PACED
Perspectives provides a space for people working in palliative care – practitioners, educators, service managers and advocates – to present their view on an aspect of palliative care they consider especially important. Perspectives will be many and varied, and they will all help answer the key question “What can make good quality palliative care available to more people in Eastern Europe and Central Asia?”.

Perspectives on palliative care
PACED
Perspectives provides a space for people working in palliative care – practitioners, educators, service managers and advocates – to present their view on an aspect of palliative care they consider especially important. Perspectives will be many and varied, and they will all help answer the key question “What can make good quality palliative care available to more people in Eastern Europe and Central Asia?”.
Perspectives on palliative care
PACED
Perspectives provides a space for people working in palliative care – practitioners, educators, service managers and advocates – to present their view on an aspect of palliative care they consider especially important. Perspectives will be many and varied, and they will all help answer the key question “What can make good quality palliative care available to more people in Eastern Europe and Central Asia?”.
Perspectives on palliative care
Stephen Connor is Executive Director of the World Hospice Palliative Care Alliance and a member of PACED’s Education Advisory Committee.
Stephen Connor is Executive Director of the World Hospice Palliative Care Alliance and a member of PACED’s Education Advisory Committee.
“Country Leadership in Palliative Care”
Stephen Connor considers how building palliative care leadership in countries is necessary to complement improved education programmes.

Palliative care (PC) development in any region is dependent on the quality of leadership in each country. PACED and other non-governmental organizations (NGOs) that work on PC development have as one of their main aims to build up and support emerging PC leaders so they can be more effective champions for PC in their country and region. There is opportunity for this to be mutually beneficial as we are all lifelong learners and can benefit from each other’s experience and knowledge in an atmosphere of mutual respect and cultural humility.

Helping to help develop palliative care leaders cannot be done by parachuting in with single visits or training sessions. There must be ongoing relationships that may last many years. The process of PC development often happens in fits and starts with many obstacles that must be overcome through perseverance. The public health model for palliative care has many interlocking components that have to be addressed sometimes simultaneously and sometimes in sequence. For example, training in pain management when opioids are not yet available is ineffective. Implementing services before laws and policies are in place may not be possible. Public education and medical education need to be done in parallel.

Medical education needs to be developed at multiple levels in each country such that it includes undergraduate education in medical schools, nursing colleges, and universities; as well as post graduate programs and continuing medical education. Recognition of PC as a specialization in the health care system is an important goal and only comes about when a critical mass of competent clinical palliative care leaders and educators is achieved.

Ongoing mentorship is an important part of leadership development and should be embedded into all training programs as a part of ‘bedside’ teaching. Palliative care cannot just be taught in classrooms but has to include direct experience in caring for patients with PC needs and the opportunity to discuss difficult cases and problems with an experienced colleague.

Many different stakeholders need to be engaged during the PC development period to succeed. These include medical and nursing leaders and their universities; NGOs advocating for health and human rights; government ministries and political leaders; existing health care delivery organizations; and so forth. Through inclusion, organizations and individuals will come to understand and ‘buy in’ to the need for and development of PC in their country.

Political leadership is also very important and necessary to make progress in a country. Getting leaders to prioritize support for palliative care can be difficult as there are many health care priorities to be considered. Making the case for the value of PC to every health care system is necessary by using evidence to show how PC improves quality of life by anticipating and preventing health crises that result in unnecessary and unintended health care utilization and cost. However, it is not enough to focus on cost effectiveness, we must keep quality of care always in mind as our goal and show political leaders that it is a necessary social good that all citizens will value as a requirement for a just and equitable society.

Ultimately making good quality PC available to more people in any country requires strong, competent, dedicated leaders. Leadership in PC can emerge spontaneously but can be nurtured and encouraged through the kinds of relationships that we hope to develop through PACED.
Anna Gorchakova is Director of the Belarusian Children's Hospice, and palliative medicine course leader at the Belarusian Medical Postgraduate Academy.
Anna Gorchakova is Director of the Belarusian Children's Hospice, and palliative medicine course leader at the Belarusian Medical Postgraduate Academy.
“Information, education and partnership – the basis of paediatric palliative care”
Anna Gorchakova looks at the role of NGOs and the importance of education in building a paediatric palliative care system.

I have worked in palliative care for 28 years and been lucky to learn from pioneers of modern palliative care. From the beginning, they helped me understand that good palliative care is not just about building hospices – it is about a team working with the right philosophy and a systematic approach. Only then can we address the individual needs of each family.

Using these principles, we built a programme for families of terminally ill children. This was the time of perestroika; the state was in chaos and did not interfere with our work. When the state later became involved, putting in place regulations and licensing, we made sure we observed them. And because we aligned our work with the state system, paediatric palliative care in Belarus reached a good level.

But then a problem arose. The state thought it was able to deliver all aspects of palliative care. It said: "Thank you, you've done a great job, but now we’ll take over. You carry on with your NGO work, but we are the main players in the palliative field". Regulations deteriorated, standards fell, and palliative services became a place to dump patients who couldn’t be treated elsewhere. Parents, who were becoming better informed, resisted this approach and conflicts arose.

This deterioration could have been avoided if there had been a recognition of how the state and NGOs could work together. The state system is very robust and stable but cannot bend to every case. NGOs are flexible and can adapt to families’ needs – they can work at a deeper level and put in place a package of care that meets each family’s needs. For the state and NGOs to work hand in hand, we need better interaction with government agencies, not in terms of reporting but in exchanging information. For example, if an NGO supports a family, the state can use its resources elsewhere, and if the NGO sees the family needs the state to step in, we can pass on that information.

Too often, however, we are working with the same families which wastes resources and confuses families. We support 69 families in Minsk while the state has 550 people under its care. Leave us alone to care for our 69 families – we will call in the state if it is needed. Let’s work in partnership, based on the exchange of information.

What is needed to make this system, of which I am only dreaming so far, work? Initially, education. Basic education for medics – courses are not provided, or are taught by theorists who have simply read a pool of palliative books. But palliative care is a very practical field and a theorist cannot answer students’ questions without having practiced. Palliative care is not only medicine, it is also social care, and social workers need training in palliative care which is not currently provided by the state.

Society also needs to be educated. Society is not aware of people's role in helping; they think that if they give money for equipment everything will be solved. We need to explain that equipment needs to be used by a trained and salaried specialist. We need to explain how terminally ill people live: if these patients are given equipment but still can't go out, if they have no one to talk to, are they happier for having this equipment? But don't feel sorry for them – instead, talk about what society can do. Society can create an association to support them, supported by the state. And at the same time NGOs need specialist staff to deal with parliamentary systems and advise on legislation. This will underpin the development of a proper system of palliative care, with NGOs at the centre. Today it is easy to raise money for one-off help, but we need the resources for long-term systematic change.

‘Together’ should be the slogan for the development of palliative care. Together with society, together with the state as partners. Then, and only then, can we reach new levels of development for palliative care.

A new Perspective will be published each month and we are always looking for contributors. If you would like to write about what matters to you, please contact mike.mandelbaum@paced.org.uk.

Our Trustees and Advisers include leaders in the field of palliative care in the UK, EECA and globally.
NEWS
Fourteen countries join PACED’s online consultation on education
Across Eastern Europe and Central Asia (EECA) there is an increasing desire to share palliative care expertise across country borders. This applies to collaboration between countries inside the region, and also to learning from countries outside the region such as the UK.

During the last few months there have been several events bringing together the palliative care community from around the region, all held bilingually in Russian and English. In October there was a meeting at the EAPC Congress, followed in early November by a full day’s session at Russia’s main palliative care conference.

On 29 November PACED built on these initiatives by running a regional consultation to advance palliative care education. Held online, PACED’s collaborators across the region formed country delegations including a mix of practitioners, educators and NGOs. This led to over 50 people from fourteen countries coming together to describe challenges, share ideas and consider practical solutions.

The meeting began with participants hearing from Dr Susie Wilkinson from the Centre for Communication Skills at the Palliative Care Institute, University of Liverpool. Susie described the importance of communication skills in providing good quality palliative care, and explained how her institute had developed a very successful two day course. She also explained how, to her great surprise, the pandemic had revealed that many communication skills can effectively be taught online.

The meeting then held open discussions to consider two themes: first, a focus on education for healthcare workers – both before they qualify and throughout their careers. Participants discussed the different challenges in primary, secondary and tertiary/specialist settings and the role that online learning can play. The discussion then turned to the challenges facing educators in medical and nursing schools, where faculty members may not have clinical experience of palliative care, teach in isolation from other educators and without the back-up of a palliative care department. The many insightful contributions of this session is intended to help PACED plan its programme of work for 2022.

The evaluations from the meeting confirmed this is valuable and necessary work. “Thank for very much for this brilliant initiative!” wrote one participant. We are now writing up a full report on the meeting which we look forward to sharing with you soon.
The world gathers online for the Russian palliative care conference
On 2nd and 3rd November 2021, Russia’s leading palliative care conference took place online and included a full day session on palliative care in the EECA/CIS region. This year’s conference attracted over 2500 participants, which shows a remarkable level of interest.

The conference theme was ‘Development of palliative care for adults and children’ and the event was organised by the Hospice Care Professionals Association (HCPA), with support from Sechenov University, the Worldwide Hospice Palliative Care Alliance and the American Eurasian Cancer Alliance. This annual event is the largest educational event in Russia for specialists providing care to adults and children with severe progressive and life-limiting diseases. This year’s conference brought together experts from around the world, with 80 lecturers from 12 countries.

After an opening plenary, the conference divided into three parallel symposiums and, on Tuesday 2 nd November, there was a full day, English/Russian bi-lingual symposium on the organisation of palliative care in EECA/CIS countries. With the HCPA’s Chair Diana Nevzorova presiding, this excellent session investigated obstacles and progress in various countries of the region, and included discussion of chronic pain management in palliative care. Alongside this, PACED’s Chief Executive Mike Mandelbaum gave a presentation on new initiatives in professional education in EECA.

A paediatrician from St Petersburg described the conference as “Two days of a miracle” and PACED was equally enthused. “This was an excellent event”, said Mike Mandelbaum, “bringing together practitioners and experts from Russia, EECA and around the world to
share ideas and insights. It was a pleasure for PACED to be involved and to receive positive feedback about our work with stakeholders from all around the EECA region.”
PACED bursaries to the European Association for Palliative Care’s Online Congress
The EAPC Congress is one of the palliative care world’s most important gatherings. It provides a place for people to meet – although this year online – and hear new ideas, initiatives and developments from around Europe. This year’s theme was “Exploring New Dimensions” and, given the impact of COVID-19, we heard how the palliative care community has responded to this unprecedented modern challenge.

People from low and middle income countries, where palliative care is often in its relative infancy, can learn so much from these events, but the cost of registering often prevents them from attending. So PACED, in partnership with the EAPC, provided ten bursaries to this year’s Congress for people from Eastern Europe and Central Asia.

We received many more requests for bursaries than we could provide, so we picked the successful people to represent a cross-section of countries and roles. Our ‘PACED team’ represented Armenia, Belarus, Georgia, Kazakhstan, Moldova and Ukraine. We look forward to telling you about their experiences of the Congress later during the coming months.
Global meeting on “Development of CIS in CIS countries”
PACED was proud to work with leading regional and global organisations to co-sponsor an online meeting to exchange experience on palliative care issues in CIS/EECA countries, with the aim of initiating changes across the region to improve country strategies. The meeting, on 5 October, formed part of the pre-Congress sessions of the European Association for Palliative Care’s Online Congress.

The session brought together specialists, professional communities and policymakers from across the region. Our co-sponsors were the World Hospice Palliative Care Alliance, Hospice Care Professionals Association (Russia), American Eurasian Cancer Alliance and European Association for Palliative Care.
50 at 80: Robert Twycross – a life still committed to palliative care
In the year when he turned 80 years of age, our founder and Trustee Robert Twycross marked 50 years working in palliative care. From his early career as a Research Fellow alongside Dame Cicely Saunders at St Christopher’s Hospice, to the ensuing decades spent caring, researching, educating and writing, Robert was – and remains – one of the most respected people in palliative care. Congratulations Robert, and thank you for continuing to be a source of expertise, wisdom and inspiration.
Fourteen countries join PACED’s online consultation on education
Across Eastern Europe and Central Asia (EECA) there is an increasing desire to share palliative care expertise across country borders. This applies to collaboration between countries inside the region, and also to learning from countries outside the region such as the UK.

During the last few months there have been several events bringing together the palliative care community from around the region, all held bilingually in Russian and English. In October there was a meeting at the EAPC Congress, followed in early November by a full day’s session at Russia’s main palliative care conference.

On 29 November PACED built on these initiatives by running a regional consultation to advance palliative care education. Held online, PACED’s collaborators across the region formed country delegations including a mix of practitioners, educators and NGOs. This led to over 50 people from fourteen countries coming together to describe challenges, share ideas and consider practical solutions.

The meeting began with participants hearing from Dr Susie Wilkinson from the Centre for Communication Skills at the Palliative Care Institute, University of Liverpool. Susie described the importance of communication skills in providing good quality palliative care, and explained how her institute had developed a very successful two day course. She also explained how, to her great surprise, the pandemic had revealed that many communication skills can effectively be taught online.

The meeting then held open discussions to consider two themes: first, a focus on education for healthcare workers – both before they qualify and throughout their careers. Participants discussed the different challenges in primary, secondary and tertiary/specialist settings and the role that online learning can play. The discussion then turned to the challenges facing educators in medical and nursing schools, where faculty members may not have clinical experience of palliative care, teach in isolation from other educators and without the back-up of a palliative care department. The many insightful contributions of this session is intended to help PACED plan its programme of work for 2022.

The evaluations from the meeting confirmed this is valuable and necessary work. “Thank for very much for this brilliant initiative!” wrote one participant. We are now writing up a full report on the meeting which we look forward to sharing with you soon.
The world gathers online for the Russian palliative care conference
On 2nd and 3rd November 2021, Russia’s leading palliative care conference took place online and included a full day session on palliative care in the EECA/CIS region. This year’s conference attracted over 2500 participants, which shows a remarkable level of interest.

The conference theme was ‘Development of palliative care for adults and children’ and the event was organised by the Hospice Care Professionals Association (HCPA), with support from Sechenov University, the Worldwide Hospice Palliative Care Alliance and the American Eurasian Cancer Alliance. This annual event is the largest educational event in Russia for specialists providing care to adults and children with severe progressive and life-limiting diseases. This year’s conference brought together experts from around the world, with 80 lecturers from 12 countries.

After an opening plenary, the conference divided into three parallel symposiums and, on Tuesday 2 nd November, there was a full day, English/Russian bi-lingual symposium on the organisation of palliative care in EECA/CIS countries. With the HCPA’s Chair Diana Nevzorova presiding, this excellent session investigated obstacles and progress in various countries of the region, and included discussion of chronic pain management in palliative care. Alongside this, PACED’s Chief Executive Mike Mandelbaum gave a presentation on new initiatives in professional education in EECA.

A paediatrician from St Petersburg described the conference as “Two days of a miracle” and PACED was equally enthused. “This was an excellent event”, said Mike Mandelbaum, “bringing together practitioners and experts from Russia, EECA and around the world to
share ideas and insights. It was a pleasure for PACED to be involved and to receive positive feedback about our work with stakeholders from all around the EECA region.”
PACED bursaries to the European Association for Palliative Care’s Online Congress
The EAPC Congress is one of the palliative care world’s most important gatherings. It provides a place for people to meet – although this year online – and hear new ideas, initiatives and developments from around Europe. This year’s theme was “Exploring New Dimensions” and, given the impact of COVID-19, we heard how the palliative care community has responded to this unprecedented modern challenge.

People from low and middle income countries, where palliative care is often in its relative infancy, can learn so much from these events, but the cost of registering often prevents them from attending. So PACED, in partnership with the EAPC, provided ten bursaries to this year’s Congress for people from Eastern Europe and Central Asia.

We received many more requests for bursaries than we could provide, so we picked the successful people to represent a cross-section of countries and roles. Our ‘PACED team’ represented Armenia, Belarus, Georgia, Kazakhstan, Moldova and Ukraine. We look forward to telling you about their experiences of the Congress later during the coming months.
Global meeting on “Development of CIS in CIS countries”
PACED was proud to work with leading regional and global organisations to co-sponsor an online meeting to exchange experience on palliative care issues in CIS/EECA countries, with the aim of initiating changes across the region to improve country strategies. The meeting, on 5 October, formed part of the pre-Congress sessions of the European Association for Palliative Care’s Online Congress.

The session brought together specialists, professional communities and policymakers from across the region. Our co-sponsors were the World Hospice Palliative Care Alliance, Hospice Care Professionals Association (Russia), American Eurasian Cancer Alliance and European Association for Palliative Care.
50 at 80: Robert Twycross – a life still committed to palliative care
In the year when he turned 80 years of age, our founder and Trustee Robert Twycross marked 50 years working in palliative care. From his early career as a Research Fellow alongside Dame Cicely Saunders at St Christopher’s Hospice, to the ensuing decades spent caring, researching, educating and writing, Robert was – and remains – one of the most respected people in palliative care. Congratulations Robert, and thank you for continuing to be a source of expertise, wisdom and inspiration.
New PACED Newsletter
We want to keep you informed not just about developments at PACED but around the palliative care world, especially in EECA. So please sign up for our new newsletter which we will soon be launching.

New PACED Newsletter
Sign up to PACED's new newsletter which we are shortly launching!
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