2020; Volume 21, No 6, June


Surveys to Assess Palliative Care during COVID-19

IAHPC survey aims to support future advocacy

On May 28, IAHPC sent a short online survey to members to help us understand how the pandemic is affecting palliative care provision and providers, to help support future advocacy. The survey addresses the following questions.

If you have received the survey, please take a few moments to complete it. We will report the results once compiled.

CovPall survey

CovPall is a project initiated by the Cicely Saunders Institute at King’s College London to shed light on how palliative care services and hospices are responding to the COVID-19 pandemic, problems faced by services, patients and families/those affected by COVID-19 and how to best respond.

The CovPall international, electronic survey is for those providing palliative care in any setting (such as hospices, palliative care units, acute hospitals, and community and home settings), including both adult and children’s services. “The aim is to map and understand the response of specialist palliative care providers and hospices to COVID-19 including their workforce and volunteer deployment, service and technology innovations, clinical policies and practices, challenges and successes.”

Although this survey is being sent to the Institute’s partners, the Institute welcomes wider participation. If you wish to participate, email [email protected], putting “CovPall” in the subject line.

Learn more about the Cecily Saunders Institute at King’s College London in the IAHPC Global Directory of Palliative Care Institutions.

Plus, a Spiritual Health Survey

An international research group, led by the European Research Institute for Chaplains in Health Care, has created a survey to investigate the impact of COVID-19 on the practice of spiritual care practitioners, chaplains, and pastoral care workers in health care systems worldwide. It also gathers information on changes that may lead to new models of practice.

The June 7 deadline is flexible. If you wish to participate, please send your responses as soon as possible after that date. The survey takes an estimated 20-30 minutes to complete and is available here.

Global Palliative Care in the COVID-19 Pandemic Series: June webinars

The ongoing series of COVID-19 and palliative care informational webinars (#pccovidwebinar) is now taking place on Thursdays, instead of Fridays, to allow for religious observances. The series will end in July. Upcoming webinars are:

To be notified about all of the webinars, simply subscribe to this newsletter. All uploaded webinars and associated slides can be viewed here.

The webinars and companion briefing notes are a collaboration between IAHPC, the International Children’s Palliative Care Network, Palliative Care in Humanitarian Aid Situations, and the Worldwide Hospice Palliative Care Alliance.

Learn more about the International Children’s Palliative Care Network, and the Worldwide Hospice Palliative Care Alliance in the IAHPC Global Directory of Palliative Care Institutions.

COVID-19 Briefing Notes Add Depth to Webinars

The webinars have proven popular, and those seeking greater depth on any topic covered can refer to the detailed briefing notes that accompany each. Below is information about four webinars in May, with links to each full-length video as well as all corresponding briefing notes.

Clinical and Prevention Aspects in COVID-19 (video: May 1 webinar)

Dr. Lukas Radbruch discussed treatment of typical symptoms such as dyspnea (breathlessness), cough, weakness and fever, as well as anxiety, panic, restlessness, and delirium. Dr. Dingle Spence discussed delivery and continuity of palliative care for patients with cancer in low- and middle-income countries with resource-constrained health systems in the context of the COVID-19 pandemic.

Briefing notes:

Caring for Children with Underlying Serious Health Conditions (video: May 8 webinar)

Pediatric palliative care experts discussed the effects of COVID-19 on children with underlying serious health conditions, as well as on their caregivers, and proposed effective responses.

Briefing notes:

Suffering in Isolation & Grief/Bereavement (video: May 15 webinar)

Discussed the isolation that deprives COVID-19 patients in intensive or palliative care, patients suffering in isolation in home settings, and associated family members of the support and human connection they need to manage the psychological impact of severe or refractory infection and end-of-life anxieties. Families deprived of adequate farewells may face complicated bereavement. Experts proposed ways to manage these challenging situations.

Briefing notes:

Older Persons and COVID-19 (video: May 21 webinar)

Discussed how older persons with COVID-19 are bearing the brunt of the global pandemic, and the fact that, although palliative care is recognized as a component of the right to health, older persons, especially those with nonmalignant conditions and living in resource-poor areas, have less access to palliative care than the general population. This webinar included the participation of the Independent Expert on the Rights of Older Persons.

Briefing notes:

Prof. Julia Downing, editor of the manual.

Case-Based Manual for Global
Children’s Palliative Care is a First

Children’s Palliative Care: An International Case-Based Manual is the first case-based manual on global children’s palliative care. Published in April, the manual enables individuals working in CPC to learn through engaging, relevant, real-world cases from around the world.

“There is also a dearth of literature on CPC, hence this clinical case-based manual fills a knowledge gap, and is a unique text in the field,” says editor Julia Downing, Chief Executive of the International Children’s Palliative Care Network, which endorsed and promoted the 290-page book — available in softcover ($59.99USD, €48.87), as an e-book ($44.99USD, €39.58), or by chapter ($29;95USD).

Key issues and elements of CPC are reflected in case histories, providing a practical approach grounded in experience. The manual addresses multidisciplinary care management of children and their families; discusses cases from an international perspective; and shares examples using cases across a range of ages and conditions, demonstrating holistic care.

A study published online by Wellcome Open Research in May determined that, in 2017:

Global development of children’s palliative care: The picture in 2017

More than 65% of countries have no recognized CPC service provision whatsoever. “While an estimated 21.6 million children require palliative care, in many areas of the world, CPC is poor or nonexistent, and children are treated like little adults without their distinctive needs being recognized or understood.”

3 chapters free to download

Each chapter preview shows key learning points and describes a case study. Three of the chapters are currently free to download as pdfs: The Need for and Gaps in Provision of Children’s Palliative Care Globally; Collaborative Working and Use of National, Regional and International Networks; and Universal Health Coverage and Serious Health-related Suffering: A Case for Children and Young People, coauthored by Dr. Downing, Pallium India’s M.R. Rajagopal, IAHPC executive-director Lilliana de Lima, and Felicia Knaul, IAHPC board member and lead author of the Lancet Commission on Palliative Care and Pain Relief report.

IAHPC members can help support the organization when buying through AmazonSmile; ICPCN members are eligible for a 20% discount.

Learn more about the International Children’s Palliative Care Network and Pallium India in the IAHPC Global Directory of Palliative Care Institutions.

Updated WHO Clinical Guidance on COVID-19
Includes a Module on Palliative Care

On May 27, the World Health Organization released an updated version of its Clinical Management of COVID-19 - interim guidance. This 62-page guidance, free to download, is intended for clinicians caring for patients during all disease phases, from screening to discharge for those who survive, and to death for those who do not.

The new palliative care module recommends, among other things that, "Palliative care interventions should be made accessible at each institution that provides care for persons with COVID-19." The module is followed by "Ethical considerations that affect all persons affected by COVID-19."

According to the WHO, “This update has been expanded to meet the needs of frontline clinicians and promotes a multidisciplinary approach” for patients with COVID-19. “The following sections are entirely new: COVID-19 care pathway, treatment of acute and chronic infections, management of neurological and mental manifestations, noncommunicable diseases, rehabilitation, palliative care, ethical principles, and reporting of death; while previous chapters have also been significantly expanded.”

Journal Publishes Article on IAHPC Consensus Definition

In January 2019, IAHPC released the new consensus definition of palliative care. On May 6, 2020, the Journal of Pain and Symptom Management published an article about the definition titled “Redefining Palliative Care – a New Consensus-Based Definition.”

IAHPC undertook “to find consensus on a definition that focuses on the relief of suffering; and one that is also timely and applicable to all patients regardless of diagnosis, prognosis, geographic location, point of care, or income level.” Lead author was Dr. Lukas Radbruch, Chair of the IAHPC Board, supported by 38 palliative care experts from countries of all income levels.

The definition is available in 15 languages: Arabic, Chinese, Dutch, English, Estonian, French, German, Greek, Indonesia (Bahasa), Italian, Japanese , Portuguese (Brazilian), Portuguese (European), Russian, and Spanish.

COVID-19 is changing what we value as a society – we are redefining the meaning of “community,” realizing that we cannot get through difficult times on our own... IFIC (International Foundation for Integrated Care) proposes nine building blocks to help steer health and care system leaders towards a radically different future where we as one team, one system can achieve a stronger and more resilient society.

— L Lewis, N Ehrenberg. Realising the True Value of Integrated Care: Beyond COVID-19,
May 2020.

What's New in Pallipedia

Not surprisingly, this month’s 14 new terms include three for COVID-19 and others related to the pandemic.

Do you have any questions regarding Pallipedia, or suggestions for new terms or definitions?

Contact Roberto Wenk

What’s New in the IAHPC Calendar

Abordaje del Dolor de Difícil Manejo en Pacientes Con Cáncer. Online course. June 17, 2020.
Foro de la Salud y la Cuestión Social: Efectos Económicos de la Pandemia. Online forum. June 16, 2020.

Palliative Care in the Time of COVID-19. Webinar. June 7, 2020.

1st National Conference of Paediatric Palliative Care Malaysia (NCCPCM) 2020. Postponed to March 24-26, 2021.

United Kingdom
St. Christopher's Virtual Learning offers “bite-size” online sessions:
Advance Care Planning for Older People with Frailty. Virtual Learning. Free until June 30, 2020. London.
Care After Death – A Useful Guide for Care Homes.  Virtual Learning. Free until June 30, 2020. London.
Terminal Agitation. Virtual Learning. June 1-30, 2020. London.  
The Importance of Spirituality for People at the End of Life. Virtual Learning. Free until June 30, 2020. London.
Finding Your Balance – Wellbeing, Resilience and Self Care. Virtual Learning. Free until June 30, 2020. London.

2020 National Hospice and Palliative Care Organization (NHPCO) Virtual Conference. “Quality of Care = Quality of Life.” July 22-23, 2020.

Find a workshop, seminar, congress, or conference to interest you in the IAHPC Calendar of Events, updated monthly, that lists activities of special interest to those who work in palliative care. Or submit an event for consideration; it’s free!

Do you have any questions regarding the IAHPC Calendar of Events?

Contact Ms. Julia Libreros

Each month, we publish items that may be of interest to our global readership. Submit your contribution.

Please also consider promoting your education and training events in the IAHPC Global Directory of Education in Palliative Care. It’s quick and easy — just submit your content online.

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