Euthanasia and Physician Assisted Suicide in Portugal: The need for further research to mediate the debate

Following last week’s post ‘Bringing the EAPC white paper to the centre of the Portuguese debate’, Sandra Martins Pereira, Pablo Hernández-Marrero and Ana Sofia Carvalho from the Instituto de Bioética, Universidade Católica Portuguesa, Porto/ UNESCO Chair in Bioethics, Porto, Portugal, continue the debate …

Sandra Martins Pereira

Pablo Hernández-Marrero

Ana Sofia Carvalho

 

 

 

 

 

 

Euthanasia and physician-assisted suicide (PAS) are nowadays hot topics in Portugal, undergoing dramatic public, societal, legal, cultural, ethical and political debates. This followed a citizens’ initiative, Dying with Dignity’ (Morrer com Dignidade), which requested the Portuguese Parliament to legalize these two practices.

What does it mean to die with dignity? Are dignity and autonomy equal in their entity and definition? Should the discussion about the legalization of euthanasia and PAS be mediated by the use of expressions such as “dying with dignity”, as if they were synonyms or as if those who die in a different way are not “dying with dignity”? Why do the advocates of this movement deliberately choose to use euphemisms to describe their cause instead of referring to it by its name? Will the legalization of euthanasia and PAS diminish therapeutic obstinacy? Is palliative sedation a form of euthanasia already implemented in clinical practice in Portugal? These are only a few of the questions currently under fire in Portugal, with citizens and healthcare professionals positioning themselves in two opposing directions: pro-legalization versus non-legalization.

In our opinion, there are two main issues in the Portuguese debate to which we would like to draw particular attention.

First, we have a major concern about the apparently increasing public support for euthanasia and PAS disseminated through diverse media channels. Biased wording is being systematically used and several concepts are not correctly defined. It is our perception that citizens, journalists, politicians and healthcare professionals are positioning themselves based on inaccurate perceptions, lack of information and lack of knowledge about palliative and end-of-life care, decisions and practices. In fact, the majority of professional, public, societal, ethical and political debates are being framed by mere opinions and by the use of euphemisms and inaccurate expressions. Crucial terms are being left undefined or, even worse, ambiguously and wrongly presented, causing confusion and misunderstanding. This, in our opinion, is determining and influencing the debate, misleading citizens and professionals alike.

The Portuguese translation of the EAPC White Paper on Euthanasia and Physician-Assisted Suicide may indeed have a positive impact and highlight the debate by providing clear definitions and consensus on several ethical issues at the end of life.

Second, very little is known about end-of-life decisions and decision-making processes in Portugal. Hence, there are unresolved issues needing additional research. We consider that there is also a further need not only to investigate the attitudes toward euthanasia and PAS, but also the willingness to perform these practices, especially among those trained and involved in palliative care. This is the main focus of our current and ongoing research project entitled EPASP: Euthanasia and Physician-Assisted Suicide in Portugal; preliminary results to be released soon.

References and links

Radbruch L, Leget C, Bahr P, Müller-Busch C, Ellershaw J, de Conno F, Vanden Berghe P; Board Members of EAPC. Euthanasia and physician-assisted suicide: A white paper from the European Association for Palliative Care. Palliat Med. 2016 Feb; 30(2): 104-16. doi: 10.1177/0269216315616524. Epub 2015 Nov 19.

 

Posted in ADVOCACY & POLICY, Euthanasia and physician-assisted suicide | Tagged | Leave a comment

Shared decision-making about palliative chemotherapy: A conversation about what matters most

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

Inge Henselmans, Department of Medical Psychology, Academic Medical Center, Amsterdam, the Netherlands, explains the background to her longer article selected as ‘Editor’s Choice’ in the July 2017 issue of Palliative Medicine.

Dr Inge Henselmans

Chemotherapy for advanced cancer offers uncertain and sometimes little benefit while the burden can be high. Hence, treatment decisions should incorporate patients’ preferences. I firmly believe none of the medical oncologists in our hospital would disagree. Putting shared decision-making into practice, however, is easier said than done.

Hence, we wanted to learn how oncologists went about it in consultations about palliative chemotherapy. Our hypothesis was that, although skilled and confident in providing information about diagnosis and treatment, they would be more hesitant when it came to talking about patients’ values and preferences. This key step of shared decision-making requires a more receptive and exploring attitude, which is likely to be demanding for medical specialists in busy outpatient clinics. Thirteen oncologists were willing to let us audio-record 60 consultations with 41 patients about the start or continuation of palliative chemotherapy.

Our hypothesis was confirmed. In many consultations, patients did make statements related to their values and preferences. Nevertheless, these mostly brief and one-time windows of opportunity were often initiated by patients and rarely led to further conversation. We noticed that both patients and oncologists tended to jump to treatment preferences, skipping the underlying values, i.e., what mattered most, and how that related to patients’ appraisal of pros and cons of treatment. To ensure that patients’ preferences are informed and well considered, and to prevent that so-called ‘naïve’ preferences 1 guide decision-making, it is essential to address values, appraisals and preferences. We were aware, however, that this conversation between oncologists and patients with incurable disease and a limited life expectancy would be far from easy.

Thus, to support shared decision-making about palliative chemotherapy, we currently evaluate the effect of skills training for oncologists and a preparatory aid for patients in a randomised design. The patient aid consists of, among others, value clarification methods to help patients reflect on what matters most prior to the consultation. The oncologist training incorporates all steps of shared decision-making,2 including the exploration of patients’ values and preferences. We focused on those communication skills that were shown to enhance further exploration in the observational study, e.g. asking open and probe questions and reflecting on the patient’s story.

We tended to adopt an apologetic tone when informing those oncologists allocated to the 10 hours of training. However, many were happy to undergo training, and some were disappointed when allocated to the control condition. Reflection and feedback on communication skills in a group of peers is rare for practising medical specialists, yet is apparently well appreciated. The findings of this trial will tell us whether skills training and patient preparation allow oncologists to really put shared decision-making into practice in consultations about palliative systemic treatment.

References

  1. Elwyn G, Frosch D, Thomson R, et al. Shared Decision Making: A Model for Clinical Practice. J Gen Intern Med. 2012; 27: 1361-7.
  2. Stiggelbout AM, Pieterse AH and De Haes JC. Shared decision making: Concepts, evidence, and practice. Patient Educ Couns. 2015; 98: 1172-9.

Read the full article in Palliative Medicine
This post relates to a longer article,Shared decision making about palliative chemotherapy: a qualitative observation of talk about patients’ preferences’ by Inge Henselmans, Hanneke WM Van Laar Hoven, Jane Van der Vloodt, Hanneke CJM De Haes and Ellen MA Smets, published in Palliative Medicine, Vol 31 (7), 625-633. First published online: 26 October 2016. DOI: 10.1177/0269216316676010.

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

EAPC Matters – a summer message from the president

Phil Larkin, President of the European Association for Palliative Care (EAPC)

I know when summer arrives in Ireland for three reasons: it rains, the American tourists arrive, and it rains again. It is not all bad – we have had some warm days – and the Americans are happy. So, as summer is now officially here and most of us now head off for a well-deserved break, I am writing this post to keep our members and other readers up to date with EAPC matters.

Left to right: Rafael Mota Vargas, President of SECPAL; Prof Dr Christoph Ostgathe, Chair of the Scientific Committee; Prof Phil Larkin, EAPC President; and Dr Alberto Alonso-Babarro, Chair of the Local Organising Committee.

I had great pleasure in meeting many of you in Madrid in May. Our 15th EAPC World Congress was a great success. Thank you for completing the evaluation forms: we have basked in the warmth of your compliments but also listened carefully to your helpful suggestions to improve future congress organisation. As we reflect on the hard work of the past two years and plan for our next World Congress in Berlin in 2019, I again offer my thanks to the Scientific Chair, Prof Dr Christoph Ostgathe, and Dr Alberto Alonso-Babarro, Local Organising Committee Chair, as well as our colleagues in SECPAL for their dedication and commitment to the Congress. And the sun shone!

EAPC Award 2017 – recognising contribution

Professor Sheila Payne

An important event is the EAPC Award, which this year went to Professor Sheila Payne. The award honours a person’s contribution to the work and development of both palliative care and the EAPC through scholarship and service. The EAPC Board decides the winner and Sheila was their unanimous choice for 2017. Sheila’s contribution to palliative care is remarkable in terms of the breadth of her engagement and the mark she has made on academic research, mentorship and leadership in the field. It is important that we recognise contribution and provide a forum where that can be acknowledged, and I was delighted to make this award in Madrid.

Listening to our members

Another key event for me was the opportunity to meet the presidents of our national member associations and to hear what is important to them. We need to embed this in our biennial congresses so that we can at least converse about crucial issues in palliative care, both nationally and internationally. I also met representatives from member nursing associations – equally important in establishing how we can support their professional development as a discipline in palliative care.

Reflecting on the significant messages from those meetings: together, we have a strong voice for the vision and future of palliative care but there are also gaps that we need to address. In particular, we need to operate an ‘open door’ policy so that members and member associations feel part of the work at a European level.

A resounding message was the need to review and upgrade the EAPC website and I will make that a focus of the next few months’ work. We will make a concerted effort to improve a system that needs a significant overhaul.

To some degree, 2017 marks the midway point of my presidency – two years done, two years ahead. It’s been a time of transition: a new CEO, Julie Ling, and a new administrator, Eleanor Blake, who took over from Amelia Giordano who retired officially at the end of June. And then there is the move from Milan to Brussels in terms of administration. We are still managing some of the final changes but from September 2017 we will be working out of EAPC vzw and managing our day-to-day business from Belgium and Ireland (where both Julie and Eleanor are based). My special thanks to Dr Paul Vanden Berghe, board member and treasurer, who has been pivotal in helping us set up the necessary structural and financial systems. In terms of service to you as members, you should (hopefully) see a seamless transition but we welcome your feedback during these changes.

So what of the next two years?

I think we need now a balance between consolidation in our new home and growth in terms of establishing some goals for the future; for example, strengthening our systems (including the website!), and making sure that our procedures and policies are transparent to all.

Building on an earlier opportunity to engage with the Council of Europe (see blog post), our board member, Professor Tiina Saarto from Finland, kindly represented us at a recent European Parliament meeting in Strasbourg. Next week, I will meet the leader of the working group on palliative care (who happens to be a Senator in the Irish parliament!) to talk about their work and report and how EAPC can help. Significantly, this group sees EAPC as the ‘go-to’ organisation for European perspectives in palliative care and I think this sets an important marker for the future.

Meanwhile, as the EAPC continues to grow, we look forward to the 10th World Research Congress hosted by the EAPC Research Network in Bern, Switzerland, (24-26 May 2018). Registration opens on 2 August! We’re confident of another excellent congress following the success of Dublin 2016.

And not forgetting the donkeys …

Hallmarks of palliative care: Hospitality and welcome – an Irish donkey offers directions to a visitor from Austria.

As some of you know, my two remaining donkeys now live with my neighbour who has more time to devote to their many (feeding and brushing!) demands. I see them when I can but they are fickle creatures and have made great friends with his children, so I am happy to see them well cared for in their declining years. Palliative care at its best!

I hope that each of you has time to recharge, take a break from the complexities of working life and enjoy something of the world around us in the coming weeks. Come back to your work refreshed and rested.

With best wishes for a happy summer from all at Head Office.

Keep in touch with the EAPC           

 

 

 

 

Posted in 15th World Congress Madrid, EAPC ACTIVITIES, EAPC Board Members | Tagged | Leave a comment

Euthanasia and physician-assisted suicide in Portugal: Bringing the EAPC white paper to the centre of the Portuguese debate

Introducing a new, two-part series from Sandra Martins Pereira, Mara Freitas, Cátia Ferreira, Pablo Hernández-Marrero and Manuel Luís Capelas, on behalf of the Portuguese Association for Palliative Care. Here, they introduce the Portuguese translation of the European Association for Palliative Care’s White Paper on Euthanasia and Physician-Assisted Suicide.

Members of the team –  left to right: Manuel Luís Capelas, Mara Freitas, Sandra Martins Pereira, Cátia Ferreira and Pablo Hernández-Marrero.

In Portugal, as in most countries worldwide, euthanasia and physician-assisted suicide are legally banned. However, recent initiatives and a citizens’ movement requesting the legalisation of these practices brought this issue into hot political, societal, legal, cultural and ethical debates. Should these practices continue to be banned? Should they be allowed? Should they be allowed with strict restrictions? How do they relate to palliative care? These are only a few of the questions currently ‘under fire’ in Portugal.

As part of our mission to contribute to the discussion of ethical issues in palliative care, particularly at the end of life, the Portuguese Association for Palliative Care (Associação Portuguesa de Cuidados Paliativos – APCP) felt the need and responsibility to actively participate in this debate. Together with a set of information documents, essays, and position papers published over the last year, the Board of Directors and the Ethics Group of the APCP decided that it was time to translate and introduce the EAPC White Paper on Euthanasia and Physician-Assisted Suicide into the Portuguese national debate. After several months of work to obtain all the required permissions and decide the best timing to release the Portuguese translation, we finally made it!

At the beginning, one colleague once told us that it would be a TTT (‘Things Take Time’) process. He was right. From the moment we decided to do the translation until now, almost one year has passed. During this period, we obtained all the required permissions, performed the translation, made the required adjustments into Portuguese, and validated its content. As part of this process, we held a vivid and constructive debate to find the best wording for each definition presented in the EAPC white paper.

The day after the political debate at the Portuguese Parliament, February 1st 2017, the Portuguese translation was made available on the webpage of our Association and is now being disseminated through a wide range of media channels. As a main goal and cornerstone, we hope and trust that this translation will clarify such concepts as palliative sedation, forgoing treatment, euthanasia, assisted suicide that are often presented in an inaccurate, misleading way. Hence, it is our conviction that the Portuguese translation of the EAPC white paper on euthanasia and physician-assisted suicide will help citizens, healthcare professionals and policy-makers when watching, listening and/or participating in public debates. Paraphrasing the authors of the original white paper, all this discussion is having a “sort of positive collateral damage” that we are keen on optimizing: as never before, this political and societal debate is renewing public interest in palliative care.

Links and references

  • Radbruch L, Leget C, Bahr P, Müller-Busch C, Ellershaw J, de Conno F, Vanden Berghe P; Board Members of EAPC. Euthanasia and physician-assisted suicide: A white paper from the European Association for Palliative Care. Palliat Med. 2016 Feb; 30(2) :104-16. doi: 10.1177/0269216315616524. Epub 2015 Nov 19. Download a copy from the EAPC website.

Look out for the group’s follow-up post next week when they will be focusing on current ethical and legal debates about euthanasia and physician-assisted suicide.

Read more posts on the subject of euthanasia and physician-assisted suicide on the EAPC Blog.

More about the authors . . .

Dr Sandra Martins Pereira (PhD), Instituto de Bioética, Universidade Católica Portuguesa, Porto, Portugal. Member of the Ethics Group of the Associação Portuguesa de Cuidados Paliativos (APCP). Contact Dr Sandra Martins Pereira by email.

Mara Freitas (MSc), Doctoral Candidate at the Instituto de Bioética, Universidade Católica Portuguesa, Portugal. Coordinator of the Ethics Group of the APCP.

Cátia Ferreira (MSc), Centro Hospitalar de S. João, Porto, Portugal. Member of the Board of Directors and of the Ethics Group of the APCP.

Professor Pablo Hernández-Marrero (PhD), Instituto de Bioética, Universidade Católica Portuguesa, Porto, Portugal. UNESCO Chair in Bioethics, Institute of Bioethics, Universidade Católica Portuguesa, Porto, Portugal.

Professor Manuel Luís Capelas (PhD), Instituto de Ciências da Saúde, Universidade Católica Portuguesa, Lisboa, Portugal. President of the APCP.

 

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

UN Working Group on Ageing to Consider Long Term and Palliative Care

Katherine Pettus, Advocacy Officer, International Association for Hospice and Palliative Care

Dr Katherine Pettus

On July 7, the Eighth United Nations Open-ended Working Group on Ageing (OEWGA), for the purpose of strengthening the protection of the human rights of older persons, selected ‘long term and palliative care’ as one of two focus questions for its 2018 session (OEWG9), the exact date of which is yet to be determined. The other question OEWG9 will consider is ‘autonomy and independence’. The fact that member states will discuss older persons’ rights to long term and palliative care for several days is unprecedented in the history of the United Nations (UN).

The UN General Assembly created OEWGA on Ageing in December 2010 to consider the existing international framework on human rights of older persons, violations and gaps in the enjoyment of those rights, and whether to address them through a binding instrument such as a new convention.

The Organization of American States set a great example to the other regions of the world by adopting the Inter American Convention on the Protecting the Human Rights of Older Persons, which includes robust language on palliative care.

Palliative care advocates have been attending and participating in regular sessions of the OEWGA since it began, to ensure that the topic is included in the deliberations about a possible binding convention on the rights of older persons. Palliative care advocates have pointed out that problem of lack of access to palliative care is acute throughout the world and, as the population ages, it will be essential to develop services in the community that are accessible to older persons and their families. This requires political will, funding and, most of all, the advocacy to support making palliative care a policy priority. In July last year, the International Association for Hospice and Palliative Care (IAHPC) and the Worldwide Hospice Palliative Care Alliance (WHPCA) co-sponsored a side event that highlighted the topic as part of an awareness building process.

National palliative care organisations will be the key actors in preparations for 2018, as they are well positioned to collaborate with their governments to identify gaps and to suggest policy guidelines for their own countries. They will be able to point to best practices and challenges that can be overcome through effective partnerships. Colleagues in national associations can also request to be included on national delegations to OEWG9. This will gives their UN mission an edge, with expert inside advice. Global and regional organisations can provide technical support and guidance to their national counterparts.

It will also be important to have strong, accredited civil society representation from non-palliative care organisations (representing other medical specialties for instance), as well as older persons and/or family members who have benefited from palliative care. The more informed a ministry and mission is, the more likely they are to participate in next year’s discussions.

The anticipated outcome of this yearlong preparatory process is informed policymakers! If we do our job well, political leaders and citizens in all UN member states will learn about the need to develop human rights-based policies to ensure the provision of long term and palliative care services for their ageing populations. They will be able to report on their plans and progress to other UN member states, and to civil society organisations, at OEWG9.

At this point, UN member states are nowhere near agreement on the need for a binding international convention on the rights of older persons, similar to that protecting the rights of women, children, indigenous people, and people with disabilities. Such a binding convention should, like the Inter-American Convention, include a right to palliative care. The global, regional, and national palliative care community now has the opportunity to make our case that UN member states need to protect older persons’ rights to palliative care by developing the appropriate universal standards to be included in a convention.

A full list of Resources and Articles: Books, Articles, Statements, and Reports on Rights of Older Persons and Palliative Care is available in the Resources section of the IAHPC website.

To find out more . . .

If your organisation or association is interested in learning about IAHPC advocacy, please email Katherine Pettus, IAHPC Advocacy Officer.

Dr Katherine Pettus writes regularly for the Advocacy and Policy page published each month in the IAHPC online newsletter. She has also contributed several posts to the EAPC Blog, which you can find in the Advocacy and Policy category.

Posted in ADVOCACY & POLICY | Tagged | 4 Comments

How and what do you measure to ensure quality palliative and end-of-life care?

Continuing the Salzburg Questions series that encourages a global discussion about the key issues affecting palliative care.  

Professor Richard Harding

Today, 11 July, is World Population Day. Professor Richard Harding, Herbert Dunhill Chair and Director of the Centre for Global Health Palliative Care, Cicely Saunders Institute, King’s College London, UK, explores the fifth question in the Salzburg Questions that asks how and what you measure to ensure quality palliative and end-of-life care.

Quality and outcomes matter more than ever

It is 50 years since Dame Cicely Saunders began to help the world think differently about ‘what matters’ in health care. Many things have changed in that time. Some major shifts have been the requirement of health services to measure their effectiveness and prove they make a difference. Others include the introduction of ‘patient-centredness’ in medicine, nursing and allied health professions; a growth in ageing and complex comorbidity that is projected to increase rapidly; and a global expansion from palliative care’s origins in terminal care of cancer patients in a handful of high-income countries.

The majority of countries (regardless of wealth) are facing resource restrictions in health and social care. More than ever, we have a duty to patients, families, funders and policymakers to ensure that we measure what matters and the quality of our work.

The benefits ­ – and risks – of measurement in palliative care 

We have a wealth of evidence of what matters to our patients and families – and it is usually very different from other fields that measure ‘outcomes’ in healthcare. For people using palliative care services, in addition to the outcomes that might matter in other groups (such as pain, anxiety, depression), we have outcomes such as spiritual wellbeing, family support, meeting preferences for place of death, advance care plans, as well as for a wide range of common symptoms. The challenge we face is that we care about all of these outcomes for each patient – not just one or two. And our patients and families are often very sick and it would be inappropriate to ask them to complete long outcome measures.

The science of measurement can be complex – patients, families and clinicians want to know that a simple, brief and valid tool will quickly and accurately help them to identify their main symptoms and concerns, inform care planning, and monitor their response. The field of palliative care needs to know it can conduct high-quality research based on well-designed and evaluated measures. Without good science underpinning our measures we risk them not reflecting what matters to those they intend to help, or not being seen as useful and therefore not adopted in routine practice by care teams. And crucially, badly designed and poorly tested tools risk not picking up meaningful changes for patients and families under our care – and therefore giving us a false impression that our care has had no effect.

Outcome measurement – a global story of success in palliative care 

Outcome measurement has become a standard around the world – for example informing the funding tariff in the UK, and being a requirement to be an accredited 5* hospice in South Africa. An example of a scientifically robust measure is the Palliative Outcome Scale (POS) – with more than 8,000 registered users in 126 countries (see www.pos-pal.org). Other common measures include the Edmonton Symptom Assessment Scale (ESAS), and FACT-Pal.

Outcome measurement enables clinical services to drive up quality and to underpin research. Most importantly, the use of outcome measures has enabled us to focus on what matters to patients and families, while building the evidence base for the effectiveness and cost-effectiveness of palliative care. Choosing robust measures, and ensuring mechanisms to allow data to drive better practice, are essential in achieving this.

Links

 

 

Posted in Salzburg Global Seminar Series | 1 Comment

What matters to me: A human rights approach to end of life care

Caroline Belchamber, Professional Lead for Education at Sue Ryder and Visiting Fellow at Bournemouth University, UK, explores a human rights approach to end of life care

Caroline Belchamber

Are we delivering effective end of life care?

Lack of confidence in delivering effective end of life care is a recurrent problem in United Kingdom (UK) hospitals. The Dying Matters Coalition set up by the National Council for Palliative Care reports that, ‘more than half of the complaints referred to the National Health Service Ombudsman, concern end of life care.’ This is confirmed by a recent report: On the brink: the future of end of life care, which states that poor end of life care has been experienced by around 48,000 people in the last year.

What can we do to improve end of life care?

We need to support and empower practitioners delivering this care and that requires a new approach. At Sue Ryder, we believe that this approach should be based on human rights. Sue Ryder provides hospice and neurological care in the UK. We treat and care for more conditions than any other UK charity and campaign to improve the lives of people living with these conditions. As part of our mission to provide personalised and compassionate care, Sue Ryder is leading a pioneering education initiative to embed a human rights approach. Working with the British Institute of Human Rights we have developed a practical guide to end of life care and human rights, which addresses the challenges associated with ethical decision making and how the Human Rights Act (1998) can be a valuable tool for navigating these challenges.

Why should we include human rights in end of life care?

The Care Quality Commission and the Royal College of Nursing have incorporated a human rights approach to regulate services and care assessments as a response to the failings of the Liverpool Care Pathway and the learnings from the Francis Inquiry, which called for a patient-centred focus to frame discussions in human rights. Human rights operate in the UK under international and national law and are legally enforceable, so health and social care providers have a duty to meet patients’ entitlements (RCN, 2017). The FREDA principles (Fairness, Respect, Equality, Dignity and Autonomy) are considered to underpin all international human rights treaties. The Human Rights Act (1998) takes 16 of its rights directly from the European Convention on Human Rights and can aid ethical decision making, affect change, ensuring compassion and dignity are at the heart of end of life care. Using a human rights framework could effectively guarantee high- quality personalised care. Immediate accountability and longer-term change should therefore be shaped by human rights, including equal access to palliative care as a basic human right to enable people to live the final stages of their lives with dignity (www.hrw.org).

What do we mean by dignity and human rights?

Human dignity is an underlying principle of the Universal Declaration of Human Rights (UDHR) providing a mutual standard of attainment, where human rights and the promotion and protection of health are inextricably linked (WHO, 2002). A human rights approach is essential both in developing health policies and services and in individual practice (RCN, 2017) However, human dignity as an underlying principle is controversial with different religious and philosophical understandings combined to provide a globally accepted definition. This has led to the ambiguity of the concepts meaning. An understanding of the interpretation of human dignity is required to reduce conflict around end of life care and euthanasia: End of life care definition of human dignity is from a religious and interpersonal viewpoint, whereas euthanasia is defined from a philosophical individualistic viewpoint. Personal autonomy, a key aspect of human dignity, is provided as justification for euthanasia and interpreted in an individualistic manner. However, the UDHR reminds us that human beings possess an inherent dignity, which is a human and civil right and should be framed in an interpersonal, social and community manner (Loughlin, 2016).

How can this be translated into practice?

Through the Sue Ryder workshops and using the practitioners guide we can unpick the human rights language, embed key principles and develop understanding and confidence, ensuring sustainable improvements in care to meet the needs of people at the end of life. Evaluation of our pilot workshops demonstrates that practitioners benefit from support to embed this approach into practice: 

“Although this was something I was aware of, the session has given me the tools to engage with Human Rights effectively.”

A human rights approach is unique in its premise of challenging professional boundaries and empowering practitioners to apply a universal and fundamentally personalised framework, with the potential to transform end of life care in all settings preventing poor end of life care.

Please email Jacqui Graves, Palliative Care Service Educator for more information on ‘What matters to me: a human rights approach to end of life care’.

To find out more …

Please access http://www.sueryder.org/how-we-help/education-and-training/human-rights-and-end-of-life-care 

References

Department of Health (DOH), 1998. Human Rights Act.  [Accessed March 2017].

Loughlin, J. 2016. Human Dignity: the foundation of human rights and religious freedom. Universidad de Navarra. ISSN:1139-0107; DOI: 10.15581/001.19.313-343.

Royal College of Nursing (RCN), 2017. RCN: Health Care and Human Rights. [Accessed March 2017].

World Health Organization (WHO), 2002. 25 Questions and Answers on Health and Human Rights, Geneva: WHO.  [Accessed March 2017]

 

Posted in ADVOCACY & POLICY | Tagged | Leave a comment