Nancy Preston
I am a Professor of Palliative Care and Co-Director at the International Observatory on End of Life Care, Lancaster University. I conduct research into palliative care & teach on online PhD Programmes
Location Lancaster University
Activity
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Nancy Preston made a comment
Thanks to those of you who have joined the course this week and begun sharing your thoughts and comments on the material so far. It is already clear that there is a wealth of experience among you, and we hope you have found this introductory week useful. There has been some comment on the inequity in access to palliative care services – particularly for those...
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Nancy Preston made a comment
Welcome everyone to this new facilitated run of the course. We look forward to getting to know you over the coming weeks.
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Thanks Kathy. Really helpful to suggest that there are other members of the multi-disciplinary team who might have a different and equally valuable input. Mental health assessment can be overlooked in some cases so also a helpful consideration. There will be country differences though as to what and who is available though.
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Nancy Preston made a comment
Thank you for working through the second week of this course. It has been really good to learn about your experiences with the use of sedation and the ethical issues that can arise in this context. It is always fascinating to see how palliative care practices differ around the world and how cultural factors influence what a good death means to people. The...
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Nancy Preston replied to Sarah Travers
I am glad you think so. Some parts of the ambulance service have considered using the video with families as she explains this so well. We made the video openly available as part of a course on advance care planning under the section on responding in an emergency situation https://www.acpsupport.co.uk/staff-training/unit6/
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Nancy Preston replied to Georgia Dawson
We also have a free course with a section on emergency care https://www.acpsupport.co.uk/
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Thanks Katie - the term sedation does bring up concerns depending upon your country and background. As we move into the results of the EU study we will explore both its meaning and safe use in more detail.
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Nancy Preston made a comment
Many thanks for introducing yourselves. We have a people from a range of backgrounds and countries which always makes a course fascinating to hear each others perspectives.
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Nancy Preston made a comment
I hope all goes well in your plans and please feeel free to let us know about any developments you make in your practice or even in the care you receive as a result of the course.
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Nancy Preston replied to Catherine H
It's a distance learning course so all online except three mandatory trips to the UK for 1 week in the first three years. Feel free to browse the web pages and contact the team. We have students from all over the world.
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I absolutely agree and it it is one of the findings I have tried to promote in other settings.
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Here is a link to a 24 hour help line used in one part of the UK which has been very well received: http://www.airedale-trust.nhs.uk/yourhealth/services-and-support/gold-line/
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Nancy Preston replied to Rokaya Ginwalla
This is a really interesting point. In many countries we don't have individual autonomy like in the many Northern European Countries but relational autonomy. This is where autonomy is shared with the family who often make the decisions as to what a patient is told but with the best interests of the patient at heart. We are currently doing a study about advance...
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When we visited this seemed like such a good system. The main challenge was offering care to patients and families without cancer.
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Nancy Preston made a comment
In week three we specifically look at the role of the GP based upon our research findings. As some have indicated lack of resources in the UK is an issue. Money is a huge issue and in the UK heavily supported by the local community.
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Nancy Preston made a comment
We are currently running a trial on Advance Care Planning and will hopefully report results next year. here is the protocol paper https://bmccancer.biomedcentral.com/articles/10.1186/s12885-016-2298-x and links to the website https://www.action-acp.eu/
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Nancy Preston made a comment
I think there are real differences in how pallaitive is interpreted internationally and is sometimes seen the same as euthanasia in some countries. We need a public health campaign to explain what it is.
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Nancy Preston made a comment
Some intetresting perpectives here. In some countries it is just starting and hopefully they can learn from some of the mistakes already made. The UK is relatively compact compared to other countries where the role of volunteers is often essential just ebcause of the scale/size. However, there are less and less volunteers but in end of life care people still...
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Nancy Preston made a comment
At the end of the course there are a set of recommendations about how to get more integrated palliative care which yu can rate. It will be great if as many of you as possible can do this activity so these decisions are informed by a broad perspective.
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Nancy Preston made a comment
As everyone needs access to palliative care we all need exposure to education about it. By enhancing the knowledge of generalists most people will have an impact. The specialist then can deal with more complex cases. In the UK this is increasingly the model for managing non-malignant condictions.
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Nancy Preston made a comment
Indeed the Life Before Death Video gets the point across extremely effectively. There are a whole series of them. Our ATOME project went someway to try and improve legislation in Europe but a huge world wide issue still.
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Nancy Preston made a comment
Welcome to all our latest joiners. Whilst the MOOC will predominsntly speak about nurses and doctors experiences in the best practice videos we hear from other including volunteers and an occupational therapist.
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Nancy Preston made a comment
It was interesting speaking to Johan about the legislation. I really think this helps to underpin palliative care in Belgium. In the UK we just have guidance such as the National End of Life Strategy which has been updated https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/136431/End_of_life_strategy.pdf .
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Nancy Preston made a comment
I am interested in your comments about the negative connotations of palliative. I experience the same especially when I was in clinical practice. Even now when people ask me what I lecture in it usually stops the conversation. We need a better understanding of what palliative care is. Later in the course we look at the terminology we use.
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Nancy Preston made a comment
Welcome to the course. It is intereting to see some people with intersted in dementia too. Whilst this study didn't look at this specificially we do have another study trying to improve care in advance dementia in care homes using an intervention called Namaste http://www.namastetrial.org.uk/. Also just to flag that the MOOC is focussed on developing an...
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Nancy Preston replied to Kafunyi Mwamba
We have something similar in the UK called Soul Midwives
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Yes the role of the carer is really important. It wasn't the focus of our study but Prof Gunn Grande works in this area and has developed a carer assessment tool to assess their needs. here is a link to one of their studies http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0123012.
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Yes social support can be crucial. I gave a link to the befriending service we evaluated which people really felt helped https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0746-8
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Yes the term Macmillan is confusing as these roles often involve funding from Macmillan for the first 5 years but then the local community trust or hospice funds the role. Regardless of funding they are part of the primary care team and work with the GP. As specialist palliative care experts the GP may often defer to their knowledge as GPs are generalists in...
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Yes the role of the carer is really important. It wasn't the focus of our study but Prof Gunn Grande works in this area and has developed a carer assessment tool to assess their needs. here is a link to one of their studies http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0123012.
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Nancy Preston made a comment
We evaluated the role of volunteers in a befriending role and found they were well received. Here is a link to a paper about it for those who are interested: https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0746-8
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A few people have asked about the funding of services in Belgium. They largely have an insurance based system.
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Nancy Preston replied to Carol Seward
Palliative care can be given along side any treatment really including chronic care but also cancer care that leads to cure. It can sometimes be called supportive care which helps show it isn't just about terminal care. So yes some patients would be cured. Palliative care offer certain symptoms control that anyone can access such as pain control and...
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I think they mainly provide policy documents and guidance. However, the produced the Prague Charter which stated palliative care is a human right. Sometimes these statements are used to try and change national policy.
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Yes this is a good point. The service we show called Hospice at Home at the end of week one is in a rural setting and they use a lot of volunteers and go to the patients own home. In countries like Australia rural means a huge area and once again they use volunteers heavily. I don't think there are easy answers. A place that really relies on volunteers is...
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Nancy Preston replied to Lee Dudley
The study by Temel in the US looked at early integration of palliative care and they explained it could support patients. The worry was lack of hope but not only did this not happen but patients survived longer than those who didn't get it early on. Sometimes the words supportive care is used which I think can be helpful. Here is a youtube video link about...
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This is an interesting discussion. A team at Lancaster looked at the use of metaphors and noted that during treatment they are largely violence based ie fight cancer and at end of life more a journey such as passed away. I am not sure if any is openly available but here is a link : http://spcare.bmj.com/content/7/1/60. I think also as we get near to death...
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Nancy Preston replied to George Dellinger
The first week is more about national guidelines and policies. In our research we interviewed patients and their carers over three months and we report these findings in week three.
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Nancy Preston replied to Anna Kranz
You make an interesting point especially as palliative care largely developed from religious orders. There are certainly trials in the UK about cannabis - here is a link to one http://www.nhs.uk/conditions/clinical-trials/pages/clinical-trial-details.aspx?TrialId=NCT00674609&Condition=Cannabis&pn=1&Rec=0&CT=0
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Nancy Preston replied to Anna Kranz
Yes education of staff is really important and something the EAPC try to address. In many countries there is virtually no palliative care education available especially for nurses - the UK has much more. Also in the UK the National End of Life strategy recognises that most care at the end of life will be given by non-palliative care specialists and they also...
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I think you highlight a challenge of palliative care. I guess the key theme is reducing suffering be it physical, psychological or existential. Not an easy balance always for patients, families and health care workers.
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Nancy Preston replied to Devotha Kovaga
Unfortunately we can't really comment on clinical issues here
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Nancy Preston replied to hazel macmillan
Hi Hazel
You might find this paper interesting written from our department who are doing research on prisons: http://eprints.lancs.ac.uk/78305/1/Article_for_the_Prison_Service_Journal_V2.pdf
Nancy -
As you say even though palliative care in the UK is world leading it still has a long way to go. One way forward some suggest is use of advance care plans. We are currently running a study to look at this which helps direct medical practitioners. This in many ways takes a change in society to have the conversations and health care workers to be trained in...
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There were considerable differences across countries in availability of drugs and legislation. How the services ran in some ways didn't differ too much once a patient was in front of you. Similar assessments were made and the focus was always on how could the palliative care service help. Given the differences it was surprising how many similarities there were...
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Nancy Preston replied to Mandi Brading
I have added a link to the EAPC Paediatric palliative care paper you might find interesting http://www.eapcnet.eu/LinkClick.aspx?fileticket=6elzOURzUAY%3d&tabid=1432
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Gracias por estas palabras-espero que hayan encontrado la versión española del libro útil
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Nancy Preston made a comment
We mainly concentrated on the bigger patient groups with cancer, COPD and heart failure but obviously palliative care is for all. Here are some links to guidance from the European Association for Palliative Care on less represented groups. I have also included a paper on paediatric palliative care which is growing.
I would recommend the EAPC as a very...
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It's difficult to know what is enough but in general no country has enough. The UK is building less hospices but developing more home based services - if you watch the example from the UK on Hospice at Home this shows this at the end of the week.
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Nancy Preston made a comment
If you look at section 1.12 I have added some resources about palliative care development in the Eastern Mediterranean and Africa which you will find interesting as you can imagine a very different picture.
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Nancy Preston made a comment
The role of assisted deaths in palliative care is controversial and we won't resolve it here. Whilst most palliative care international societies are against it's involvement but this isn't the case in for example Belgium and the Netherlands. Here is a paper on this http://www.eapcnet.eu/LinkClick.aspx?fileticket=28Vb6OIn9SQ%3d.
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Nancy Preston made a comment
Hi All
There seemed to be a problem with the packet wall but hopefully fixed now. It works best on a PC though.
Nancy -
Nancy Preston replied to Nancy Preston
We think there was a problem with the packet but hopefully you can see and upload pictures now
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Nancy Preston made a comment
It is very interesting to see where palliative care takes place and in most of the world care at the end of life is at home and there is huge variation in how we live.
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Nancy Preston made a comment
Welcome to all of you. I am a nurse but obviously now work mainly in education and research. It is great to have people from all over the world on the course which hopefully you will all find interesting. Look out for links to free resources too.
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Nancy Preston made a comment
For anyone wanting a Spanish version of the book accompanying the course this is now available on the InSup-C website or follow this link http://www.insup-c.eu/IntegratedPalliativeCare2016-es.pdf
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Nancy Preston made a comment
We have just finished a study evaluating the experience of a befriending service by volunteers which Dr Catherine Walshe is presenting at the Hospice UK Conference. Hopefully the paper will be published soon (currently out for review) but here is the published protocol if you are interested...
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Nancy Preston made a comment
We had hoped to include a general comments information but feel free to add comments about your ranking here which we can take into consideration.
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Nancy Preston made a comment
Just to thank everyone once again. It is amazing to get such immediate feedback on our research and from the people in the palliative care community both those receiving it and offering it. Just reading your comments has given us a lot of food for thought which will help us as we conduct more research in the future.
We wish you well in your future studies...
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It was great to see a heart failure service which was so well established. This was in part recognising the needs of the specialists to support patients with their different expertise. Maybe the future for hospice care is more of this outreach to support other specialists rather than everyone coming to palliative care? Some great examples in the UK of nurses...
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Nancy Preston made a comment
In countries similar to the UK we hold individual patient autonomy as the most important aspect and want honesty for our patients. However, in Southern Europe and most of the world relational autonomy is the norm where the family knows more than the patient and culturally this is acceptable. We can get a clash of cultures in the UK when people from other...
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Nancy Preston made a comment
The role of the GP is a tricky one and we were surprised at the situation in Hungary with doctors regular giving out personal phone numbers which whilst meant the patient got excellent support resulted in burn out for the doctors.
In the UK there were some examples of excellent integration but also times when the GP felt completely deskilled - trying to... -
Nancy Preston made a comment
How we share information about what is happening with each has been flagged here as particularly important. We are analysing this data separately to identify good practice but probably the best results were in relation to shared computer systems of which the Bradford example (this week) was the most comprehensive. Often these systems are outside the control of...
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Nancy Preston replied to Perdeep Rullay
Hi Perdeep
Could you let me know which paper you mean?
Many thanks
Nancy -
Nancy Preston replied to Stephanie Pritchard
You raise an important point about how researchers explain their findings in a meaningful way. This is often more difficult when we conduct research across languages as there is a certain level of translation back into English and the terms may make sense in principle but need more explanation in practice. The team are currently writing this paper so I will...
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Nancy Preston made a comment
I think the need for compassion and dignity are coming up quite a bit. Whilst governments may try and insist on this it is difficult. There is another Futurelearn course you might find helpful looking at this https://www.futurelearn.com/courses/compassionate-care
It started this week but still time to join. -
Nancy Preston made a comment
Here is a free resource about access to opioids across Europe from another European study http://eprints.lancs.ac.uk/82481/1/ATOME_Final_Report_dec2014.pdf
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In the UK we still often use end of life and this is meant to mean the last year of life which again is confusing and not something people comprehend and I would include healthcare professionals in that.
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Luckily we do - in week 3 if you watch the video from Bradford we interview a social worker. We only real came across them as part of the palliative care team in the UK and they often a lone worker. There seemed to be more physiotherapists though.
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Nancy Preston made a comment
One palliative care team replaced palliative with supportive and doubled the referrals. Helpful to introduce palliative care input earlier but as some have said are we being open? Interesting to know your thoughts.
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Nancy Preston made a comment
It's interesting that people like the taxonomy - we weren't sure how understandable it would be. We struggled to explain it so glad helpful for some. If you can think of an alternative name that would be interesting for us.
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I am glad people like this example. Some have wondered how it is funded and it is through an insurance based system. I think it helps that the coverage is so wide and the huge number of staff they employ.
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Nancy Preston made a comment
The world Health Organisation has recently come up with their own guidance on providing palliative care services which you can find here:
http://www.who.int/ncds/management/palliative-care/palliative_care_services/en/
As people have said it can be very difficult to know when to bring palliative care in and when can the team already caring for the...
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Nancy Preston made a comment
Welcome to our weekend joiners
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Nancy Preston made a comment
Quite a few of the people we interviewed mentioned training for nurses and doctors in particular but obviously training is supported or should be supported for anyone who may come into contact with patients including volunteers. The National End of Life Strategy supports training for everyone but in reality there is little systematic training for any group. Dr...
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Nancy Preston made a comment
Again paediatric palliative care is growing and relates to children with predominantly life limiting conditions but also life threatening. The European Association of Palliative Care has developed some core competencies in this area: http://www.eapcnet.eu/LinkClick.aspx?fileticket=6elzOURzUAY%3d&tabid=1432
There are also some blogs on this too:...
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Nancy Preston made a comment
Some people have mentioned palliative care and dementia. There are some initiatives happening. We start a large trial examining something called Namaste Care in advance dementia with some hospices and care homes are engaging with. This short video from St Joseph's hospice gives some idea of what it is...
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Nancy Preston made a comment
We have such a wide range of people on the course from every continent which is great. We realise that some people maybe looking for solutions to current healthcare situations and we would always recommend you speak to your own healthcare team in the first instance. Hopefully some of the information you gain from the course might be useful though. However, as...
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Nancy Preston made a comment
Some really interesting posts here. A few people have raised issues around early integration of palliative care. Jenifer Temel did a trial in the US about this with lung cancer patients. While the results might not transfer to every country setting it probably shows that too intensive treatment may actually shorten life. There is a video clip here where she...
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Nancy Preston made a comment
A couple of people have mentioned role of palliative care in intensive care - here is another open access paper about work trying to address it: http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-213
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Nancy Preston made a comment
Some people have mentioned lack of palliative care in dementia and other conditions. The European Association of Palliative Care (EAPC) has produced a White paper on this which you might find interesting: European Association for Palliative Care, EAPC > Themes > Clinical & Care > EAPC White Paper on Dementia.
They also have a task force on people with... -
Nancy Preston made a comment
We have added a few photos on the Padlet wall which might reflect some of these comments
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Nancy Preston replied to Zahra Ibnalshaikh
Thanks for your interest in the course. As you can see the course is primarily based upon research in COPD, Heart failure and Cancer but the principles remain the same. There are some exciting developments in intensive care – you may want to look at this http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-213
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Yes morphine availability is limited in so many countries which we will look at in a let clip
