2018; Volume 19, No 4, April

Announcements, Resources & Dates to Note

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

WHPCA Grants for Palliative Care Direct Stakeholder Projects

On March 29, the Worldwide Hospice Palliative Care Alliance announced a call for proposals. Palliative care organizations and organizations comprised of people living with life-threatening illness, or organizations of older people, are eligible for a grant of up to $15,000 to fund a project to increase the voice of direct stakeholders to advance palliative care.

The WHPCA has set aside $60,000, or enough to fund four projects. Applicants must be from a low- or middle-income country. The deadline for applications is 17:00 GMT, 1 May 2018; decisions will be rendered by 16 May 2018.

The aim is to strengthen the voice of direct stakeholders in palliative care advocacy and increase their impact as advocates to improve access to quality palliative care. Direct stakeholders are defined as people who are currently living with conditions that require palliative care now, or may require it in the future, and those who are in older age and approaching the end of the life cycle.

The WHPCA knows that social justice movements led by people affected can result in dramatic social change, as was evident in the movement around increasing access to HIV treatment.

To shift the power to enable and strengthen the voice of people living with and affected by life-limiting illness on palliative care advocacy, the WHPCA grant program targets new and innovative advocacy and public engagement projects, led by — or in partnership with — direct stakeholders in low- and middle-income countries.

These grants could include, though are not limited to:

Applications must:

WHPCA will accept applications in partnership with carer and family member groups, but warns applicants to be aware that, in this grant round, preference will be given to applications involving direct stakeholders.

The application form, guidance and budget template can be found in this Google Docs folder or on the WHPCA website: Application Form, Application Guidance, Budget Template. Send completed applications to [email protected].

Dying2Learn about Palliative Care?

Dying2Learn is a Massive Open Online Course (MOOC) that runs for five weeks. Anyone can sign up for the 2018 edition of the course, which starts in May.

The course was developed by Care Search, an Australia-based ‘palliative care knowledge network.’ It is designed for the general public and directed at Australians, but is open to anyone. The goal is to build community awareness and foster social discussion about death and dying.

Dying2Learn will be run online via OpenLearning, a social online learning platform that delivers more than 1,500 MOOCs worldwide. Dying2Learn’s 2018 modules will be:

  1. How does today's society engage with death and dying? How do we use language to describe it?
  2. What does death 'look' like? How is death and dying portrayed in the media?
  3. If death is the problem, is medicine the answer? A look at what we die of, the role of medicine, and prolonging life versus prolonging death.
  4. Digital dying: death during the internet-age.

Dying2Learn ‘provides a rare opportunity to explore community views and attitudes around death and dying within a learning environment rather than a health context,’ according to an article published online in BMC Palliative Care in February (Tieman J, et al.). ‘Enrolment rates demonstrated significant community interest and willingness to participate. Those who enrolled in the course were generally active with large number of participants viewing pages and completing activities.

‘The group [of people] who chose to participate included a large cohort of health professionals and the whole cohort was comfortable talking about death and dying at commencement. Even so, and despite the ceiling effect, there was an increase in the comfort in talking about death and dying at the end of the course.’

2 Bursaries for Multi-Disciplinary Conference in England

‘Weaving Together Holistic Care at the End of Life’ is the theme of a multi-disciplinary conference being held in Leicestershire, England, from 12-14 October 2018. The conference is being organized by Hospice 23, a charitable organization formed to bring together sometimes isolated palliative care workers.

Applicants are invited to vie for two £800 bursaries that cover the £250 registration, with the rest applied to conference-related expenses, such as travel or accommodation. The conference aims to ‘enable, encourage, and empower’ those who work in palliative care. An ‘informative and clinical spiritual, reflective, and experiential’ experience is achieved by way of speaker-led presentations and small group discussions.

A downloadable form to apply for a bursary asks applicants to describe the organization they work with, their reason for wanting to attend, how they plan to share what they learn, and a detailed breakdown of the costs to attend and identification of other sources of funding, if any.

Zimbabwe Lawyers Provide Pro Bono Advice to Palliative Patients

By Eunice Garanganga (Director, HOSPAZ) and Fatia Kiyange (Programmes Director, APCA) for eHospice

Last fall, 40 lawyers from 16 law firms were sensitized as to legal issues involving palliative care patients in Harare, Zimbabwe. Nearly half signed up for more in-depth training. The lawyers then offered to visit patients and their families in and around Harare to have discussions that have led to concrete legal guidance.

A cross-section of patients’ needs addressed by the visiting lawyers include: inheritance, maintenance, succession, property grabbing, terminal benefits, eviction, school fees, and polygamous marriage issues.

All their work has been pro bono thanks, in large part, to the Open Society Initiative for Southern Africa, which provided funding to the African Palliative Care Association (APCA) and Hospice Palliative Care Association of Zimbabwe (HOSPAZ) to compensate the lawyers. In this, HOSPAZ has joined Kenya, Malawi, South Africa, and Uganda in implementing models for the integration of legal support for palliative care patients and their families to ensure their access to justice.

The WhatsApp messaging platform was valuable in coordinating lawyers’ visits to palliative care centers to meet with and support patients and family members. The platform was used to notify lawyers of identified legal issues of patients, and ascertain their availability to attend to the issues.

Some patients with unaddressed legal needs are hesitant to use legal services due to cultural issues and fear of retribution by family members or society. But with continued public education involving community leadership, this challenge is fast becoming a thing of the past.

This work in Zimbabwe is proving that legal support is an invaluable aspect of palliative care services. Its provision must be carefully and purposively planned for, in order for it to be effective.

Stepping Up for Women

Hundreds of participants turned out for a cancer walk in Kenya in February. Cervical cancer is one of the leading cancers in the country, according to the 2014 Kenya Demographic Health Survey. That year, there were 4,800 cases, causing 2,451 deaths. Since it began in 2013, this walk has helped raise the profile of cervical cancer prevention and action for early detection. More than 3,800 women in Kenya have benefitted directly from fundraising by receiving free, quality cervical cancer screening and clinical breast examination; more than 180 women have been treated for pre-cancer or infections, and 18 women were treated for early-stage cervical cancer. Photo and report: Daphne Bochaberi, Kenya Hospice and Palliative Care Association

A United Front against Non-Communicable Diseases in Kenya

By Catherine Mbevi for eHospice

Nairobi, Kenya, was the site of a stakeholder collaboration organized by Access Accelerated to encourage action on the prevention and control of non-communicable diseases (NCDs). The collaboration was a two-day extension of a workshop on the topic held in March.

NCDs account for the loss of 100,000 lives in Kenya each year, according to a 2015 survey by Ministry of Health. The event brought together the global community, the government, non-governmental organizations, health practitioners, caregivers and people living with NCDs (PLWNCDs).

Stakeholders in attendance came from government, the private sector, and civil society, including the World Bank, Union of International Cancer Control, NCD Alliance, PATH, World Heart Federation, and BIO Ventures for Global Health.

A unique feature of this event was that PLWNCDs and their caregivers were given adequate time to share their stories of delayed and wrong diagnosis, pain, poor quality treatment, stigma, and the financial challenges of managing chronic diseases. By the end of the two-day event, PLWNCDs were empowered to write a comprehensive petition to the international and national government for the upscaling of NCD care.

The petition included demands for proper involvement of PLWNCDs in decision making, quality and timely care at local health facilities, education of PLWNCDs and their caregivers, qualified medical staff, subsidized health services, comprehensive insurance coverage, and government accountability, among others.

Illnesses categorized as NCDs include heart diseases, stroke, cancer, diabetes, road crash survivors (injury and accidents), hypertension, epilepsy, sickle cell, bone and joint conditions, spinal cord injuries, asthma, and mental conditions among others.

In the closing plenary James Pfitzer, the director of Access Accelerated, said that the event was humbling, adding that, ‘We will work with our members and partners to bring a united response as we commit to supporting partners to elevate the voices of people living with NCDs.’

Facts and Figures: Hospice Care in America

In March, the U.S. National Hospice and Palliative Care Organization released statistics from 2016 showing that Hospice Medicare beneficiaries with a principal diagnosis of cancer decreased while patients with Alzheimer’s or dementia rose to 18%, up from 16.5% the previous year.

‘Facts and Figures: Hospice Care in America’ reports on Medicare/Medicaid statistics alone. The statistics reveal that hospices, which began with an overwhelming majority of cancer patients in the 1980s, now report that the most prevalent five diseases at admission are:

The annual report provides an overview of hospice care delivery in the U.S. with specific information on hospice patient characteristics, location and level of care, Medicare hospice spending, hospice provider characteristics, and more. The report includes these 2016 facts: 1.43 million Medicare beneficiaries received hospice care; the average length of service was 71 days; the median length of service was 24 days; 98 percent of care was Routine Hospice Care level (i.e., care provided at home); and there were 4,382 Medicare-certified hospices in operation.

Statistics show place of death:

Resources

Photo courtesy of U.S. National Hospice and Palliative Care Organization.

Rich Variety of Palliative Care Information Resides within Country-Specific Websites

The websites of organizations devoted to their country’s citizens can be useful palliative care resources for anyone seeking reliable information that can apply to any setting. Here are just two examples, half a world apart:

CareSearch.com

Australia’s CareSearch.com has a wealth of resources, both online and print, for those involved in palliative care. For instance, while the website navigation bar’s ‘What is palliative care?’ is intensively Australian in focus, ‘Clinical Evidence’ provides details on four categories — advance care planning, patient management, carer evidence, and service delivery — that are broken down further into a multitude of topics of interest and use to palliative care patients, carers, family members, and medical professionals anywhere.

As an example, one of the 17 topics under Patient Management is ‘appetite problems.’ The listing addresses key messages, an overview, active areas of research and controversies, and references. Other topics include sections such as: ‘what is known,’ ‘contributing factors,’ and ‘find out more,’ which provides links to full-text articles.

Another navigation bar topic, ‘Finding Evidence,’ is similarly organized and useful. Additional print resources are organized under 22 topics, including: communication (health team, family, and friends); dementia; feelings and emotions; bereavement, grief, and loss; pain; symptoms other than pain; medicines; patient rights; and complementary therapies.

CaringInfo.org

Caringinfo.org is a website run by the U.S. National Hospice and Palliative Care Organization. In addition to state-specific information (such as advance directives), there are lush offerings.

The navigation bar emphasizes advance care planning, caregiving, hospice and palliative care, and grief and loss. The caregiving category, for instance, is further broken down into sub-categories: preparing for giving care, providing care, care for the caregiver, caring for children, and helpful services. The ‘Caring for children’ page identifies the NHPCO brochures (in pdf form) that visitors might find useful.

The printable brochures contain basic information on several topics, organized into 10 categories:

A selection of bilingual documents are available in Spanish/English and Mandarin/English. NHPCO notes that all of its publications are copyrighted, and mass reproduction is prohibited. Licensing agreements and permissions, however, can be arranged.

If you know of a website worthy of mention for its excellent palliative care information, regardless of country of origin or language, please contact me so that it can be considered for inclusion in future issues of the newsletter.

Multilingual Pain Scales

The British Pain Society has produced a series of pain scales in multiple languages to assist and encourage improved assessment both by the health care professional and the patient for whom English is not their first language.

The pain scales are recommended to be used by GPs and emergency staff, but may also prove useful in a wider range of situations in which the communication of pain is necessary. According to the society, this series of pain scales is judged to be the easiest to use and best understood of the simple scales available for adults with no cognitive impairment. The scales assess different — partly separable — aspects of pain, plus pain relief.

The languages available are: Albanian, Arabic, Bengali, simplified and traditional Chinese, Greek, Gujurati, Hindi, Polish, Punjabi, Somali, Swahili, Turkish, Urdu, Vietnamese, and Welsh. The translations were done professionally into the languages most often used in the UK by adults. All the pain scales consist of the foreign language scale followed by the English language translation.

The society writes that, ‘Because pain is a subjective experience there is no “gold standard” criterion for validity. However, in a broad sense these pain ratings do bear the expected relationships to related variables, such as disability and mood, and are also correlated with the amount of activation in certain areas of the brain concerned with pain processing [Coghill RC, McHaffie JG, Yen Y-F. Neural correlates of interindividual differences in the subjective experience of pain. Proceedings of the National Academy of Sciences 2003; 100(14):8538-8542].

Asia Pacific Paediatric Palliative Care Directory

The 2018 edition of the Asia Pacific Paediatric Palliative Care Service Directory has just been released by the Asia Pacific Palliative Care Network. It can be downloaded here.

If your pediatric palliative care service is in the Asia Pacific region and you want it included in future editions of the directory, please click here. You will find an online form below the map.

Dates to Note

Denotes a new listing

Calls for Abstracts

The ‘late-breaking abstract’ deadline is 20 April 2018 for the MASCC/ISOO Annual Meeting on Supportive Care in Cancer being held 28-30 June 2018 in Vienna, Austria.

The 7th annual International Conference on Opioids (ICOO 2018) takes place 10-12 June 2018 in Boston, Massachusetts, USA. The theme is ‘Opioids in medicine: Perception and reality.’ The deadline for poster abstract submissions is 20 April 2018.

The deadline to alert the ESMO with an intent to submit a late-breaking abstract is 9 May 2018 for the European Society for Medical Oncology 2018 Congress, taking place 19-23 October 2018 in Munich, Germany. Only abstracts for which no conclusive data are available at the time of the abstract submission deadline of 9 May 2018 will be considered for late-breaking status.

The 22nd International Congress on Palliative Care is being held 2-5 October 2018 in Montreal, Quebec, Canada. The deadline for poster abstract submissions is 31 May 2018.

Conferences

2018

The US-based Social Work Hospice & Palliative Care Network is holding its 6th Annual General Assembly from 11-13 March 2018 in Boston, Massachusetts, USA. The theme is ‘Forging New Models of Hospice and Palliative Care through Practice, Research, and Education.’

The 2018 Annual Assembly by the American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA) is being held 14-17 March 2018 in Boston, Massachusetts, USA.

The Malaysian Association for the Study of Pain (MASP) Biennial Scientific Meeting takes place 17-18 March 2018 at the National Cancer Institute, Putrajaya Malaysia. The theme is ‘Delivering Better Relief for Cancer Pain.’

IX Congreso Latinoamericano de Cuidados Paliativos de la Asociación Latinoamericana de Cuidados Paliativos (ALCP) takes place in Santiago, Chile, 11-14 April 2018.

The U.S. Association for Death Education and Counselling is holding its 40th conference 25-28 April 2018 in Pittsburgh, Pennsylvania, with a pre-conference institute 24-25 April.

The 13th Belgrade International Symposium on Pain takes place 18-19 May 2018 in Belgrade, Serbia.

10th World Research Congress of the European Congress of the European Association for Palliative Care will be held 22-24 May 2018 in Bern, Switzerland. Early bird registration deadline is 15 March 2018.

The 3rd International Children’s Palliative Care Network (ICPCN) Conference takes place in Durban, South Africa, from 30 May-2 June 2018. The theme of the conference is ‘Inspiration, Innovation, Integration.’

The Canadian Society of Palliative Care Physician conference, ‘The Road to Universal Palliative Care,’ takes place between 31 May and 2 June 2018 in Toronto, Ontario, with a pre-conference workshop held 30 May.

The Journal of Opioid Management will hold its 7th annual International Conference on Opioids (ICOO 2018) on 10-12 June 2018 in Boston, Massachusetts, USA. Early bird registration ends 15 April 2018.

The Canadian Hospice Palliative Care 2018 Learning Institute takes place 14-16 June 2018 in Ottawa, Ontario.

The 23rd Congress of the Japanese Society for Palliative Medicine takes place 15-17 June 2018 in Kobe, Japan.

The MASCC/ISOO Annual Meeting on Supportive Care in Cancer takes place 28-30 June 2018 in Vienna, Austria. Early bird registration ends 10 April 2018.

Hong Kong’s Community End-of-Life Care International Conference will be held 20-21 June 2018. The theme is ‘Innovation and Impact: The Review and Vision of Community End-of-Life Care.’ The four major foci are: Palliative and Healthcare Environment, Quality of Care, Human Resources, and Community Engagement. Registration is free; first come, first served.

The Comprehensive Interventional Pain Management XIII conference takes place 21-22 July 2018 at the D.Y. Patil Medical College in Nerul, Vani Mumbia, India. A workshop is being held 23-24 June.

The International Federation on Ageing is hosting the 14th Global Conference on Ageing 8-10 August 2018 in Toronto, Ontario, Canada. The theme of is ‘Toward a Decade of Healthy Ageing – From Evidence to Action.’ The early bird registration deadline is 6 August 2018.

The 17th World Congress on Pain is being held 12-16 September 2018 in Boston, Massachusetts, USA. Early bird registration deadline is 21 May 2018.

Registration opens mid-May 2018 for the 23rd Hospice New Zealand Palliative Care Conference, being held 18-21 September 2018 in Auckland, New Zealand. Early bird registration deadline is 27 July 2018.

The International Society of Nurses in Cancer Care’s International Conference on Cancer Nursing takes place 23-26 September 2018 in Auckland, New Zealand. The theme is ‘Global Actions: Working Toward Unity and Excellence in Cancer Care.’

The 22nd International Congress on Palliative Care is being held 2-5 October 2018 in Montreal, Quebec, Canada. One of the five plenary sessions is on Global Palliative Care. Early bird registration deadline is 31 March 2018.

The European Society for Medical Oncology 2018 Congress takes place 19-23 October 2018 in Munich, Germany. The theme is ‘Securing Access to Optimal Cancer Care.’

The International Conference on Hospice and Palliative Care (ICHPC) 20th International Conference on Palliative Care is scheduled for 3-4 December 2018 in Sydney, Australia. Early bird registration deadline is 2 November 2018.

The Palliative and Supportive Care in Oncology Symposium is scheduled for 16-17 November 2018 in San Diego, California, USA. Abstract and poster deadlines have not yet been determined.

2019

The 6th International African Palliative Care Conference is being held 17-19 September 2019 in Kigali, Rwanda. The theme is ‘Palliative Care and Universal Health Coverage.’ A website has not yet been set up.

The 8th Association of South-East Asian Pain Societies (ASEAPS) Congress is scheduled for 11-14 April 2019 in Kuching, Sarawak, Malaysia. The theme is ‘Building Collaboration in Pain Management.’

The 13th Asia Pacific Hospice Conference is scheduled for 1-4 August 2019 in Surabaya, Indonesia. The theme is ‘Bringing Hope to Those in Despair.’ The call for abstracts has not yet been announced.

The 2019 biennial Australian Palliative Care Conference (APCC) is scheduled for 10-13 September 2019 in Perth, Australia.

The 6th Public Health Palliative Care International conference is scheduled to take place in Sydney, Australia in 2019.

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