed with cancer was associated with a higher frequency of discussing all 10 end-of-life issues than diagnosis with other (noncancer) conditions, but this is a state of mind we did not explore in this study. Conclusion: Promotion of timely discussion of all relevant end-of-life issues, in patients with cancer and noncancer diagnoses, is advisable based on systematic needs assessment.
Journal of Palliative Medicine, 2015
Background: A primary barrier to physician disclosure of terminal prognosis is concern that patients will lose hope. Inpatient palliative care (IPC) teams are especially posed to mediate this barrier, but little is known about patient perceptions and experience of IPC. Objective: This study aimed to elicit seriously ill patients' perspective and experience of an IPC consultation, and to explore patient attitudes toward information derived from the consultation. Methods: An exploratory, qualitative study was conducted at a large nonprofit community hospital in the Los Angeles area. An established IPC team conducted individualized consults with patients and families within 24 hours of referral. Eligible participants were English-speaking adults, aged 18 or over, who had received an IPC consultation within the previous week during their hospitalization. Purposive recruitment of patients was conducted by the IPC social worker. Interviews were conducted at bedside using a semistructured interview protocol employing open-ended questions. Results: Twelve seriously ill patients were interviewed. Four themes were identified from the interview transcripts: (1) holistic care approach, (2) knowledge/information gained, (3) hope and enlightenment, and (4) patient readiness. Conclusions: Results suggest that disclosure of a terminal prognosis does not mean loss of patient hope. Instead, hope was redefined on a goal other than cure. Presenting patients with information and increasing their knowledge about care options and resources may facilitate patients in identifying meaningful goals that are better aligned with their prognosis.
End-of-Life care: guidelines for patient-centered communication
American family physician, 2008
When patients are diagnosed with cancer, primary care physicians often must deliver the bad news, discuss the prognosis, and make appropriate referrals. When delivering bad news, it is important to prioritize the key points that the patient should retain. Physicians should assess the patient's emotional state, readiness to engage in the discussion, and level of understanding about the condition. The discussion should be tailored according to these assessments. Often, multiple visits are needed. When discussing prognosis, physicians should be sensitive to variations in how much information patients want to know. The challenge for physicians is to communicate prognosis accurately without giving false hope. All physicians involved in the patient's care should coordinate their key prognosis points to avoid giving the patient mixed messages. As the disease progresses, physicians must reassess treatment effectiveness and discuss the values, goals, and preferences of the patient an...