Josephine M. Clayton

Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review

Many health professionals (HPs) express discomfort at having to broach the topic of prognosis, including limited life expectancy, and may withhold information or not disclose prognosis. A systematic review was conducted of 46 studies relating to truth-telling in discussing prognosis with patients with progressive, advanced life-limiting illnesses and their caregivers. Relevant studies meeting the inclusion criteria were identified by searching computerized databases (MEDLINE, EMBASE, CINAHL, PsychINFO and Cochrane Register of Controlled Trials) up to November 2004, with handsearching of studies, as well as inclusion of studies satisfying selection criteria reported in 2005 by the authors. 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. Results showed that although the majority of HPs believed that patients and caregivers should be told the truth about the prognosis, in practice, many either avoid discussing the topic or withhold information. Reasons include perceived lack of training, stress, no time to attend to the patients emotional needs, fear of a negative impact on the patient, uncertainty about prognostication, requests from family members to withhold information and a feeling of inadequacy or hopelessness regarding the unavailability of further curative treatment. Studies suggest that patients can discuss the topic without it having a negative impact on them. Differences and similarities in findings from different cultures are explored. Palliative Medicine 2007; 21: 507—517

Asking questions can help: development and preliminary evaluation of a question prompt list for palliative care patients

Question prompt lists (QPLs) have been shown to be an inexpensive and effective communication tool for patients in oncology consultations. We aimed to develop and pilot a QPL for palliative care (PC) patients. In order to identify suitable questions for inclusion in the QPL, we conducted focus groups and individual interviews with 19 patients, 24 carers and 22 PC health professionals. A further 21 health professionals reviewed the draft document. The draft QPL was piloted in 23 patients. In total, 112 questions were identified and grouped into eight categories. All participants felt that the QPL, in booklet form, could be a useful tool. Out of 23 patients in the pilot study, 22 agreed that the QPL was helpful, contained useful questions, was easy to understand and would be useful in the future. State anxiety (STAI) decreased after receiving the booklet and seeing the doctor in 16 out of 19 patients (overall anxiety decreased by a median of 8, IQR 1–13). Participants in the pilot study endorsed the inclusion of end-of-life issues in the QPL, despite some reservations expressed about this by health professionals in the individual interviews. We have identified a specific QPL that might facilitate useful dialogue between PC patients and their doctor. The QPL has strong support from patients, their carers and relevant health professionals.

Discussing end-of-life issues with terminally ill cancer patients and their carers: a qualitative study

Goals of workDiscussing end-of-life issues is of key importance to terminally ill cancer patients and their families, and a challenging topic for both health professionals and patients/carers. There is a lack of research evidence in the literature to guide clinical practice. The objective of this study was to explore the optimal content and phrasing of information when discussing the dying process and end-of-life issues with terminally ill cancer patients and their carers.Subjects and methodsWe conducted focus groups and individual interviews with 19 palliative care patients and 24 carers from three palliative care services in Sydney, and 22 palliative care health professionals from around Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Further focus groups and/or individual interviews were conducted until no additional topics were raised. Participants’ narratives were analysed using qualitative methodology.Main resultsDistinct content areas emerged for discussing end-of-life issues: treatment decisions at the end-of-life; potential future symptoms; preferences for place of death; the process of dying; what needs to be done immediately after death; and existential issues. When discussing the process of dying participants recommended: exploring the persons’ fears about dying and dispelling myths; describing the final days and the likely unconscious period; and the reduced need for food and fluids. Many participants identified the dilemma regarding whether to discuss potential complications around the time of death.ConclusionsThis paper provides strategies, words and phrases which may inform discussions about the process of dying and end-of-life issues. Further research is needed to determine the generalizability of these findings.

Discussing life expectancy with terminally ill cancer patients and their carers: a qualitative study

Goals of workThere is uncertainty regarding the preferred content and phrasing of information when discussing life expectancy with terminally ill cancer patients and their carers. The objective of this study was to explore the various stakeholders’ perceptions about these issues.Subjects and methodsWe conducted focus groups and individual interviews with 19 patients with advanced cancer and 24 carers from three different palliative care (PC) services in Sydney and 22 PC health professionals (HPs) from ten different sites in Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Further focus groups and/or individual interviews were conducted until no additional topics were raised. Participants’ narratives were analysed using qualitative methodology.Main resultsParticipants’ suggestions regarding the content of prognostic discussions included: explaining uncertainty and limitations, explaining the process involved with making survival predictions, and avoiding being too exact. Those patients and carers who wanted to be given a time frame mostly wanted to know how long the average person with their condition would live and/or be given a rough range. HPs had various views regarding ways to phrase life expectancy: days versus weeks versus months, likelihood of the patients being alive for certain events, a rough quantitative range and probabilities (e.g. 10% and 50% survival). However, most HPs said they would rarely if ever give statistical information to patients.ConclusionsThis paper provides some potential strategies, words and phrases which may inform discussions about life expectancy. Further research is needed to determine the generalizability of these findings.

Evaluation of a novel individualised communication-skills training intervention to improve doctors’ confidence and skills in end-of-life communication

Background: We developed a novel individualised training program regarding end-of-life communication, designed to be time effective for busy junior-doctors working in hospital settings. Aim: We aimed to pilot this brief individualised training program with junior-doctors to explore its acceptability, feasibility and effect on the doctors’ confidence, communication skills, attitudes towards psychosocial care and burnout. Design: The content of the training intervention was informed by a systematic literature review and evidence-based clinical practice guidelines regarding end-of-life communication. The intervention was based on sound educational principles and involved three one-hour teaching sessions over a three-week period, including two individual sessions with an expert facilitator and simulated patient/caregiver. In addition, participants received written and audiovisual take-home learning materials. Participants were videotaped consulting with a simulated patient/caregiver pre/post training to assess the impact of the course on their communication behaviours. Participants completed de-identified questionnaires pre/post training, including self-assessed confidence, attitudes to psychosocial care, and the Maslach Burnout inventory. Participants: Participants included 22 junior-doctors from a large teaching hospital in Sydney, Australia. Results: All participants reported that the training was useful, had been helpful for their communication with patients and that they would recommend the training to others. Significant improvements were found in participants’ communication skills (in seven out of 21 specific and all three global communication behaviours assessed, range P=0.02 to <0.001), confidence in communicating about relevant topics (P<0.001), attitudes towards psychosocial care (P=0.03) and sense of personal accomplishment (P=0.043). There were no overall differences in participants’ burnout levels. Conclusion: This intervention shows promise and warrants further formal evaluation.

Parenteral antibiotics in a palliative care unit: prospective analysis of current practice

All patients receiving parenteral antibiotics in a palliative care unit were prospectively monitored over a 13-month period. Of 913 consecutive admissions, 41 patients received 43 courses of parenteral antibiotics. On 27 of 43 occasions, the use of parenteral antibiotics was considered helpful (62%), in eight cases it was considered unhelpful (19%) and in a further eight cases the outcome could not be assessed (19%). The sites of infection for which parenteral antibiotics were prescribed included urinary tract infections (37%), lower respiratory tract infections (26%), soft tissue/skin or wound infections (16%), purulent terminal respiratory secretions (5%) and other (16%). In this sample, urinary tract infections were more commonly associated with a positive outcome than other indications combined (88% versus 48%, respectively). There appeared to be no association between outcome of use and age of the patient (median age 70, range 37–90), underlying diagnosis (HIV versus advanced malignancy) and reason for admission (symptom control versus respite care versus terminal care). However, outcomes appeared to vary in this sample according to the palliative care phase of the patient at the time parenteral antibiotics were administered. Positive outcomes were more common in terminal- (83%) and stable-phase (71%) patients than deteriorating- (58%) or acute-phase (38%) patients. This survey demonstrates that in specific circumstances a beneficial role exists for the use of parenteral antibiotics in a palliative care setting. The establishment of appropriate guidelines is recommended.

A systematic review of evidence for end-of-life communication interventions: Who do they target, how are they structured and do they work?

OBJECTIVE To identify and synthesise evidence for interventions targeting end-of-life communication. METHODS Database, reference list and author searches were conducted to identify evaluations of end-of-life communication-focussed interventions. Data were extracted, synthesised and QUALSYST quality analyses were performed. RESULTS Forty-five studies met inclusion criteria. Interventions targeted patients (n=6), caregivers (n=3), healthcare professionals (HCPs n=24) and multiple stakeholders (n=12). Interventions took various forms including communication skills training, education, advance care planning and structured practice changes. Substantial heterogeneity in study designs, outcomes, settings and measures was apparent and study quality was variable. CONCLUSION A substantial number of end-of-life communication interventions have been evaluated. Interventions have particularly targeted HCPs in cancer settings, though patient, caregiver and multi-focal interventions have also been evaluated. While some interventions were efficacious in well-designed RCTs, most evidence was from less robust studies. While additional interventions targeting patients and caregivers are needed, multi-focal interventions may more effectively remove barriers to end-of-life communication. PRACTICE IMPLICATIONS Despite the limitations evident in the existing literature, healthcare professionals may still derive useful insights into effective approaches to end-of-life communication if appropriate caution is exercised. However, additional RCTs, implementation studies and cost-benefit analyses are required to bolster arguments for implementing and resourcing communication interventions.

A question prompt list for patients with advanced cancer in the final year of life: development and cross-cultural evaluation.

Background: Clinicians and patients find prognosis and end-of-life care discussions challenging. Misunderstanding one’s prognosis can contribute to poor decision-making and end-of-life quality of life. A question prompt list (booklet of questions patients can ask clinicians) targeting these issues may help overcome communication barriers. None exists for end-of-life discussions outside the palliative care setting. Aim: To develop/pilot a question prompt list facilitating discussion/planning of end-of-life care for oncology patients with advanced cancer from Australia and the United States and to explore acceptability, perceived benefits/challenges of using the question prompt list, suggestions for improvements and the necessity of country-specific adaptations. Design: An expert panel developed a question prompt list targeting prognosis and end-of-life issues. Australian/US semi-structured interviews and one focus group elicited feedback about the question prompt list. Transcribed data were analysed using qualitative methods. Setting/participants: Thirty-four patients with advanced cancer (15 Australian/19 US) and 13 health professionals treating such patients (7 Australian/6 US) from two Australian and one US cancer centre participated. Results: Most endorsed the entire question prompt list, though a minority queried the utility/appropriateness of some questions. Analysis identified four global themes: (1) reinforcement of known benefits of question prompt lists, (2) appraisal of content and suggestions for further developments, (3) perceived benefits and challenges in using the question prompt list and (4) contrasts in Australian/US feedback. These contrasts necessitated distinct Australian/US final versions of the question prompt list. Conclusions: Participants endorsed the question prompt list as acceptable and useful. Feedback resulted in two distinct versions of the question prompt list, accommodating differences between Australian and US approaches to end-of-life discussions, highlighting the appropriateness of tailoring communication aides to individual populations.

Discussing prognosis and end-of-life care in the final year of life: a randomised controlled trial of a nurse-led communication support programme for patients and caregivers

Introduction 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. Methods and analysis 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, communication challenges, patient values and concerns and the value of early discussion of end-of-life issues. Oncologists are also cued to endorse patient and caregiver question asking and use of the QPL. Behavioural and self-report data will be collected from patients/caregivers approximately quarterly for up to 2.5 years or until patient death, after which patient medical records will be examined. Analyses will examine the impact of the intervention on patients’ and caregivers’ participation in medical consultations, their self-efficacy in medical encounters, quality-of-life, end-of-life care receipt and quality-of-death indicators. Ethics and dissemination Approvals have been granted by the human ethics review committee of Royal Prince Alfred Hospital and governance officers at each participating site. Results will be reported in peer-reviewed publications and conference presentations. Trial registration number Australian New Zealand Clinical Trials Registry ACTRN12610000724077.

Insights from cancer patient communication research

Good communication skills are essential for all aspects of patient care in a palliative setting. A considerable body of evidence has accrued in the general oncology literature concerning doctor-patient and doctor-doctor communication. Many of the models and methods explored in the oncology setting may be applied usefully to palliative care; however palliative care is unique in some aspects and has its own particular challenges. Further evidence is needed to guide palliative care and other health care professionals in communicating effectively and sensitively with palliative care patients while holding a balance between telling the truth and maintaining hope.