‘The Black Man is Not Supposed to Be Here’.

For the second blog in the EAPC’s ‘Racism in Palliative Care’ series, Maurice C Scott, Jr. gives a very personal account of his experiences as a Black male healthcare professional in the United States.


The United States has always had a complicated relationship with race.  In my family though, I felt relatively sheltered.  My father is Black and my mother is White.  Both are from rural areas in the central part of the country.  They seemed to have a loving relationship, and showered that love on me.  Their parents were also supportive of my nuclear family.  As a result, I was raised truly believing that when people interacted with me, their judgements were based on the content of my character, not the colour of my skin.  As COVID-19, George Floyd protests, and the Black Lives Matter Movement raged, race in America (and all of its associated inequities) was again at the forefront in our nation’s discussions.  And for the first time in a long time, it seemed like nothing about my character, accomplishments, or education achievements mattered; nearly everyone saw me as a Black man – nothing more, nothing less. 

One day, our hospital palliative care team was asked to see a 30-year-old man with COVID.  His condition was worsening and we were asked to have a goals of care discussion with his parents.  From the beginning, they were clear that he would not want a prolonged recovery and would prefer to de-escalate interventions and focus on comfort.  I went to relay the details of the discussion to his nurse.  She quickly looked me up and down and said, ‘I need to speak to a doctor’.  I told her, ‘I am a doctor’.  After examining my badge, our eyes again met.  She replied, ‘You know what I mean…a real doctor’.   I did not know what to say.  Race was near the top of my mind.  I felt put in my place, not as a doctor but as a Black man in America.  A colleague encouraged me not to take it personally.  I promised to try.

Not five minutes later, we entered another patient’s room.  She glared at me, looked at the physicians’ assistant I was with, and screamed out, ‘The Black man is not supposed to be here.  The Black man is not supposed to be here’.   Shocked, my co-worker tried to assure the patient that I WAS supposed to be there.  That I WAS one of her doctors there to care for her.  Apparently, I did not look the part because the patient continued to yell.  With shoulders slumped and head hanging, I turned and walked out the door.  Again, I felt put in my place, not as a doctor but as a Black man in America. 

In palliative care, we are expected to see patients as individual people – to better understand them by hearing their stories, acknowledging their multi-dimensionality, and matching their values-based goals of care to a treatment plan.  This can be a difficult thing to do. It becomes all the more difficult if they look back at us and see only a colour, something positive or negative, nothing more or less.  And all I can say in reply is, ‘I wish things were different’.

Links and resources

  • Read the EAPC blog series ‘Racism in Palliative Care’ here.
  • Click here for Association for American Medical Colleges collection looking at Racism and Health
  • Nursing Licence Map’s Anti-Racism Resources for Students and Professionals in Healthcare can be found here.
  • Read Stanford Medicine Anti-Racism & Health Resources: Engaging in Anti-Racism.

About the author

Dr. Maurice C. Scott, Jr., MD is an Assistant Professor of Internal Medicine at The University of Colorado School of Medicine. He is a board- certified Family Medicine physician, a member of the American Academy of Family Physicians (AAFP), a fellow of the American Academy of Hospice and Palliative Medicine (AAHPM), and Co-Director of the Community Hospice and Palliative Medicine Fellowship. Dr. Scott practices with the University of Colorado (CU) Palliative Medicine Service that is accredited by the Joint Commission. He is a CU School of Medicine Compass guide (a medical student coach), a member of the CU School of Medicine faculty senate and is on the Equity, Diversity, Inclusion and Belonging committee for palliative medicine and teaches traditional palliative care fellows advance communications skills. In his spare time, Dr. Scott likes to exercise, spend time with family and friends and read non-fiction spiritual and biographical books. 


Posted in BLOG SERIES, OPINION PIECES, Racism in Palliative Care | Leave a comment

‘We are making a new world’: the top ten EAPC blogs January to June 2022!

We are delighted to announce the top ten EAPC blogs for the first six months of 2022. Professor Mark Taubert, EAPC Editorial Team member, tells us more…


image: The view over a desolate landscape with shattered trees, the earth a mass of shell holes. The sun hangs high in the sky, beams of light shining down through heavy, earth-coloured clouds.
Paul Nash ‘We are Making a New World’ (Art.IWM ART 1146)
Copyright: ©IWM Imperial War Museum.

The EAPC Editorial Team have been working hard to curate a thriving blog. Seeing how many people actually access these pages now is quite incredible, and as someone who reviews content, I can say that the diversity of topics never fails to amaze me. It also feels like a huge privilege to read these entries from all over the world, and to get a little insight into what people’s professional lives are like elsewhere. The glue that binds all of this together – those who need good palliative care and those who try their best to give it – is evident in these blogs.

Can we be hopeful for the future of palliative care? Some of the challenges reflected in the blogs are huge. But reading through them, even those that outline the worst of conditions, still always allows for some (though sometimes small) rays of hope. Trying to be optimistic these days is like an exercise regimen that needs constant discipline and rigour. All of the blog authors have put pen to paper, written down a list of challenges and then come up with what they think may work. This they have carried out in full understanding of how urgent a state our world is in.  I’m sometimes reminded of a painting by Paul Nash in the Imperial War Museum, entitled ‘We are making a new world’. The view is of a desolate, destroyed landscape, composed of shattered trees, the earth a mass of shell holes. Yet, the sun hangs high in the sky, beams of light shining through heavy clouds, and you get the feeling that someone is always there to start all over again.

So with thanks to the palliative care community, and in particular to our blog authors, for sharing their research, their strides forward, their hopes and fears. On behalf of the EAPC and Editorial Team, I am delighted to share with you the top ten blogs for the first half of 2022. 

The EAPC’s most read blog published between January to June 2022 is:

Eric Finkelstein, What matters most to patients and families at the end of life: Findings from Quality of Death and Dying index.

And in alphabetical order, our other top ten most read blogs are:

Global Palliative Care Community Statement on the Humanitarian Crisis in Ukraine.

Carlos Seiça Cardoso, Let’s make palliative care accessible to people of every language in Europe and beyond!

Luc Deliens, What happens when palliative care is neglected as a public health priority? (Public Health EAPC blog series).

Maaike Haan, Comics in Palliative Care: helpful or too confrontational? (Palliative Medicine Editor’s Choice).

Kristina Keleman, Life in Lviv, Ukraine (Ukraine EAPC blog series).

Sheila Payne, Revised Recommendations on Standards and Norms for Palliative Care in Europe from the European Association for Palliative Care (EAPC): A Delphi study published in ‘Palliative Medicine’.

Libby Sallnow, The Lancet Commission on the Value of Death: understanding a realistic utopia (Public Health EAPC blog series).

Iryna Slugotska, Life in Ivano-Frankivsk, Ukraine (Ukraine EAPC blog series).

Marek Uhlíř, Approaching the End of their lives under blue lights and sirens.  

Stay tuned for our top twenty of 2022, coming to you in the summer! And if you are interested in being the author of one of our most read blogs click here to read our Contributor’s Guidelines or get in touch with the Editor to discuss your exciting blog idea.

Links and resources

About the author

Prof. Mark Taubert is a Palliative Medicine Consultant and Clinical Director at Velindre University NHS Trust in Wales and is a member of the EAPC Editorial Team. Twitter:@ProfMarkTaubert.


Posted in 2022 most viewed posts, SOCIAL MEDIA, Top Ten Most Viewed Posts | Leave a comment

Artificial Intelligence has no role in palliative care…or does it?

It would be easy to assume that there many things which could contribute to the development of palliative care, but Artificial Intelligence (AI) isn’t one of them.  Yet, today we hear from Dr.Max Sarmet and Dr. Ambereen K. Mehta – both passionate about technology, and who make the case that AI can make a unique contribution to advancing palliative care.


Artificial Intelligence (AI) has been playing an increasingly important role in our daily life. In healthcare, AI algorithms can analyse large amounts of complex medical data, helping medical professionals to make more informed decisions, such as predicting patient outcomes, diagnoses, and treatment plans.1,2 AI-powered tools and systems can also be used for drug discovery, medical imaging, and disease monitoring, among other applications.1,2,3 By using AI in these diverse ways, researchers and clinicians can process vast amounts of data, identify patterns, and make predictions that are not possible through manual analysis alone. As a result, AI has the potential to revolutionise the way healthcare is delivered and improve patient outcomes.1,2,3

As researchers in palliative care and passionate about technology, we decided to explore how AI tools have been used in our field in recent years. We focused on Natural Language Processing (NLP), a subfield of AI and computer science that deals with human-computer interaction using natural language.3 NLP involves developing algorithms and models to understand, interpret, and generate human language (called ‘natural language’), such as speech and text, enabling computers to process and analyse it. NLP is used in a variety of applications such as virtual assistants (e.g., Siri and Alexa) to understand and respond to user commands or queries. Chatbots (e.g., ChatGPT and online customer service) use NLP to converse with users in a natural, human-like way. NLP is also used in ‘sentiment analysis’ to analyse and understand the emotions or opinions expressed in text or audio. Overall, this technology has the potential to improve human-computer communication, meaning that AI will have even more uses in our everyday lives.

According to our scoping review findings, the use of NLP in palliative care research has been growing in recent years. A review of 82 papers on this topic found that NLP has been used in various ways, from analysing text from electronic health records to assessing quality benchmarks for processes of care (for example, treatments performed, length of stay in ICU or time from hospitalisation to discharge). Thirty-two different NLP software and 33 different machine learning methods were identified within palliative care research, used alone or in combination to extract and analyse data. The most frequent use of AI in palliative care was mortality and prognosis prediction. Algorithms were employed in this case to predict the progression of a disease or the life expectancy of a patient by utilising electronic health record (EHR) data. This facilitates clinicians in making well-informed decisions, resulting in better care for end-of-life patients. We also identified a trend where natural language processing was frequently used in analysing clinical serious illness conversations extracted from audio recordings. There are numerous AI-based software applications that can process thousands of recorded audio conversations in just a few minutes. These applications are capable of identifying trends, the most commonly discussed topics, and even the emotions expressed within the conversations.

In comparison to traditional research methods, NLP provides more accurate and in-depth analysis, with more comprehensive data sources and less interpretation bias.1,2,3 The increasing interest from funding agencies in studies using NLP for palliative care research and the fact that this article was selected as February’s Palliative Medicine’s Editor’s Choice highlights the potential for this method to have a significant impact on the field.

In our review, NLP showed its potential to overcome challenges associated with symptom identification and quality assessment in large datasets, promote research in policy-making and improve outcomes for patients, care partners, and healthcare workers. With its ability to analyse a wider range of subjects and larger amounts of data,1 NLP has been used in palliative care studies to identify outcomes which are more specific and more meaningful to patients and their relatives.

Incorporating AI into our lives and work can significantly increase our potential as humans by augmenting our capabilities and allowing us to tackle complex problems more efficiently and effectively. By harnessing the power of AI, we can gain new insights, make more informed decisions, and achieve outcomes that would otherwise be difficult or impossible to achieve. We hope that our study will support others to harness the power of AI in palliative care research while upholding the fundamental human principles of the field, which will never be fully replicated or substituted by AI.

READ THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’!

‘The Use of Natural Language Processing in Palliative Care Research: a Scoping Review’ Max Sarmet, Aamna Kabani, Luis Coelho, Sara Seabra dos Reis, Jorge L Zeredo, and Ambereen K Mehta. First published:  Palliative Medicine 2023, Vol. 37(2) 275–290. EAPC members can access a FREE copy from the EAPC website here.

References

1.         Morin L, Onwuteaka-Philipsen BD. The promise of big data for palliative and end-of-life care research. Palliative medicine 2021; 35: 1638–1640.

2.         Nwosu AC, Collins B, Mason S. Big Data analysis to improve care for people living with serious illness: The potential to use new emerging technology in palliative care. Palliative medicine 2018; 32: 164–166.

3.         Yim W-W, Yetisgen M, Harris WP, et al. Natural Language Processing in Oncology: A Review. JAMA Oncol 2016; 2: 797–804.

Links and resources

  • Learn more about technology, science, and AI at the MIT Technology Review website here.
  • Read other Palliative Medicine Editor’s Choice posts on the EAPC blog.
  • Follow Palliative Medicine on Twitter: @palliativemedj

About the authors

Dr.Max Sarmet, SLP, MSc is a Speech-Language Pathologist from Brazil working with Neuropalliative care. He is also a PhD candidate at the University of Brasília in the field of Health Science and Technology. He is the Social Media Task Force Lead for the Strategic Communications Committee of the International Neuropalliative Care Society (INPCS) @Neuropalcare.  Twitter: @MaxSarmet. ORCID: 0000-0003-3029-8912.  

Dr. Ambereen K. Mehta, MD, MPH is an Associate Professor of Palliative Medicine at Johns Hopkins School of Medicine. She developed the palliative care program for the Johns Hopkins Center for ALS Specialty Care. She is currently co-chair of the Palliative Committee for the Northeast ALS Association and Chair of the Strategic Communications Committee for the INPCS. Twitter: @AMehtaMD. ORCID: 0000-0001-7834-2279.


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

Hurdle Hopping: collaborating to overcome challenges in palliative care education.

According to the World Health Organization (WHO), insufficient knowledge about palliative care and the capacity of health workers to deliver it are significant barriers to accessing palliative care. For today’s blog, Professor Piret Paal from the newly founded Institute of Palliative Care at the Paracelsus Medical University in Salzburg, Austria tells us about the work underway to address these barriers.


Dr. Irina Slugotska and colleagues discussing ethical challenges at the 2019 training in Ukraine.

The WHO European Region in collaboration with the EAPC Reference Group for Education and Training in Palliative Care and the WHO Collaborating Centre at Paracelsus Medical University in Austria, have been working on innovative solutions to promote and support interprofessional collaboration across different health sectors to improve access to palliative care education. This initiative was launched in 2016, with its aims set out in the EAPC blogpost here, and I’m delighted to update you on the significant developments that have taken place since then.

We began by undertaking a European survey in 2017 to find out what healthcare generalists (such as family doctors, ICU staff, radiologists, or neurologists) should learn in order to provide palliative care to European citizens. The results were published here and we found significant agreement about the key elements of palliative care education.

In 2018, a survey was sent to low- and middle-income countries in the WHO European region. We found that post-graduate training in palliative care does not exist in one third of the twenty-one countries surveyed. The main obstacles to the development of such education were limited political interest, educational structures, lack of curricula, lack of trainers and no support from health systems to provide palliative care (for example, no investment in this area, work force or health insurance provision). As our paper highlights, 93% of respondents agreed that a WHO recommended interprofessional curriculum would help promote palliative care.

In our qualitative interviews, palliative care experts from twenty-three countries were asked whether an introduction of a post-graduate European curriculum would be useful and culturally acceptable. The analysis indicated that palliative care is seen as a universal idea, which in practice means accepting that people with different backgrounds and expectations live and die within national healthcare systems. This makes teaching palliative care a very special task, because accepting the societal diversity and uniqueness of each patient and caregiver, may frequently challenge the personal beliefs and values of both teacher and student. Our paper indicates that, in theory, a European curriculum is seen as useful to convince governments and other key stakeholders of the importance of postgraduate palliative care education. In practice, such a curriculum needs to be adapted to local possibilities, values and needs.

Combining the results of these surveys and interviews, we introduced a one-week interprofessional training in palliative care for capacity building and empowerment. The idea was to ‘train the trainers’ and we used a toolkit as the basis of the course. This training was tested and evaluated in Ivano-Frankivsk, Ukraine in 2019. Currently, Ukrainian colleagues are working on creating an information technology platform for communication between hospices and for educational programmes on palliative care, as such co-operation and communication are particularly important in times of war.

Our research has shown that professionals working in healthcare in Europe currently acquire the relevant and necessary palliative care knowledge mainly through training, seminars and conferences, organised by public and non-profit organisations. In countries where palliative care is not recognised as a subspecialty or as a specialisation in its own right, any training represents a major individual effort and financial burden. Without official recognition of the professional and financial benefits, the acquisition of palliative care competencies remains professionally unattractive and/or unachievable by individuals.  Therefore, educational recommendations and quality assessment criteria for all professionals involved in the delivery of palliative care services, validated by high-level non-governmental organisations, governments or professional bodies, are crucial to advance postgraduate education both nationally and globally.

We are proud of the significant work undertaken over the last six years.  We hope these collaborations for better access to palliative care education will continue across the region, continuing to break down barriers to help people have high quality palliative care when they need it.

Thank you to all the people who participated in our studies and provided us with important support, information and feedback. Special thanks go to the EAPC past and present board members, EAPC Educational Reference Group, Prof. Dr. Jürgen Osterbrink (Salzburg), Dr. Andreas Stähli (Münster), Dr. Elisabeth Jentschke (Würzburg), Dr. Johannes Bükki (Stuttgart), Prof. Anna Ersteniuk and Dr. Irina Slugotska (Ivano-Frankivsk) as well as to Paracelsus Medical University for providing extra funding for the six month field research, as well as for a one-week training in Ukraine.

Links and resources

About the author

Professor Piret Paal is director of the Institute of Palliative Care in Salzburg, Austria. From 2017 to 2022, she worked as Deputy Director of the WHO Collaborating Centre at Paracelsus Medical University. Her research interests include global health, palliative care education and spiritual care. She is an active member of the EAPC Reference Group for Education and Training in Palliative Care. ORCID ID: 0000-0002-1341-3248 Twitter: @pal_pmu.


SAVE THE DATE! EAPC 18th World Congress 15-17th June 2023. Find out more here.

  • Register now!  Early Bird rate until 1st March 2023.
  • Nominate yourself or a colleague for the EAPC World Congress 2023 Researcher Award!  Find out how to apply here
  • FOLLOW @EAPCvzw #EAPC2023.
  • Sign up to the EAPC blog to hear more about the Congress.
Posted in ADVOCACY & POLICY, EAPC ACTIVITIES, EAPC Task Forces/Reference Groups, EDUCATION & TRAINING, RESEARCH | Leave a comment

A year of work during the war: Sheptytsky Hospital palliative department, Ukraine.

On 24th February 2022, Russia invaded Ukraine.  As part of our blog series about the impact of the war in Ukraine, and to mark one year since the Russian invasion, Kristina Keleman, from Sheptytsky Hospital, Lviv, Ukraine, reflects on an unimaginable year.


Dr. Marta Rypyhovych, head of Sheptytsky Hospital palliative care department.

The main goal of palliative care in Sheptytsky Hospital is to maintain the quality of life in its final stage, to alleviate the physical and moral suffering of the patient and their relatives as much as possible, and to preserve the patient’s human dignity at the end of their earthly life. Long-term round-the-clock care of a terminally ill person at the place of residence is often an unbearable burden for relatives because, in addition to physical stress, spiritual and psychological stress is added, and the problem of lack of knowledge and basic skills of caring for bedridden patients is also often encountered.

The palliative care services offered at Sheptytsky Hospital include the assessment of the needs of patients; relief of pain and other symptoms of an incurable progressive disease; help to overcome concomitant symptoms (constipation, nausea, breathlessness, pressure ulcers etc.); counselling and training of persons who care for the patient, and coordination and cooperation with other institutions to ensure the medical, psychological, social and other needs of the patient are met.

Since the beginning of the full-scale war, more than 245,000 internally displaced persons have been officially registered in the Lviv region. Every day, the number of people displaced only increases. Since last February, the Sheptytsky Hospital has been actively involved in helping those who are displaced, as well those who normally live in Lviv. A vivid example of such assistance is the palliative department of the Hospital.

During the war, we have comprehensively supported people in need of medical treatment and assistance. We have managed to:

  • receive more than 200 palliative patients
  • purchase equipment for the leisure of palliative patients (such as televisions)
  • purchased new beds that are more comfortable for patients
  • installed new patient wardrobes, and
  • installed oxygen for patients in the palliative department.

Internally displaced persons entering our palliative care unit also need social and humanitarian services. Therefore, the Hospital team works closely with various charities and other organisations to meet their needs. Every day, our staff perform a titanic job and we, as a Hospital, appreciate and support the palliative care department in every way.

Support at the Sheptytsky Hospital palliative care department

Links and resources

  • Read Life in Lviv, Ukraine – Kristina’s EAPC blog from March 2022.
  • To read more in the EAPC blog series on the impact of the war in Ukraine, click here.
  • Click here to learn more about Sheptytsky Hospital.

About the author

Kristina Keleman is the Head of Development at Sheptytsky Hospital. She has worked at the hospital since 2019. Her department is responsible for development, fundraising, public relations and marketing for the hospital. 


SAVE THE DATE! EAPC 18th World Congress 15-17th June 2023. Find out more here.

  • Register now!  Early Bird rate until 1st March 2023.
  • Nominate yourself or a colleague for the EAPC World Congress 2023 Researcher Award!  Find out how to apply here
  • FOLLOW @EAPCvzw #EAPC2023.
  • Sign up to the EAPC blog to hear more about the Congress.
Posted in PALLIATIVE CARE IN HUMANITARIAN CRISES, Ukraine | Leave a comment