Palliative Care and Human Rights: A Decade of Evolution in Standards

Ezer, Tamar; Lohman, Diederik; Luca, Gabriela B. de

doi:10.1016/j.jpainsymman.2017.03.027

Cited by 24 publications

(15 citation statements)

References 1 publication

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“…Even in resource-limited health system settings, the Worldwide Palliative Care Alliance identifies early integration of palliative care as a human right for children. 19 The AAP summarized this initiative as follows: "The goal is to add life to the child's years, not simply years to the child's life." 20 In defining the scope and objectives of palliative care, it is vital to denote its varying degrees (Table I).…”

Section: Defining Palliative Carementioning

confidence: 99%

Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD

House

Wightman

2021

Kidney360

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Despite continued advances in medical treatment, pediatric chronic kidney disease (CKD) remains an unremitting, burdensome condition characterized by decreased quality of life and earlier death.(1-7) These burdens underscore the need for integration of pediatric palliative care (PPC) into nephrology practice. Pediatric palliative care is an evolving field which strives to 1) relieve physical, psychological, social, practical and existential suffering; 2) improve quality of life; 3) facilitate decision-making; and 4) assist with care coordination in children with life-threatening or life-shortening conditions.(8) Integration of palliative care into routine care has already begun for adults with kidney disease and children with other chronic diseases, yet, similar integration has not occurred in pediatric nephrology.(9,10) This review serves to provide a comprehensive definition of PPC, highlight the unmet need in pediatric nephrology and current integration efforts, discuss the state of palliative care in adult nephrology and analogous chronic pediatric disease states, and finally to introduce future opportunities for study.

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Section: Defining Palliative Carementioning

confidence: 99%

Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD

House

Wightman

2021

Kidney360

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“…An ongoing issue for both cancer and palliative care is that access to care should be a human right [23,24]. In 2017, the Uganda Human Rights Commission (UHRC) monitored and reported on the right to palliative care in the Annual Report to the Speaker of Parliament of Uganda [25].…”

Section: Human Rights and Engagement On The Implementation Of The Recmentioning

confidence: 99%

Towards universal coverage—highlights from the 2nd Uganda Conference on Cancer and Palliative Care, 5–6 September 2019, Kampala, Uganda

Downing

Niyonzima

Guma³

et al. 2019

ecancer

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The 2nd Uganda Conference on Cancer and Palliative Care was held in September 2019 in Kampala, Uganda under the theme: Towards Universal Coverage. It was hosted by the Uganda Cancer Institute and the Palliative Care Association of Uganda (PCAU). The conference brought together 350 delegates from eight countries. Key themes from the conference included: universal health coverage (UHC), service provision and public health; resources for achieving UHC; capacity building; human rights and engagement on the implementation of the recommendations made by the Uganda Human Rights Commission; provision of cancer and palliative care to 'hard to reach' and 'vulnerable' groups; paediatrics; health promotion and prevention; policy and advocacy and digital technology. The conference also gave opportunity to celebrate the 20th Anniversary of the work of PCAU, with a celebration dinner attended by the Minister of Health. The past few years have seen significant developments in both cancer and palliative care in Uganda, and this was evident in the presentations, and the way that provision has changed and improved since the first cancer and palliative care conference in 2017. Emphasis on UHC, along with the support of government and other stakeholders, is important in the ongoing development of cancer and palliative care services in Uganda.

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“…Advanced cancer and other life-limiting illnesses can cause overwhelming suffering in patients and families demanding not only medical expertise but also support for the psychological, social, emotional, and spiritual distress throughout the disease trajectory [1]. Palliative care (PC), identi ed as a fundamental human right [2][3][4], is an approach to care that improves the quality of life of patients and families through the prevention and relief of suffering [5]. Provided across health care settings, PC is patient-and family-focussed, based on ethical principles, shared decision making, advanced care planning and excellent symptom management [6].…”

Section: Introductionmentioning

confidence: 99%

Palliative Care Needs among Patients with Advanced Illnesses in Bhutan

Laabar

Saunders

Auret

et al. 2020

Preprint

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Background Palliative care improves the quality of lives of patients and families affected by life-limiting illnesses through the prevention and relief of suffering. While palliative care is well established in developed countries, it is inadequate or non-existent in most developing countries. Palliative care is an emerging concept in Bhutan, a tiny Himalayan Kingdom. A small community palliative care service is available in the national referral hospital with three dedicated inpatient palliative care beds. This study explored the needs for palliative care among patients diagnosed with advanced illnesses and is a component of a larger project aimed to inform a suitable palliative care model for the country.Methods This is a cross-sectional descriptive study. A survey, using a structured questionnaire including the EORTC QLQ-C30, was carried out among patients with advanced illness in hospitals, primary care units and communities across the country. Purposeful and snowball sampling strategies were used to recruit study participants.Results Seventy (76%), out of 93 eligible patients, agreed to participate in the survey. Participants reported low to moderate scores on physical, role, emotional, cognitive and social functioning, a moderate score for the global health/ quality of life scale and moderately high (worse) scores in symptoms including fatigue, pain, insomnia, loss of appetite and the financial impact from the disease.Conclusions The symptom burden experienced by patients affected by terminal and advanced illnesses demonstrates the need for palliative care in Bhutan. These findings will help inform the development of a public health-focused palliative care model, modified to the Bhutanese context, as recommended by the World Health Organization.

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Palliative Care and Human Rights: A Decade of Evolution in Standards

Cited by 24 publications

References 1 publication

Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD

Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD

Towards universal coverage—highlights from the 2nd Uganda Conference on Cancer and Palliative Care, 5–6 September 2019, Kampala, Uganda

Palliative Care Needs among Patients with Advanced Illnesses in Bhutan

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