Physical Symptoms at the Time of Dying Was Diagnosed: A Consecutive Cohort Study To Describe the Prevalence and Intensity of Problems Experienced by Imminently Dying Palliative Care Patients by Diagnosis and Place of Care

Clark, Katherine; Connolly, Alanna M; Clapham, Sabina P; Quinsey, Karen; Eagar, Kathy; Currow, David C.

doi:10.1089/jpm.2016.0219

Cited by 32 publications

(25 citation statements)

References 36 publications

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“…The main conclusion was that the symptoms most likely to be bothersome for dying patients were shortness of breath and pain. More recently, the experiences of 18,975 dying patients under the direct or indirect care of hospice/palliative care services were examined with the significant majority of this group ( n = 14,238) dying of cancer [ 11 ]. Nearly 50% ( n = 5095) of this cohort had pain that was assessed as requiring attention (i.e., pain scores > 3) but only 4.4% were assessed as experiencing severe pain.…”

Section: Symptoms In the Terminal Phase Of Lifementioning

confidence: 99%

Care at the Very End-of-Life: Dying Cancer Patients and Their Chosen Family’s Needs

Clark

2017

Cancers

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The majority of cancer deaths in countries such as Australia are predictable and most likely to occur in hospital. Despite this, hospitals remain challenged by providing the best care for this fragile cohort, often believing that care with palliative intent at the very end-of-life is not the best approach to care. Given the importance that dying patients place on excellent symptom control, failing to provide good end-of-life care is likely to be contrary to the wishes of the imminently dying patient and their family. This becomes even more significant when the impact of care on the bereavement outcomes of families is considered. Given the rising numbers of predicable hospital deaths, an urgent need to address this exists, requiring health professionals to be cognisant of specific care domains already identified as significant for both patients and those closest to them in knowledge, care and affection. This non-systematic review’s aims are to summarise the symptoms most feared by people imminently facing death which is defined as the terminal phase of life, where death is imminent and likely to occur within hours to days, or very occasionally, weeks. Further, this paper will explore the incidence and management of problems that may affect the dying person which are most feared by their family. The final section of this work includes a brief discussion of the most significant issues that require attention.

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Section: Symptoms In the Terminal Phase Of Lifementioning

confidence: 99%

Care at the Very End-of-Life: Dying Cancer Patients and Their Chosen Family’s Needs

Clark

2017

Cancers

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“…An important role of PCOC is to report on this repository of prospectively collected information. Previously, PCOC researchers have found that palliative care services achieve statistically significant improvements in pain and other symptoms2 and have described symptom prevalence at the time dying is diagnosed 3. In those previous studies, the palliative care phase2 3 was the unit of counting with the outcome being the change from the beginning to the end of each phase.…”

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Palliative care is effective: but hospital symptom outcomes superior

Eagar

Clapham

Allingham

2018

BMJ Support Palliat Care

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“…Despite continuing advances in the field of palliative care, symptoms such as pain and breathlessness remain at the forefront of the concerns of clinicians, patients and families [ 11 ]. Poorly controlled symptoms have been documented in patients with malignant and non-malignant conditions [ 35 – 37 ], which was reflected in this supplementary analysis.…”

Section: Discussionmentioning

confidence: 76%

Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of patients’, carers’ and health professionals’ experiences and further research questions

et al. 2018

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BackgroundSymptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients’ symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives’ distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition.MethodsThe PeolcPSP data (n = 1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke’s approach.ResultsFive themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary.ConclusionsThis study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families.Electronic supplementary materialThe online version of this article (10.1186/s12904-018-0314-4) contains supplementary material, which is available to authorized users.

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Physical Symptoms at the Time of Dying Was Diagnosed: A Consecutive Cohort Study To Describe the Prevalence and Intensity of Problems Experienced by Imminently Dying Palliative Care Patients by Diagnosis and Place of Care

Cited by 32 publications

References 36 publications

Care at the Very End-of-Life: Dying Cancer Patients and Their Chosen Family’s Needs

Care at the Very End-of-Life: Dying Cancer Patients and Their Chosen Family’s Needs

Palliative care is effective: but hospital symptom outcomes superior

Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of patients’, carers’ and health professionals’ experiences and further research questions

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