Uncertainty in the Context of End-of-life Communication in Heart Failure (original) (raw)
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BMC Palliative Care, 2016
Background: This article reports on the concept of "communicating prognostic uncertainty" which emerged from a mixed methods survey asking family members to rank their satisfaction in seven domains of hospital end-of-life care. Methods: Open-ended questions were embedded within a previously validated survey asking family members about satisfaction with end-of-life care. The purpose was to understand, in the participants' own words, the connection between their numerical rankings of satisfaction and the experience of care. Results: Our study found that nearly half of all family members wanted more information about possible outcomes of care, including knowledge that the patient was "sick enough to die". Prognostic uncertainty was often poorly communicated, if at all. Inappropriate techniques included information being cloaked in confusing euphemisms, providing unwanted false hope, and incongruence between message and the aggressive level of care being provided. In extreme cases, these techniques left a legacy of uncertainty and suspicion. Family members expressed an awareness of both the challenges and benefits of communicating prognostic uncertainty. Most importantly, respondents who acknowledged that they would have resisted (or did) knowing that the patient was sick enough to die also expressed a retrospective understanding that they would have liked, and benefitted, from more prognostic information that death was a possible or probable outcome of the patient's admission. Family members who reported discussion of prognostic uncertainty also reported high levels of effective communication and satisfaction with care. They also reported long-term benefits of knowing the patient was sick enough to die. Conclusion: While a patient who is sick enough to die may survive to discharge, foretelling with family members in potential end of life contexts facilitates the development of a shared and desired prognostic awareness that the patient is nearing end of life.
“I was told that I would not die from heart failure”: Patient perceptions of prognosis communication
Applied Nursing Research, 2018
Aim and objectives: To describe patients' experiences of communication about their heart failure prognosis and explore how these experiences affected their preferences for future communication about the prognosis. Background: Professionals need to discuss about the heart failure prognosis with patients in order to improve their understanding of their illness and address palliative care needs. Methods: An inductive and exploratory design was used. A total of 24 patients (75% men, 52-87 years of age) in New York Heart Association class I-III from primary outpatient care participated in focus group-, or individual semi-structured interviews. Thematic analysis was used to identify and interpret patterns in the data. Findings: Two overarching themes, "The message sent" and "Hoping for the best or preparing for the worst", each with three sub-themes, were discovered during the thematic analysis. Many patients described that professionals had not provided them with any prognosis information at all. Other patients described professional information about prognosis that was given in an either very optimistic or very negative way. However, patients also described situations where professionals had given information in a way that they thought was perfect for them to handle, and in accordance with their preferences. Conclusion: This study shows that patients have different experiences and preferences for communication about prognosis and uses different approaches in order to cope living with a chronic illness such as heart failure.
BMC Palliative Care, 2019
BackgroundEffective communication is integral to the delivery of goal-concordant care for older adults and their family caregivers, and yet, it is uncommon in people with serious illness. This study explores the challenges of integrating end-of-life communication into heart failure management from the perspectives of older adults and family caregivers.MethodsIn a qualitative study of older adults with heart failure and their family caregivers, fourteen semi-structured interviews were conducted with 19 participants in Ontario, Canada. The interviews were transcribed verbatim and thematic analysis was applied to analyze the data.ResultsFour themes were identified in the context of participants’ understanding of illness: 1) trivializing illness-related challenges, 2) positivity in late life, 3) discomfort in having end-of-life conversations, and 4) reluctant to engage despite need. These challenges often intertwine with one another. Most participants had not engaged in end-of-life disc...
Journal of Clinical Oncology, 2010
Purpose Physicians have an ethical obligation to honor patients' values for care, including at the end of life (EOL). We sought to evaluate factors that help patients to receive care consistent with their preferences. Methods This was a longitudinal multi-institutional cohort study. We measured baseline preferences for life-extending versus symptom-directed care and actual EOL care received in 325 patients with advanced cancer. We also measured associated sociodemographic, health, and communication characteristics, including EOL discussions between patients and physicians. Results Preferences were assessed a median of 125 days before death. Overall, 68% of patients (220 of 325 patients) received EOL care consistent with baseline preferences. The proportion was slightly higher among patients who recognized they were terminally ill (74%, 90 of 121 patients; P = .05). Patients who recognized their terminal illness were more likely to prefer symptom-directed care (83%, 100 of 121 pa...
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.
Facilitating End-of-Life Decision-Making: Strategies for Communicating and Assessing
Journal of Gerontological Nursing, 2000
End-of-life decision-making is often a difficult process and one that many elderly patients and their families will undergo. The grounded theory study of nurses, physicians, and family members (n = 20) reported in this article examined provider behaviors that facilitated the process of decision-making near the end of patients' lives. According to participants, providers who are experienced and comfortable are more likely to engage in communication and assessment strategies that facilitate end-of-life decision-making. Communication strategies included: being clear, avoiding euphemisms, spelling out the goals and expectations of treatment, using words such as "death" and "dying," and being specific when using such words as "hope" and "better." Assessment strategies included: assessing patients' physical conditions and end-of-life wishes, patients' and family members' understandings of the disease and prognosis, and their expectations and goals. An important first step for improved care is making explicit the provider's communicating and assessing strategies that facilitate end-of-life decision-making.
Health Communication, 1997
Background: Therapies to prolong life and improve quality of life for heart failure (HF) have expanded in both number and complexity. Clinicians, patients, and families are faced with an array of decisions about interventions with complex risks and benefits. Physicians must also discuss prognosis of HF and its inherent uncertainties. Methods and Results: This article applies knowledge of participatory decision-making and communication about prognosis from other health care settings to HF care. Strategies should generally follow an ''ask-tell-ask'' format, beginning with a patient's understanding of his or her HF, identifying the information a patient desires, and then giving them small amounts of information at any given time, asking for feedback to clarify understanding. Conclusions: Despite the inherent uncertainty in individual outcomes with heart failure, physicians should discuss prognosis as desired by the patient or as needed to plan care, particularly when anticipated survival is shorter than 1 year. Exploring and reflecting patient responses and attending to their emotions can decrease patient anxiety and promote shared decision-making. (J Cardiac Fail 2008;14:106e113)
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.
Increasing Comfort With End-of-Life Discussions
2015
End-of-life discussions and advanced care planning are part of the healthcare process, and within the scope of practice for providers. Despite the evidence supporting the effectiveness of these conversations, the system falls short. Talking about death is never easy. At times, it is difficult for healthcare providers to approach the topic with patients who are living with serious life-limiting illness. Reports in the end-of-life literature reveal that healthcare professionals avoid discussions about preparations for end-of-life care due to feeling unprepared, and a lack of framework for such discussions. Purpose: The purpose of this doctoral project was to improve the quality of end-of-life care for patients with life-limiting illnesses by increasing provider comfort with end-of-life conversations. Method: This project was a Quazi-experimental pre and post intervention design. A preintervention baseline assessment of healthcare providers comfort with end-of-life discussions through a self-assessment survey and retrospective chart audits was conducted. An educational intervention was completed implementing an evidenced-based tool to guide end-of-life discussions. Healthcare providers were instructed to utilize the tool for sixty days to guide them in end-of-life discussions on appropriate patients. Post intervention data was collected to include a repeat of the self-assessment survey and retrospective chart audits to determine changes in comfort level. Conclusion: Providers reported increases in level of comfort and demonstrated an increase in conversations from baseline.