2020; Volume 21, No 2, February

News

IAHPC-Funded Poster Exhibition Award Winners

Once again, the IAHPC sponsored three prizes for selected posters at the annual International Palliative Care Network Poster Exhibition.

The 2019 edition of the exhibition ran from November 15 to December 15. It was the 10th anniversary of the online event, which exhibited 36 posters from 14 countries.

“Each year, the quality of the posters consistently exceeds that of previous years,” says Kiran Bharadwaj, Project Leader of the Network. “Also, each year we usually connect with colleagues from countries where we don’t expect the field to have many inroads,” he added. “That trend started a few years ago, with numerous submissions from Mongolia.” This year, it was Latvia.

Ms. Claudia Virdun, RN

First prize (USD$300): Ms. Claudia Virdun, RN, Australia, for “Enabling Optimal Palliative Care within Australian Hospitals – Opportunity for Improvement: Preliminary results from a sequential mixed method study.”

Ms. Virdun is a Senior Lecturer and PhD candidate at the University of Technology Sydney whose research focuses on optimizing palliative care within the hospital setting. She has worked in palliative care for 20 years in either a clinical, academic, or policy-focused role. She earned an Honours degree in Nursing at the University of Sydney, and a Master’s degree in Advancing Professional Healthcare Practice at King's College, London.

“I am so thrilled to have won this award,” she says. “Winning this poster presentation affirms others’ interest in this area, and their positive feedback about the design we are using to inform change was very important and valued by our research team.”

In addition to her first-place finish, Ms. Virdun received an honourable mention for a second poster, “Co-designing Palliative Care Research with Patients and Families – An opportunity to enable our research to answer questions that truly matter to those we are providing care for.”

Enabling Optimal Palliative Care within Australian Hospitals – Opportunity for Improvement: Preliminary results from a sequential mixed method study

By Claudia Virdun

Introduction: The majority of expected deaths in Australia occur within hospitals, where optimal palliative care cannot be assured. Significant data exists about what is important for care, but is unconfirmed within the Australian population. Measurement of palliative care quality within the Australian hospital setting is not yet realised. Addressing these issues provides an opportunity to focus improvement efforts and enable optimal care irrespective of where a hospital is located within Australia.

Aim: To support system level improvements in care for people with palliative care needs in the hospital setting, and their families/carers.

Methods: A sequential mixed method study.

  1. Systematic review of published patient and family/carer (“family”) data about what enables optimal hospital palliative care (completed 1,2).
  2. Systematic scan of strategies used globally for palliative care quality measurement (completed 3).
  3. Semi-structured interviews with Australian patients and families to: confirm the relevance of elements noted as important for optimal hospital palliative care; and understand how this population can contribute to improvements (underway).
  4. Integration of data across studies 1-3 to outline key recommendations.

Results: Synthesis of published data identified 15 domains of care that are important to patients and families. The global scan highlighted 128 national quality indicators used to measure palliative care and their related policy environments. Patient and family interviews and related data analysis are underway. How this work contributes to policy developments and practice change for optimal hospital palliative care will be presented.

Conclusions: Consumers have outlined what is important for hospital palliative care for over 25 years. Our challenge is to consistently provide care in accordance with these areas of importance. It is time to meet this challenge and see meaningful improvements made.


Dr. Mary Johnson

Second prize (USD$200): Dr. Mary Johnston, U.K., for “ ‘Bridging the Gap’ Quality Improvement Project – Reaching Out into the Community to Improve Understanding and Spiritual Care.”

Dr. Johnson currently works in general medicine in a London hospital, but spent many years working at hospices in the U.K. “It was an honor to even be chosen for it [the exhibition], let alone win an award, especially when looking at so many other amazing posters involved,” she says. “Really, the credit for all of this lies with Nipuna Gunawardena who started the project and chaired it.”

‘Bridging the Gap’ Quality Improvement Project – Reaching Out into the Community to Improve Understanding and Spiritual Care

By Dr. Mary Johnson

Abstract: There has been a recent drive to make palliative care more accessible to people from all communities and backgrounds with two of the core ambitions in the national framework for palliative and end of life care promoting equality and inclusivity.1

Stemming from the ideals of these ambitions an educational initiative called Bridging the Gap was established in a district general hospital in London to improve communication and decision making between medical staff and their highly diverse patient population, in the important conversations that are had in end of life care.

Through workshops and hospital experience days we introduced to various Christian and Jewish leaders in the local community the moral and ethical considerations that doctors and other medical staff face when they make decisions for deteriorating patients who are approaching the end of their lives. Qualitative feedback indicated a significant improvement in confidence and familiarity toward these topics among these leaders and that there was scope to reach out to the wider public within these groups. Future workshops and meetings need to be conducted to establish contact with other cultural and religious leaders in the local area.

At the same time we raised awareness of certain cultural, religious, and spiritual perspectives toward end-of-life care among medical staff by conducting a hospital-wide workshop. Perspectives that were explored were the Greek, African (general and subcultures), and Muslim perspectives. Feedback suggested that the workshop was a significant success but that there was a need for other perspectives to be explored.

A 2-part problem:

Different communities may have different needs and understanding of end of life care. Studies across UK have shown no difference in access to palliative care in BAME populations but there is a difference in perception of quality

Lack of training in dealing these factors among staff. NMUH Staff Survey regarding cultural/religious/spiritual factors at end-of-life care:

  • 98% reported their knowledge could be better
  • 60% reported that these factors play a pivotal aspect of EoL all the time or often
  • yet only 34% reported that they received any formal training

Objectives: We split the project into 2 main objectives:

  1. Community arm. To introduce to the community to explore medical, ethical, and moral considerations that medical staff take into account in making decisions regarding treatment toward the end of life.
  2. Medical staff arm. To improve awareness of cultural, religious, and spiritual needs for end-of-life care among medical staff in NMUH.

Our SMART aims for the community arm

1. Specific

    1. Delivery: Workshop
    2. Topics: DNAR, ACPs and End-of-Life Care.
    3. Target Audience: Community

Phase 1: Establishing contact with community leaders.

Phase 2: Dissemination of information to wider public.

2. Measurable

    1. Outcome: Pre- and post-workshop confidence and familiarity questionnaires for the participants.
    2. Reflections from facilitators and pre sessional knowledge of participants.
    3. Achievable: With the experience of the team and assistance from the hospital chaplaincy team.
    4. Realistic and timely: Establish links with 10 community leaders by first 6 months of the project.

Our aims for the medical staff arm

  1. Specific

a) Delivery: Workshop.

b) Topics:

Explore common perspectives of viewing futility of treatment, dying, advanced care planning as well in the local area and how to manage them.

Explore common rituals and practices around death and discuss practical ways to accommodate them.

c) Target audience: Medical staff.

  1. Measurable.
  2. Outcome:Pre- and post-session confidence rating.

Workshop Feedback forms.

  1. Achievable: Through organisational skills of team and advice from external members.
  2. Realistic and timely: Explore 3 perspectives in first workshop within 6 months.

Method: The project was spilt into 2 sections, one of the community and one for the medical staff.

  1. Community arm – initial workshop with Anglican curates at a NHS experience day giving a short presentation as part of the day about DNAR and end-of-life care. Follow-up workshops for community leaders exploring DNAR, advanced care planning and end-of-life care.
  2. Medical staff arm: Workshop for medical staff at North Middlesex Hospital with 3 presenters of medical backgrounds representing different religious and cultural backgrounds and small group work through example scenarios.

All sessions had a pre- and post-workshop confidence questionnaire for participants to collect data.

Results:

Community arm

Several misconceptions addressed:

  • Morphine used to hasten death.
  • Final say on DNAR decisions is with patient and their family.
  • Resuscitation was considered to be more successful than it really is.
  • Discussions about escalation of treatment is made because of financial reasons and not necessarily because of best interests.

Acceptance of info:

  • Overall quite receptive.
  • There was some interest in giving this information to members of their own community especially about advanced care planning.
  • Main issue of conflict: DNAR is a medical decision.

Medical staff arm

  • Pre-confidence rating of participants in discussing cultural issues improved from 2.68 to 4.47.
  • Aspects of workshop most helpful: Well-informed speakers who were in touch with needs of community, small group work dealing with common scenarios, addressing family dynamics in decision making among different cultures, after-death care and practicalities

Conclusion: The workshops for both the community arm and the medical staff arm were very well received and there was some very good feedback from those who took part. Community leaders talked about how they were going to use the information they had gained from the workshops when talking to parishioners about these issues, which was very satisfying for the team. There was conflict however when talking about potentially controversial subjects, such as do-not-resuscitate forms being a medical decision not a patient and family one. Also there were some large sections of the local community not represented by the group that attended the workshops.

In the future we hope to run more community leaders workshops to reach some of the sections who didn’t attend originally. Also we hope to use the contacts from some of the workshops to deliver similar sessions in the community to reach more people.

We also will fund more sessions for the medical staff addressing different religious backgrounds and beliefs and open them up to cover more minority groups such as LGBT and homeless groups.

We are very pleased with how the workshops have gone so far and are excited for the future of this project.


Ms. Aina Briede

Third prize (USD$100): Ms. Aina Briede, Latvia, for “The Role of Support Groups in Improving the Quality of Life of Families in Children's Palliative Care.”

Aina Briede has worked as a chaplain at University Children’s Hospital’s Palliative Care Department since 1999; she was one of the first chaplains in Latvia to work in a hospital, providing spiritual support to patients during treatment. More recently, she has introduced telemedicine technology to the institution. She also developed evidence-based clinical mental health guidelines for children’s palliative care, and recently participated in a guidelines project to amend the law on social services and social assistance, including rehabilitation for children such as her palliative care clients. Ms. Briede’s 50-year career in the field of medicine began as a nurse; she later earned a Master’s degree in Social Work.

“This poster exhibition is relevant to every professional,” she says, “because it provides them with an opportunity to evaluate their strong points as well as their weak points.”

The Role of Support Groups in Improving the Quality of Life of Families in Children's Palliative Care

By Aina Briede, Anda Jansone, Varis Bogdanovs, and Helene Saleniece

The Palliative Care (PC) Department at the Children’s Clinical University Hospital is the first and the largest PC service in Latvia. The PC team provides outpatient consultations and home care, medical treatment, and psychosocial and spiritual support to the child and their family during the child’s illness and bereavement support. We have been organizing support groups for more than 10 years.

Background: For parents, providing long-term care for a child with a life-limiting illness is a very complicated and psycho-emotionally difficult time. Our work experience shows that support group members who are parents are united by physical and emotional burnout and social isolation. They develop health problems, including fatigue, sleep disorders, anxiety, and depression.

One of the main goals of children’s palliative care is to provide psychosocial and spiritual support to the family of the sick child during the child's illness and, after the child's death, during the bereavement period. Children’s palliative care specialists provide support groups for families with terminally ill children and bereaved families.

Objectives: To summarize and to evaluate the results of family support groups and their impact on the family.

Methods: Qualitative. The data collection method consists of questionnaires, semi-structured interviews and participant’s observations.

Results: Between 2016 and 2017, three therapeutic support groups were organized for parents of children with a life-limiting condition. For this survey were interviewed 28 mothers who participated in these groups. When evaluating the work of family support groups, the main results are the following.

  • Provision of a confidential environment and a place where parents can meet other parents in similar life situations and seek professional support. At the beginning of group sessions, the group's privacy rules are explained and accepted, which create a sense of security for participants and provides knowledge of group work, its necessity, goals, and methods. Group members gain experience through a gradual introduction to the environment, the group process, the group leader, and participants in similar life situations who also seek professional support.
  • An exchange of information and experience between parents is facilitated.
  • A sense of community between the group members is achieved.
  • New personal experiences are promoted.
  • Parental psycho-emotional stability is improved; discussing existential issues alleviated the "rose-colored glasses syndrome." Group members shared the courage to look more realistically at the situation, talk about the loss of the child, and how they could live afterwards.
  • Members of the group became freer in their statements after group activities as well as more open; they learned to ask for help. Also communication between parents and the rest of the family gradually improved.
  • The groups fostered a sense of purpose and meaning in life.

Conclusions: The findings suggest that parents' quality of life is significantly worsened by a prolonged family crisis associated with the child's incurable illness, which requires years of uninterrupted care from family members and subsequent social isolation. The results of the study show that there is a positive correlation between support received and quality of life indicators, such as social activity, return to the labor market, partnership, communication, physical and spiritual health, etc., which justify the positive family benefits of family support groups.

Honorable mentions

Year-End Report on 2019 Traveling Scholarships & Fellowships

Traveling Scholarships

IAHPC’s Traveling Scholarships Program continues to be one of IAHPC’s most popular programs: 136 applications were received for the 29 scholarships available last year for three conferences, held in Africa, Asia, and Europe.

By continent, Africa drew the most applicants, 60 people; Asia was second with 43, and South America had 17. By region, the fewest applicants were from North America (2), Oceania (3), and Central America and the Caribbean (4).

By number of applicants, the 16th World Congress of the European Association of Palliative Care was the most competitive, with 71 applicants; followed by the 6th International African Palliative Care Conference, with 31 applicants; and the Oceanic Palliative Care Conference, with 17 applicants.

The scholarships range from USD$300 -$1,700, depending on the cost of airfare and registration. In addition, USD$900 was split between between three people from Africa invited to attend a Fellowship in Primary Care in Calicut, India, in 2019.

Traveling Fellowships

Traveling Fellowships received eight applications this past year, of which one was approved. An IAHPC fellowship is an educational project planned and implemented by both the individual and a host institution. The USD$921 grant was issued to U.S. physician Dr. Michael (Mike) Gosey as part of his continuing work to improve palliative care in Haiti by holding sessions to educate health care personnel in palliative care practices. [His Haiti project is detailed in the February 2018 issue of the newsletter, and his final report was published in April 2019.]

Six of the eight applications received involved a single host institution, Fasiuddin Khan Research Foundation in Dhaka, Bangladesh. Those applications — for educational initiatives with community health workers — are being considered for grants in 2020 and 2021. The eighth application was for a project in Zimbabwe, Africa.

Find out more about IAHPC’s Program Support Grants, and our Traveling Scholarships and Traveling Fellowships here. Through these programs we support projects and individuals around the world, especially in developing countries in Africa, Eastern Europe, Asia, and Latin America.

Your donation can help palliative care workers attend and participate in congresses and courses.

Details about Our Free Online Course:
Advocacy in the Multilateral System

The free-to-members IAHPC Advocacy Course, “Advocating for Palliative Care in the Multilateral System,” has attracted learners from Africa, Asia, Europe, North America, and South America.

“Why this course?” says its creator and IAHPC Advocacy Officer Dr. Katherine Pettus. “So our members can participate more, and help build our vision. Our Strategic Plan calls for advocacy that promotes palliative care within universal coverage.”

The course is structured as a single presentation. It consists of either: a 47-minute MP3 file of PowerPoint-type slides (bullets of information, writ large) with an explanatory, more detailed voiceover provided by Dr. Pettus; or a go-at-your-own-pace pdf of the 48 slides in the MP3 file. Both are downloads.

No tests or deadlines,
plus an opportunity

There is no deadline for registration or completion, and there are no tests or assignments. However, we would greatly appreciate your feedback, so that the next course will be even better.

Mrs. Coumba Gueye

Completion of the course is a prerequisite for selection as an advocacy focal point or member of an IAHPC delegation at a multilateral meeting — an exciting role in which you will be fully supported by our IAHPC team!

Senegalese member Coumba Gueye’s enthusiasm for the course provoked her to write a note of thanks. “I realized that without a public policy that will support and guide our programs, our engagement will not be as effective as we would like it to be,” she said.

What you will learn

The course gives palliative care providers a basic understanding of IAHPC’s multilateral advocacy program, which provides the legal “superstructure” for your clinical work. It defines relevant terms, describes the guiding tenets of our advocacy, and enumerates effective techniques and tactics.

The course consists of:

A list of resources, including links to the documentation cited, concludes the course.

The next advocacy course

The next course, an advanced course in advocacy now being prepared, will aim to strengthen your voice as an advocate, with advice as to steps you can take to improve access to palliative care in your community, your region, your country, and internationally.

To The Unknown God:
A film of loss and recovery

“The Professor,” actor Paolo Bonacelli as hospice resident Giulio Redetti. Courtesy of Kineofilm. Photo used with permission.

To The Unknown God is an Italian movie with English subtitles, being released this year, about Lucia’s loss of her daughter to leukemia, and how a hospice patient and the actions of Lucia’s son propel her to “grasp the meaning of life.”

The 125-minute movie is expected to be screened at a major palliative care conference in 2020. A two-minute trailer is now online.

The movie’s author and director, Rodolfo Bisatti, made a documentary on palliative care in 2000 intended as an instrument upon which to build end-of-life care legislation in Italy. After experiencing the loss of his father, Bisatti was inspired to make this feature film.

In To The Unknown God Lucia tries to deal with her loss while working in a hospice, where she meets “the Professor,” Giulio Redetti (Paolo Bonacelli), who talks to her about his experiences, showing her how to deal with her angst. Her son, Gabriel, handles his suffering by adopting a fearless way of living, to prove to himself and his mother that living includes the risk of dying.

Each month, we publish items that may be of interest to our global readership. Contributions are welcomed.

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.

What's New in Pallipedia

Definitions and terms added this past month to Pallipedia, the IAHPC’s palliative care dictionary established and maintained by Dr. Roberto Wenk.

Do you have any questions regarding Pallipedia?

Contact Roberto Wenk


What’s New in the IAHPC Calendar of Events

Canada

Germany

Italy

Uganda

UK

USA

Find the workshop, seminar, congress, or conference that speaks to 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

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