Sheila Payne

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?

  • 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.

  • 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?

  • 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

  • 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. ...

  • 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...

  • 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...

  • 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...

  • 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...

  • 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.

  • 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?

  • 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.

  • 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/

  • 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...

  • 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?

  • 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.

  • 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?

  • Of course, all professional groups make important contributions to the care of older people near the end of life.

  • 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.

  • 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...

  • 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...

  • 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...