End of life care communication training for generalists: Improvements in showing empathy and discussing emotions, but more effective in simulated patient encounters than real ones

Dr Lucy Selman, Research Fellow (Qualitative Research in Randomised Trials), the University of Bristol, UK, explains the background to a longer article published in the Journal of Pain and Symptom Management.

Dr Lucy Selman

In a systematic review published recently, we identified 153 communication skills training interventions for generalists in end of life care. In randomised controlled trials, training improved showing empathy and discussing emotions in simulated interactions (i.e. with actor patients), but evidence of effect on clinician behaviours during real patient interactions, and on patient-reported outcomes, was inconclusive.

The global increase in the proportion of older people and length of life means providing end of life care is now increasingly the responsibility of generalist as well as specialist palliative care providers. But many clinicians find communicating about end of life issues challenging: how do you best discuss imminent mortality, limited treatment options, what to expect when you’re dying, or a patient’s preferences for end of life care? While research in clinical communication has grown in recent years, there is little consensus regarding optimal training strategies and the most effective teaching methods.

As part of a study into generalist palliative care education, we conducted a systematic review on communication skills training for generalist end of life care providers. We knew that most studies measured effectiveness using clinicians’ own assessment of their confidence and competence, neither of which necessarily translates into changed behaviour or patient benefit. We therefore pooled the statistical results from randomised controlled trials (RCTs), to examine the effect of training interventions on patient-reported outcomes and staff behaviours.

Key findings

  • Overall, 160 studies evaluated 153 different training interventions.
  • 27 per cent of studies used a controlled design (e.g. compared trainees with people who did not receive the training), 13 per cent randomised participants.
  • Only 6 per cent of studies assessed the impact of staff training on patient or family outcomes.
  • Reporting and methodology were often weak; we developed a CONSORT statement supplement to improve future reporting and encourage more rigorous testing.
  • Of 160 studies identified, 19 were RCTs assessing the effect of communication training for clinicians on patient-reported outcomes and/or clinician behaviours in either real or simulated encounters with patients.
  • There was a significant effect of training on showing empathy and discussing emotions in simulated interactions (i.e. with actor patients), but evidence of effect on clinician behaviours measured during real patient interactions was inconclusive (Figures 1 and 2).
  • The two interventions with effects on showing empathy in real patient interactions included feedback on a recorded interaction.
  • Evidence regarding the effect of training on patient-reported outcomes or experiences (anxiety, depression, perceived empathy and satisfaction with communication skills) was inconclusive.

Figures 1 and 2

 

Conclusions
Training generalist staff in end of life care communication skills can improve their ability to show empathy and discuss emotions, and the use of feedback on a recorded patient interaction can be especially effective. However, we found that the effects of training on clinicians’ behaviours during simulated interactions are not reflected as strongly in their behaviours when interacting with real patients. More research is needed to understand this intriguing finding. Few studies assessed the effect of training clinicians on the outcomes or experiences of the people they care for. While this is what we expected, it is nonetheless disappointing and should be rectified in future research.

References
Selman et al. The effect of communication skills training for generalist palliative care providers on patient-reported outcomes and clinician behaviours: a systematic review and meta-analysis. Journal of Pain and Symptom Management. September 2017 Volume 54, Issue 3, Pages 404–416.e5

Brighton et al. A systematic review of end of life care communication skills training for generalist palliative care providers: research quality and reporting guidance. Journal of Pain and Symptom Management. September 2017 Volume 54, Issue 3, Pages 417–425

Brighton et al. End of life care communication skills training for generalist palliative care providers: a systematic review [protocol]. PROSPERO 2014:CRD42014014777.


More about the author

Dr Lucy Selman is a Research Fellow at the University of Bristol. Her research focuses on communication, decision-making, and psychosocial and spiritual aspects of palliative and end of life care. Follow her on Twitter at @Lucy_Selman

 

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The experience of spiritual pain for dying migrants away from birth country

New series: Posters from the 15th World Congress of the European Association for Palliative Care

Poster presentations are an essential cornerstone of every EAPC Congress – this year in Madrid more than 900 posters were on display representing the scientific rigour and commitment of people involved in palliative care from across the world. If you were not able to attend the congress in Madrid, now’s the chance to see some of the posters close up and to enter into discussion with the contributors . . . 

Dr Yvonne Bray, Academic Coordinator and Lecturer, Palliative Care, Department of General Practice and Primary Health Care, Auckland, New Zealand, explains the background to her poster: ‘The experience of spiritual pain for dying migrants away from their birth countries’.

Dr Yvonne Bray

Migrants bring cultural expressions, rituals and traditions from an identity developed in their birth country to their adoptive country. When aspects of historicity and life meaning, culture and religion are not recognised and acknowledged in settling into a country, spiritual pain in end of life may result.

The stories of the migrants in this research project, as they reflect in end of life, illuminated their possession of a new hybrid identity and their inner ethnic and cultural identity, which were not always harmonious. In this article, I would like to focus on the group of migrants who experienced dissonant feelings and spiritual distress as a result of concealing their different cultural expressions brought from homeland in their everyday living. Their feelings of being different affected their sense of belonging in an adoptive country.

Hemani was of Indian ethnicity, Hindu by religion, she drew the picture of exclusion with her words “if you saw someone and said ‘Hi’ they don’t say hello back to you.” Her disappointment with this new world could be detected as her need to be included, supported and acknowledged in this new country, was rejected.

Raymond was from a Chinese ethnicity and Buddhist religion, and he expressed sadness that he was in a place, not of choice, but out of duty to offer his children the best future as a parent. Both Hemani and Raymond displayed physical and cultural expressions in appearance, speech, beliefs, values, cultural approaches to life and religious affiliation, which were different to the dominant (European) population group of western ethnicity in New Zealand. For both these migrants, their bond with country of birth was strong and represented their home community that they now wanted around them in end of life. Living with difference now became a longing for both of them to be back in their birth country.

As their life review continued with impending end of life, they reminisced like all dying people but pondered their migration decisions, loss of dreams of going home and savoured the good memories of ‘homeland’. These represented significant losses for them. Bowlby (1977) in his attachment theory described “the propensity of human beings to form affectional bonds to others” (p. 201), and to places, things and other living creatures. Unwilling separation in the attachment can lead to a perception or reality of ‘aloneness’. The intense emotions that arise as a result of disruption result in sorrow. The ‘continuing bonds’ model of grief depicts a person who is suffering a loss and holding on to what is lost with a degree of unresolved grief feelings (Silverman and Klass, 1996).

In their efforts to resolve their feelings of aloneness, grief and sadness, Hemani and Raymond turned their attention in the time left before end of life to enacting continuity with their motherland through their children. Conveying dying wishes and remembrance through acts of cultural legacy were also a part of this wish. For migrants, finding belonging is fundamental to settling in their adoptive country and achieving spiritual peace in end of life.

References

Bowlby J (1977). The Making and Breaking of Affectional Bonds. British Journal of Psychiatry 130: 201 – 210.

Silverman P and Klass D. Introduction: What’s the Problem? In: Continuing Bonds. New Understandings in Grief. D. Klass D, Silverman P and Nickman S (eds). Washington: Taylor and Francis, 1996.

Acknowledgement
I wish to acknowledge the support and time that Professor Rod MacLeod has afforded my research work in this topic. As palliative medicine specialist at a hospice in Auckland, his clinical perceptions brought new awareness to the discussion.

Links and further reading

Submit your abstracts now . . .
10th EAPC World Research Congress, Bern, Switzerland – 24 to 26 May 2018. Submit your abstract now.   Closing date:
15 October 2017.


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What happens to palliative care in times of mega disaster?

New series: Posters from the 15th World Congress of the European Association for Palliative Care

Poster presentations are an essential cornerstone of every EAPC Congress – this year in Madrid more than 900 posters were on display representing the scientific rigour and commitment of people involved in palliative care from across the world. If you were not able to attend the congress in Madrid, now’s the chance to see some of the posters close up and to enter into discussion with the contributors . . .

Here, Dr Sunita Panta from Nepal explains the background to her poster: ‘Limitations in Chronic Pain Management and Efficacy of Alternative Modalities during Mega Disaster in an Underdeveloped Nation’.

Dr Sunita Panta

Anyone who works in a low-income country with few palliative care services will be acutely aware of the difficulties and challenges that confront us daily, but when your country is also prone to earthquakes, or other natural disasters, the challenge is even greater. My poster describes the unique difficulties and obstacles that we faced when disaster struck our country.

For the past 17 years, I have been working in a tertiary military hospital, Shree Birendra hospital in Kathmandu, Nepal, as an anesthesiologist. Palliative care in my hospital started with pain management for chronically ill patients. Later, with the establishment of an oncology ward, other symptoms such as nausea, vomiting, constipation, loss of appetite, lack of sleep, anxiety, and depression demanded a palliative care approach in the hospital. A pain management clinic was started for outpatients with cancer, prolapsed intervertebral discs, migraine, fibromyalgia and post herpetic neuralgia, based on the World Health Organization pain ladder treatment principles.

Opioids were prescribed supplemented with adjuvants such as acetaminophen and non-steroidal anti-inflammatory drugs with a numeric rating scale of 0-11 as a guide. The clinic was run on a weekly basis but the opioid prescription was limited to five days owing to hospital regulations. Fortunately, we were able to extend the prescription of morphine for a week with proper documentation and later the pain clinic was also extended to twice a week. Oral morphine in tablet and syrup form became the drug of choice for chronic cancer pain. Despite side effects such as nausea, constipation and drowsiness, patients were able to eat well, sleep well and carry out their daily activities, thus improving the quality of life.

The Nepal earthquake in 2015 led to a surge of casualties in my hospital and other negative outcomes. Chronic pain patients were discharged and were deprived of prescribed opioids. The hospital was partially damaged and the acute wards had to be shifted into tents. Because of lack of space and personnel, the pain clinic could not function and continuous aftershocks prevented the patients from coming to the hospital.

Patients resorted to alternative modalities including over the counter drugs, vitamins, herbal medications supplemented by yoga, massage, meditation and traditional remedies such as tiger tattoos to stop the spread of herpes zoster lesions on the body. But most of the alternative methods were less effective than opioids and had more side effects. The pain clinic re-opened two months later but by now we had lost many of our patients and some were reluctant to discontinue their alternative medication and restart the chronic pain therapy.

Nepal is a low-economy disaster-prone country and in dire need of palliative care. During disasters, mass-casualty management policies should have provision for palliative care too. There should be better communication so that patients are informed about other sources of pain management and palliative care treatment. Regional and international medical teams assisting in disasters should come prepared to provide pain management and palliative care along with acute trauma care.

Links and resources

10th EAPC World Research Congress, Bern, Switzerland – 24 to 26 May 2018. Submit your abstract now (closing 15 October 2017.

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The taming of the chameleon – guidance on Conducting and REporting DElphi Studies (CREDES)

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

Dr Saskia Jünger, senior research associate at the Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health (ceres), Germany, explains the background to her longer article selected as ‘Editor’s Choice’ in the September 2017 issue of Palliative Medicine.

Dr Saskia Jünger

The Delphi technique1 is widely used for the development of guidance in palliative care, having an impact on decisions with relevance for patient care. Having been involved in the realisation of diverse international consensus-building processes using the Delphi technique – either as the coordinator or as a co-researcher – I have had the opportunity to witness the power of this method for the production of scientific knowledge in palliative care, and I have come to value its fascinating nature.

Due to its methodological versatility, the Delphi technique reminds me of a chameleon; its design can be flexibly adapted to diverse research needs. This characteristic may have contributed to a certain arbitrariness regarding its application: “In their enthusiasm, some analysts have urged Delphi for practically every use except cure of the common cold.”

However, the credibility of a Delphi study depends on the rigour of its implementation. We need to be mindful of this when using the technique since any decisions made as a result of a Delphi study may impact on clinical practice. The technique is widely applied in palliative care research, e.g. for the development of clinical guidance and standards for service delivery; health policy recommendations; for curriculum development; or for the identification of quality indicators. Therefore, a sound study conduct, as well as transparent reporting of methodological details and (interim) results, is key for the reliability of the resulting ‘product’. While some guidance had been proposed in the literature for enhancing the quality of Delphi studies, clear recommendations and a reporting standard for their publication had not been available. This motivated my co-authors and me to examine more systematically the use of the Delphi technique for the production of consensus, knowledge, and guidance on good clinical practice in palliative care.

“The Delphi technique reminds me of a chameleon; its design can be flexibly adapted to diverse research needs. “
(Photo courtesy Shobhan Tudu via Wikimedia Commons).

In our systematic review, we found substantial variation about how thoroughly studies were conducted and how transparently these were described in the published articles. In particular, the crucial moment between two Delphi rounds – what happens with the outcomes of the previous round and how these inform the preparation of the next survey round – was not always clearly set out. However, we also identified examples of good practice among the studies included in our review. These were encouraging models of how to design and present a Delphi study, even in view of restricted time, funding, or the word limits of scientific articles.

Our findings inspired us to propose a standard for Conducting and REporting of DElphi Studies (CREDES). We hope that the recommendations can serve as a guide for researchers undertaking and publishing Delphi studies, as well as for reviewers and journal editors when evaluating the quality of the study design and the transparency of reporting. It was a particular honour for my co-authors and me that our guidance was included in the reporting guideline database of the Equator Network.

References and Links

 

Read the full article in Palliative Medicine . . .

This post relates to a longer article, ‘Guidance on Conducting and REporting Delphi Studies (CREDES) in palliative care – recommendations based on a methodological systematic review’ by Saskia Jünger, Sheila Payne, Jenny Brine, Lukas Radbruch and Sarah Brearley, published in Palliative Medicine, Vol 31 (8): September 2017, p684-706. First published online: February 13, 2017; DOI: 10.1177/0269216317690685.

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

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Advance care planning: The EAPC white paper in a nutshell

Judith Rietjens and Ida Korfage are both Assistant Professors in the department of Public Health of Erasmus MC in Rotterdam, the Netherlands. Together, they chair the European Association for Palliative Care (EAPC) taskforce on advance care planning. In this blog post, they tell about the background and the content of their white paper published in the September issue of The Lancet Oncology.    

Judith Rietjens

After several years of hard work, the EAPC taskforce on advance care planning is proud to have published its white paper in The Lancet Oncology – read the summary here.

A lack of consensus regarding the definition of advance care planning (ACP), and a lack of practice recommendations that are applicable to a variety of cultural settings and personal values, have hindered the development of ACP programmes and the evaluation of ACP’s effectiveness. In our white paper, we have developed two consensus definitions: an extended definition to be used in, for instance, research and education of healthcare staff, and a brief definition for practical use. We also present 41 recommendations for ACP that can be used across a broad spectrum of patient populations, disease categories, and cultures.

To develop the definitions and the recommendations carefully, we conducted a formal consensus procedure. With our dedicated taskforce, we conducted a five-round Delphi study. Our multidisciplinary Delphi panel consisted of more than 100 experts from Europe, North America, and Australia.

Ida Korfage

The Box presents the extended version of our consensus definition of ACP. A central element is that ACP is considered to be a process that includes identifying values and defining goals and preferences for future medical treatment and care, and discussing these with family and healthcare providers. It may include the documentation of preferences or the appointment of a proxy decision-maker. These preferences should be regularly reviewed. Other key points: the scope of ACP is broader than the physical domain alone and ACP is not limited to specific patient groups. 

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

We have developed 41 recommendations for ACP, pertaining to several domains: elements, roles and tasks, timing, policy and regulation, and evaluation.

To give a few examples:

  • Recommendation 2: ACP should be adapted to the individual’s readiness to engage in the ACP process.
  • Recommendation 17: The initiation of ACP (i.e., the exploration of the individual’s experiences, knowledge, personal values, and concerns) can occur in healthcare settings or non-healthcare settings.
  • Recommendation 19: Individuals can engage in ACP at any stage of their life, but its content can be more targeted as their health condition worsens or as they age.
  • Recommendation 23: Healthcare organisations should develop potential triggers for the initiation of ACP including, but not limited to, age, degree of illness, and transitions in care.

Developing our white paper has been an exciting journey. Navigating the complex topic of advance care planning was inspiring, and sometimes a Sisyphean task. We hope our work is useful in clinical practice, ACP policy and research, and encourage its translation and further dissemination and implementation.

Links and Resources

 

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Impact of Volunteer Befrienders on Quality of Life, Loneliness and Social Support: A Wait List Randomised Trial (ELSA)

New series starts today: Posters from the 15th World Congress of the European Association for Palliative Care 

Poster presentations are an essential cornerstone of every EAPC Congress – this year in Madrid more than 900 posters were on display representing the scientific rigour and commitment of people involved in palliative care from across the world. If you were not able to attend the congress in Madrid, now’s the chance to see some of the posters close up and to enter into discussion with the contributors . . .

Professor Catherine Walshe from the International Observatory on End of Life Care at Lancaster University presents information about her poster presented with colleagues, Dr Nancy Preston, Prof Sheila Payne, Dr Guillermo Perez Algorta, Dr Steven Dodd, Nick Ockenden and Dr Matt Hill.

Prof Catherine Walshe

The research presented in our winning poster at the 15th EAPC World Congress in Madrid reported the results of one of the first trials examining the impact of volunteer ‘befrienders’ visiting schemes to people at the end of life. Volunteers are frequently integral to the way that palliative care is provided. Research has tended to focus on volunteer management and their perceptions of their role. There is less research investigating volunteers’ contribution to care, and in particular examining the difference that they make to people towards the end of their lives.

The team were delighted to win an award for this poster, but it feels particularly special for two reasons. First, because there was a focus on volunteers throughout the Madrid conference with the launch of the ‘Voice of Volunteering’ charter (Have you signed yet? You can read about it and sign here). Second, because it was the result of an effective research partnership with many palliative and end of life care services across England. We involved mostly research naïve staff who organised the volunteer-provided services, enabling them to develop real research skills and awareness working alongside us to run the trial.

As a trial, we wanted to see if we could find a significant difference to people on our outcomes of quality of life, loneliness or social support. The only area where we found this was in the physical quality of life, where the more time someone spent with their volunteer, the more difference this made. The difference was in making people’s decline in quality of life less rapid. Some people may be more likely to benefit from a volunteer befriending service than others, such as men and people with cancer. You can read more about the findings from the study in our open access paper here.

Some thoughts on designing posters . . .

The things we paid attention to when designing our poster were how to effectively convey a message visually, and the amount of information people may want about the project. Posters are a visual medium, and we tried to make the poster eye-catching with a layout that enhanced our core messages. We know that people have a lot of posters to read at a large conference such as the EAPC congress, so we focused on key issues with links to more information for people who are interested in the research. We also always include contact details and a picture of the presenting author so that people can find you if they want to speak about the project. Finally, we gave ourselves plenty of time for feedback on our poster design from colleagues.

As a team from the International Observatory on End of Life Care we also were awarded rosettes for top posters in a number of categories, showing the strength of our work, but also how time spent reviewing abstracts, posters and presentations is time well spent.

Links

10th EAPC World Research Congress, Bern, Switzerland – 24 to 26 May 2018. Submit your abstract now (closing date 15 October 2017.

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We always needed a doctor to sit down and talk to us: The growing acceptance of palliative care in the United Arab Emirates

Dr Alia Alawneh, Palliative Medicine Consultant at Tawam Hospital, Al Ain, United Arab Emirates. 

Dr Alia Alawneh

Towards the end of my palliative fellowship training in the US, I wondered if palliative care would be acceptable in Middle Eastern communities. Now, after more than five years practising palliative medicine in the Middle East, I can say that it is well received. Patients and families often say:

“We always needed a doctor to sit down and talk to us,” or “Your team gave us the best experience in the hospital, despite being at a very difficult phase,” complimenting the palliative care team on their thorough and compassionate nursing care, psychological and spiritual support, and holistic approach.

More and more hospitals are nowadays recognizing palliative care in the United Arab Emirates (UAE). The first comprehensive palliative team was founded in 2007 in Tawam Hospital in Al Ain, Abu Dhabi, as part of the oncology department. A specialist palliative unit was designated with a capacity of six beds, later expanding to 10 beds. The multidisciplinary team consists of three palliative medicine physicians, palliative care trained nurses, social workers, a psychologist, clinical pharmacist and a spiritual advisor who provide both outpatient and inpatient care. As part of an integrated oncology-palliative service, palliative care is available to patients receiving active cancer therapy. During the past five years, the palliative team has seen 1,082 outpatients and had 1,129 admissions. Palliative services are growing across the country for both adult and paediatric populations but according to the Global Atlas of Palliative Care at the End of Life, the UAE is still at the isolated provision stage.1

The palliative care team at Tawam Hospital celebrating the sixth anniversary of the palliative care unit. (Alia is on the left, in the front row)

In the UAE, opioids are available in the injectable, oral, sublingual and topical formulations, including morphine, hydromorphone, oxycodone, fentanyl and methadone. As in nearby countries, consumption levels for opioid analgesics used for the treatment of pain increased significantly from 2000 to 2009, with a more pronounced increase between 2007 and 2009.2

There is increasing awareness of the importance of palliative care in the UAE. The Emirates Oncology Conference, a national conference organised annually by the oncology department at Tawam Hospital, dedicates a complete session to palliative care. Discussion is currently under way to include principles of palliative care in the medical school curriculum. Moreover, this relatively new specialty has been the focus in local conferences and in the local media.

Our challenges are to expand services nationally enabling access for patients who live in small cities and to provide palliative care for both malignant and non-malignant conditions. Despite increased recognition by hospital administration, palliative care must also be recognized at healthcare policymakers’ level.

References

  1. Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manage. June 2013; 45(6): 1094-1106.
  1. Report of the International Narcotics Control Board on the Availability of Internationally Controlled Drugs: Ensuring Adequate Access for Medical and Scientific Purposes. (Accessed August 2017).

Further reading
Osman H, Rihan A, Garralda E, Rhee JY, Pons JJ, de Lima L, et al. Atlas of Palliative Care in the Eastern Mediterranean Region. Houston: IAHPC Press; 2017. You can download a copy from the website of the Instituto Cultura y Sociedad Universidad de Navarra (ICS).

Read more about Palliative Care in North Africa and the Middle East on the EAPC Blog.

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