Sheila Payne
I am Professor in Palliative and End of Life care, with specific research interests focussing on the role and experiences of family carers in supporting patients approaching the end of life.
Activity
-
Thanks Melanie for sharing your clinical experiences and insights. You raise important concerns about the difficulties in recognising and managing symptoms for people with dementia. I wonder if other learners have had similar experiences?
-
Sheila Payne replied to Agata Malenda
Welcome to everyone joining the course in the last few days. We will be available to offer mentorship and support. Please follow the course steps - looking at the videos and readings - then post your comments and queries.
-
Good to hear that you are finding the course worthwhile and interesting. You have highlighted the videos provided by Professor Carlos Centeno and Professor Johan Menten as especially helpful. Can you say more about why they were useful? Perhaps other learners also can highlight sessions that they found most inspiring?
-
Welcome to Week 2. Good to see that you are already sharing comments about your understandings of palliative care. During this week, there are some interesting clinical cases presented by clinicians across Europe. Hopefully they will help you address some of the dilemmas in delivering sedation.
-
Sheila Payne replied to Nancy Clavet
Welcome to the course Nancy Clavet - hope that you find the videos and reading interesting and relevant to your life goals. We are happy to help with any questions and look forward to seeing your comments.
-
Can you explain a bit more about how you might use sedation to control refractory symptoms in your setting?
-
Sheila Payne replied to Nancy Preston
Welcome to all participants joining our MOOC. The course will be facilitated by experienced researchers and clinicians over the next three weeks. Do post your comments and let us know how we can help you.
-
Hi Tania Thanks for these queries. Our MOOC on concerned with sedation near the end of life rather than at other periods in the disease trajectory so there needs to be a recognition that patient's are in the final phase of life. In response, to the second question, you might like to refer to the Glossary in the ebook which offers a definition of palliative...
-
Alejandra thank you for your feedback. We offer a range of research programmes in palliative care. Please contact me s.a.payne@lancaster.ac.uk
-
Sheila Payne made a comment
Thank you to everyone who has joined our course and especially to those who have contributed comments. We can learn so much from each other's experiences. We hope that you now know more about end of life care options, like palliative care, and understand how sedation can be used appropriately to relieve suffering when patient's have refractory symptoms. ...
-
Sheila Payne made a comment
Thanks to everyone for sharing different views and experiences on medical decision-making. I can see that in many places it appears that physicians take the lead in making decisions, although it looks like there is a role for nurses in planning care in some contexts. There are also differences in whether patients and or families are involved in shared...
-
In this video, Professor Radbruch explains why his team undertook a rigorous Delphi process to revise and update the European Association for Palliative Care Framework on Palliative Sedation. The content of selected recommendations are examined in more depth in the subsequent sessions. When you are watching and listening to the video, can you think about how...
-
Kathy are you writing about the use of sedation more generally or the use of sedation near the end of life? Please remember that this course is specifically about the role of palliative care and the use of sedation near the end of life. In week 3, we will be looking more carefully at revised European Association for Palliative Care framework in the use of...
-
Sheila Payne made a comment
In this video Professor Menten highlights the differences between sedation near the end of life with the intention to relieve distressing suffering and refractory symptoms, and euthanasia where the intention is to end life at the patient's request. It is important to understand the difference. Thank you for sharing your experiences on these topics from...
-
Excellent response Alejandra. I hope that addresses your concerns Kathy? It is always important to have good communication with patients and families, and to explore the concerns of nurses and all team members, to ensure that good end of life care is delivered to relieve suffering.
-
@KathyChan while I acknowledge that you have had some difficult personal experiences, I think it is important that I clarify for all learners that the Liverpool Care Pathway was withdrawn from use in UK NHS hospitals following an independent review report called 'More Care, Less Pathway' in 2013 - you can read the report here...
-
Sheila Payne replied to Kathy Chan
Kathy I am sorry to hear about your difficult and distressing experiences. Providing care to your parents must have been challenging. I need to explain to other learners that the Liverpool Care pathway has been withdrawn from use in NHS hospitals in the UK because there were problems in its implementation. You have highlighted the importance of good...
-
In this video Dr Csikos who working in Hungary tells us about treating a patient with light intermittent sedation to reduce the suffering and distress of symptoms. Have you used this type of approach to manage difficult symptoms near the end of life in your setting? If so, can you share your experiences with other learners? What worked well, or not so well?...
-
Hi Tania Good to see you participating on this course. Within this course refractory symptoms refer to symptoms that cannot be adequately managed by conventional best practice interventions including pharmacological and non-pharmacological treatments, or these treatments are not effective within an acceptable time period for the patient. There is more...
-
Sheila Payne made a comment
Thank you for working through the first week of the course. It has been wonderful to learn more about the diversity of experiences and challenges that you are facing in your comments. There are various themes that I can start to see emerging in the comments including the importance of compassionate communication with patients and families, and the implication...
-
Sheila Payne replied to Bruno Baako
Well done for your careful reading of this paper. I agree with you that these two points appear to be the same. Can I suggest that you contact the corresponding author to query this? Alternatively, you can contact the journal editor to point out this discrepancy. I hope that the course is stimulating and enlightening.
-
Sheila Payne replied to nick low
The concept of quality of life is important and has been widely researched. Do you think it means the same thing to everyone? Perhaps we can share our views on what quality of life means in the context of end-of-life care?
-
Sheila Payne made a comment
Welcome to this course. I hope that you will take the time to watch each video carefully and read the associated texts. We have tried to make all the material accessible and easy to understand but do post questions and comments as you go through the course. It is a pleasure to learn more about your experiences in this important area.
-
Thanks - there are many helpful tools.
-
Sheila Payne made a comment
For more information about the PACE project see:
https://www.endoflifecare.be/en/pace-eu-fp7
The PACE Steps to Success Programme information pack and resources are available free of charge at (in English, Finnish, Flemish, Polish, Italian, Dutch, and French):
https://www.eapcnet.eu/eapc-groups/reference/aging-and-palliative-care/
-
Sheila Payne made a comment
Many thanks to everyone who has completed this MOOC. On behalf of the education team, Yakubu, Bader and myself, it has been a pleasure working with you over the last three weeks. Although we have focused on the mechanisms by which health and social care professionals and care workers can facilitate greater uptake of palliative care among older people living...
-
Sheila Payne replied to Susan Rowlands
Susan thank you for sharing your experiences of being with dying residents especially in the context of COVID-19 when family members can not visit. It would be interesting to hear the experiences of other participants on this MOOC, how has the pandemic impacted upon the care of dying people in your setting?
-
Good to hear your account and suggestions for improving recognition of older people in pain. How do you help others in your team to recognise when a person might be in pain?
-
It sounds like you are aware of the signs that a resident is dying. How do you record these observations and share them with other members of the team?
-
Sheila Payne made a comment
Good to see all your comments that link to the various sessions this week. PACE was a large international project and I want to acknowledge all the work done by partners across Europe in both the research and in preparing this MOOC. I found the discussion about definitions of palliative and end of life care very interesting and it helps to see how you are...
-
One way to deal with these questions is to ask the person who is ill what matters most to them and what their preferences for care and place of care are. In some countries, this is called Advance Care Planning. Do you use this type of planning in your setting?
-
Well done Stella - very good understanding of the aims of palliative care.
-
Sheila Payne made a comment
Palliative care in care homes and nursing homes needs to take account of the needs of frail older people, many of whom have multiple co-morbidities. Do you think it is more difficult to recognise dying in older people?
-
Sheila Payne replied to Naomi Cheung
Of course, all professional groups make important contributions to the care of older people near the end of life.
-
Sheila Payne made a comment
Good to see so many people active on the course. We hope that you are enjoying not only the course content but the opportunity to interact and learn from each other.
-
Sheila Payne made a comment
Welcome to this MOOC. I am one of the Lead Educators along with Yakubu. It was been my pleasure to be involved in palliative care research for many years. Working to improve the evidence-base for caring of older people and their families through the PACE project and other work has been a challenge but very enjoyable. I hope that you will learn from both...
-
Sheila Payne made a comment
Thank you to everyone for completing the course. We hope that you have enjoyed learning more about palliative care and how it can be implemented in care and nursing homes to improve the experiences of older people the final phase of life. The course has been running in difficult and challenging times as the world faces a pandemic of COVID-19. Many of you...
-
good to hear your experience of pain management include a range of strategies
-
Thank you Julia for highlighting the important role played by occupational therapists in care for older people living in nursing and care homes. Helpful to know from everyone if they have occupational therapists in their nursing home staff?
-
Linda - I hope my explanation above might be helpful. If you want to know more about how the PACE Steps to Success programme was developed please see https://link.springer.com/article/10.1186/s12913-019-4587-y
-
Cristina - you raise an important point about subjectivity here. The PACE Steps to Success programme acknowledges that staff working in care and nursing homes are likely to know their residents very well and in some homes, there are already tools in place to measure physical condition. The idea of the 'mapping tool' is to enable all staff at a...
-
Sheila Payne replied to Sheila Payne
In the context of our PACE cluster randomised control trial you are right that one of the two main outcomes, nurse rated improvement in symptoms in the last week of life, there was no significant difference. However, there may be reasons for this including:
1. the outcome measure was not appropriate - it should have been rated by family members
2. there was... -
Sheila Payne replied to Emma Ohenewaa Adu-Gyamfi
We are not yet aware of any African countries that have started to use the PACE Steps to Success programme. However, we know that it has been translated into Japanese and preliminary work has been done on implementing it there. We welcome any African countries to share their experiences of using it in the future.
-
Sheila Payne made a comment
Good to see so much interest in the PACE Steps to Success programme. You might be interested to read the main trial outcome paper https://www.axxon.be/ckfinder/userfiles/files/abcig/5/files/jamainternal_van_den_block_2019_oi_190092.pdf
-
Sheila Payne replied to Julie Culham
Julie I agree with you that ideally a facilitator needs to have knowledge about palliative care and the PACE Steps programme but I also think they need an understanding of the care or nursing home context. So altogether a very special set of skills combined with teaching ability and enough enthusiasm to motivate people to change their practice.
-
Angela I have asked your question to Professor Lieve Van den Block this is her response:
Differences between countries in terms of people living in nursing homes are usually related to the organization of the health care system. Countries with more nursing home beds have more people living there.... countries such as Italy with low number of beds, have more... -
Sheila Payne made a comment
Thank you for a great start to the course and for participating in such a lively way. During this week, we have learnt about what palliative care means in the context of care and nursing homes. We have also started to think about different types of care home organisation as explained by Katherine Froggatt. Hopefully you will have reflected on what types of...
-
Sheila Payne replied to Kathy Chan
Kathy it sounds like you are from the UK. However, not all European countries have the same regulatory framework for the care and nursing home section.
-
Sheila Payne replied to Päivi Sinisalo
Good point, anyone from Turkey like to help us understand why?
-
You are right, currently we do not have a Swedish translation of the PACE information pack and tools, but we would be very happy if anyone would like to produce one.
-
I am not sure that these sentences refer to raising more money from people who are dying or bereaved. In many countries, hospice and palliative care services are free at the point of delivery. My interpretation of these sentences are that governments will increasingly need to fund the clinical aspects of specialist palliative care which deals with people...
-
Dementia tends to be more common in late old age, and women normally live longer than men.
-
In most countries in Europe, there are more older people then men living in care and nursing homes, because they tend to live longer than men, they are also more likely to have dementia and finally older women tend to be poorer.
-
I am not sure if I can answer that question. Perhaps you could contact Professor Lieve Van den Block Lieve.van.den.block@vub.be who led the PACE study?
-
David you have raised a good question. In most countries there are no specific policies about palliative care in nursing homes. Do you think such policies would be helpful?
-
Good point Andy - in the UK there are a number of supported environments where older people may live. They were not included in the EAPC White paper survey so I don't have information on what specific end of life care needs people living there have.
-
Sheila Payne made a comment
So interesting to learn more about the different types of care or nursing homes across the world. Perhaps also important to think about their size (how many beds they have) and how they are funded. In the PACE study, we found big differences even within Europe.
-
Sheila Payne made a comment
Very interesting discussion comments from around the world showing how cultures and societies are changing in respect of how and where older people live and are cared for. What kind of social and economic polices are needed to help individuals and families manage these changes?
-
Sheila Payne made a comment
You are right to highlight that the PACE Steps to Success programme needs to be adopted by everyone in a care home. It needs to support of a senior person like the Manager or Director but it also needs all staff to be engaged in improving palliative care for older people.
-
Sheila Payne made a comment
Wonderful to hear all your feedback on both the overall course but especially the specific Steps. It looks like Step 6 which suggests a structured way to hold a de-briefing meeting with all staff following the death of a resident was regarded as very useful and novel by many students. We hope that you will try to implement this type of meeting in your care...
-
Sheila Payne replied to anne cross
Anne I hope that you will consider registering for your PhD at Lancaster University. Do get in touch if you want more information on the options available.
-
Sheila Payne made a comment
We are pleased to hear that you enjoyed the course. I hope that you will stay in touch and let us know what changes you have made in your working context.
-
Sheila Payne made a comment
Taking time to reflect on each older person's death can be a very helpful way for staff to recognise what went well and what improvements are needed in future. Doing this in a structured and supportive environment ensures that everyone has a chance to express their views. We are interested to hear how you talk about resident's deaths in your care home.
-
Sheila Payne made a comment
Glad to hear that you found the Polish care home staff experiences were helpful in thinking about pain assessment and management. We are interested in your reflections on how pain can be better assessed in care homes.
-
Sheila Payne made a comment
The concept of 'total pain' is central to palliative care. This is why all aspects of physical, psychological, social and spiritual suffering need to be assessed and support offered where it is most needed. We are interested in your experiences of assessing 'total pain' in older people.
-
Sheila Payne made a comment
You are right, it is always important to ask the older person directly about their experience of pain. Good to see that you are using a variety of other structured pain assessment scales and the PAINAD. We are interested in hearing more about how pain assessment are done in care homes across the world.
-
Sheila Payne made a comment
Good to hear that you are finding the course interesting. I can see that ACP has caused some people to think about how it can be used both in their work context and in their personal lives. Do let us know your experiences in the future.
-
Sheila Payne made a comment
Alexandra you are right - this is a good summary of the skills and knowledge required by facilitators. In addition, they need to have an understanding of the care home context and experience of working with older people. How do you think such people can be trained and supported in this role?
-
Sheila Payne made a comment
Glad to hear that the PACE Steps to Success Information Pack is useful. Remember it is also freely available in other languages including Finnish, Polish, Flemish, Italian, Dutch on the EAPC website.
-
Sheila Payne made a comment
Thanks for all the interesting comments and insights from across the world. 'White paper' is the term used by the European Association for Palliative Care position papers. They are published on many topics and are freely available on the EAPC website. Many of them are also translated into languages other than English.
