Philip Larkin is incoming President of EAPC (European Association of Palliative Care).
David Vodušek (DV): The mission statement of EAPC states: “…EAPC strives to develop and promote palliative care in Europe through information, education and research using multi-professional collaboration, while engaging with stakeholders at all levels.”
How would you translate this statement towards possible cooperation with EAN?
Philip Larkin (PL): It may be helpful to explain initially how EAPC works. EAPC is a membership organisation and currently has 55 member associations across 31 countries and people are engaged in palliative care from a range of perspectives; specialist clinical practice, education, policy and of course research. This means that we aim to speak with ‘one voice-one vision’ on matters important for the practice and development of palliative care while respectful of the cultural and political diversities of our members across the EU. Most people associate palliative care with cancer and indeed, historically and from a practice perspective, the management of symptoms in advanced cancer has been the cornerstone of our work. However, since the revision of the World Health Organisation definition of palliative care in 2002 as a model applicable across a range of chronic life-limiting disease beyond cancer and the more recent call for palliative care to be established as a public health approach (WHA 67.19), there are increased opportunities to seek collaborations with colleagues across a range of disciplines and organisations such as EAN. The EAPC wishes to foster greater collaboration so that we can identify where our respective skills and attributes can overlap and where we can learn from each other with the ultimate goal of a optimal quality of life experience for the patient and family in spite of their disease. I am sure these principles speak to both our associations. I would add that the link between neurology and palliative care is not as far apart as some may think. I have worked alongside neurology specialists for many years, particularly in managing complex pain. The care of patients with Motor Neurone Disease (ALS) has always been a constituent part of palliative care practice and we are seeing that broaden as we learn about our respective contributions to the field. I would hope that a stronger relationship between our organisations would strengthen our collaborative possibilities in the future.
DV: It seems clear that palliative care cannot be conceived without the major and continuous role the nurses have in this process. Can you explain their role and suggest how EAN can address working with them?
PL: As a nurse myself and having worked now in palliative care for nearly 28 years, I am very mindful of the nursing contribution to this discipline. In some countries, it has been nurses that have led on the delivery of palliative and end-of-life care and in my own country (Ireland) until 1987 when palliative medicine became a specialty of medical practice, palliative care could have been described as a nurse led discipline. There are some challenges to this, insofar as the preparation and training of nurses across the EU is widely variable. Some nurses can be prepared to PhD level, working in levels of advance practice including nurse-led clinical engagement and have the ability to independently prescribe medications to systems whereas for others, nursing has limited opportunity for education and training at postgraduate and higher academic level. However, things are changing for the better but we need to do more. For example, we now have a nursing taskforce looking at preparation and education of nurses in palliative care with contributions from across the European Union.
There is a strong need for leadership programmes which bring nurses together to foster collaboration and share practice experience. Nurses are often at the bedside at critical moments in patient and family lives, the person who is first to understand, report and respond when a clinical condition has changed or deteriorated and often supports the family through the process of dying and the immediate aftermath of grief and loss. Although there are specialist skills that palliative care nurses develop through practice, nursing colleagues in other disciplines such as neurology have equally defined skills which are often complementary. Understanding that complementarity would enable a better cohesion between nursing colleagues but also confirm our contribution to the wider team.
Having said this, I would make the point that palliative care is always best delivered by a team of people, each bringing their respective contribution to the table. Doctors, Nurses, Social Workers, Psychologists, Chaplains and other Allied Health Professionals all offer a unique perspective on the planning of care. The nursing contribution is essential but only as essential as that which other colleagues can bring. Identifying what that shared contribution can be enhances the delivery of best palliative care practice and the ability to learn and work in an interdisciplinary manner is something that EAPC and EAN could work together on in terms of education and modeling.
DV: According to EAPC’s White Paper “Recommendations on palliative care and treatment of older people with Alzheimer’s disease and other progressive dementias” palliative care has an important role to play in the field of neuro-degenerative disorders. Can you briefly illustrate this to the Neuropenews readers?
PL: This is an important paper given the expected rise in ageing population and concomitant Alzheimer and other dementia presentations. To some degree, palliative care has engaged more visibly with the older person/dementia agenda due to the progressive, life-shortening and eventual decline and death. This paper outlines a model of dementia palliative care underpinned by a health promoting-risk reduction approach which sees changing goals of care over time moving from the prolongation of life to the maximizing of comfort as decline and death approach. Across the 11 domains and 57 recommendations proposed, we believe that there is significant transferable learning to other progressive illness and offers best practice principles which can be applied and adapted to specific clinical contexts. For example a focus on appropriate early intervention, person centered care, shared decision making processes which engages with patients and families to manage their care successfully and the value and importance of advance care planning speaks not only to dementia care but to the wider experience of care planning in neurological disease such as Motor Neurone Disease, Parkinson’s disease, Multiple Sclerosis, Huntington’s disease etc. In this way, a sharing of this learning across palliative care and neurology can only improve service provision and user experience which after all, should be a goal for all of us.
DV: Are other white papers on palliative care for neurological patients in preparation? Would there be a place for cooperation with EAN in these activities?
PL: I think to some extent we are already there in terms of joint collaboration in respect of academic papers. The consensus review on palliative care in chronic and progressive neurological disease is now available online and will be in print in early 2016. Led by Dr. David Oliver, a UK based expert in the application of palliative care in neurological disease, supported by colleagues, many of whom come from a palliative care/neurology background and are members of EAN, the document gives important messages about the benefits of early integration of palliative care within a disease spectrum, the need for enhanced multi and interdisciplinary working and communication and most importantly, calls for the development of a core curriculum for education and training to ensure that practitioners in both palliative care and neurology are better equipped to care for our patients and families. Given the range of chronic and progressive disease and the benefits that a collaboration can offer, I would be hopeful that a deeper engagement between our two associations would establish some high quality position papers, perhaps further guidelines for best practice and the demonstration of this through joint presentation at our respective conference and congresses and ultimately, a shared vision for seeking shared research collaboration and funding opportunity.
DV: The EAPC also has a European Academy. Please explain to our members about the goals of your Academy and whether neurologists and neurological nurses could participate in its activities?
PL: The European Academy is an initiative funded by the Robert Bosch Stiftung (Foundation) in Germany and has the endorsement (which we term auspices) of the EAPC. So, although it is seen as an important European endeavor for palliative care which we support, it is run independently of EAPC (although I do sit on the Scientific Committee along with expert education colleagues from the UK and the US. It is a leadership development collaboration between four centres – The University Hospital of Cologne/ Germany, Nicolaus Copernicus University Toruń, Poland,
Hospice Casa Sperantei, Brasov/ Romania and King’s College London, Cicely Saunders Institute/ United Kingdom. I would note that Professor Raymond Voltz, co-author on the paper cited above in point 4 is co-leader on this project. The aim of the Academy is to develop the leaders of the future. Over a two year programme, a multidisciplinary group of students, who are usually working in an area allied to palliative care, undertake four, face-to-face intensive theoretical study weeks in each country, supported by site visits to local hospices, palliative care services and demonstration projects and a week supernumerary placement in a setting of their choice. In addition, each student undertakes a practice based project to enhance palliative care in their own country with a view to developing services and most important, enhancing their leadership skills. I think this is a very important point. Who will be the leaders of the future? How will they be prepared academically and professionally to respond to the current challenges facing palliative care and chronic progressive neurological disease. Given all the points I have made before about the absolute necessity of developing a collaboration for shared working in palliative care and neurological disease, it would be extremely valuable for people working in the neurology discipline but with a palliative care interest/focus to consider applying for this programme and so finding innovative ways to embed our joint messages in health care for the future.
DV: In the mind of many, ending “active” treatment (for instance in terminal patients who are critically ill), and proceeding with palliative care “only”, is something close to euthanasia. How would you clarify the distinction between these two concepts?
PL: This is an important question and one that is often misunderstood by both other clinical disciplines and the public at large. One of the challenges in this debate is that the language is confusing. Palliative care would not, for example, refer to ‘ terminal care’ as this is a phrase that is unhelpful in explaining the transitions that patients and families make across a spectrum of care where the original goal may have been curative and is now more about giving quality to life, providing measure which alleviate complex symptoms and managing changing goals of care which include managing the process of dying. I note that World Health Organisation definition of palliative care here which states that palliative care neither hastens nor postpones death but rather aims to improve quality of life. There is evidence now (albeit from an advanced cancer perspective) that early intervention enhances not only life quality by length of life (see Temel et al., 2010, www.nejm.org/doi/full/10.1056/NEJMoa1000678).
If I take the example of neurology, there may be times when a palliative care engagement for assistance and expertise may be helpful and then, they may withdraw until such time as the need arises again. As the disease progresses, the engagement may increase but always in the context of shared working. So, we try not to make categorical distinctions between active and terminal in the context of what constitutes contemporary best practice.
The EAPC have engaged with the Euthanasia and physician- assisted suicide debate in an attempt to clarify both our position and also the grey areas around this topic. A new paper by Radbruch et al., (2015) on this very topic has recently been published in Palliative Medicine and I would urge EAN members to read this as I feel it offers clarity and guidance to those of you who work in an area of clinical care where these issues need to be debated. And it probably explains the nuance of this complex issue far better than I! pmj.sagepub.com/…/2015/11/18/0269216315616524
DV: Prof. Larkin I thank you for this very informative interview and wish you and EAPC further success.
More on Prof. Philip Larkin can be found here.
The article “A consensus review on the development of palliative care for patients with chronic and progressive neurological disease” was the CME article on the EAN website. pleae log-on and go the e-Education area in order to answer the questionnaire.
David Vodušek is Chair of the EAN Liaison Committee and Professor of Neurology at the Medical Faculty, University of Ljubljana and Medical Director of the Division of Neurology, University Medical Center Ljubljana, Slovenia.