I have written up notes from the group discussion with links to the documents etc we discussed, please let me know if I have missed anything.
Secondary Breast Cancer Nurse Forum – 03/05/2019
Discussing End of life preferences with patients
Chair : Sharon Colley – Secondary Breast Cancer Nurse Specialist – UHNM Staffordshire
Sharon opened the session by introducing thoughts around EOL discussions particularly with younger patients (under 50’s) who are having multiple lines of treatment aimed at prolonging life – how do we then introduce the concept of dying and preparations and preferences around end of life. Setting the scene with her own experiences about two particular patients in their 30’s who she had found it difficult to discuss this with because of various barriers, such as family acceptance of diagnosis and consultant focus on lines of treatment available, leading to a disjointed and scrambled end of life experience for the patients and their families.
Sharon introduce some thoughts and ideas from a paper Ngwenya et al (2017) ¹, firstly that although it is acknowledged that these kind of conversations are started as early as possible, in practice this does not happen due to reticence on both the patients, families and professional’s to engage in these difficult conversations whilst trying to retain hope and optimism. However that patients want professional to play an active role in these discussions and decisions due to their expertise.
The group were divided into five groups and asked to discuss how these conversations are addressed, when they are best addressed and what if any tools are utilised and this was fed back at the end of the session for group discussion.
Identified the dying to talk – discussion starter tool that Sharon had bought to the group and how this could be utilised and/or adapted to get patients to reflect and engage. http://dyingtotalk.org.au/wp-content/uploads/sites/2/dlm_uploads/2018/09/Discussion_-Starter_Web-1.p...
They also discussed the serious illness conversation guide that Catherine had kindly brought to the group discussion and the usefulness of this tool as a framework to plan or deal with patient initiated conversations about EOL planning.https://www.ariadnelabs.org/wp-content/uploads/sites/2/2015/08/Serious-Illness-Conversation-Guide-5....
The planning ahead booklet in the patient information pack was also widely used and explained to patients.
The importance of the what if…. Question and when to introduce this, eg. what if xxxx happens, how would you like this to be dealt with? And when to ask this?
Group consensus was not at diagnosis however there is no one standard time to start it has to be once you have got to know the patient and the family etc HNA is a good starting point for most although not all patients
They also advocated the introduction of hospice and palliative care services early as a means of support and living well with a clear definition to the patient what palliation means due to its connotations most often with the public as death and dying. This was felt to introduce the holistic and supportive therapies of the hospice prior to any need for symptom palliation and EOL care.
Asking the patient and their families/carers what their worries or concerns were at regular intervals from the outset of first meeting (HNA)
When introducing your role may be a good time to discuss how you can help with planning ahead and thinking about what if…..
The group also identified some of the barriers such as family members present who block these conversations and joint review with doctors who’s focus is lines of possible treatment without discussing what happens when no lines left and what the patient wants to happen. What are their goals and aims for treatment what are they willing to tolerate.
The difficulty for specialist nurses when we have to be the ones bringing up these difficult topics when others are focussed on treatment after treatment and not addressing that this patient is life limited. Difficult with newer treatments extending life and not knowing how long for….how and when do you prepare the patient?
Difficult with young children when you don’t know who will be looking after those children, if those discussions have been avoided early on prior to EOL.
When is the best time to introduce palliative care – again all agreed better at outset with a good clear definition to the patient etc. that this is care to help you live and live well until the point you need EOL care.
Introduced a project that is utilised in London “coordinate my care” this is an NHS clinical service that was launched in August 2010 to deliver integrated, coordinated and high quality medical care, built around each patients personal wishes. It is based around urgent care needs and is created jointly by the patient and their healthcare professional listing their wishes and care preferences. It includes practical information such as key contact, regular carers and clinicians but also personal preferences across a range of possible care circumstances such as EOL. Once completed the nurse or doctor will upload the care plan to the central system which only trained and legitimate care professionals have access to including ambulance control, 111 operators, GP’s, OOH’s services, hospitals, nursing/care homes, hospices and community nursing teams. With 24/7 access to the plan professionals can use it to guide their response to the situation in hand and take pressure of patients and relatives. https://www.coordinatemycare.co.uk/
Discussed the ReSPECT form which stands for Recommended Summary Plan for Emergency Care and Treatment. The ReSPECT process creates a personalised recommendation for your clinical care in emergency situations where you are not able to make decisions or express your wishes. The plan is created through conversations between you and your health professionals. The plan stays with you and should be available immediately to health professionals called to help you in an emergency, whether you are at home or being cared for elsewhere. Professionals such as ambulance crews, out-of-hours doctors, care home staff and hospital staff will be better able to make quick decisions about how best to help you if they can see your ReSPECT form in an emergency. This is quite similar in principle to the Coordinate my care plan. https://www.respectprocess.org.uk/patientsandcarers
Some discussion was held around this being patient held and how would for example ambulance crews know this was in place. In most areas this information is placed as is the coordinate my care plan in electronic systems that are accessible to legitimate HCP’s. Discussion was also had around the Lyons Club bottles that are placed in the house with these kind of documents in with a sticker on the patients front door for visiting clinicians/paramedics to identify.
The group discussed how there may well be variations of this in their areas and how this may be useful as a tool to start discussions if we introduce this to the patient as something we have to get filled in for their records.
Identified that this is a very individual process and cannot be prescriptive for a specific point in patients journey. It is very reliant on the specialists and their relationship with the patient and family. This was identified as problematic at times by most of the groups.
Much easier to do when the patient is well and able to make decisions.
Try to be led by the patients requests for information or asking, how long have I got? Ask them what they want to know, and when they want to know things; again the Serious illness conversation guide was identified as a useful tool for this
Conversations may sometimes be symptom led, in some areas progressing past 1st or second lines of treatment when disease is starting to progress (the more lines of treatment usually means they become less successful each time) would initiate these kind of conversations – do we as teams set a protocol for this so there is no confusion.
How you phrase questions about preferences at EOL etc. is key, terms such as ‘getting your affairs in order’ or asking what they are willing to accept in terms of goals of care and side effects etc., again the patient information pack booklet was identified as being useful for these types of discussions.
It was felt best that these discussions are much better started earlier so everyone knows the ceilings of care and preferences and the group as a whole agreed.
Tapping into emotional responses from patients and utilising holistic based assessments were identified as key, but also identified as a difficult part of the job when we area being mindful of compassion fatigue.
Identified and affirmed many of the key themes however discussed a recent workshop at St Christopher’s Hospice on the 5 P’s framework. How this has been beneficial in structuring and planning for these types of conversations.
Group consensus was that these kind of conversations need preparation and planning, although they recognised that sometimes patients can initiate without warning and that is why having frameworks or tools to hand that aid your discussion are invaluable.
¹Ngwenya N. et al (2017) Experiences and Preferences for End-of-Life care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis. Journal of Adolescent and Young Adult Oncology, Vol 6, No:2, pp200-211.
Thanks for these links, and thanks for organising such a good day - really useful, and always great to meet up with colleagues. Also really reassuring to see a growing group!!
Thank you Catherine for all you hard work and organisation, speakers were great. A big thank you for all the input in the group discussion it was informative, very thought provoking and made the session very rewarding.
Thanks for a great day, very enjoyable, great speakers and an additional thank you for sharing all the presentations
Dying to Talk Discussion Starter
Serious Illness Conversation Guide
Recommended Summary Plan for Emergency Treatment
HI Catherine ,thanks for these and also for a great meeting ! I know its a lot of work and organizing but im sure I am not alone in saying how lucky I feel to have these opportunities to not only gain education but also to network and hear what everyone else is doing . I thought Tej and Sharon's sessions were fab and really insightful , its invaluable to share practice , also good to put faces to names ! hope you managed to eventually relax Friday ! look forward to next time
Secondary Breast Cancer Research at Breast Cancer Now
Here are the pdfs of the presentations that we had at this meeting last week. Thanks to everyone who came and sorry I had to turn people away this time. I'll upload the notes from the sharing best practice session when Sharon has written them up.