Morphine use for cancer pain: A strong analgesic used only at the end-of-life? A qualitative study on attitudes and perceptions of morphine in patients with advanced cancer and their caregivers

WE’RE DELIGHTED TO PRESENT THIS MONTH’S ‘EDITOR’S CHOICE’ FROM PALLIATIVE MEDICINE, THE OFFICIAL RESEARCH JOURNAL OF THE EAPC

Each month, Professor Catherine Walshe, Editor-in-Chief of ‘Palliative Medicine’, chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer article in ‘Palliative Medicine’, or EAPC members can access a free copy from the EAPC website.


Dr Julia Fee Voon Ho, Senior Manager, Supportive & Palliative Care Service, Sunway Medical Centre, Malaysia, gives the background to her longer article selected as Editor’s Choice in the May issue of ‘Palliative Medicine’.

“If the doors of perception were cleansed everything would appear to man as it is, infinite.” William Blake 1757-1827. 

Dr Julia Fee Voon Ho.

Suboptimal control of cancer pain has been reported in 43 per cent of patients with advanced cancer.1Although the use of morphine has been well established in the treatment of cancer pain,statistics from the International Narcotics Control Board (INCB) for 2015-2017 reported significantly lowerconsumption of opioid analgesics in Asia, as compared to countries like America and the United Kingdom. The Access to Opioid Medication in Europe (ATOME) project further identified several barriers to the use of opioid analgesics, including fear of dependence, social stigma, economic burden, and insufficient knowledge among healthcare professionals on cancer pain management.

As a palliative care clinician, I frequently encounter patients who are reluctant to use morphine for cancer pain. In order to increase patients’ acceptance of morphine use, we will need to first understand what their concerns and fears surrounding morphine are, and the potential influence of their caregivers’ views.

We investigated the attitudes and perceptions about morphine use in cancer pain among our patients and their family caregivers using a qualitative approach. This study was conducted in Sunway Medical Centre, a tertiary private hospital in Malaysia. We thematically analysed the data obtained through semi-structured interviews of patients with advanced cancer and their family caregivers. Most participants in both groups thought morphine was a strong analgesic that was effective in reducing suffering and pain. However, concerns with morphine dependence, tolerance and side effects were prevalent. Many participants further associated morphine use with terminal stage of illness and hopelessness. Interestingly, despite these negative perceptions of morphine, most patient and caregiver participants were still open to the use of morphine to achieve optimal control of cancer pain. This was observed to be largely due to prioritizing the need to reduce suffering and achieve comfort. There was also an emphasis on placing their trust in their physicians to act in their best interest.

“Morphine in my impression is… it’s always equal to death. It’s [for] the terminally ill patients that have no more treatment, and it is used for them just to reduce their pain… and they will be given morphine just for the last few days of their lives… It’s like life is ending and the treatment is not effective anymore. So, you have no choice but to take morphine to control the pain.” (Patient Participant P5).

“If he is really in a lot of pain but is unable to sleep, then I feel that I will let him try it… Because I already had the impression that morphine is a drug, so I wonder if after he has been injected with it, will he become addicted? If he is ill, I don’t have a choice. If it makes him more comfortable, then I will continue to give it to him.” (Family Participant F16).

Findings from this study highlighted the multi-dimensional concerns and misperceptions about morphine use in cancer pain and its impact on participants’ acceptance of morphine. It also demonstrated the key role healthcare professionals play in educating our cancer patients and caregivers so as to improve compliance to opioid analgesics. Targeted education for healthcare professionals on cancer pain management could help to reduce barriers related to prescribing and administering opioid analgesics. Addressing these misperceptions and concerns in our clinical consultations might lead to more effective discussions and better patient adherence to opioid analgesics. Programmes to increase public awareness on the use of opioid analgesics for cancer pain might also help to reduce the stigma and misconceptions associated with its use.

We are grateful to all our participants for sharing their thoughts and opinions. I would also like to acknowledge the contributions of Prof Seng Beng Tan, Dr Hayati Yaakup, Dr Grace Low, Dr Lye Mun Tho and SN Siew Lih Wong in this rewarding research journey.

References

  1. Deandrea S, Montanari M, Moja L, et al. Prevalence of undertreatment in cancer pain. A review of published literature. Ann Oncol 2008; 19 (12): 1985-91.
  2. Caraceni A, Hanks G, Kaasa S, et al. European Palliative Care Research Collaborative (EPCRC); European Association for Palliative Care (EAPC). Use of opioid analgesics in the treatment of cancer pain: evidence-based recommendations from the EAPC. Lancet Oncol 2012; 13(2):e58-68.
  3. International Narcotics Control Board. Availability of narcotic drugs for medical use, https://www.incb.org/incb/en/narcotic-drugs/Availability/availability.html [accessed November 2019].
  4. Linge-Dahl L, Vranken M, Juenger S, North K, Scholten W, Payne Sand Radbruch L. Identificationof Challengesto the Availability and Accessibility of Opioids in Twelve European Countries: Conclusions from two ATOME Six-Country Workshops. J Palliat Med. 2015; 18(12): 1033-9.

Links

DOWNLOAD A FREE COPY OF THE FULL ARTICLE IN PALLIATIVE MEDICINE…
This post relates to the longer article, ‘Morphine use for cancer pain: a strong analgesic used only at the end-of-life? A qualitative study on attitudes and perceptions of morphine in patients with advanced cancer and their caregivers’ by Julia Fe Voon Ho, Hayati Yaakup, Grace Sook Hoon Low, Siew Lih Wong, Lye Mun Tho, Seng Beng Tan, published in Palliative Medicine 2020, 34 (5); pages: 619-629. Article first published online 27 February 2020. (https://doi.org/10.1177/0269216320904905)  Issue published: 1 May 2020.

EAPC MEMBERS – DOWNLOAD THIS, AND ALL OTHER ‘EDITOR’S CHOICE’ ARTICLES, FREE OF CHARGE
If you are currently an Individual or Associate EAPC Member you have full access to the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles and many other papers too. Just click here, enter your email address and membership password and choose from the list of journal articles.

How to join as an Individual/Associate Member, or to renew your membership

  • Click here to join as an Associate or Individual Member, or to renew membership. (Choose relevant national palliative care association if you wish to register free of charge as an Associate Member).
  • Now login with your email address and password and choose from the list of articles.

Note: You can apply to be an Associate Member FREE of charge provided that you are a member of your country’s national palliative care association, and that the association is an EAPC National Association member.

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Humanity until infinity…

At the end of last year, we published a series about palliative care in the context of humanitarian crises. Contributors looked at the implications of providing palliative care for migrants, refugees and people who have fled war-torn countries and places of conflict.

Today, we are joined by Dr Mhoira Leng, Dr Elizabeth Swain and Dr Alice Gray who have recently returned from a teaching assignment in Gaza where the ongoing siege is part of everyday life. 

Class of 2019 – Islamic University of Gaza (IUG) with their tutors.

We face each day examples of inhumanity and injustice in our news, social media or personal experience. We see leaders and factions use difference as a way to build power and attack minorities in many settings and throughout history. In humanitarian settings this can feel out of control.

How can the world allow this to happen? There seems no solution… it can feel hopeless. More people displaced and affected by man-made and natural or climate disasters than in any time in history. Can we even begin to imagine the suffering of people displaced by conflict within, or outwith, their own countries, or those affected by disaster or epidemics? What can we say or do in response?

I want you to travel with us to Gaza – a place of almost unimaginable trials where most aspects of life are subject to limitations, with severe restrictions of freedom to travel, or even live with dignity. Let us examine some of these experiences through the lens of values-based, compassionate individuals and communities.

Come and meet the mother of our articulate, helpful and extremely able teaching assistant Dr Abdelrahman. She is hosting our international faculty group in her home and serving us the most wonderful maqlouba – a traditional dish fragrant with spices, culture and love. As a former English teacher she communicates easily with us many of the significant daily struggles and losses but also the joys of family life in Gaza City. She is proud of all her children but gives her doctor son some specific advice every day when he leaves for study or work. “Remember, Abdel, you are human too and so treat all your patients as you would treat me.” Values instilled from home and rooted in faith that underpin practice.

Palliative care is at heart recognising and seeking a values-based, transformational approach to the relief of suffering, promotion of quality of life and restoring dignity. Exploring this together as an international faculty, in partnership with local leadership from Dr Khamis Elessi, Dr Fadel Naim, Dr Anwar Alsheikhalil and Dr Bettina Boucher from the Islamic University of Gaza (IUG), has been an opportunity for mutual understanding and development especially in teaching undergraduate medical students. Palliative care is now becoming represented in clinical services and very encouragingly being part of the IUG 8th Healthcare conference. This is the first time the topic of ‘Pain and Palliative Care’ has been included in such a conference.

Some of our Gaza students.

Let’s go to that classroom full of 132 bright, enthusiastic, energetic 4th-year medical students who are bubbling over with ideas and chatter and quickly reveal their intelligence, but also their compassion and sensitivity. We facilitated competency-based teaching through experiential learning in small groups using locally developed patient scenarios – including complex trauma following gunshot wounds – not a problem we see in palliative care in most settings. Background resources include use of the PalliKare app (developed in Bangalore and free for android or apple devices), relevant texts and flipped classrooms. The latter is a way of having the student read or listen to a prepared lecture in order to have knowledge and reflective content online

We also spent time at the bedside exploring how to put knowledge into practice and learning from patients and families. This included a young child with leukaemia, necessitating long periods away from her family while being treated outside Gaza, and  an elderly gentleman with chronic obstructive pulmonary disease (COPD) who bounced straight back into the respiratory ward after each discharge due to his panic and fear.

At the end of our week we discussed what we had learned together. As we saw the whiteboard fill up we felt a deep sense of humility and privilege to have the opportunity to interact with inspiring young people living in such difficult circumstances.

‘We need to care for patients with our hearts as well as our heads.’

‘Sometimes our patients just need someone to listen to them, express their fears and worries: good communication is a must.’

and, perhaps most strikingly,

‘Humanity until infinity’.

At first sight this feels like a superhero rallying call. But when we asked the students what values they had identified the list is striking: ‘love, joy, humility, justice, hope, empathy, compassion, team work, humanity, respect’.

Following last year’s Lancet Palestine Health Alliance conference we wrote a letter published in the Lancet. (Read the full letter here)

“To claim that palliative care alone could be the solution to the conflict in the Gaza Strip and other conflicts like it, which often seem like intractable political calamities, would be naïve and careless. Yet we do believe that the compassion and humanity intrinsic to palliative care affords it a powerful role in working towards conflict resolution.”

In the light of the current global shifts caused by the COVID-19 pandemic, please imagine how your life has changed after a few weeks of social isolation and lockdown. Now try to imagine life in Gaza after 11 years of a siege and now facing the same pandemic. Was there ever a more important time to sense our common humanity, see barriers come down across our world – physical and otherwise – and advocate for all to have the healthcare access and dignity they need and deserve.

So we come back to the opening questions. How do we live, think and act in the present reality of amazing opportunity yet such overwhelming suffering. Let’s take our rallying call from our Gaza students ‘Humanity until infinity…’

References

  1. PalliKare app – a palliative care app designed and made free by Karunashraya, Bangalore Hospice Trust (BHT) for doctors and nurses with limited knowledge of the subject. (Download from https://play.google.com/store/apps/details?id=org.karunashraya.pallikare&hl=en_GB)

Links and resources

Read more posts on the EAPC blog about:  Palliative Care in Humanitarian Crises and Coronavirus and the Palliative Care Response.

More about the authors
Dr Mhoira Leng is the Medical Director of Cairdeas International Palliative Care Trust and advisor for palliative care in Makerere University, Kampala, Uganda, and University of Edinburgh, Global Health Academy, UK. She has been visiting Gaza as part of a link with the Islamic University of Gaza for six years.

Dr Elizabeth Swain is a Trustee of Cairdeas International Palliative Care Trust with extensive experience of working in Albania and as a tutor for PRIME (Partnerships in International Medical Education). 

Dr Alice Gray previously worked with Cairdeas International Palliative Care Trust in Uganda and is now a hospice doctor in Birmingham.

 

Posted in Coronavirus and palliative care, EDUCATION & TRAINING, Palliative care in humanitarian crises | Tagged | 1 Comment

COVID-19 and palliative care: Scale up provision in every country – especially in primary care

Professor Scott A Murray (Scotland); Dr Sébastien Moine (France); Professor Yvonne Engels (the Netherlands); Deirdre Shanagher (Ireland) and Dr Maurizio Cancian (Italy) are Members of the European Association for Palliative Care (EAPC) Primary Care Reference Group executive committee. Here they explain how this is the very moment when the experiences, skills and resources of palliative care enthusiasts must come to the fore…

Clockwise from top row: Maurizio Cancian, Sébastien Moine, Scott Murray, Deirdre Shanagher and Yvonne Engels.

The Covid-19 pandemic is causing distressing deaths in terrible social isolation to tens of thousands. This is a ‘teachable moment’ for health and social care services in every land. A ‘teachable moment’ is the time at which learning a particular idea becomes possible or easiest. (Wikipedia) There is a compelling case. Palliative care services must be scaled up to help people live and die as well as humanly possible. Nations can learn from their experiences of lack of preparation with personal protective equipment (PPE) and diagnostic testing. As palliative care enthusiasts, we must speak out now so that our countries, and practices, can grasp this moment in history.

In 2019, a group of more than 25 general practitioners (GPs) and researchers from throughout Europe, all members of the EAPC Primary Care Reference Group, produced the EAPC Toolkit for integrating palliative care into primary care at national and clinical level. We also made an infographic and a 90-second video to help us advocate for changes in our countries. This toolkit is intensely relevant and gives us an evidence-based and tested structure to meet the COVID-19 challenge with palliative care.

The EAPC toolkit for the development of palliative care in primary care.

There are four ways to operationalise this public health approach.

  1.  Speak with national and local policy-makers

Explain that palliative care is necessary to prevent suffering and to support the dying, and that it must be available in the community to reach all people. Do this to gain their support to fast-forward the next three steps. (See our toolkit with the many relevant web links).

2.  Support education of health and social care staff

Enable them to gain the required skills, confidence and emotional support. The toolkit details recent initiatives. Also, the REDMAP guide for talking about planning care and dying (see video) has been adapted for the COVID-19 epidemic for telephone interviews with high-risk patients in the community, their family carers, care home residents and their relatives. Symptom control guidelines in the community are now available.

3.  Design a new way of working in primary care that is fit for purpose, in and outside the pandemic

An excellent evidence-based guide to telephone and video assessment of suspect cases of COVID-19 in 10 minutes is available, and also information on mobile messaging with patients. All people with an underlying health condition are at risk of dying with COVID-19. Practical guidance on identification and care planning are in the toolkit with links updated for COVID-19. Thus, care planning for at-risk people as well as COVID-19 patients can be done remotely, with home or care home visits as clinically needed. Summaries of care plans should be shared electronically with all other health services.

4. Ensure that essential medicines and equipment (including PPE) are available, and evidence-based interventions (testing, tracing and isolating cases) are deployed in all settings

Rules and regulations are being urgently changed to assist this in nursing care homes and residential care facilities where many deaths will happen. Pharmacies must stock medications to cope with a pandemic. Arranging, as far as is humanly possible, safety measures for relatives to be close to dying patients is essential.

There is a great danger, in the heat of the urgent focus on getting equipment and testing, that we will fail to plan to meet the great need for individual care planning and person-centred care that is a necessity around dying. Care planning for all at risk of getting COVID-19, and for those actually with COVID-19, is essential, as well as palliative care for the dying.

Now is the time to take primary palliative care forward. This is the hour. We are the people. We have the tools! Let’s go!


Links and resources (including specific guidelines produced in Africa and India for palliative care in the COVID pandemic)

 More about the authors…

Professor Scott A Murray is Emeritus Professor in Palliative Medicine University of Edinburgh, Primary Palliative Care Research Group, Scotland. Follow Scott on Twitter @scottamurrayed

Dr Sébastien Moine is a senior GP academic from University of Paris 13, Bobigny, France. Follow Sébastien on Twitter @s_moine

Professor Yvonne Engels is Professor of Sense of Meaning in Healthcare at Radboud University/Radboud University Medical Center, the Netherlands. Follow Yvonne on Twitter @y_engels

Deirdre Shanagher is National Development Manager (Palliative and End of Life Care) at the Irish Hospice Foundation, Dublin, Ireland. Follow Deirdre on Twitter: @deirdrefirst  

Dr Maurizio Cancian is a general practitioner in Conegliano, Treviso, Italy. He is a member of the Italian Society of General Medicine ‘Società Italiana di Medicina Generale’ (Frailty and Palliative Care) and the National Palliative Care Association ‘Società Italiana di Cure Palliative’.

Read more posts about Coronavirus and the Palliative Care Response on the EAPC blog. There are more to come…

 

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Stand by me: Honouring the courage and dedication of all caregivers in the time of coronavirus

Today (April 30), it’s the International Day of Jazz. We’re delighted to share with you a special recording from ‘The Palliators’, a band of Dutch people working professionally in palliative care as caregivers and researchers, and a volunteer.

Carlo Leget, Professor of Care Ethics at the University of Humanistic Studies in Utrecht, the Netherlands, and a member of the band, explains.

“Jazz has the power to make men forget their differences and come together… Jazz is the personification of transforming overwhelmingly negative circumstances into freedom, friendship, hope, and dignity.”  Quincy Jones at the First International Jazz Day in 2012 at the United Nations. 


The Palliators (Yvette van der Linden, Jeroen Hasselaar, Jet van Esch, Jan Kees van Duin, Rik Stoevelaar, Carlo Leget, Mary Verhoef and Marjon Oolbekkink) are a group of seven palliative care professionals and one ‘volunteer’ from all over the Netherlands. With a female nursing home physician on drums, a young and promising psychologist on lead guitar and a radiation oncologist as diva and lead singer, our repertoire consists of songs with a palliative twist. Like everyone else, a few weeks ago The Palliators were suddenly put on hold. Some of us were working with corona patients on a daily basis, others had to reorganise their teaching to an online format, and every one of us felt that a great source of joy had suddenly been taken away from us. It is a great privilege to be part of a band that combines a professional drive in palliative care with playing great music in an atmosphere of friendship and fun. But suddenly there was other work to do, our rehearsal studio closed down and all our concerts were cancelled.

Believing in the great power and consolidation of music, we decided to transform this situation of isolation into one of connection. And what song could better express the essence of palliative care and honour the courage and dedication of all caregivers than Ben E King’s classic song, ‘Stand by me’? During the weekend before Easter, we all filmed ourselves singing or playing our part in our separate homes, while listening to the original version of the song. We sent our videos to Sebastiaan, the son of our violinist Marjon, and a few days later this young man had made an amazing video.

The Palliators, left to right: Yvette van der Linden, Jeroen Hasselaar, Jet van Esch, Jan Kees van Duin, Rik Stoevelaar, Carlo Leget, Mary Verhoef, Marjon Oolbekkink.

Stand by me‘ is dedicated to all the people who are caring for other people in times of corona. It shows how we can be united and connected in times of separation and isolation. “Take care of each other” is the message in Dutch we put at the end of the video. The Palliators have great respect for everyone who is caring for the most vulnerable in our societies. We are there to honour and support you in hard times like these. We hope we can sing and play for you again in better times – like the 17th World Congress of the European Association for Palliative Care next year in Helsinki.

Links and resources

  • Coronavirus and the palliative care response: EAPC web page to source and share information, with links to publications and resources including World Health Organization resources, national guidelines, videos, scientific journal collections. Please email us if you have new or updated resources to share.

Read more posts about Coronavirus and the Palliative Care Response on the EAPC blog. Tomorrow, the executive committee of the EAPC Primary Care Reference Group  share latest resources and explain that now’s the time for the experiences and skills of palliative care enthusiasts to come to the fore…

Posted in Coronavirus and palliative care, PATIENT & FAMILY CARE, The Arts in palliative care | Tagged , | Leave a comment

What’s the role of palliative care and hospices in the COVID-19 pandemic? Evidence from a systematic review

Rachel Cripps, Simon Etkind, Anna Bone, Adejoke Oluyase, Mevhibe Hocaoglu, Katherine Sleeman and Irene Higginson, King’s College London, Cicely Saunders Institute, London, UK, share the evidence and explain how you can get involved in a new survey.

Clockwise: Katherine Sleeman, Rachel Cripps, Simon Etkind, Mevhibe Hocaoglu, Irene Higginson, Adejoke Oluyase and Anna Bone.

Palliative care and hospice teams are having to make rapid changes in how they deliver care in response to COVID-19. Sound evidence will help guide this response. To this end, we conducted a rapid review of existing evidence evidence on the role and response of palliative care and hospice teams to epidemic/pandemics such as COVID-19.

We included 10 studies from six countries, all but one outside of Europe. The evidence covered Ebola in West Africa, swine flu and SARS in Asia, with one paper reporting the early Italian experience with COVID-19. We drew out the findings and authors’ recommendations, presenting them according to Downar et al’s framework  for response to epidemics according to ‘systems’, ‘staff’, ‘space’ and ‘stuff’.

Systems

Pandemics necessitate review and update of clinical policies. In particular, hospital palliative care teams should provide protocols and training for non-specialist staff. Guidelines are required for specific settings, e.g. care homes. To improve communication and coordination, a key decision-maker should be identified, and protocols shared between settings.

Staff

Palliative care staff may need to be re-deployed between palliative care services. Voluntary services may be paused during pandemics, but their skills can still be harnessed, for example by providing psychosocial and bereavement support remotely. Chaplains and psychologists often have skills and experiences in palliative care, and can provide crucial support.

To increase resilience among healthcare professionals, camaraderie should be encouraged to reduce stressors, support staff working outside of their specialist areas and to promote team cohesion. Training in communication and bereavement support should be made available.

Space

Resources should be distributed between healthcare settings according to clinical need. Where new healthcare services emerge, they should include palliative care. Where possible staff should support virtual communication with family members. 

Stuff

There needs to be a list of prescribable medications for symptoms such as cough, fever, breathlessness, delirium, anxiety, agitation and pain. There should also be sufficient supply of medications and Personal Protective Equipment.

Understanding the available evidence will not necessarily make the COVID-19 pandemic any less challenging for palliative care. However, having a framework of actions may support palliative and hospice teams to take the best, evidence-based actions to respond, and maintain our crucial specialty in exceptional times.

To learn faster – collaborate…

One of the key findings from our review was that data is vital. The disease is new. We do not know enough about its effects, its symptoms or what treatments work. We recommend that services routinely collect data on: number of patients seen, symptoms, treatments, treatment effectiveness and outcomes. But we believe that more is needed. To learn faster we need to collaborate. For this reason, we are establishing a research collaboration between the Cicely Saunders Institute, the Wolfson Centre for Palliative Care, the International Observatory on End of Life Care, and others, linking with the European Association for Palliative Care.

Hospice and palliative care services survey – get involved…

We want to survey hospices and palliative care services about their response to COVID-19 and, and collect data about the symptoms and treatments used with patients. If you would like to get involved, please contact us at palliativecare@kcl.ac.uk or find more information here.

The rapid review on the role and response of palliative care and hospice services in epidemics and pandemics is available from the Journal of Pain and Symptom Management as a journal pre-proof.

Resources relating to Covid-19 and palliative care in humanitarian emergencies

 Read more posts about Coronavirus and the Palliative Care Response and Palliative Care in Humanitarian Crises on the EAPC blog. There are many more to come, including a follow-up to this post from Professor Catherine Walshe and Professor Nancy Preston of the International Observatory on End of Life Care.

 

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New ESMO recommendations for palliative and supportive care during the COVID-19 pandemic

Nathan I Cherny (Israel) Anna KL Reyners and Elisabeth DeVries (The Netherlands) unveil the latest guidelines from The European Society for Medical Oncology (ESMO) in respect of the pandemic.

Top row, clockwise: Nathan Cherny, Elisabeth DeVries and Anna KL Reyners.

The COVID pandemic has now caused almost 200,000 deaths, and sadly many more are still anticipated. This pandemic has generated enormous global healthcare challenges that in some places have proven overwhelming. To assist the global medical community, The European Society for Medical Oncology (ESMO) has harnessed the expertise and experience of its faculty to develope two important resources: ESMO Prioritised Practice Guidelines in cancer care and Emergency palliative care protocols for non-ventilated COVID-19 patients.

ESMO Prioritised practice guidelines in cancer care

To mitigate the negative effects of COVID-19 on care delivery, the oncology practice guidelines prioritise the various aspects of cancer care into three levels of priorities, namely: tier 1 (high priority intervention), 2 (medium priority) and 3 (low priority). Guidance is provided for individual disease settings and also for supportive and palliative care.

Emergency palliative care protocols for non-ventilated COVID-19 patients

The Emergency palliative care protocols for non-ventilated COVID-19 patients are presented in two versions: for inpatients and home care. They emphasise six underlying principles:

  • Patients have a right to relief of suffering at the end of life;
  • Application of simple protocols can provide relief in most situations;
  • COVID-19 can be a rapidly progressive disease and some patients will need very intensive symptom control urgently;
  • Expert consultative back up by palliative care service will be available 24/7;
  • Aim to optimise relief and minimise staff exposure and;
  • Sensitive and effective communication is a core element of care.

Each pathway lists essential medicines (and other important alternatives), and presents stepwise approaches to palliation of breathlessness, palliation of agitated delirium and palliative sedation for patients near death. Additionally, the inpatient guide provides pragmatic tips for communication with the patient and their family members.

These can be used either as freestanding documents, or they can be edited for local use with adjusted medication formulary to fit local resources and to add the names and contact details of local clinicians with palliative care expertise. Indeed, formulary customisation to emphasise locally available medicines and formulations will be epically important when using these pathways in countries with more limited access to medications.

A truly global effort

The Prioritised supportive and palliative guidelines and the Emergency palliative care protocols have been a multinational project involving the input of palliative care experts from more than 20 countries, many of whom have been seriously impacted by COVID-19, and most of whom are also members of the European Association for Palliative Care.

These resources are part of ESMO’s contribution to the major global mobilisation of resources and knowledge that is needed to confront this pandemic and the palliative care challenges it has generated. (1)

Reference

  1. Radbruch L, Knaul FM, de Lima L et al. The key role of palliative care in response to the COVID-19 tsunami of suffering. The Lancet April 22 2020 DOI:https://doi.org/10.1016/S0140-6736(20)30964-8.

Links to ESMO resources

More resources relating to Covid-19 and palliative care in humanitarian emergencies

Latest news will continue to be shared on the EAPC Twitter , Facebook, and LinkedIn
Join the conversation at #pallicovid

Read more posts about Coronavirus and the Palliative Care Response and Palliative Care in Humanitarian Crises on the EAPC blog. More are coming soon, including a post from the team at Cicely Saunders Institute, King’s College London. 

 

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What works?: Effective and evidence-based management of pain in people with advanced cancer

WE’RE DELIGHTED TO PRESENT THIS MONTH’S ‘EDITOR’S CHOICE’ FROM PALLIATIVE MEDICINE – THE OFFICIAL RESEARCH JOURNAL OF THE EAPC


Each month, Professor Catherine Walshe, Editor-in-Chief of ‘Palliative Medicine’, chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer article in Palliative Medicine or EAPC members can access a free copy from the EAPC website. 

Dr Emma Chapman, Senior Research Fellow in the Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, UK, gives the background to her longer article selected as Editor’s Choice in the April issue of ‘Palliative Medicine’ – and the journal’s first ever practice review…

Dr Emma Chapman (right) with Professor Mike Bennett, Director of  St Gemma’s Academic Unit of Palliative Care, who co-authored the longer article.

Pain is not well managed in more than half of patients with advanced cancer and is one of the symptoms that patients fear. When pain is poorly controlled this has the potential to negatively impact on the experience of the patient, their families and friends and also the staff who care for them.

The St Gemma’s Academic Unit of Palliative Care at the University of Leeds, UK, aims to improve care of those nearing the end of life through integrated research, teaching and clinical practice. We lead the RESOLVE research programme: “Improving health status and symptom experience for people living with advanced cancer”. A key aim of the programme is to provide support to enable clinical teams to better manage and improve the management of challenging symptoms including pain. At the start of this four-year research programme, funded by the charity Yorkshire Cancer Research, we set out to understand what approaches were currently being used and where difficulties arose. We collected qualitative data from interviews and focus groups with more than 60 healthcare staff who care for patients with advanced cancer in the UK. Staff were asked about how they managed symptoms, including pain, and what they saw were the barriers and facilitators to effective symptom control (manuscript in preparation). We did a ’stock take’ on what approaches were recommended by current guidelines and considered the state of the science of the evidence base to support these recommendations. This review forms the basis of our recent article “Evidence based and effective management of pain in patients with advanced cancer”  published in Palliative Medicine. A strength of this article was the multidisciplinary nature of our authorship team, which contained clinical academics, senior research fellows, a nurse consultant and researchers with physiotherapy and pharmacy backgrounds.

We used a scoping review methodology to examine international guidelines from the last five years that concerned management of pain in adults with advanced cancer. Based upon the weight of supporting evidence, ‘Do’ or ‘Do not’ recommendations were made for interventions commonly advocated by key guidelines. Approaches categorised as ‘Don’t Know’ were those where there was insufficient evidence to advocate their use in people with advanced cancer and further research is needed.

We concluded that an oral strong opioid remains the drug of choice for treating moderate or severe pain in patients with advanced cancer. Bisphosphonates and/or radiotherapy should also be used where needed for bone pain. Optimal management requires a tailored approach, support for self-management and regular review of treatment outcomes. Non-pharmacological approaches are likely to have a role. Despite its common use, oral paracetamol should not routinely be used for patients who are already taking a strong opioid for moderate to severe pain. Cannabis-based medicines are not recommended as there is evidence that they are not effective.

We intend that this practice review will provide a concise overview to enable evidence-based decision-making by clinicians. Perhaps it will prompt some reflection upon current, frequently used practices and the decision behind their choice. Indeed, preliminary findings from our qualitative study show that paracetamol is prescribed to patients already taking strong opioids due to patient preference and staff habit.

Further research is needed into whether non-steroidal anti-inflammatory drugs, anti-convulsants, anti-depressants, corticosteroids, some invasive anaesthetic techniques, acupuncture, massage and transcutaneous electrical nerve stimulation should be used. We have also highlighted that good quality research into non-pharmacological supportive treatments such as acupuncture, massage and music therapy is lacking, which is a barrier to their use. We suggest that research funders should support trials of these interventions, which are inexpensive, low risk and adaptable to many different care settings.

Some of the challenges of conducting and evaluating RCTs in palliative care such as heterogeneity in trial design and outcome measures may be best overcome by the development of large, collaborative, multi-centre trials. Although sufficient recruitment can be an issue, research suggests that many people with advanced cancer view taking part in a trial as a positive experience.2

Our practice review was confined to the management of pain in adults with advanced cancer. While we consider that much of the recommendations may be generalizable to pain in non-cancer conditions, we recognise there is also a need to appraise more specific evidence for treatment of non-cancer conditions in palliative care. 

References

  1. Breivik H, Cherny N, Collett B, de Conno F, Filbet M, Foubert AJ, Cohen R, Dow L. Cancer-related pain: a pan-European survey of prevalence, treatment, and patient attitudes. Ann Oncol. 2009 Aug; 20 (8): 1420-33
  1. Middlemiss T, Lloyd-Williams M, Laird BJ, Fallon MT. Symptom Control Trials in Patients With Advanced Cancer: A Qualitative Study. J Pain Symptom Manage. 2015 Nov; 50 (5): 642–649. e1.

Editor’s note: The EAPC would like to point out that multiple guidelines (including WHO, 2018) are described in the full-text article here.


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This post relates to the longer article,Practice review: Evidence-based and effective management of pain in patients with advanced cancer’ by Emma Chapman, Zoe Edwards, Jason W Boland, Matthew Maddocks, Lucy Fettes, Catherine Malia,  Matthew R Mulvey and Michael I Bennett, published in Palliative Medicine 202034 (4); pages: 444-453. Article first published online 24 January 2020: (https://doi.org/10.1177/0269216319896955)  Issue published: 1 April 2020.

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