EAPC 2019 Elections – it’s up to you!

Professor Phil Larkin, President, European Association for Palliative Care, explains how our members can get involved in electing the next EAPC Board of Directors.

Phil Larkin

All good things must come to an end . . .

The time has come for change. After four years (which seem to have passed very quickly), it is time for the members to prepare to elect a new EAPC Board of Directors (2019-2023). The election will take place on 24 May 2019 at the 16th EAPC World Congress in Berlin. In preparation for this, we want to make the election process clear and transparent and, most importantly, easy to understand. It may seem early to start the procedure, but the election is about giving our members opportunities to decide who should represent their views for the next four years – so the sooner we can engage in that discussion the better.

First, we set up an election committee comprising some members who will leave this board, having served the EAPC for up to eight years. Thank you is never enough . . .

The election committee are:

  • Carlo Leget, The Netherlands
  • Irene Murphy, Ireland
  • David Oliver, The UK.

They will be supported by Julie and Eleanor from Head Office in making sure procedures are followed to the letter. Nearer the time, in a series of blog posts, the election committee will explain the voting procedures and how the event will run on the day. We want to keep our members fully informed, so please keep an eye on the EAPC blog.

So if the election committee are responsible for that, why am I writing to you now?

EAPC Board 2015-2019. Front row: (L-R): Danila Valenti, Christoph Ostgathe, Phil Larkin, Irene Murphy, Mai-Britt Guldin. 2nd row: Josep Porta Sales, Tiina Saarto. Third row: David Oliver, Anne de la Tour (resigned 2018), Catherine Walshe, Carlo Leget
Missing from the photo: Daniela Mosoiu, Paul Vanden Berghe and Sébastien Moine.

Considerations when electing someone to the EAPC Board

I think as the President, it is important for me to set out some important principles in terms of what it means to be elected to the board. The current board consists of 13 elected members including the President. As a board member, you commit to a four-year term but with an option for re-election for a further term. In 2019, six members, including myself, will step down and therefore we have seven members who are proposing to stand for re-election. For continuity, it is important to have a ‘thread of wisdom’ from the previous board and, given all the changes that have happened in EAPC in the past four years, that thread will be really important. So I ask voters to please consider carefully those people standing for re-election who will be the bridge to the new board.

Representation is essential, in terms of countries and people’s professional backgrounds. It is really important for balance that we do not have over-representation from one particular group but of course this really depends on who stands for election.

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.

I think it is also important to know that board members represent EAPC, not their respective countries, and so your vote should not just focus on your national candidate (if you have one), but consider all of the candidates and think about who will add something strong, innovative or different to the EAPC.

Eligibility criteria

Your capacity to stand for the board and indeed vote is dependent on being a member of EAPC yourself (an individual member), or a board member of your national membership association. You will need to be able to prove you are a member on the day of election ( dare I ask if you know your membership number?!).

It is also important that your membership organisation has paid its subscription to EAPC by 30 April 2019 at the very latest, because otherwise this may impact on your ability to vote or to be elected.

Electing the President

One thing that will be different to last time is that no candidate will be proposed as Incoming President on the ballot sheet (in case you don’t remember, that was me). The reason for this is that it was a bit confusing to members on the day because the President is actually elected by the new board, not the members. So, people will be asked to vote for all the candidates presented, one of whom will be elected President as an internal process of the board after the election. All candidates and the new President will be announced and presented at Congress.

Becoming a member of the board

Planning ahead, we are now seeking nominations for candidates at this time. If you think it is something that would interest you, I would urge you to talk with your national membership organisation to seek their support. If you are an EAPC member organisation and thinking of putting a candidate forward, now is the time to start looking around and having those conversations. The closing date for candidates to be nominated is 31 January 2019. For more details please see our website.

This board has done great work. The next, I am sure, will do the same. Who they will be is entirely up to you . . .

 Links

  • Click here to find out how you can become a member of the board.
  • If you have any questions, please email Dr Julie Ling, CEO.
  • Look out for upcoming posts from our Elections Committee on the EAPC blog.
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EAPC in Latin America . . .

Professor Phil Larkin, President of the European Association for Palliative Care (EAPC), and Professor David Oliver, EAPC Board member, were invited to the 3rd International Congress of the Peruvian Society of Palliative Care in Lima, Peru, on 12 to 13 October 2018. Here, they tell us a little of what went on at the congress and some of the main challenges facing palliative care in Latin America.

Left to right: Prof Phil Larkin with Prof David Oliver at the 3rd International Congress of the Peruvian Society of Palliative Care.

The congress, entitled ‘Palliative Care in Latin America’, brought together nearly 1,000 people from all over Latin America. Professor Roman Rolke, from Aachen, Germany, was chairman, working closely with the Grünenthal Foundation for Palliative Medicine in Germany, which had sponsored not only the speakers but also all the participants.

The congress followed a high-level meeting of politicians and professionals involved in palliative care across Latin America. This facilitated discussion and understanding of palliative care and several politicians and representatives from universities attended the main two-day congress as well.

Many aspects of palliative care were discussed over the two days with speakers from Latin America, Europe and the USA. Many countries face two opioid crises: a lack of availability and accessibility to the provision of opioids, together with fears of opioid abuse and overdose, which has been discussed in the USA. The median per capita use of morphine is seven mg, compared to a global average of 61mg. The costs of morphine are very variable. In Honduras, it has been estimated that an average worker would have to work for 73 days to earn enough to buy a month’s supply of morphine. There is increasing action to increase accessibility for pain control, but significant challenges remain. There are increasing opportunities for education and the Grünenthal Foundation for Palliative Medicine has sponsored two interdisciplinary masters courses in Peru.

We both contributed to the programme. Phil talked on both the experience of the EAPC in Europe and the contribution of nursing in palliative care practice, education and research. He highlighted the fact that palliative care as a human right is a call to a socially just society which treats not just the clinical but also social need, reflecting the challenges of people living in poverty and with access to resources to sustain care.

David spoke on the developing role of palliative care in neurology and the role of the multidisciplinary approach in the care of this patient group. Other sessions looked at paediatric palliative care, pain management, education, end of life, research and caregiver support.  The participants appreciated the programme and left with a real excitement in developing palliative care across the area.

It was a real privilege to join this amazing meeting of so many people from across Latin America. There was a true feeling of excitement and enthusiasm to develop palliative care across the continent and a true sharing of experiences from across the globe. There was a multidisciplinary approach and audience, including policy makers, universities and politicians.

More about the authors

Professor Phil Larkin is President of the European Association for Palliative Care and Chair and Professor of Palliative Nursing, Lausanne, Switzerland. Listen to the President’s video message on the EAPC website. Contact Prof Larkin by email

Professor David Oliver is a member of the European Association for Palliative Care Board of Directors and Chair of the EAPC Reference Group on Neurology. He is an honorary professor at the University of Kent, UK. Contact Prof Oliver by email.

Links and resources

Read more posts from Phil Larkin and David Oliver on the EAPC blog

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Palliative Care for the homeless: A complex issue

Continuing our  new series is about palliative care in the context of being ‘homeless’ which may include sleeping on the streets, living in a hostel or ‘sofa surfing’. In the coming weeks, we look at the implications of providing palliative care and bereavement care for people who are homeless and how the hospice and palliative care community can offer appropriate support.

Niamh Brophy is Palliative Care Coordinator of St Mungo’s, a UK charity that provides accommodation and support to people experiencing homelessness in London and the South of England. Here, Niamh explains the challenges that face homeless people and how St Mungo’s is working through health, housing, social care and drug and alcohol services to improve access and quality of care to one of the most vulnerable and marginalised groups in our society.

Niamh Brophy

Sadly, homelessness is on the rise in the UK. (1) The numbers of deaths of homeless people sleeping rough on the streets or in temporary accommodation has also risen sharply in recent years. (2) This leads one to ask the question, how are these people dying, and what does palliative care for the homeless look like?

The answer to this question is complex. Access to palliative care for many vulnerable groups is inequitable, with traditional models of care struggling to meet the needs of those who are not in the mainstream. Homelessness is a stark example of this. For this group, and those supporting them, access to care and support as one’s health deteriorates remains poor. Deaths are often found to be undignified, sudden but not unexpected, and with little or no opportunity given to advance care planning. (3)

“I’ve lost on the way to this journey, I’ve lost the special thing that most of us want … Dignity.” Hostel Resident with terminal illness

Such inequalities have been recognised for many years, and led to the development of the St Mungo’s Palliative Care Service in 2008. As Palliative Care Coordinator I have experienced these challenges and inequalities first hand while supporting clients with an advanced illness.

In many cases clients face deteriorating health due to advanced liver disease, the most common cause of death amongst our residents. These illnesses are often compounded by other co-morbidities, with substance use adding an extra layer of complexity.

As a result, mainstream care services struggle to meet the needs of these individuals, with age and substance use issues often leading to exclusion from services. A lack of alternative options for people with such complex needs means individuals often remain in hostels or temporary accommodation until they die, simply because there is nowhere more suitable for them to go. Where they may meet the criteria for residential care or nursing care services, because of their young age, substance use issues or perceived challenging behaviour, they are often excluded.

Recent research affirmed these experiences, highlighting the challenges in accessing specialist care and the lack of options for those who are insecurely housed (4). Common themes emerged reflecting individual, practical and systemic issues that need to be acknowledged and addressed for care to be improved.

Picture with kind permission of St Mungo’s.

At St Mungo’s we aim to support clients to make informed choices about their care. We support staff and other clients affected by the practical, psychological and emotional aspects of approaching the end of life on the street or in a hostel environment. We also train staff to feel more confident in dealing with end-of-life issues including identifying when a client may be dying, having conversations about end of life and bereavement support.

“It’s difficult when someone is dying in such a sad situation – no family, no support, feeling alienated from services. They’ve only got us you know, and we aren’t medically trained. Who is out there that can help us?” Hostel staff.

In the absence of specialist services, we have fostered a multidisciplinary approach to care involving health, housing, social care and drug and alcohol services. This way of working has improved client outcomes by enabling coordinated, realistic, flexible and creative support that clients can relate to. It has also had a significant impact on hostel staff by reducing stress through sharing responsibility for management of risk and concerns, and improving access to advance care planning so clients’ wishes can be respected.

Over the years, we have collaborated with Marie Curie on a resource pack for frontline homeless sector staff and Dying Matters to publish guidance on supporting advance care planning conversations with those experiencing homelessness. This year, we developed a new online toolkit for staff and health professionals working with people who are homeless and require palliative care.

With homelessness rising, and the health needs of individuals experiencing homelessness becoming more complex, we must continue to develop and test interventions and models of care that promote choice, respect and dignity. I hope to see continued discussion about how best to improve access and quality of care to one of the most vulnerable and marginalised groups in our society.

References

  1. Ministry for Housing, Rough Sleeping Statistics Autumn 2017, England. Download the PDF of this document.
  2. Greenfield P, Marsh S. Deaths of UK homeless people more than double in five years, The Guardian, 11 April 2018.
  3. Thomas, Bethan (2012) Homelessness Kills. Crisis Report.
  4. Shulman C, Hudson BF, Low J, Hewett N, Daley J, Davis S, et al. End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care. Palliative Medicine. 2018 Jan; 32 (1): pp.36–45. Published online 2017, July 3. doi.[10.1177/0269216317717101]

Links

Look out for more posts on the EAPC blog about Palliative Care and Homelessness. You can read an earlier post by Professor Kelli Stajduhar about a new study in Canada and next week Anna Felber will tell us about VinziDorf-Hospice in Austria.

 

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Guest editing a focused issue on outcome measurement for advanced disease patients

Bárbara Antunes, Portugal, and Claudia Bausewein, Germany, explain how their longstanding interest in outcome measurement has led to their guest editing the current issue of an open access focused issue of the Annals of Palliative Medicine.

Claudia Bausewein (left) and Barbara Antunes

Claudia Bausewein (left) and Bárbara Antunes

I’m a clinical psychologist and former EuroIMPACT Marie Curie Early Stage Researcher Training Fellow, a European Union-funded project of which the European Association for Palliative Care (EAPC) was a collaborator. Being based at the Cicely Saunders Institute, King’s College London, and having receiving training in multiple European palliative care research centres provided me with training in research in palliative care and allowed me to create a fantastic network of clinicians, researchers and scientists, from different areas and all sharing the same interest in advancing the field.

I have always had an interest in outcome measurement, specifically in patient- centred outcome measures, which is increasingly recognised as a fundamental aspect of providing quality health care, not just in palliative care, but in all areas of health care. Now, based in Portugal, I was delighted when Professor Claudia Bausewein accepted my invitation to co-guest edit a focused issue on this subject, as I knew her invaluable experience would ease the whole process.

Measurement of outcomes of care is paramount to ensure quality and efficacy of the care provided, regardless of diagnosis, setting, population or age. Evidence continues to build and it’s now clear that training on the use of these measures and proper, timely feedback of results, make patient-centred outcome measures powerful tools to quickly make a holistic assessment. It is then possible to act upon the most distressful issues, whilst assisting on developing a therapeutic plan, by benefiting communication among all involved.

We are grateful for the invitation to guest edit this open access focused issue of the Annals of Palliative Medicine, which offers an overview of use of outcome measures in advanced disease from different perspectives. The range of authors from different disciplines and contexts will hopefully be a plus in covering research, as well as practice in different countries and settings. Multiple measures are discussed as well as their many uses.

We present a historical development of outcome measures, followed by the importance of early integration/referral of palliative care in different specialties and acute care settings.

The development of paediatric palliative care assessment tools is discussed, as are the ethical challenges of using outcome measures in palliative care clinical practice.

We explore perspectives of patients, family caregivers and healthcare professionals on the use of patient-centred outcome measures in practice.

Health economics and economic outcomes in palliative and end-of-life care are discussed, namely, a more comprehensive approach to economic outcomes measurement by assessing effects on both costs and outcomes to aid decision makers to weigh up costs and benefits of alternative courses of action.

Finally, we hope this work is useful and would very much like to hear from readers. Please feel free to discuss this focused issue either below in the comments’ section of the blog and/or in the Annals of Palliative Medicine journal website.

Acknowledgements
A huge thank you to all authors and reviewers who gracefully accepted our invitation and contributed to the quality and scientific accuracy of the work published in this focused issue. Even though authors and co-authors are recognised in their work, we would very much like to acknowledge all reviewers for their hard work and thank them sincerely for improving all 12 papers of this focused issue.

More about the authors . . .

Bárbara Antunes, PhD, is a clinical psychologist: Center for Health Technology and Services Research (CINTESIS), Faculty of Medicine University of Porto (FMUP), Centro de Estudos e Investigação em Saúde da UC (CEISUC) in Portugal. She is also a Visiting Research Associate, King’s College London, Cicely Saunders Institute, London, UK. Contact Bárbara by email.
Claudia Bausewein is Director of the Department of Palliative Medicine, Chair for Palliative Medicine, Munich University Hospital, Germany. Contact Claudia by email.

Links and free resources on outcomes measures

Read other posts from Bárbara Antunes and Claudia Bausewein on the EAPC Blog.

 

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Too Little, Too Late: How we fail vulnerable Canadians as they die and what to do about it

This new series is about palliative care in the context of being ‘homeless’ which may include sleeping on the streets, living in a hostel or ‘sofa surfing’. In the coming weeks, we look at the implications of providing palliative care and bereavement care for people who are homeless and how the hospice and palliative care community can offer appropriate support.

A public report on how homeless people live and die, and what can be done to alleviate their suffering and loneliness at the end of their lives, was published last Thursday (1 November) in Canada. Dr Kelli Stajduhar, Professor, School of Nursing and Institute on Aging and Lifelong Health, University of Victoria, Canada, explains . . .

Dr Kelli Stajduhar

For most Canadians, good palliative care is still not a given, despite its many proven benefits. This is especially true for people who experience poverty, homelessness, disability, racialization, or stigma associated with mental illness or illicit drug use. We wanted to find out who these individuals were, how they lived and died, and what we could do to alleviate suffering and loneliness at the end of their lives. For two years, our team conducted over 300 hours of observations and multiple interviews with 25 homeless and vulnerably housed people, their support persons, and service providers. Interviews with decision-makers in homeless-serving agencies across Canada, the United States, and UK supplemented our data.

Our study shone a light on complex barriers to care at end-of-life (EOL) for homeless and vulnerably housed people. Many had experienced a lifetime of poor treatment and discrimination in healthcare settings, which resulted in avoidance and distrust of mainstream healthcare institutions (eg, hospitals) and medical professionals. Participants were diagnosed late in their trajectory and many were not identified as in need of palliative care until they were actively dying. Because of the need to survive, palliative care and even discussions about death and dying were simply absent from participants’ everyday realities and the purview of their support persons and community-based service providers.

Homeless and vulnerably housed people must navigate multiple systems to get what they need, like social assistance, shelter and housing, and food banks, which became exacerbated at the end of life. Lack of continuity and consistency in palliative care service providers created barriers to care for this community, where relationships of trust are paramount. Some participants lived in places that were deemed unsafe for home support and/or home care nurses to attend. A lack of appropriate, affordable, and adequate housing, combined with risk management policies, meant that people could not age in place and were moved (most often into acute care) as their medical needs increased or as they approached the EOL.

Those supporting homeless and vulnerably housed people experienced unmet need, multiple losses, persistent grief and vicarious trauma. Mechanisms for providing support to those who care for dying people are inadequate, given the magnitude of loss and injustice witnessed and experienced.

The news was not all bad though. By and large, when people received a “legitimate” (palliative) diagnosis and were assigned to service providers who had an orientation to palliative care and the social determinants of health, services came around them quickly and efficiently. Participants who received this care told us that it was the first time in their life that they felt heard, valued, and their needs met by the healthcare system.

Going forward, our team is taking findings from this study to work closely with social care workers who work with homeless and vulnerably housed people in shelters (hostels), drop-ins, and on the street to adapt palliative approaches to care in their work settings.

Links and resources

More about the author

Dr Kelli Stajduhar has worked in oncology, palliative care and gerontology for over 30 years as a practising nurse, educator, and researcher. Her clinical work and research have focused on health service needs for those at the end of life and their families, and on the needs of marginalized and vulnerable populations. In 2017, Dr. Stajduhar was named Academic of the Year from the Confederation of University Faculty Associations of British Columbia and was inducted as a Fellow into the Canadian Academy of Health Sciences.

Look out for more posts in this series on the EAPC blog. Next week, Niamh Brophy will tell us about her role as Palliative Care Coordinator of St Mungo’s, a UK charity that provides accommodation and support to people experiencing homelessness in London and the South of England.

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EAPC white paper on advance care planning . . . the sequel

Judith Rietjens (Associate Professor) and Ida Korfage (Assistant Professor) both work in the department of Public Health of Erasmus MC in Rotterdam, the Netherlands. Together, they chaired the European Association for Palliative Care (EAPC) Task Force on Advance Care Planning. In this blog post, they give an update about developments concerning their white paper published in The Lancet Oncology.   

Judith Rietjens

Ida Korfage

Last year, the EAPC Task Force on Advance Care Planning published its white paper in The Lancet Oncology – read the summary here. Aiming at consensus about the concept of advance care planning (ACP), we developed a definition of ACP (see Box) and 41 recommendations for its use. We described the consensus process and the recommendations in our earlier EAPC blog post.

In this post, we want to inform you about new developments.

Box: Consensus definition of advance care planning (extended version)

Advance care planning enables individuals who have decisional capacity to identify their values, to reflect upon the meanings and consequences of serious illness scenarios, to define goals and preferences for future medical treatment and care, and to discuss these with family and healthcare providers. ACP addresses individuals’ concerns across the physical, psychological, social, and spiritual domains. It encourages individuals to identify a personal representative and to record and regularly review any preferences, so that their preferences can be taken into account should they at some point be unable to make their own decisions.

Additional perspectives: replication, translation, and dissemination

To improve dissemination of our definition and recommendations, we have presented the white paper at various conferences around the world. For instance, we were invited to Madrid, Riccione, Kobe and Munich to discuss our findings at major palliative care conferences. Dubai is yet to come . . .

Also, we are very keen to translate our work into local languages and publish in national palliative care journals. Translated versions of the white paper have been published in a Dutch and in an Italian medical journal (see ‘Links and resources’ below), and a Spanish translation will be published very soon. If there is anyone else interested in translating the white paper, we warmly welcome these initiatives!

In our white paper we aimed at providing a general framework for ACP while acknowledging that needs and preferences for ACP in practice will depend on local legal and cultural circumstances, and may differ according to the type of disease. Because most of our panel members originated from Western countries (predominantly North America, Europe, and Australia), we felt that additional work was needed to make the ACP framework feasible in non-western regions, such as Asia. We were delighted that colleagues from Japan, Korea, Taiwan, Singapore and Hong Kong, with help from an Indonesian colleague, took an interest in replication of the full Delphi procedure in Eastern Asia. This process will result in an adapted definition of ACP and recommendations for its use in these regions, including translated versions into Japanese, Korean, and Taiwanese.

Finally, at the 7th international Advance Care Planning conference (ACP-I 2019) in Rotterdam, the Netherlands, in March 2019, further intercultural perspectives on ACP will be shared as well as lessons about how to translate ACP science into practice. As scientific coordinators, we warmly invite you to attend and present at this conference. Abstracts can be submitted until the 18th of November 2018, so grab this opportunity to learn and share knowledge about ACP. More information can be found at www.acpi2019.com.


Links and resources

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Because I matter: It is just as important to know how to care as it is to cure


HAGA CLIC AQUÍ PARA OBTENER LA VERSIÓN EN ESPAÑOL

It’s been a triple celebration in Pamplona in northern Spain where the team have celebrated the 75thanniversary of Hospital San Juan de Dios, the 27th anniversary of their palliative care unit – and World Hospice and Palliative Care Day.

Dr Gabriela Picco and Silvia Echavarren Zozaya, Hospital San Juan de Dios, Pamplona, reflect on the theme of this year’s World Day chosen in honour of Dame Cicely Saunders’ centenary year.

The team at Hospital San Juan de Dios, Pamplona, celebrated the 75th anniversary of the hospital on 26 October 2018.

Until the 1950s, professional interest in cancer focused mainly on curative treatment displacing the importance of care for those patients at the end of their lives. Cicely Saunders, social worker, nurse and doctor, revolutionised the medical profession in the 1960s with her introduction of palliative care. The medical profession considered death a failure and her compassionate vision of illness and care provided a new way of thinking and acting. She did not accept the stereotypical attitude “there’s nothing more we can do” and suggested instead that “there’s a great deal more we can do”.

Saunders is a central figure in palliative care philosophy. One of her fundamental contributions was the concept of ‘total pain’, which recognises pain as being physical, psychological, social and spiritual and is condensed in a phrase taken from one of her patients: “All of me is wrong.

Even today,  patients suffer unnecessarily and it is regrettable that this philosophy has not permeated government action, as it would save a great deal of pain for many people. According to a report from the Sociedad Española de Cuidados Paliativos – SECPAL, more than 75,000 patients in Spain do not receive palliative care, this is more than 50 per cent of those who should be receiving this care and thus violates a fundamental right. Contrast the pattern of slow, lineal growth in palliative care and the exponential development in oncological treatments at the end of life, which bring limited gain in terms of survival and are frequently not cost effective.

‘Curative’ medicine as a discipline dedicated to ‘survival’ has created an almost theocratic health science, which leads doctors and the majority of the population to consider palliative medicine as the failure of medicine that does not cure.

Dame Cicely Saunders 1918 – 2005:
“You matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”

Those of us who work in palliative care are sustained by a philosophy which has three pillars: ‘holistic care’, which means not only treating the physical aspects of the terminal illness, but also treating the emotional, social and spiritual needs; the formation of multidisciplinary, non-hierarchical teams based on specific areas of knowledge, and care that includes the patient and his or her family as a unit of care.

Care is what makes us human. It presupposes the compassionate relationship of an outstretched hand: a relationship in which empathetic perception  are provided by the healthcare team with the capacity to use their personal qualities, along with their scientific knowledge, to provide individualised relief according to the patient’s needs. This ‘care ethic’ takes into account the particularities of each person, making them the centre of procedures.

Life is a journey and no two journeys are identical. This is the key to approach a patient at the end of life: empathising with their expectations and listening in order to adapt to them.

Dr Gawande relates with dismay the healthcare situation in the USA: “our medical system is excellent in trying to avoid death with $8m a month in chemotherapy and  $3m a day in Intensive Care ”. The problem is when death arrives, nobody is good enough to put a stop to all this and introduce care that provides relief and dignity. One wonders how much sense it makes to spend millions on treatment at the end of life, which increases the productivity of biomedical companies, while the inequality in access to palliative medicine continues to be the greatest challenge.

We all die and tragically many of us die badly. But, nobody should die in pain: the basic right of a citizen is access to adequate resources. Legislation guaranteeing the provision of dignity to those at the end of their life is a priority. We would welcome a political-healthcare aim that aspires to a society where people and their needs are central throughout their lives.

This year is the centenary of the birth of Cicely Saunders, her teachings continue to guide palliative care teams and for this reason the slogan for World Hospice and Palliative Care Day is one of her inspiring quotes:

“You matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”

More about the authors

Dr Gabriela Picco is an internal medicine and palliative care physician, Palliative Care Unit, Hospital San Juan de Dios, Pamplona, Spain.
Silvia Echavarren Zozaya is Communications Officer, Hospital San Juan de Dios, Pamplona, Spain.
Follow us on Twitter: @HSJD_Pamplona  @lamamarcos @ErquiagaIsabel @gabpicco picco

Links

You can read an earlier post from Gabriela and Silvia on the EAPC blog

 

Porque tú importas!  Tan importante es saber cuidar como saber curar

Se ha celebrado en Pamplona, ciudad situada en el norte de España,  un triple acontecimiento de interés;  el 75º aniversario del Hospital San Juan de Dios,  el 27º aniversario de la Unidad de Cuidados Paliativos y el Día Mundial de los Cuidados Paliativos.

Dr Gabriela Picco y Silvia Echavarren Zozaya (responsable de comunicación) hacen una reflexión para el Día Mundial, conmemorando la figura de Dame Cicely Saunders en el año de su centenario. 

26 Octubre 2018:  el 75º aniversario del Hospital San Juan de Dios.

Hasta la década de 1950, el interés profesional  por el cáncer estaba  focalizado en  potenciales tratamientos curativos lo que desplazaba  la importancia de la atención a los pacientes en el final de la vida. Dame Cicely Saunders (trabajadora social, enfermera y médica) revolucionó  a la profesión médica en los años 60, que veía a la muerte como un fracaso, aportando  una  visión integral y compasiva de la enfermedad, devolviendo otro modo de pensar y actuar. No quiso aceptar el tópico de “no hay nada ya  que se pueda hacer” y propuso: “hay mucho más por hacer”.

Saunders es una figura central en la filosofía de los Cuidados Paliativos. Uno de sus aportes esenciales fue el concepto de “dolor total“, que incluye síntomas físicos, el malestar psicológico y  las dificultades sociales, emocionales y espirituales, condensado en la frase que rescata de uno de sus pacientes: “todo de mí está mal”.

Aún hoy, los pacientes sufren innecesariamente  y es  una pena que ésta filosofía del cuidado no haya calado en la acción de los gobiernos  ya que ahorra mucho dolor  a las personas. Según un informe de la Sociedad Española de Cuidados Paliativos (SECPAL) en España no  reciben cuidados paliativos más de 75000 pacientes , lo que supone más de la  mitad de la población susceptible de recibir estos cuidados, vulnerándose así un derecho fundamental. Contrasta con el patrón de lenta y lineal expansión de los paliativos, un desarrollo exponencial de tratamientos oncológicos al final de la vida, que aportan limitadas  ganancias en supervivencia y con frecuencia no son costo-efectivos.

La  medicina “curativa “ como disciplina dedicada a la “ supervivencia“ ha creado una ciencia de la salud casi teocrática , que lleva a los  médicos y a gran parte de la sociedad a considerar a la medicina paliativa como  el  fracaso de la medicina que no cura.

Dame Cicely Saunders 1918 – 2005:
“Usted importa hasta el último momento de su vida y haremos todo lo que esté a nuestro alcance, no sólo para que muera de manera pacífica, sino también para que, mientras viva, lo haga con dignidad.”

A los que nos dedicamos a  cuidados paliativos, nos sostiene una filosofía  que tiene tres  pilares: el “cuidado holístico” que supone atender no sólo a los aspectos físicos de la enfermedad terminal sino a las necesidades emocionales, sociales y espirituales; la conformación de equipos multidisciplinarios y no jerárquicos basados en conocimientos específicos  y una atención que incluye al paciente y a la familia como unidad de cuidado

El cuidado pertenece a la esencia de lo humano, presupone una relación  compasiva de mano extendida. Una relación en la que la percepción empática  otorga al equipo sanitario, la capacidad de usar sus cualidades personales, junto al conocimiento científico, para proveer ayuda individualizada de acuerdo a las necesidades  del paciente. Esta “ética de los cuidados” tiene en cuenta las particularidades de cada persona,   convirtiéndolas en el  centro de  las actuaciones.

La vida es un viaje y no  hay dos viajes iguales. Este es el secreto para acercarnos  a un enfermo al final de la vida: empatizar con sus expectativas  y  escucharlo para adaptarnos.

Dr Gawande, narra con desaliento lo que ocurre en la sanidad en   USA    “nuestro sistema médico es excelente tratando de evitar la muerte con 8 millones de dólares al mes de quimioterapia y 3 millones de dólares al día de Cuidados Intensivos ” el problema es que cuando la muerte llega, nadie es lo suficientemente bueno para  parar con todo esto e iniciar  unos cuidados que provean alivio y dignidad. Habría que preguntarse cuanto sentido tiene  gastar millones  en tratamientos  al final de la vida  con lo que  se consigue aumentar la productividad de las compañías biomédicas  mientras la  inequidad en el acceso a la medicina paliativa  sigue siendo el desafío más  grande.

Todos nos morimos y muchos, por desgracia,  francamente mal.  A día de hoy  nadie debería morir con dolor, ya que el   primer derecho del ciudadano es  disponer de  los recursos  adecuados. Sería de preferencia legislar sobre  la garantía de proveer dignidad a las personas en el proceso de final de vida,  ya  que es un clamor social. No estaría mal que el objetivo político-sanitario  fuera  una sociedad en la que el centro, fueran  las personas y sus necesidades a lo largo de la vida.

Se cumple el centenario del nacimiento de  Cicely Saunders y sus enseñanzas  siguen guiando a los equipos de Cuidados Paliativos,  por lo que  se eligió como lema del Día Mundial una de sus inspiradoras frases:

“Usted importa hasta el último momento de su vida y haremos todo lo que esté a nuestro alcance, no sólo para que muera de manera pacífica, sino también para que, mientras viva, lo haga con dignidad.”

Autores
Dr Gabriela Picco: médico internista y paliativista de la Unidad de Cuidados Paliativos del Hospital San Juan de Dios, Pamplona, Navarra, España.
Silvia Echavarren Zozaya: Responsable de Comunicación en Hospital San Juan de Dios. Pamplona. Navarra.
Síguenos en Twitter: @HSJD_Pamplona  @lamamarcos @ErquiagaIsabel @gabpiccoPicco

Links

Puedes leer un artículo anterior de Gabriela y Silvia en el blog de la EAPC.

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