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.
The government of the Russian Federation has allocated $70 million to support implementation of palliative care in each of the country’s 86 regions in 2018. At the invitation of the Chief Specialist in Palliative Care of the Russian Ministry of Health, Dr. Diana Nevzorova, and the World Health Organization Country Office in Russia, Eric L. Krakauer (MD, PhD, and IAHPC Board Member, Director of the Global Palliative Care Program at Harvard Medical School and Massachusetts General Hospital) travelled to Russia to assist Dr. Nevzorova and her colleagues in planning this large-scale implementation.
While in Russia, Dr. Krakauer gave an invited lecture on the 2014 WHO Resolution on Palliative Care and on the Report of the Lancet Commission on Palliative Care at the biennial conference of the Association of Directors of Institutes of Oncology and Radiotherapy (ADIOR) of Russia and the Commonwealth of Independent States, held in Sochi, Russia, in late April. The trip was supported by the U.S. National Cancer Institute’s Center for Global Health.
The first International Conference for Compassionate Youth is being held 24-25 January 2019 in Puducherry, India. The conference intends to gather ‘the experiences, activities, and aspirations’ of young people under the age of 30 in the fields of palliative care, care of the differently abled, care of older persons, and care of those who are mentally ill.
The organizers, aware of financial considerations, have priced the conference’s early-bird registration fee (until 31 August 2018) at INR 1000 for those living in India and $US 30 for international participants under the age of 31. The early-bird fee for those over 31 are INR 2000 and $US 60.
The conference is a joint initiative by Sri Aurobindo Society, the Institute of Palliative Medicine, and the World Health Organization Collaborating Centre for Community Participation in Palliative Care and Long-Term Care.
For more information, or to register, contact the secretariat at: email@example.com.
By Kate Jackson, WHPCA
A multi-level three-year project to increase the voice of direct stakeholders — people living with conditions that require palliative care now or may in the future — in South Africa and Ethiopia started in February.
The Anglophone Africa Direct Stakeholders Project aims to increase access to palliative care by asking patients, their families, and carers to tell their inspiring stories, speaking directing to health care decision makers. Their stories will be recorded on video or audio, and disseminated to target audiences on social media, regional and national news media, and through organizations, community meetings, and direct advocacy with national governments.
The project is intended to address the two main barriers to accessing palliative care — low demand, and lack of political will — and provide lessons for others to use worldwide.
It is structured as a collaboration between international, regional, national and community-level groups, as well as individual patients and carers. Project partners are the Worldwide Hospice Palliative Care Alliance (WHPCA), the African Palliative Care Association, the Hospice Palliative Care Association of South Africa, and Hospice Ethiopia. An annual £40,000 grant from The Joffe Charitable Trust, a donor new to palliative care, supports the project.
‘[People] will hear our struggle and see how much of a difference our stories could make to others affected by life-limiting illness,’ says Huyaam Samuels, a WHPCA communications volunteer. ‘We are the people who have to live with the result of health care policy decisions, so we should be part of the discussions.’
To get involved, email Kate Francklin.
By Huyaam Samuels, WHPCA Communications Volunteer
After teenager Rohan Bloom of Cape Town, South Africa, was diagnosed with a rare and aggressive form of cancer, Ewing’s Sarcoma, he and his family endured the full horror of his disease: extreme pain, indignity, fear, and desperation. After Rohan died, his father Rodney vowed that no child or family should have to suffer the way Rohan did.
Today, the Rohan Bloom Foundation is building a base from which that vision can become reality. Among its major initiatives is a partnership with Paedspal, a not-for-profit pediatric palliative care organization. Together, they are working to establish the first formal children’s Hospice and Palliative Care Centre in Cape Town. A facility has been secured; funding is being sought. Another important initiative is to connect doctors and children’s cancer specialists to a network of global experts. This network would be available for advice to patients and families and, if needed, could propose second opinions or alternative treatment options when others have been exhausted.
Paedspal Cape Town is a public-private partnership program that provides care and support for children living with life-threatening and life-limiting illnesses in South Africa.
A recently published article urges health sciences librarians to provide emotional support, expanded outreach, and authoritative information that ‘uplifts and unleashes the resourcefulness, resilience, and strengths of family caregivers.’
The Journal of the Medical Library Association article cites ‘cutting edge library practices’ that include advocacy for caregiving legislation and public policy, library resource-building, partnership development with public libraries and community agencies, and strengths-based family caregiver training.
The article states, ‘Health sciences librarians can creatively address caregiving challenges, introduce a wide range of practical solutions to address problems, focus mindfully on the present moment, support the establishment of a broad “circle of care” and social safety network, and advance the vision of a better world filled with hope and compassion for family caregivers, their loved ones, their health care teams, our local communities, and ourselves as librarians.’
The University of Melbourne has revamped a Pediatric Palliative Care module, part of its Specialist Certificate in Palliative Care, as a blend of online and in-person classes designed to better meet the needs of children with life-limiting illnesses and their families.
The topics covered are: Illnesses Encountered, Psychosocial and Spiritual Aspects, Ethics, and Symptom Management. The two in-person classes are offered as Professional Development days. The first class, which is online, is 18 June 2018.
The 5ème congrès international de soins palliatifs en Guadaloupe, titled ‘Palliative Care: Between Mystery, Taboo and Reality’ was held in April. In four workshops and 12 plenary sessions over two days, an estimated 200 participants discussed palliative care issues and practices in general, as well as the situation in specific countries in the Caribbean. Participants included national and regional experts from the Dominican Republic, Cuba, Haiti, Barbados, and Canada.
The Lancet Commission on Palliative Care was described and its principles to alleviate the ‘access abyss’ discussed. ‘We all feel very enthusiastic about being part of a beautiful project for change, the “Palliative Care Caribbean Dream,” a hope for the future that the dream of widespread palliative care will become a reality,’ agree Dr. Hardy and Dr. Wendy Cristhyna Gómez García, a pediatric onco-hematologist and invitee.
In Guadaloupe, end-of-life involves large, extended families and the belief that ‘death should not be solitary,’ palliative care champion Dr. Sabah Hardy wrote in an editorial introducing the program of events. Traditionally, approaching death has been coupled with certain important, preparatory actions: the person is accompanied in religious rites, sharing time, telling stories, singing, and playing traditional music. The evolution of medical procedures, notes Hardy, can turn acceptance of death into a hope of being cured at any price. It can lead to isolation, and lack of understanding of the aging process and chronic conditions. ‘Living one’s last moments is complex,’ she writes, ending with the question, ‘What is it like in other countries?’ The congress helped provide answers.
The congress was organized by PAF (Partage Action Formation) Guadaloupe in partnership with l’Équipe mobile de soins palliatifs du Centre hospitalier de la Basse-Terre.
Houston was one of many stops on the North American spring tour by Dr. M.R. Rajagopal promoting the movie Hippocratic: 18 Experiments in Gently Shaking the World. At the Houston screening, 187 tickets were sold, donations for Pallium India were collected, and Dr. Raj signed many of the DVDs sold. The audience comprised medical professionals and members of the Indian/American community in Houston. The screening was followed by a Q&A session with Dr. Raj and Dr. Suresh K. Reddy, University of Texas MD Anderson Cancer Center. A review of Hippocratic appeared in the Reviews section of the April Newsletter.
A grant from the IAHPC helped make the film, and the screening was supported and organized by the Indo-American Cancer Association (IACA).
The American Society of Clinical Oncology website lists a month-by-month calendar of events, including a ‘Best of ASCO’ symposium series repeated in major U.S. cities, beginning in Miami and San Diego in July. The stated goal of this symposium is to present the most recent guidelines and incorporate recent advances in the treatment of cancer into clinical practice.
By Susan Block, Senior Advisor, Serious Illness Care Program
When we or those we love face serious, life-threatening illness, we have to make many personal and medical decisions that can be frightening, difficult, and confusing. Compassionate and clear conversation is the key to easing confusion and fear and ensuring that decisions about care reflect what matters most to patients.
We know that individuals who have conversations with their clinicians about their values, goals, and wishes are more likely to receive the care they want, have fewer non-beneficial medical treatments, and report better quality of life.
And yet, less than one third of patients with end-stage medical diagnoses discuss goals and preferences with their clinicians. When these conversations do occur, they often take place late in the course of illness, when there is little time to translate them into meaningful actions. The conversations tend to focus on medical procedures and treatments rather than a patient’s values and priorities, and the information may be difficult for other clinicians to retrieve and use.
The Serious Illness Care Program was created by palliative care experts at Ariadne Labs to address these challenges. It is an intervention centered on a Serious Illness Conversation Guide, structured questions drawn from best practices in basic palliative care.
The guide serves as a framework for clinicians to explore topics key to gaining a full understanding about what is most important to patients. It is one element of a six-part program that creates system-level support for clinicians to have these important conversations with their patients.
The goal is for every seriously ill patient to have more, better and earlier conversations with their clinicians about their goals, values and priorities that will inform their future. The guide encourages direct communication, and questions at the heart of the conversation help elicit patient goals, values, and priorities. Focus group participants found the language used in the guide easy to understand.
A color-coded Care Calendar is a key tool for Lotsa Helping Hands, a free Web-based tool anyone can use to easily identify and coordinate the care for someone in need (including yourself).
The person in need, or their caregiver, lists all the help required for each calendar day, then invites selected friends and family, or anyone else who might want to supply some physical or emotional aid, to join their ‘community.’ Everyone who accepts the invitation can see the Care Calendar and its specific tasks, such as help changing a dressing, food shopping, drives to and from appointments, providing meals, child care, checking-in phone calls, etc.
Each helper takes on whatever tasks they wish; each time a task is taken, it turns from green (signifying ‘help needed’) to blue (‘needs met’). Because everyone works from the same color-coded calendar, anyone in the community can see at a glance the status of all needs.
Lotsa Helping Hands is also a communication tool. It removes the burden of a patient or caregiver having to update each person individually by allowing users to send a single message that simultaneously reaches everyone in their community.
Since its inception, Lotsa Helping Hands has logged 1.8 million helpers for 100,000 communities created. Helpers have delivered approximately 2 million meals, given 570,000 rides, and covered 295,000 child care shifts.
Research shows that some clinicians feel their job is done when news of a prognosis is delivered. Patients, however, often feel the most important part of the conversation has just begun — they want to know what they can do about their illness.
Vitaltalk.org aims to ‘train clinicians caring for patients with serious illness, and their families, in the communication skills critical to elicit patient values and discuss goals of care.’ It offers paid courses on improving the communication skills of clinicians, but has also posted a series of free resources on a range of topics of interest to those working in palliative care. They include videos that demonstrate brief conversations — modeled by a physician and patient — that touch on various aspects of communication, with titles like ‘Disclose Serious News.’ Videos show how conversations may unfurl. Other topics include: addressing goals of care, tracking and responding to emotional moments, bearing witness to the end, and defusing conflicts.
The site also has a series of one-page ‘quick guides’ on eight common situations, including: the first visit, discussing prognosis, responding to emotion, and the family conference. A blog features two- and three-minute instructional videos on such topics as ‘Regulating Your Empathy,’ and ‘Approaching Uncertainty.’
A non-profit organization, VitalTalk was founded by four physicians affiliated with the University of Washington, University of Pittsburgh, Fred Hutchison Cancer Research Center, and the Dana-Farber Cancer Institute.
It states that, ‘Our community of accomplished VitalTalk faculty is comprised of clinicians who practice what they teach. Our verbal tools empower clinicians to communicate about serious illnesses empathetically and effectively, enabling them to feel less burned-out in the process. Our methodology has been perfected through years of refinement. Our evidence-based programs train clinicians in a method that is culturally sensitive, interprofessional, and oriented around patient values.’
This month’s additions to webcasts created and disseminated by End-of-Life University include nurse Deanna Cochran speaking on ‘End-of-Life Doulas: A movement for the future.’ The traditional definition of a doula is someone trained to provide advice, information, emotional support, and physical comfort before, during, and after childbirth. That definition is expanding. Cochran speaks on how the doula movement is changing care at end of life.
A four-part series, ‘Demystifying Palliative Care,’ features conversations with members of an award-winning palliative care team from Providence St. Joseph Health, active in seven states in the U.S. The series promises that, ‘You'll learn how palliative medicine benefits patients, when to consider palliative care, how to access care, and what to expect from the team of experts who provide palliative care.’
The series comprises one person from each profession speaking on their field of care:
You can access all four here.
Each End-of-Life University webcast is accessible to the public for a limited time.
The African Palliative Care Association has a useful section on its website titled ‘Evidence.’ The section comprises:
The ‘Types’ web page includes a chart that gives grades to different types of evidence. For example: the best ranking, 1++, is given to high-quality meta-analyses, and systematic reviews of randomized controlled trials; a middle ranking, 2+ is given to well conducted, non-randomised intervention studies, comparative cohort, and correlation studies with a low risk of confounding, bias or chance; the lowest ranking, 4, is given to expert opinion and formal consensus.
ACPTalk is a website based in Australia dedicated to advance planning with an emphasis on sensitivity to religious and cultural issues. In a research article published in April by JMIR Research Protocols, researchers observed that the large majority of 107 Australian users who completed the online survey found the website’s information to be accurate, useful, easy to understand, and appropriate. ‘Most users viewed the website positively in terms of design, content, and functionality and found it useful to increase knowledge and preparation for ACP with people of different religious and cultural backgrounds.’
The study also included 37 content reviewers, representing different religious and cultural organizations, who agreed that the language and tone were appropriate and that the site would support health professionals.
Relationships formed in peer groups for the bereaved in England have helped the bereaved ‘recover well’ and ‘find meaning and value despite their grief,’ according to an article published online in March by the London Journal of Primary Care.
The authors describe the story of the Buddy Groups, which were established at Weston Hospicecare in 2008 and have endured ever since. The article notes that, ‘significant numbers of people suffer in silence, but at the same time do not require specialist bereavement care. The Buddy Group was simple to set up, did not require prolonged professional input, and was open to all who could benefit.’
Denotes a new listing
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.
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.
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.
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.
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.
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 ‘Towards a Decade of Healthy Ageing – From Evidence to Action.’ The early bird registration deadline is 6 August 2018.
The 1st Ecancer Symposium on Palliative Care (I Simposio ecancer de Cuidadaos Paliativos) hosted by Universidad Catolica is being held in Buenos Aires, Argentina, 6-7 September 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.
A Palliative Care & Spirituality for Life Conference is being planned for 16-18 September in Houston, Texas, USA. The agenda is being developed. A link to the website will be added to these listings when available.
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 Towards 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.
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 U.S. Centre to Advance Palliative Care CAPC National Seminar takes places 8-10 November 2018 in Orlando, Florida, USA. The theme is ‘Practical Tools for Making Change.’ A pre-conference workshop takes place 7 November.
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.
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 6th Public Health Palliative Care International conference is scheduled to take place in Sydney, Australia in 2019.
II Congreso Internacional de Cuidado Paliativo is scheduled for 4-5 April 2019 in Cali, Colombia. When available, details will be on the Association of Palliative Care of Colombia (ASOCUPAC) website.
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 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.