2018; Volume 19, No 9, September

Announcements & Resources

Each month, we publish a selection of items that may be of interest to our global readership. Contributions are welcomed; we reserve the right to edit content.

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.

Announcements

New, Improved Ehospice Website

The new improved ehospice website is now live! Visit www.ehospice.com to find ‘News, Views & Inspiration from Around the World,’ including the latest international hospice and palliative care news.

Visitors can choose between multiple editions: International, International Children’s, Africa or South Africa, Canada (English or French), Ireland, Kenya, U.K., and U.S.A.

If you have any news that you would like to share, please email Kate Jackson directly at [email protected]. To give you a taste of the new website, the following four announcements were culled from it. Read them in their entirety here.

Zimbabwe First to Validate IAPOS Tool

By Mildred Bosha, Clinical Social Worker & IAPOS Coordinator

In March 2017, Island Hospice and Healthcare – in partnership with Professor Richard Harding at Kings College London – began a study to measure the extent to which the Integrated African Palliative Care Outcome Scale (IAPOS) tool can be an effective instrument used in Zimbabwe to measure a patient’s physical symptoms as well as psychological, emotional, and spiritual outcomes.

With more than 14,500 patients seen at Island in 2017, the organization was keen to assess whether the tool would support clinical teams in providing care to patients facing a life-threatening condition and their families. The study, conducted in Greater Harare and Chitungwiza, targeted 170 new patients. The tool was administered to every adult facing life-limiting or life-threatening illnesses.

Island Hospice & Healthcare has found the IAPOS to be invaluable, and is at present brainstorming how to integrate the tool fully in its work.

Launch of Online Learning for PC Graduate Certificate

St. Columba’s Hospice, Edinburgh, Centre for Education and Research in collaboration with Queen Margaret University have announced that as of autumn 2018 the modules for its Graduate Certificate in Palliative Care may be studied online, face-to-face, or a combination of the two.

These modules are at degree level and have been designed for registered health and social care professionals working in adult, children’s, or neonatal services located in hospital, community, care home, or hospice settings.

Having an online option allows greater flexibility to accommodate a busy work schedule and family life alongside studies, and the course is available whatever your geographical distance from St. Columba’s Hospice.

Details of this course, and others, are available on the St. Columba’s Hospice website.

Bangladesh Palliative Care Nurse Awards

The first four winners of the Bangladesh award for nursing excellence.

By Mobashshera Jannat Bithi, Project Coordinator and Pharmacist, Hospice Bangladesh

Last year, Aastha Hospice (a charity project of Hospice Bangladesh) with support of Hospice Bangladesh, initiated the ‘Farida Khanam Palliative Care Nurse Award’ to acknowledge nurses’ outstanding contribution to palliative care. Four nurses won the award.

In 2018 the nomination of this award was extended by involving more institutional and organizational nurses. To further involve community engagement in this award, the public was invited to name award categories in memory of a loved one.

The response from participants was excellent; several applied for the nomination, and 10 nurses were recognized for their exemplary contribution and devotion in palliative care. Each received award money, a crest, and certificate.

Slack Mobile App Now Includes Pediatric Care Providers

The Asia Pacific Hospice Palliative Care Network (APHN) is pleased to announce that the Paediatric Palliative Care Special Interest Group (PPC SIG) has created a networking space at Slack, a mobile app designed to link pediatric palliative care providers so that they can support each other, providing a community dedicated to serving children.

Providers can now connect with fellow workers on one discussion page, send direct messages to members, and even contact them by phone.

Slack supports multiple languages; just type a message in a language of your choice and see if anyone in the group replies! Interested pediatric palliative care practitioners are invited to sign up for an account at the APHN website. Only your email address is required.

Survey on Children’s Pain Management

Canada is a world leader in children’s pain research. Effective treatments exist. Yet Canadian children and their families continue to report undertreated and preventable pain with barriers to evidence uptake, such as a lack of accessible resources and training and failure of the public and institutions to recognize and prioritize pain management, according to organizers Christine Chambers and Doug Maynard.

Members of the Centre for Pediatric Pain Research in Canada have been working closely with the Canadian Association of Paediatric Health Centres (CAPHC) and many others across Canada and beyond, including the International Children’s Palliative Care Network (ICPCN), on a proposal to support a new network called ‘Solutions for Kids in Pain (SKIP).’

Anyone with an interest in children’s pain management is asked to please take five moments minutes to complete a 12-question online survey. Your feedback will be used to develop a network that will improve the way children’s pain is managed in Canada and internationally.

Call for Abstracts

The deadline for abstract submission for the 16th EAPC World Congress, ‘Global Palliative Care — Shaping the Future’, is 15 October 2018. The congress will be taking place in Berlin, Germany, 23-25 May 2018.

All abstracts must be submitted electronically; submit an abstract online here.

Plenary speakers will present on a range of topics including:

For the first time at an EAPC congress, there will be a Children’s Palliative Care Seminar. Registration is now open.

Listen Anytime to End-of-Life University Interviews

You can now listen to interviews immediately when you receive an email introducing End-of-Life University’s speaker for the day. There is no longer the need to wait for a specific broadcast time or for the replay to be sent.

Here is the link to listen to an interview with Melissa Unfred (aka the Modern Mortician) about Modern Funeral and Burial Trends, featuring more environmentally friendly burial options, and helping to arrange funerals for loved ones (including pets).


Reminder: Palliative Care Leadership Award

Leaders are of utmost importance for the development of palliative care worldwide. To underline this need and offer encouragement, the European Academy of Palliative Care (EUPCA) in collaboration with the European Association for Palliative Care (EAPC) has developed the Award for Palliative Care Leadership Programmes 2019.

They are ‘looking for leadership capacity building programmes worldwide that are striving to develop palliative care. These initiatives could take place in your hospice, hospital, or other palliative care institution.’

The deadline for applications is 4 November 2018. Find out more here; if you have questions, email [email protected].

Resources

New Guideline for Minimally Conscious, Vegetative States Released

Three specialty societies have published new practice guidelines for managing prolonged disorders of consciousness (DoC), focusing on accurate diagnosis, prognosis, and treatment.

The guidelines — issued by the American Academy of Neurology (AAN); the American Congress of Rehabilitation Medicine (ACRM); and the National Institute on Disability, Independent Living, and Rehabilitation Research — updates the 1994 AAN practice parameter on persistent vegetative state and a 2002 case definition for the minimally conscious state.

The AAN provides materials and tools for physicians, as well as materials and tools for patients.

‘A major motivation for the new guideline was that, since [publication of] the original guidelines, a lot of work has been done and it became clear that some of the recommendations we've been working from probably no longer hold true,’ lead author Joseph T. Giacino, PhD, director of Harvard Medical School’s Department of Physical Medicine and Rehabilitation, told Medscape Medical News.

‘Misdiagnosis [of DoC] is common because underlying impairments can mask awareness — in fact, there is a 40% rate of misdiagnosis, leading to inappropriate care decisions as well as poor health outcomes,’ he said.

A summary of the guideline, together with an accompanying literature review on which the guideline was based, was published online August 8 in Neurology.

The 18 practice recommendations in the guidelines cover:

Treatment setting

Recommendation 1 advises that care for patients with prolonged DoC (i.e., lasting ≥ 28 days) should be provided in a specialized setting and be managed by a multidisciplinary team of knowledgeable clinicians. The setting should be able to provide effective monitoring and rehabilitative care (level B evidence).

‘[A]n important call is to ensure that specialized people be involved in the diagnostic and treatment process,’ Giacino commented. He encouraged clinicians to move patients with DoC from acute care to a setting capable of providing surveillance by specialists.

Diagnostic approaches
Treatment of DoC in children

A section on ‘Care of children’ notes that ‘no evidence was identified regarding the diagnosis of children with prolonged DoC. In the absence of pediatric-specific evidence, it is reasonable to apply the diagnostic recommendations for adult populations that address the treatment of confounding conditions to improve diagnosis, the importance of increasing arousal prior to diagnostic assessments, using valid and reliable standardized behavioral assessments, and conducting serial assessments to children with DoC.’

Videos from the International Observatory on End of Life Care

A series of videos and presentations on seminars of interest to palliative care providers is freely available at Lancaster University’s website for the International Observatory on End of Life Care.

Recent topics include:

U.S. Standards of Practice for Hospice Programs updated

The U.S. National Hospice and Palliative Care Organization has issued a revised edition of its publication, Standards of Practice for Hospice Programs, now available as a free pdf download to its membership. Non-members will be able to purchase the Standards of Practice in downloadable format from the NHPCO Marketplace ‘in the near future.’

The Standards of Practice are organized around the core components of quality in hospice care, which provide a framework for developing and implementing Quality Assessment and Performance Improvement. Specific standards and practice examples are included for each component, and appendices provide additional standards for a hospice inpatient facility, nursing facility hospice care, and a hospice residential care facility.

This updated version of the Standards of Practice includes recent compliance and quality requirements such as emergency preparedness provisions. Change tables are also included that outline updates from the 2010 version, allowing hospice professionals to track changes.

‘These practice standards are invaluable tools that empower a hospice to self-assess the quality of its services, set programmatic benchmarks, and integrate into the hospice’s performance improvement activities,’ said NHPCO President and CEO Edo Banach.

Dates to Note

See the IAHPC Calendar of Events.

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