Does Disclosure of Terminal Prognosis Mean Losing Hope? Insights from Exploring Patient Perspectives on Their Experience of Palliative Care Consultations

Kogan, Alexis Coulourides; Penido, Marcia; Enguídanos, Susan

doi:10.1089/jpm.2015.0038

Cited by 23 publications

(20 citation statements)

References 31 publications

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“…Knowing about what patients do expect from a good palliative care physician as shown by our findings is very important. It should further encourage healthcare professionals in helping to alleviate patient’s fears by taking time, listening, communicating openly and in this way make it possible for the patients to redefine their hope on a goal other than cure [ 45 ]. Being compassionate, empathetic and attentive while interacting with patients and their caregivers should be regarded as a clinical skill and may be interpreted as a medical attitude.…”

Section: Discussionmentioning

confidence: 99%

What Makes a Good Palliative Care Physician? A Qualitative Study about the Patient’s Expectations and Needs when Being Admitted to a Palliative Care Unit

et al. 2016

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ObjectiveThe aims of the study were to examine a) patients’ knowledge of palliative care, b) patients’ expectations and needs when being admitted to a palliative care unit, and c) patient’s concept of a good palliative care physician.MethodsThe study was based on a qualitative methodology, comprising 32 semistructured interviews with advanced cancer patients admitted to the palliative care unit of the Medical University of Vienna. Interviews were conducted with 20 patients during the first three days after admission to the unit and after one week, recorded digitally, and transcribed verbatim. Data were analyzed using NVivo 10 software, based on thematic analysis enhanced with grounded theory techniques.ResultsThe results revealed four themes: (1) information about palliative care, (2) supportive care needs, (3) being treated in a palliative care unit, and (4) qualities required of palliative care physicians. The data showed that patients lack information about palliative care, that help in social concerns plays a central role in palliative care, and attentiveness as well as symptom management are important to patients. Patients desire a personal patient-physician relationship. The qualities of a good palliative care physician were honesty, the ability to listen, taking time, being experienced in their field, speaking the patient’s language, being human, and being gentle. Patients experienced relief when being treated in a palliative care unit, perceived their care as an interdisciplinary activity, and felt that their burdensome symptoms were being attended to with emotional care. Negative perceptions included the overtly intense treatment.ConclusionsThe results of the present study offer an insight into what patients expect from palliative care teams. Being aware of patient’s needs will enable medical teams to improve professional and individualized care.

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Section: Discussionmentioning

confidence: 99%

What Makes a Good Palliative Care Physician? A Qualitative Study about the Patient’s Expectations and Needs when Being Admitted to a Palliative Care Unit

et al. 2016

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“…Engaging in advanced care planning increases the patients knowledge without diminishing hope, increasing hopelessness, nor inducing anxiety in patients with advanced cancer [ 59 ]. The disclosure of a terminal prognosis does not mean loss of patient hope: Instead, hope was redefined on a goal other than cure [ 60 ]. In pediatrics, there is no evidence that prognostic disclosure makes parents less hopeful.…”

Section: Common Myths and Misconceptions In Pediatric Palliative Cmentioning

confidence: 99%

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

Friedrichsdorf

Bruera

2018

Children

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Among the over 21 million children with life-limiting conditions worldwide that would benefit annually from a pediatric palliative care (PPC) approach, more than eight million would need specialized PPC services. In the United States alone, more than 42,000 children die every year, half of them infants younger than one year. Advanced interdisciplinary pediatric palliative care for children with serious illnesses is now an expected standard of pediatric medicine. Unfortunately, in many institutions there remain significant barriers to achieving optimal care related to lack of formal education, reimbursement issues, the emotional impact of caring for a dying child, and most importantly, the lack of interdisciplinary PPC teams with sufficient staffing and funding. Data reveals the majority of distressing symptoms in children with serious illness (such as pain, dyspnea and nausea/vomiting) were not addressed during their end-of-life period, and when treated, therapy was commonly ineffective. Whenever possible, treatment should focus on continued efforts to control the underlying illness. At the same time, children and their families should have access to interdisciplinary care aimed at promoting optimal physical, psychological and spiritual wellbeing. Persistent myths and misconceptions have led to inadequate symptom control in children with life-limiting diseases. Pediatric Palliative Care advocates the provision of comfort care, pain, and symptom management concurrently with disease-directed treatments. Families no longer have to opt for one over the other. They can pursue both, and include integrative care to maximize the child’s quality of life. Since most of the sickest children with serious illness are being taken care of in a hospital, every children’s hospital is now expected to offer an interdisciplinary palliative care service as the standard of care. This article addresses common myths and misconceptions which may pose clinical obstacles to effective PPC delivery and discusses the four typical stages of pediatric palliative care program implementation.

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“…The barriers in initiating EOL discussions are well described. These are, for example, lack of competencies of HPs [ 10 ]; underestimating the need for information [ 11 ]; and the fear of taking away the patient’s hope [ 12 ]. This may result in a late initiation of EOL conversations.…”

Section: Introductionmentioning

confidence: 99%

Talking about death and dying in a hospital setting - a qualitative study of the wishes for end-of-life conversations from the perspective of patients and spouses

2020

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Background End-of-life (EOL) conversations are highly important for patients living with life-threatening diseases and for their relatives. Talking about the EOL is associated with reduced costs and better quality of care in the final weeks of life. However, there is therefore a need for further clarification of the actual wishes of patients and their relatives concerning EOL conversations in an acute hospital setting. Aim The purpose of this study was to explore the wishes of patients and their relatives with regard to talking about the EOL in an acute hospital setting when living with a life-threatening disease. Methods This study is a qualitative study using semi-structured in-depth interviews. A total of 17 respondents (11 patients and six spouses) participated. The patients were identified by the medical staff in a medical and surgical ward using SPICT™. The interview questions were focused on the respondents’ thoughts on and wishes about their future lives, as well as on their wishes regarding talking about the EOL in a hospital setting. Results This study revealed that the wish to talk about the EOL differed widely between respondents. Impairment to the patients’ everyday lives received the main focus, whereas talking about EOL was secondary. Conversations on EOL were an individual matter and ranged from not wanting to think about the EOL, to being ready to plan the funeral and expecting the healthcare professionals to be very open about the EOL. The conversations thus varied between superficial communication and crossing boundaries. Conclusion The wish to talk about the EOL in an acute hospital setting is an individual matter and great diversity exists. This individualistic stance requires the development of conversational tools that can assist both the patients and the relatives who wish to have an EOL conversation and those who do not. At the same time, staff should be trained in initiating and facilitating EOL discussions.

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Does Disclosure of Terminal Prognosis Mean Losing Hope? Insights from Exploring Patient Perspectives on Their Experience of Palliative Care Consultations

Cited by 23 publications

References 31 publications

What Makes a Good Palliative Care Physician? A Qualitative Study about the Patient’s Expectations and Needs when Being Admitted to a Palliative Care Unit

What Makes a Good Palliative Care Physician? A Qualitative Study about the Patient’s Expectations and Needs when Being Admitted to a Palliative Care Unit

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

Talking about death and dying in a hospital setting - a qualitative study of the wishes for end-of-life conversations from the perspective of patients and spouses

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