‘Tour de Hospice’: Two women on wheels – destination #EAPC2019 Berlin

ONLY THREE DAYS TO #EAPC2019 … AHEAD OF THE 16TH WORLD CONGRESS OF THE EUROPEAN ASSOCIATION FOR PALLIATIVE CARE (EAPC) TO BE HELD IN BERLIN, GERMANY, 23 TO 25 MAY 2019, WE BRING YOU ANOTHER POST IN OUR SERIES, ‘WELCOME TO BERLIN’. 

Among more than 3,000 people attending the congress will be two women from Bavaria whose journey will be unique: they will travel more than 500 kilometres to Berlin – by bicycle. Dr Irmgard Singh, from a day hospice in Kleingmain, Austria, and Ms Sabine Brantner, from Anna Hospizverein in Mühldorf, Germany, invite you to meet them along the way.

Dr Irmgard Singh (left) and Ms Sabine Brantner preparing for their journey to Berlin.

The special feature of our journey to this year’s 16th EAPC World Congress is that we’re cycling all the way – from Salzburg to Berlin. And we’re doing it to draw attention to the fact that hospice and palliative care is not about dying, it’s about living. Hospice and palliative care is an offer for life – it’s about the quality of life and living life to the full.

On the way, we want to meet people – on the street, in other hospices, when we’re eating or in places where we’re staying. We want to talk to them and hear about their own experiences and concerns, and what characterises successful hospice work.

‘Tour de Hospice’ – the route that Sabine and Irmgard will take to Berlin.

Our journey started at 15:00 on Friday, 10 May, when we left the LebensraumTageshospiz in Salzburg. You can see some of the places we’ll be passing through on the map, or follow our journey on our blog.   If you’d like to meet us along the way, please contact us at the links below.

How the idea for a bike ride grew…

The germ of the idea to cycle from Salzburg to Berlin started back in October 2018 in London. We were both part of a multiprofessional group of Bavarian hospice staff visiting two London hospices, St Christopher’s and St Joseph’s, to get an insight into the ‘local hospice and palliative care scene’. We got on well together and decided to meet again. We wanted to do something that combined our common professional interest as palliative care practitioners but which would also work well with a non-specialist topic – something that might generate interest in, and awareness of, hospice and palliative care. Eventually, the idea evolved of travelling to the next EAPC World Congress by bike. But as the congress was to take place in Berlin, we would need to cycle more than 500 kilometres from Salzburg to Berlin – and back!

On the way, we want to visit ‘our fellow campaigners’ in local hospices and talk to people on the streets – to raise awareness and engage with local people. What we experience, we will take – as a message – to the congress in Berlin. We plan to arrive in Berlin on 23 May and will attend the congress on Friday 24 May.

A word about us: we are two happy women in our early fifties who have been working with people at the end of their lives for many years. We hope that our project will help to raise people’s awareness of hospice and palliative care and that we’ll have the chance to meet some of you along the way…

Please contact us at the links below if you’d like to meet us during the rest of our journey to Berlin – and follow the journey on our blog.

Links

Join us in Berlin at #EAPC19

The 16thEAPC World Congress: Global Palliative Care – Shaping the Future, takes place in Berlin, Germany, 23 to 25 May 2019. View and download the final congress programme here.  And there’s still time to register here.

 

 

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Is palliative care biased?

ONLY SEVEN DAYS TO #EAPC2019 … AHEAD OF THE 16THWORLD CONGRESS OF THE EUROPEAN ASSOCIATION FOR PALLIATIVE CARE (EAPC) TO BE HELD IN BERLIN, GERMANY, 23 TO 25 MAY 2019, WE BRING YOU ANOTHER SPECIAL POST TO WELCOME YOU TO BERLIN.

Professor Merryn Gott, Director of Te Arai Palliative Care and End of Life Research Group, New Zealand, gives a glimpse of the plenary lecture she will give at #EAPC2019 in Berlin on Friday 24 May 2019.

Professor Merryn Gott

Being asked to talk on the topic ‘Is palliative care biased’ felt like a mixed blessing. On the one hand, very exciting as it meant I got to talk about an issue I have been passionate about for a very long time, namely equity within palliative care. On the other hand, slightly overwhelming because – as one colleague so eloquently put it – ‘where the hell do you start?’

I decided to start with gender for several reasons. Firstly, there has been a systematic and largely unconscious neglect of gender in palliative care research, practice and policy. Secondly, there is significant evidence that gender influences end of life preferences, experiences and care. And finally, gender determines how we are treated at the end of life. The social situations of older women are often different to those of older men. Which, I will argue and demonstrate with examples, must be recognized if palliative care is to be effective for everybody. Also, focusing on gender is a first step in raising awareness about the intersectionality of social constructs – such as ethnicity, sexual orientation and socio-economic status – and their pertinence to palliative care.

When I started reviewing the literature I was not surprised to find little explicitly referring to gender as we published a systematic review a few years ago, which had come to this conclusion.However, what I was surprised by was how pervasive the influence of gender on end of life experience is. I found evidence that your gender determines:

  • when you are diagnosed with of a life-limiting illness,
  • your pain management,
  • the ‘choices’ you make during Advance Care Planning,
  • the extent of medical intervention received at end of life,
  • your experience of palliative care, and
  • where you die.

I also found that the gendered nature of end of life circumstances not only disadvantages women, but men as well. I will clearly show that gender is a topic relevant to all palliative care researchers – whether you work in a lab or in an intensive care unit (ICU) – whether you are a drug triallist or a qualitative researcher.

Essentially, my presentation will be a call to attend to gender as a social determinant of dying in all our thinking about palliative care. I will argue that we need to reach beyondbiology to considermen and women’s life conditions, lifestyles and positions in society, as well as societal expectations about ‘femininity’ and ‘masculinity’. This prompts us to think beyond health services and ask questions such as “What impact do the significantly higher levels of poverty among older women when compared with older men have upon their end of life choices?”

Because, as I remember one research participant saying to me – as she cast her eye over her threadbare carpet and fire she couldn’t afford to light – “my house is not a nice place to live, let alone a nice place to die”.

Reference

  1. Morgan, T., Ann Williams, L., Trussardi, G., & Gott, M. (2016). Gender and family caregiving at the end-of-life in the context of old age: A systematic review. Palliative Medicine30 (7), 616-624.

Links

JOIN US AT #EAPC2019 IN BERLIN…
Prof Merryn Gott will give her plenary lecture,‘ Is palliative care biased?’ at 09:00-09:30 on Friday 24 May 2019 in Convention Hall II at the 16th EAPC World Congress in Berlin.

View and download the final congress programme for all the congress presentations and posters. Or, use the interactive programme tool to browse and put together your personal congress schedule. More than 3,000 delegates from across the world will be joining us in Berlin – and it’s not too late to register here.

 

The abstract for this lecture, and all other abstracts for the 16th EAPC World Congress, will be published on 22 May 2019.

 

 

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Volunteers at the Heart of Hospice and Palliative Care: International Symposium at #EAPC2019

ONLY EIGHT DAYS TO #EAPC2019 … AHEAD OF THE 16THWORLD CONGRESS OF THE EUROPEAN ASSOCIATION FOR PALLIATIVE CARE (EAPC) TO BE HELD IN BERLIN, GERMANY, 23 TO 25 MAY 2019, WE BRING YOU ANOTHER  SPECIAL POST TO WELCOME YOU TO BERLIN.

With volunteers such an integral part of hospice and palliative care, it’s vital to future proof the extent of their huge contribution. Leena Pelttari and Ros Scott, Co-chairs of the EAPC Task Force on Volunteering in Hospice and Palliative Care, invite you to join speakers and participants from Europe, India, Africa and beyond to learn, reflect and share experiences in an International Symposium on Saturday 25 May in Berlin.

Ros Scott and Leena Pelttari

The EAPC Volunteering Task Force Steering Group recently had a lively discussion about volunteering, what was changing and whether new, emerging models of volunteering were impacting on more traditional models.

We also touched on the word ‘volunteering’, its use and different interpretations. It is used as if we were describing a uniform group of people all doing the same kind of thing, not quite part of the hospice and palliative care (HPC) team, but peripheral to it. But do we recognise the diversity of HPC volunteering – people in many countries of all ages, genders, involved in a wide range of activities?

Do we recognise that volunteers also sit with people in the last days and hours of life? Are involved in spiritual and religious care? Do we recognise the people who help organisations to function and who raise funds and awareness? Do we understand how much this means to volunteers, how they experience and reflect on this? Do we stop to think that changes in HPC influence volunteering and that changes in volunteering ultimately have an influence on HPC?

As volunteers are such an integral part of HPC it is vital that we take time to learn, consider, and discuss what is happening in HPC volunteering today so that we can plan for the future. On Saturday 25 May 2019 at the Estrel Congress Center in Berlin there will be a great opportunity to do exactly this. As part of the 16thEAPC World Congress, the International Symposium, Volunteers at the Heart of Hospice and Palliative Care – Opportunities and Challenges 2030′, provides a day for all those with an interest in HPC volunteering to come together to learn, reflect and share experiences.

This is a day not to be missed! With a line up of highly respected international speakers, topics include Compassionate Communities with Dr RM Rajagopal from India, HPC volunteering in Africa with Fatia Kiyange, a European panel discussion to consider volunteering in 2030, findings from recent research and hearing at first hand volunteers’ experiences. There will also be a lively World Café session where we can share and learn from one another.

The organisers (EAPC Task Force on Volunteering in Hospice and Palliative Care in Europe, German Association for Palliative Medicine, German Hospice and Palliative Care Association and Hospice Austria) are grateful to the German Federal Ministry for Family Affairs, Senior Citizens and Women’s Health for generously funding this Symposium and also to the ERSTE Foundation for funding travel costs for participants from Eastern European Countries.

So please come and join this important and exciting event! The Symposium is free to attend, but you should register here. More information on the programme can be found here.

JOIN US IN BERLIN FOR #EAPC2019 – for more presentations and posters on volunteering in palliative care
As well as the International Symposium on Saturday 25 May, look out for more volunteering events at 16th EAPC World Congress in Berlin.

Thursday 23 May 2019

  • Plenary presentation EAPC Charter Voice of Volunteering, Ros Scott 15:50 to 16:00 Convention Hall ll.

 

 

Friday, 24 May 2019

  • Hospices Harnessing Communities: Challenges and Benefits of Community Volunteering Programmes, Ros Scott and Jean Hindmarch, 12:30 to 12:45.
  • Open Meeting of the EAPC Task Force on Volunteering in Hospice and Palliative Care. 12:55 to 14:15, room 5, 2nd floor. 
  • Plenary presentation: The Liminal Space Palliative Care Volunteers Occupy and the Roles they Perform within it: A Qualitative Study, Steven Vanderstichelen. 15:30 to 15:50, Convention Hall II.
  • And lots of posters on volunteering…

View the full 16th EAPC World Congress programme here.  Register here.
Read more posts about Volunteering in palliative care.
Read more posts about the 16th EAPC World Congress.

 

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Searching for meaning: A film for Dying Matters Week 2019

Every year in May across the UK, Dying Matters and its members host an Awareness Week, placing the importance of talking about dying, death and bereavement firmly on the national agenda. Jean-Francois Rodrigues hopes that his documentary film will help to raise awareness and empower people to ask the right questions to the right people.

Jean-Francois Rodrigues

As a documentary filmmaker, at no point did I ever imagine how close and personal my next film would be. This post explains the inspiration for my film, Searching for Meaning, which is being  shown during this year’s Dying Matters Week.

It’s a year since my mother died in hospital from cancer at the age of 93. Her time in hospital was short, only a week from diagnosis to her death. Unfortunately, my mother was a victim of misdiagnosis. Prior to hospital, she was treated for acid reflux, instead of receiving the palliative care she so deserved. When finally diagnosed with terminal cancer, the palliative care she needed still eluded her.

Nevertheless, not all the blame should fall to those who medically cared for her. I, as her son, need to shoulder some of the blame. I was familiar with the term ‘palliative’ but, even at the age of 53, and with all my life experience and that I too am receiving palliative care, I was clueless about what it really meant. I insisted that my mother stayed in the hospital, even though there was nothing they could do for her. I had no idea it was OK for my mother to go home and that assistance would be offered during her time there.My mother never wanted to die in hospital and had I known that her lifespan was a mere few days, I would possibly have allowed her to die at home.

So where did this leave me? At first, I wanted to justify my ignorance by telling myself  “Well does anyone reallyknow what palliative care is?” Then, with the help of Google and by asking around, I discovered that the lack of understanding was rampant. So I was proven right, but not vindicated.

Dame Cicely Saunders, founder of the modern hospice movement, said: “How people die remains in the memory of those who live on.”

How my mother died stays with me to this day. So, to help others avoid my situation, Searching for Meaning was born.

Laura and Peter Bashford – Laura is featured in the documentary and is one of the most inspirational people I know (Jean-Francois Rodrigues).

The narrative is different from most palliative care documentaries. The aim is to raise awareness and encourage open and honest discussions about death. In the film I start from the beginning and examine why death is still taboo; I dispel myths about palliative care and the fear sometimes associated with hospices. I also break down what end-of-life care means, what care is currently available, what is the care of the future and so much more. However, the documentary is not without that personal connection. I interview a patient diagnosed with terminal cancer. Her story is not one of dying but of her living the best she can. It’s a beautiful story and we talk to her family who also rejoice in her life knowing their time with her is limited.

As a filmmaker, people encouraged me to make a documentary about the poor service my mother received. I declined because I felt that showing the negative side of an institution where a lot of good people worked, would not have had as big an impact as using the documentary to educate and empower people to make an informed decision, by raising awareness around end-of-life care and palliative care.

I hope that my film will enable people to ask the right questions to the right people. Is that not what most of us want? Our questions answered and our minds put at ease?

To find out more

 

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EAPC Board Elections 2019 – a message from the President

The upcoming elections for a new board of directors of the European Association for Palliative Care (EAPC) are your opportunity as members to decide how we go forward. In yesterday’s post, we introduced our candidates; today, Professor Phil Larkin, President, European Association for Palliative Care, explains the voting procedure.

Phil Larkin

As our 16th World Congress is on the horizon, it is time to focus on one of the most important aspects of the event which is the election of the new board. I have noted some of this in an earlier blog post but, with our move to Belgium, we had opportunity to revise and refine the process of the board elections and to make sure everyone knows about the regulations and how to vote. So now I am writing another short post for your information.

The first point is who can actually vote?

We now have four levels of EAPC membership

Individual members are individuals working in palliative care based in Europe and who have registered and have paid their fees for 2019.

National Association Board Members are all board members of our national association member organisations who have paid their membership fees and been registered by their national association as one of their board members for 2019.

If you are one of these members (above) you are eligible to vote. For you to be eligble to vote, fees must have been paid no later than 30th April 2019. You are welcome to pay your membership fee at the EAPC stand during the congress but you will not be able to vote in this election unless you join or renew in advance.

Associate members are:

  1. Members of European Palliative Care associations that pay a collective membership fee.
  2. Individuals engaged in palliative care as clinicians, educators, researchers, or policy experts who are based outside of Europe (as defined by the World Health Organization) who register as individual members and pay the appropriate fee.

Affiliate members are other individuals and organisations working in other specialities in Europe.

Associate members and Affiliate members (either individuals or organisations) are not eligible to vote. Associate members may attend the General Assembly, which will be held during the EAPC World Congress in Berlin.

What about proxy votes?

Each board member of an EAPC European National Association and individual EAPC members based in Europe, who have paid their membership fee before 30thApril 2019, may carry a maximum of five proxy votes. Proxy votes are available to eligible voting members who are not able to attend the election in person. The proxy vote form is now available here. The proxy form must be completed by the person for whom you are carrying the vote. Eligibility will be checked at the election room at the congress.

How and where will the vote take place?

An election committee has been created, comprising members of the current board who are retiring, supported by head office. The vote will take place on Friday 24th May 2019 from 11:00 to 15:00 at the Congress. You can attend at any time during this period. You must have your EAPC membership number and photographic identification with you, which will be checked against a register of eligible members;  you will then be given a ballot paper to cast your votes. Proxy forms must be handed to a member of the election committee for validation.

Who should I vote for?

New candidates. Top row clockwise: Karl Bitschnau, Danguole Ruzeviciene,Paddy Stone, Ron Sabar, Steffen Eyschmuller, Sonja McIlfatrick.

You need to elect a total of 13 members for the new board. The list of candidates and information about them can be found here. Please read this to help make your selection. We have six current board members who are standing for re-election. Their role is important in making the link between the work of the current board and the new board so we do ask you to give careful consideration to re-electing them. You then need to select a further seven from the list of potential candidates.

New candidates. Top row clockwise: Jeroen Hasselaar, Sandra Martins Pereira, Tomasz Dzierżanowski, Martin Loučka, Natasha Pedersen, Gert Huysmans.

Some points to consider:

  1. You must select 13 candidates. If you do not, your vote will be invalid.
  2. The board should be representative of a range of professional disciplines, gender balance and the whole of Europe: north, south, east and west. This is important because in the event of a tie for the final board place, the election committee will need to make a decision based on these criteria in relation to overall balance of the board.

Standing for re-election. Top row clockwise: Catherine Walshe, Sébastien Moine, Danila Valenti, Josep Porta-Sales, Daniela Mosoiu, Christoph Osthgathe.

 

What happens then?

Once the voting is complete, the election committee will count the votes. The 13 candidates with the highest number of votes will be elected to the board. Results will be announced at the EAPC General Assembly on Friday 24th May 2019 at 18:30.

The new board will meet immediately after the election to select a new President and Treasurer from amongst the board members. The President, Treasurer and the rest of the new board will also be presented to the Congress delegates before the plenary session on Saturday morning 25th May 2019.

What if I have questions?

If you have any questions at all in advance of the election, please email Cathy Payne. EAPC head office staff will also be available at the EAPC stand during the Congress if you need to clarify anything.

Some final thoughts…

The elections are your opportunity as members to decide how we go forward. The decisions you make are important in terms of continuity, new vision and our future. With your mandate, the EAPC can continue to promote its mission of One Voice, One Vision in Palliative Care. If you are eligible to vote, please do. Your vote is important to us. It is also important that you check that your membership subscription is paid in advance to ensure your eligibility to vote. If you are unclear, please email head office.

Thank you for your contribution to the future of the EAPC.

There’s still time to register for the 16th EAPC World Congress in Berlin. View the final congress programme here.

 

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EAPC Board elections 2019: Introducing our candidates

Today, we introduce our candidates. Tomorrow, EAPC President Professor Phil Larkin, will explain the voting procedures…

In just ten days’ time, on 24 May, a new Board of Directors of the European Association for Palliative Care (EAPC) will be elected for a four-year term. The EAPC will also have a new president. This is an important process because our board members are really the lifeblood of the EAPC. Together, they comprise professionals from all disciplines, at all stages of their career, and from all parts of Europe. Each board member brings different expertise, experiences and skills which enable us to represent the cultural and political diversity of our members and to fulfil our aim of speaking with ‘one voice and one vision’ on matters that are important in palliative care.

Writing in the blog in December 2018, EAPC President, Professor Phil Larkin, emphasised the importance of preparing for the EAPC Board elections and urged members to start thinking about who should represent their views for the next four years.  Members responded positively to Phil’s encouragement and we are delighted to introduce you to an exciting lineup of candidates whose backgrounds include: academic research, ethics, management, medicine, nursing, psychology, psychotherapy, social work and theology. Children’s palliative care is a prioity for at least two candidates, both of whom are founders of initiatives in their own countries. Six existing board members are standing for re-election who, if successful, will provide the continuity and wisdom of the previous board.

Standing for re-election. Top row clockwise: Catherine Walshe, Sébastien Moine, Danila Valenti, Josep Porta-Sales, Daniela Mosoiu, Christoph Osthgathe.

Meet our candidates

In total, we have 18 candiates from 17 countries. Standing for re-election are:

Daniela Mosoiu, a physician and Director of Education and National Development at Hospice Casa Sperantei in Brasov, Romania.
Danila Valenti, a physician, Head of the Palliative Care Network and Director of the Network of Palliative Care Complex Care Unit of the local health authority in Bologna, Italy.
Catherine Walshe, a nurse and Professor of Palliative Care at the International Observatory on End of Life Care at Lancaster University, UK.
Dr Sébastien Moine, an academic general practitioner from France, currently a visiting fellow at the University of Edinburgh, Scotland, and Co-chair of theEAPC Primary Care Reference Group.
Christoph Ostgathe, a physician and Professor of Palliative Medicine at the University of Erlangen, Bavaria, Germany.
Dr Josep Porta-Sales, a physician, Head of Support and Palliative Care at the Catalan Institute of Oncology (Girona), Spain, and Director of the ‘WeCare End of Life Care Chair’ at the ‘Universitat Internacional de Catalunya’.

New candidates standing for election

Danguole Ruzeviciene, a physician and Head of the first Children’s Pain and Palliative Care Clinic in Lithuania.
Gert Huysmans, a physician andPresident of the Federation of Palliative Care Flanders in Belgium.
Jeroen Hasselaar, a senior researcher and Assistant Professor of Palliative Care at Radboud University Medical Center in Nijmegen, the Netherlands.
Karl Bitschnau, a social worker, Vice President of Hospice Austria and Co-Chair of the EAPC Task Force for Palliative Care Social Workers.

New candidates. Top row clockwise: Jeroen Hasselaar, Sandra Martins Pereira, Tomasz Dzierżanowski, Martin Loučka, Natasha Kjærstad Pedersen, Gert Huysmans.

Martin Loučka, a psychologist and palliative care researcher, founder and Head of the Center for Palliative Care in the Czech Republic.
Natasha Kjærstad Pedersen, trained in theology and health care, and founder and Chief Executive of The Norwegian Association for Children’s Palliative Care.
Paddy Stone, a physician, Professor of Palliative Medicine and Head of the Marie Curie Palliative Care Research Department at University College London, UK.
Ron Sabar, a physician and founder and Head of Sabar Health, the first publicly funded for-profit national home hospice programme in Israel.
Sandra Martins Pereira, a nurse and a researcher at the Institute of Bioethics, Universidade Católica Portuguesa, Porto, Portugal. Co-chair of the EAPC Task Force, ‘Preparation for Practice in Palliative Care Nursing across the EU’.
Sonja McIlfatrick, a nurse and Professor of Nursing and Palliative Care and Head of School of Nursing at Ulster University in Northern Ireland.
Steffen Eychmüller, a physician, Chair for Palliative Care at the University of Bern, Switzerland, and Head of the Centre for Palliative Care at the University hospital in Bern.
Dr Tomasz Dzierżanowski, a physician, medical director of four palliative homecare facilities and an assistant professor conducting research and teaching in universities in Warsaw and Lodz, Poland.

New candidates. Top row clockwise: Karl Bitschnau, Danguole Ruzeviciene, Paddy Stone, Ron Sabar, Steffen Eychmüller , Sonja McIlfatrick.

Find out more about our candidates

Please view the nominations page of the EAPC website where you can find a personal statement for each candidate. Read what inspired their career in palliative care, their achievements and what they plan to bring to the board if elected.

Casting your vote

As Phil said in his earlier post:

“The EAPC needs to speak to the broad range of people involved in palliative care today so please bear that in mind when you cast your votes. Board members represent EAPC, not their respective countries, and so your vote should not just focus on your national candidate but you should consider all of the candidates and think about who will add something strong, innovative or different to the EAPC …This board has done great work. The next, I am sure will do the same. Who they will be is entirely up to you…”

Please read the candidates’ personal statements here. If you’re an EAPC member, eligible to vote, and you’re attending the EAPC World Congress in Berlin, please vote on Friday 24 May 2019 between 11:00 to 15:00 in room Estrel C2 of the congress venue.

TOMORROW ON THE EAPC BLOG, PROF PHIL LARKIN EXPLAINS THE VOTING PROCEDURES.

Join us at #EAPC2019 for the 16th EAPC World Congress. View the full congress programme here.

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How do cancer patients feel about different types of anticoagulants for blood clots?

THIS MONTH’S EDITOR’S CHOICE FROM PALLIATIVE MEDICINE …

Ann Hutchinson and Miriam Johnson from the Hull York Medical School, University of Hull, England, explain the background to their longer article selected as ‘Editor’s choice’ in the May 2019 issue of Palliative Medicine.

Prof Miriam Johnson (left) and Dr Ann Hutchinson.

Clinicians are rightly concerned that the burden of long-term injectable anticoagulation in people with cancer and thrombosis is significant. We therefore interviewed 37 people with cancer-associated thrombosis about their experiences of taking anticoagulants in the form of injections and/or tablets. The patients interviewed were taking part in the select-d trial (investigating the relative efficacy and safety of rivaroxaban [tablet] and dalteparin [injection]) run by the University of Warwick.

Patients told us that they found tablets convenient but that they found injections were acceptable in the context of having cancer, especially if they were supported to overcome their initial worries about self-injection. Despite drawbacks such as scarring and bruising around the injection site, they said the injections were a small price to pay to treat the life-threatening blood clots.

“You’re just feeling that you’re actually doing something, it’s a step forward. It’s contributing, me stomach’s not good at this moment, but if I keep injecting me leg’s going down, I can see, look, it’s turning back to what it were.”P4

Although patients find taking tablets easier, many would only choose tablets over injections only if they were as safe and effective as the injections.

“If a tablet would serve the same purpose then I would certainly sooner take a tablet, but … if the injections are an advantage then it’s worth putting up with the discomfort. “P11

An additional finding, confirming other reports  and a recent European survey of over a thousand people with cancer, was that although cancer patients have a four- to five-fold greater risk of getting blood clots than the general population, most of our study participants did not know that they were at increased risk. Importantly, neither did they know the signs and symptoms for which they should seek medical help; hence they delayed seeking life-saving treatment.

“I’d been in pain with my leg for a good week or so, but you just think it’s part of the cancer.” P2

Blood clot

Based on what patients told us we recommend that:

  • Clinicians take both clinical guidelines and patient preference into account when deciding what treatment to offer for blood clots, without undue worry that injections may be too burdensome for patients.
  • All patients should be informed soon after their cancer diagnosis of their increased risk of blood clots and the danger signs and symptoms.

We are working with Thrombosis UK and Anticoagulation UK to disseminate these findings and to raise awareness amongst cancer patients of their risk of thrombosis.

If you are working with cancer patients, please let them know the signs and symptoms that should trigger seeking medical help quickly; they should not assume these are due to the cancer or other medical conditions.

For more information on our study please listen to our podcast, or on the work of our research group see here.

Links
To contact Ann Hutchinson, please email her here  or find her on Twitter @AHutchinsonHull

To contact Miriam Johnson, please email her here  or find her on Twitter @MJJohnson_HYMS

READ THE FULL ARTICLE IN PALLIATIVE MEDICINE
This post relates to the longer article, ‘Oral anticoagulation is preferable to injected, but only if it is safe and effective: An interview study of patient and carer experience of oral and injected anticoagulant therapy for cancer-associated thrombosis in the select-d trial’ by Ann Hutchinson, Sophie Rees, Annie Young, Anthony Maraveyas, Kathryn Date and Miriam J Johnson, published in Palliative Medicine 2019 Volume: 33 issue: 5, page(s): 510-517. Article first published online: November 29, 2018. https://journals.sagepub.com/doi/10.1177/0269216318815377 Issue published: 1 May 2019.

  • Read earlier Palliative Medicine Editor’s Choice posts on the EAPC blog.
  • Follow Palliative Medicine on Twitter @palliativemedj

EAPC MEMBERS CAN DOWNLOAD THE FULL ARTICLE FREE OF CHARGE
If you are currently an Individual or Associate EAPC Member you have full access to the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles and many other papers too. Just  click here, enter your email address and membership password and choose from the list of journal articles.

How to join as an Individual/Associate Member, or to renew your membership

Note: You can apply to be an Associate Member FREE of charge provided that you are a member of your country’s national palliative care association, and that the association is an EAPC National Association member.

JOIN US AT #EAPC2019 IN BERLIN: ‘GLOBAL PALLIATIVE CARE – SHAPING THE FUTURE’ 23 TO 25 MAY 2019
Dr Ann Hutchinson and Professor Miriam Johnson will both be attending the congress. Do come along to see their posters on breathlessness (PO2-038) and needs assessment in cancer patients (PO2-366) on Friday, May 24. View the full interactive congress programme here. The final programme is also now online! Register here

 

 

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