Making connections – EAPC President visits the European Parliament

Professor Philip Larkin, President of the European Association for Palliative Care (EAPC), highlights some European Parliament initiatives that may offer opportunities for the EAPC to be seen as an authority on the delivery and practice of palliative care.

Prof Philip Larkin

Once in a while, it serves to answer the phone.

I received an invitation to attend a meeting of the EPP Working Group on Bioethics and Human Dignity to present on ‘Principles of Palliative Care’. “And you would be?” I asked.

I was invited as the President of EAPC because the committee wanted to know more about palliative care in Europe. How could I refuse? Given the EAPC’s impending development in Brussels, I thought it would not hurt to have a look around. After all, you would not buy a house that you had not viewed.

Viewing the house was a problem. I had to wait outside for the person who had made the initial contact (a very nice woman called Jana Zuscinova) to meet me, get me past security, be stamped, searched, verified and labelled as worthy to enter.

The EPP working group on bioethics and human dignity has existed for several years and is chaired by MEP (Member of the European Parliament) from Slovakia, Dr Miroslav Mikolášik. Over lunch, he explained about the European Parliament and the role of the MEP.

And so to business . . .

EAPC has been affiliated to the Council of Europe for many years but has been less visible within the European Parliament. We, therefore, hoped that this meeting would give us the opportunity to be seen as an authority on the delivery and practice of palliative care, and the ‘go-to’ people for future information and guidance.

At the EPP meeting, with me on the platform was Prof Dr Benoît Beuselink, an oncologist from Leuven, who discussed issues from a Belgian perspective, particularly the challenges for some physicians in Belgium following legislative changes regarding the practice of Euthanasia in clinical practice.

The well-publicised meeting was open to anyone with an interest in palliative care and we had a good audience – interested parties, MEPs, strategists representing various individuals and political parties.

EPP group meeting. Left to right: Prof Philip Larkin, Dr Miroslav Mikolášik and Prof Dr Benoît Beuselink

What did I learn?

And so to Euthanasia and the many challenges that this poses for the palliative care community. It’s clearly the ‘hot topic’ in the EU Parliament. Generally, my opinion was that this EPP group was not in favour of the practice or legislation, and on this visit, I met no one with a pro-stance on the topic. We, as EAPC, have responded to this important debate and I refer to our EAPC White Paper on Euthanasia and physician-assisted suicide published in Palliative Medicine in 2015. However, I remain concerned that palliative care, euthanasia, and integrated care are used synonymously in descriptions of palliative care. Both Dr Beuselink and I were clear about differences and the inappropriateness of confusion on this topic.

One particularly challenging issue was a perception that the World Medical Association was being heavily influenced by the euthanasia debate and the impact this could have. I would say very clearly that EAPC needs to keep a close watching brief on this. If we wish to be seen as serious players at the EU Parliamentary table, we will not be able to avoid a deeper engagement with this topic.

Not (quite) everything was about this. I was also asked questions about my views on women as unpaid carers, amongst other things. The fact that the EAPC will, eventually, have a physical presence in Brussels will be beneficial. The work of EAPC is noted by these groups across a range of fields by these committees: education and training, research, clinical practice and, of course, ethics. We have positions on many things, which is good in terms of being able to represent who we are clearly and concisely.

The invitation was pure serendipity. I picked up the phone when I could so easily have missed the call. We need to build on that and make sure that we are able to advise well those in positions of decision-making. Clearly, the people I met genuinely want to help but are sometimes confused and unclear about palliative care language and description.

We have a responsibility to make sure that our messages are clear – ‘One Voice-One Vision’. That message has never changed and nor should it in these complex and turbulent political times. 

Links

Keep in touch with the EAPC

 

Posted in EAPC ACTIVITIES, EAPC Board Members, EAPC White Papers, Guidelines & Recommendations, Euthanasia and physician-assisted suicide | Tagged , , | Leave a comment

The process of developing an operational definition of the Wish to Hasten Death

We continue our series on the posters that caught our attention at the 9th World Congress of the EAPC Research Network in Dublin last year. Conference posters are an important feature of every European Association for Palliative Care Congress – presenting the key messages of a project in a creative, informative and eye-catching way. This series also offers an opportunity for discussion of these interesting and challenging posters, and makes them visible beyond the (sometimes rather small) range of readers in front of the poster billboards. Maybe this is an interesting new approach to scientific presentations using social media. 

Mariona Guerrero, Josep Porta-Sales and Rebecca Latter from the WeCare Chair: End of Life Care research group, Barcelona, Spain, explain the background to the group’s poster.

Members of the WeCare Chair team

Members of the WeCare team

The WeCare Chair: End of Life Care was founded in 2013 as a way of consolidating the research of experts from the Universitat Internacional de Catalunya. Its aim is to examine and address the needs of palliative care patients and their families. Later that same year, the 1st International WeCare Workshop entitled “The wish to hasten death: a clinical vision of a new-old syndrome?” was held to celebrate the formation of the WeCare Chair: End of Life Care at Universitat Internacional de Catalunya. In the context of this workshop, a research meeting was organised, with researchers from the field of palliative care from four countries: Belgium, Germany, Norway and Spain.

Despite the workshop itself being a success, the meeting was at times controversial as researchers from across Europe clashed when discussing certain aspects of the subject at hand: the wish to hasten death (WTHD).

However, it soon became clear that this inability to agree with one another was down to a fundamental communicative issue: a lack of clear-cut definitions in the field. After discussions in the meeting, an agreement was made to carry out a Delphi consensus process in order to reach a consensus on the definition of the construct of the WTHD. It was agreed to invite renowned researchers and clinicians from the field of palliative care who were experts in the wish to hasten death.

After one year working on the Delphi consensus, in November 2014, the 2nd International WeCare workshop took place under the title “What do we say when a patient says: I don’t want to live like this anymore?” The research meeting, which involved 20 experts from Belgium, Germany, Norway, Spain and United States, aimed to present the results of the first rounds of the Delphi process while exploring research related to the WTHD in patients with advanced disease. View a video clip of the meeting here (with English sub-titles).

At the end of the process, a final definition was agreed upon: 

“The Wish to Hasten Death (WTHD) is a reaction to suffering, in the context of a life-threatening condition, from which the patient can see no way out other than to accelerate his or her death. This wish may be expressed spontaneously or after being asked about it, but it must be distinguished from the acceptance of impending death or from a wish to die naturally, although preferably soon. 

The WTHD may arise in response to one or more factors, including physical symptoms (either present or foreseen), psychological distress (e.g. depression, hopelessness, fears, etc.), existential suffering (e.g. loss of meaning in life), or social aspects (e.g. feeling that one is a burden).”

As published in the subsequent article in Plos One (click here to see the full article).

The WTHD is a phenomenon that both results from and causes suffering in patients with advanced illness. What’s more, it often entails suffering in the patients’ loved ones. The WTHD is a complex phenomenon, the study of which is hampered by a lack of appropriate vocabulary. In this sense, having a clear definition of WTHD facilitates communication between medical professionals and facilitates advances in research about this phenomenon.

To see other publications and research by the WeCare Chair, please visit this link.  If you are interested in other activities including courses and training days led by WeCare, please visit our website.

Presentaci—n de PowerPointTo find out more

The process of developing an operational definition of the wish to hasten death’ by Cristina Monforte-Royo, Josep Porta-Sales and Albert Balaguer on behalf of WTHD ad Hoc Research Group. (Abstract number: P20). View the abstract for this poster in ‘Abstracts of the 9th World Research Congress of the European Association for Palliative Care (EAPC), Dublin, Ireland, 9-11 June 2016’ published online on the Palliative Medicine website.

 

 

View other posts in this series on the EAPC Blog

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What does psychology have to offer at end of life?

Dr Jenny Strachan, Clinical Psychologist, Marie Curie Hospice, Edinburgh, United Kingdom, explains the background to her longer article published in the January/February issue of the European Journal of Palliative Care.

jenny-strachan

Dr Jenny Strachan

I came from a background in Adult Mental Health to work in Oncology and Palliative Care with perhaps the same prejudices and misconceptions as many new to the area. I expected there would be tragedy, overwhelming distress, dramatic dysfunction. And so there is, sometimes. Research suggests that up to 20 per cent of patients in a palliative care setting may meet criteria for a psychological disorder, and making specialist care available to such people is – and should be – a priority at local and national levels.

But viewed from another angle, something more than 80 per cent of patients don’t meet criteria for a mental disorder. Does psychology have nothing to offer them? Call me biased, but I can’t believe that.

The ‘science of mind and behaviour’ has many branches. Developmental psychology explores how our minds and behaviours are shaped by our early years’ experiences. Cognitive neuropsychology investigates how they are determined by the structure and functions of the brain. Social psychology considers the influence of the groups, large and small, in which we belong. I could go on.

The findings of this phenomenal body of research don’t stop applying to people simply because they approach the end of their lives. We can use what we know about psychology to understand individual patients and their families better, to guide service design, to promote a healthy workplace culture. If psychologists in palliative care stick to a narrow, ‘clinical’ interpretation of the role, that is, direct treatment of disorder, we miss an opportunity to promote and preserve the wellbeing of all our patients. Not to mention the wellbeing of fellow staff.

I believe that one of the key roles of an applied psychologist in any multidisciplinary setting is to translate that body of psychological knowledge into something relevant and useful to colleagues in their roles. The short series of articles that I am writing for the European Journal of Palliative Care (EJPC) has arisen from my ongoing mission to do just that. When the teams in my hospice meet to discuss a challenging patient or situation we often move to discussing general or abstract ideas from psychology. But we always then come back to the concrete: ‘what does this tell us about what we should do here?’ My attempts to summarise these meetings became – with a great deal of editorial support – the articles that will be published in future issues of the EJPC.

In sharing some of the ideas and strategies of a psychologist with colleagues, my intention is not to have them do my job for me, but to support them to do theirs more confidently and effectively. It’s a two-way street: having been taught by my nursing colleagues how to pick up on opioid toxicity has made me a better psychologist (this is the tip of a massive iceberg of things I have learned from nurses!).

Psychology is not a complementary therapy. It should not be thought of as an ‘extra’ that we add in for the patients who are struggling. It is the theory-driven, evidence-based study of being human, and it has something to offer us all.

4_cover_2-jpgRead the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘Psychological ideas in palliative care: attachment theory’ by Jenny Strachan, published in the January/February 2017 edition of the European Journal of Palliative Care (vol. 24.1). If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive.

You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

Read more posts relating to articles published in the European Journal of Palliative Care on the EAPC Blog

ejpclinkedinEJPC Palliative Care Development Award 2017 – nominations form now online.

Do you know someone who has made a major contribution to palliative care policy development? Why not nominate them for the EJPC Palliative Care Policy Development Award? Click here to nominate. Launched by the European Journal of Palliative Care in collaboration with the European Association for Palliative Care, the award is aimed at professionals working in palliative care worldwide who have made a substantial contribution to policy development through research, clinical practice or as policy activists. The 2017 Award will be presented at the 15th World Congress of the EAPC   in Madrid, Spain (18–20 May 2017). Deadline for applications: 31 March 2017.

 

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“There is no place like home.” Dying at home or in hospital dependent on wealth, location and number of diseases

Dr Matt Maddocks, Lecturer and Specialist Physiotherapist at Cicely Saunders Institute, King’s College London, and Dr Charles Reilly, Consultant Physiotherapist at King’s College Hospital NHS Trust, announce a new research study just published. 

Dr Matt Maddocks

Dr Matt Maddocks

In the words of L. Frank Baum in The Wonderful Wizard of Oz “There is no place like home”. “Home” is the place where you feel in control and properly oriented in space and time; it is a predictable and secure place, the primary connection between you and the rest of the world, and for many with advanced disease it is their preferred place to die.

In a new study, 1 published in BMC Medicine, researchers from the Cicely Saunders Institute, King’s College London, studied a large national data set of all deaths from two groups of people with common respiratory diseases – Chronic Obstructive Pulmonary Disease (COPD) and Interstitial Pulmonary Diseases (IPD) – over 14 years.

Dr Charles Reilly

Dr Charles Reilly

In particular, the team looked at the impact of a national End of Life Care Strategy, one aim of which was to reduce deaths in hospital. Overall hospital deaths among those with COPD and IPD fell by 3-6% in the eight years following the introduction of the strategy. This reversed previous trends of increasing hospital deaths.

Unfortunately, people living with more than one disease or disorder, termed “multimorbidity”, continued to die in hospital. The strategy did not appear to reach this important and growing group. People with three or more different diseases as well as their COPD or IPD, were over one-third more likely to die in hospital than those who did not. Those living with deprivation also had higher chances of dying in hospital across the period studied.

Lead author, Professor Irene Higginson, said:

“Understanding which factors affect place of death is vital for planning service and improving care, especially given our ageing population, rising chronic diseases worldwide and the high costs of hospital admissions. Our results show that while the End of Life Care Strategy may have helped to move some deaths out of hospital for people with respiratory disease, it still misses important groups.” 

“It was particularly concerning that there was no fall in hospital deaths for people living with multimorbidity and that the disparity widened over time. In the UK, the number of people with three or more long-term conditions is predicted to rise from 1.9 million in 2008 to 2.9 million in 2018, requiring a major increase in healthcare expenditure.”

Geographical differences were also observed. London had the highest proportion of hospital deaths, and the South-West and South East Coast regions had lower proportions of hospital deaths than most other regions. Living in urban rather than rural areas increased the chances of hospital death. Surprisingly, among people with COPD, being single, widowed or divorced was associated with reduced chances of dying in hospital. Researchers suggest that this may show that when family members are present, they do not know what to do when breathlessness escalates which increases the chance of patients being admitted to hospital.

Insights from interview studies informed the team that families and carers want more information about how to support their loved ones at home, in particular when they have symptoms like shortness of breath that can escalate unexpectedly. If they do not feel able to help out at times of crisis, many call for an ambulance or travel to the emergency department.

Ensuring that both patients and carers get early access to specialist palliative care services and therapies (physiotherapy and occupational therapy) is paramount, especially for patients with multimorbidities. This research suggests that home-based therapeutic interventions need to be focused on equipment provision, symptom management and carer support, to enable people to die at home if they wish.

Download a copy of the study here.

Reference

  1. Which patients with advanced respiratory disease die in hospital? A 14-year population-based study of trends and associated factors, Irene J. Higginson, Charles C. Reilly, Sabrina Bajwah, Matthew Maddocks, Massimo Costantini, Wei Gao and on behalf of the GUIDE Care project, BMC Medicine 2017 15:19, DOI: 10.1186/s12916-016-0776-2.

Links

 

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Rethinking care toward the end of life: Outcomes from a Salzburg Global Seminar

Julie Ling, Chief Executive Officer of the European Association for Palliative Care, and Sheila Payne, Emeritus Professor, International Observatory on End of Life Care, Lancaster University, UK, were in Salzburg, Austria, to attend this global gathering. Here, they set the scene for a new series of posts that we shall be publishing throughout 2017 to encourage a global dialogue and shine a spotlight on the key topics affecting palliative care.

 Prof Sheila Payne

Prof Sheila Payne

Dr Julie Ling

Sixty invited international delegates met in December 2016 to consider global opportunities and challenges in palliative care. They gathered at the Schloss Leopoldskron (some scenes from ‘The Sound of Music’ were filmed here) to discuss and debate seven key questions:

  1. How do we engage patients and families to ensure that end of life care honours what matters most to them, with respect for culture and for context at the level of the individual and the population?
  1. What are the relative contributions of health care and community-based social care in different contexts? How can they best be joined up to maintain function, independence, and agency for people for whom death is near?
  1. How can healthcare systems better support families,  caregivers and community members in caring for people of all ages for whom death is near?
  1. How are robust processes established and implemented for arriving at decisions when patients can no longer express their own preferences? What role does public engagement and government have in this?
  1. Which are the most promising evidence-based and cost-effective innovations in care towards the end of life? What yields the greatest value to patients, especially in low- resource settings?
  1. What can we learn from the systems failures in high-income countries with regard to supporting patients, families and caregivers with palliative care?
  1. How can palliative care best be undertaken in the context of societal deprivation or conflict?
salzburg-562

Sixty invited international delegates met in in Salzburg in December 2016 to consider global opportunities and challenges in palliative care

Salzburg Global (SG) was founded in 1947 with the aim of encouraging intellectual dialogue in post-war Europe. SG aims to challenge leaders to help solve important global issues and since its establishment, SG has been a catalyst for global engagement on critical issues in education, health, environment, economics, governance, peace-building and more. SG achieves this by designing, facilitating and hosting international strategic programmes (seminars). Uniquely, Salzburg Global builds connections with and between people from a broad range of expertise, cultures and professional backgrounds. Over the duration of the seminars, government officials, institutions and individuals at all stages of their professional development and from all sectors are asked to rethink their relationships and identify shared interests, goals and outcomes.

A key outcome of the session was aimed to be the development of ‘A Salzburg Statement of key principles guiding care towards the end of life’. It was a testament to the freethinking and originality of the participants that for the first time in the history of SG, the outcome was not a statement, but instead, a set of nine questions. The questions are designed to highlight challenges facing the global community and will be linked to international ‘days’. Each of the nine questions will be explained more fully in EAPC blogs over the coming year.

There was snow and plenty of hard work, interspersed with some time to socialise and make the most of the beautiful location and, of course, there was schnitzel, Glühwein and a Christmas market.

Find out more . . .

  • Follow the global dialogue on Twitter. Using the hashtag #allmylifeQs the nine Salzburg Questions will be debated throughout 2017.
  • Follow the EAPC Blog for more posts in the Salzburg series.
Posted in ADVOCACY & POLICY, Salzburg Global Seminar Series | Tagged , , | Leave a comment

After more than 20 years, the McGill Quality of Life Questionnaire is revised

This month’s Editor’s Choice from Palliative Medicine . . .

Robin Cohen, Professor, McGill Departments of Oncology and Medicine and Staff Investigator, Lady Davis Research Institute, Montreal, and Richard Sawatzky, Canada Research Chair in Patient-Reported Outcomes and Associate Professor, School of Nursing, Trinity Western University, Canada, explain the background to their longer article selected as ‘Editor’s choice’ in the February issue 2017 of Palliative Medicine.

Dr Robin Cohen

Prof S Robin Cohen

Prof Richard Sawatzky

Dr Richard Sawatzky

The McGill Quality of Life Questionnaire (MQOL) has been widely used in palliative care research since it was first developed more than 20 years ago.1, 2 People often choose to use MQOL rather than other quality of life assessment tools developed for people at the end of life because it has subscales measuring the four main relevant domains: physical, psychological, existential/spiritual, and social. MQOL also has a summary score that weights these domains equally. Most other tools developed to assess the quality of life of people with life-limiting illnesses don’t have subscales, and/or don’t include the existential/spiritual domain, and/or have a primary focus on physical symptoms, or have many more items. MQOL also allows respondents to list their most problematic physical symptoms, rather than providing them with a list which may not represent their most problematic symptoms. With its use over time, we learned through informal feedback and data collected that there are some aspects that could be improved. Our article in the February 2017 issue of Palliative Medicine describes the first new version, MQOL-Revised, and how and why it was created.

Why did it take more than 20 years? Rather than making small changes in several new versions, we wanted to wait so that we could have a definitive revised version. One reason that MQOL stood the test of time is that it was created comparing results from three datasets, rather than finalizing and publishing it based on analysis of a single dataset. Similarly, MQOL-R is based on four new datasets collected in various populations over time (although mainly oncology).

What is new in MQOL-R? In developing MQOL-R, we aimed to maintain the desirable qualities of MQOL while making the following improvements. At 14 items, MQOL-R has two fewer than MQOL. The original MQOL contains two subscales measuring the physical domain (Physical Wellbeing; Physical Symptoms). MQOL-R merges these together, along with an item rating how problematic it is to be physically unable to do everything you’d like to do. Like MQOL, the focus in MQOL-R remains on the impact of your physical condition on your quality of life, rather than on the intensity of symptoms or the extent of your limitations. The MQOL-R Existential Wellbeing subscale has two fewer items compared to that in MQOL (4 vs 6). The end anchors of the item on control of your life have been changed to make no assumption about whether feeling in control is desirable. Instead of rating how much control you have, you rate the extent to which you have the control you wish to have. In MQOL-R, the subscale measuring the social domain has a greater emphasis on relationships and an item that was sometimes unclear has been eliminated. It has been renamed the Social subscale (from Support). MQOL-R was developed simultaneously in English and in French.

Validation for MQOL-R, as for any patient-reported outcome measure, is an ongoing process. Measurement validity means that 1) we are justified in using the scores to answer the question of interest and 2) the actions and decisions based on that answer are warranted. 3 At a minimum, this involves taking into account the purpose, population, and context. Future research should focus on measurement validation pertaining to the use of MQOL-R for a range of purposes and of situations. 

Links
To obtain a copy of MQOL-R (or MQOL) along with scoring instructions, email Robin Cohen. If you are not using it for profit, it is free to use.

References

  1. Cohen SR, Mount BM, Tomas JJ, Mount LF. Existential well-being is an important determinant of quality of life. Evidence from the McGill Quality of Life Questionnaire. Cancer. 1996; 77 (3): 576-86.
  2. Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K. Validity of the McGill Quality of Life Questionnaire in the palliative care setting: A multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med. 1997;11 (1):3-20.
  3. Sawatzky R, Chan EK, Zumbo BD, Ahmed S, Bartlett SJ, Bingham CO, 3rd, et al. Modern perspectives of measurement validation emphasize justification of inferences based on patient-reported outcome scores: seventh paper in a series on patient reported outcomes. J Clin Epidemiol. 2016.

 

68504_pmjRead the full article in Palliative Medicine
This blog post relates to the longer article, ‘Measuring the quality of life of people at the end of life: The McGill Quality of Life Questionnaire – Revised’ by S Robin. Cohen, Richard Sawatzky, Lara B Russell, Javad Shahidi, Daren K Heyland and Anne M Gadermann, published in Palliative Medicine 2017, Vol. 31(2) 120-129. DOI: 10.1177/0269216316659603.

Click here to download your free copy of this month’s Editor’s Choice article from the EAPC website.

How to download previously published ‘Editor’s choice’ articles
EAPC members and registered users of the EAPC website can download all ‘Editor’s choice’ papers free of charge from the EAPC website but you will need to register or login first. Please follow the instructions in the top right-hand corner of the EAPC home page and scroll down to the article. Click here to view other EAPC-originated papers.

Read earlier Editor’s Choice posts on the EAPC Blog.

Posted in EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, RESEARCH | Tagged | Leave a comment

Is palliative care possible in prison? A national PARME study about inmates with terminal illness in France

We continue our series on the posters that caught our attention at the 9th World Congress of the EAPC Research Network in Dublin last year. Conference posters are an important feature of every European Association for Palliative Care Congress – presenting the key messages of a project in a creative, informative and eye-catching way. 

This series also offers an opportunity for discussion of these interesting and challenging posters and makes them visible beyond the (sometimes rather small) range of readers in front of the poster billboards. Maybe this is an interesting new approach to scientific presentations using social media . . .

Aurélie Godard Marceau

Aurélie Godard Marceau

Aline Chassagne

Aline Chassagne

Aurélie Godard Marceau and Aline Chassagne from the Clinical Investigation Center (CIC1431-INSERM) of the University Hospital of Besançon, France, explain the background to their poster.

 

 

Since 2002, the law in France permits seriously ill or dying inmates to request compassionate release in order to receive health care outside of prison. Nevertheless, every year in France, a hundred inmates die in prison as a result of their illness.

We conducted a mixed-methods research that aimed to describe and understand the situation of inmates with a terminal illness (defined as a patient with a life expectancy of less than a year).

We conducted two studies:

  • A national epidemiology study over three months (177 healthcare units in prison (UCSA) and nine secure inpatient care units in hospitals (UHSI)).
  • A qualitative study with 62 individual semi-structured, in-depth interviews relating to the situations of 14 patients.

parme_poster_eapc_defIn 2013, the prevalence of prisoners requiring palliative care was 15.2 per 10,000 inmates (95% CI: 12.5 – 18.3). Our results highlighted that it isn’t easy to provide inmates who are ill with access to effective end-of-life care.

First, the organisation of healthcare units in prisons (UCSA) is limited to provide only primary health care. Moreover, there is no physician or nurse during the night or the weekend. Also, seriously ill inmates have special needs that are difficult to provide, such as equipment to help to reduce pain and discomfort (medical mattress, special food). This is especially prevalent in older prisons since only recently built prisons have adapted cells for people with disabilities. Lastly, relationships with family members are not easy in prison: families have very little information about their relative’s health and can visit them only once or twice a week.

Then, when the health of a seriously ill inmate deteriorates, he/she may be transferred to a secure inpatient care unit (UHSI) in a university hospital for stays lasting more than 48 hours. But while admission to hospital offers better access to painkillers and improved conditions, for some inmates it may also mean being far from their family, even though visiting conditions are easier in UHSI.

It is also important to note that providing palliative care in UHSI is difficult for health professionals: it’s not always easy to get access to the patient because of security regulations and they haven’t been trained to provide holistic end-of-life care. For health professionals, there is also the issue that dying in prison is a taboo, creating tension between what is possible and what they would like to be able to do for the patients.

For all these reasons, physicians and caregivers consider that prisoners with a terminal illness should be released on compassionate grounds and should not die in prison.

To find out more . . .

Is Palliative Care Possible in Prison? National Study about Inmates with Terminal Illness in France, PARME Study,  Godard-Marceau, Aurélie; Chassagne, Aline; Cretin, Elodie; Pazart, Lionel; Aubry, Régis. Abstract number: P329.  View the abstract for this poster in ‘Abstracts of the 9th World Research Congress of the European Association for Palliative Care (EAPC), Dublin, Ireland, 9-11 June 2016’ published online on the Palliative Medicine website.

Reference
PARME Study: PAlliative situations and compassionate Release for MEdical reasons

View more posts in this series on the EAPC Blog. Next week, Mariona Guerrero, Josep Porta-Sales and Rebecca Latter from the WeCare Chair: End of Life Care research group, Barcelona, Spain, explain the background to their group’s poster . . .

 

new-new-eapc17_header_960x21115th EAPC World Congress. Early Bird offer closes 15 February 2017 – up to 25% saving if you book by Wednesday, 15 February!

Click here to register now before the Early Bird offer closes on 15 February. Please share so that others can take advantage of the Early Bird Offer. After 15 February, registration is still possible via the congress website but at a higher fee. Book your accommodation via the congress website. The 15th EAPC World Congress – Progressing Palliative Care – takes place in Madrid 18 to 20 May 2017. To register and find out more, visit the congress website. Follow us on Twitter @EAPCOnlus – our official congress hashtag is #EAPC2017

 

 

Posted in EAPC Congresses, EAPC World Research Congresses, Minority Communities, PATIENT & FAMILY CARE | Tagged | Leave a comment