Webinar recording: Volunteering and end-of-life care: An evidence based toolkit

In this webinar, Professor Walshe also offered advice on how to measure impact of volunteer services and ideas of what volunteers can do to support patients with a life-limiting illness.

Here is the link to download the toolkit.

If you have any questions for Professor Walshe, please email me at vt@helpforce.community.

Below is the summary of questions and answers during the webinar:

1. Do you have any tips for getting feedback from patients in hospital regarding the impact of volunteers?
   CW: You would have to think very carefully about what impact you would expect from the volunteer input received during what (might) be a short in-patient hospital stay. As I said on the webinar asking about ‘satisfaction’ with the service is highly likely to bring back very positive replies, but be of little use to help you to develop your service or truly understand the difference to patients. So, for example, if the impact might be on (as a random example) diet/nutrition/fluid intake then the (long term) impact might be on issues such as length of stay or number of urinary tract infections, but this would be measured on a ward level, not an individual patient level. If you want patient feedback then the recommendation would be to ideally select a validated outcome measurement tool that measures what you think the impact might be (quality of life, wellbeing, confidence, …..?). You can see many tools here: http://www.comet-initiative.org/, or in my own field the instrument library here: https://palliativecareresearch.org/corescenters/measurement-core/pcrc-instrument-library . In an ideal world you would measure this on admission and then again on discharge/after the volunteer input.
2. I would like to develop volunteers for EoL – last days, but have been asked to find out what local need is. Can you suggest how I would do this?
   CW: What is meant by need? Do you mean within hospital or in the community? I suspect there is a need throughout the country for such services unless they already exist in your area – those who run such services generally report ongoing demand. I would be speaking to local specialist palliative care providers who would have data on the number of people dying in the area, and where they die. This is also available from the end of life care intelligence network website, where you can find out how many deaths in your area, and where people died: http://www.endoflifecare-intelligence.org.uk/home
3. Could you offer any advice on collecting feedback for patients and their families at end of life (within last hours/days) not palliative?
   CW: Well, to be pedantic (I am an academic!) I would say that is also palliative care, but I understand what you mean. Collecting feedback from patients may be difficult in that time period as people may lack capacity (conscious levels, delirium, sedation etc.). Again, what is it that you wish to know? What feedback would be helpful? It is possible to collect data from carers (see tools in link above), but as a researcher the NHS research ethics committees would be unlikely to allow me to collect data so very close to death, and even if allowed for specific purposes, many carers would not participate at such a sensitive time, although we know that people generally are very keen to give back and to participate in research a little earlier in the dying trajectory. This free to access paper has a useful overview of the issues that need to be considered: https://bmcmedresmethodol.biomedcentral.com/articles/10.1186/1471-2288-12-123. We therefore generally use bereavement surveys such as VOICES to understand the impact of care towards the very end of life. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthcaresystem/bulletins/nationalsurveyofbereavedpeoplevoices/england2015.
   The FAMCARE2 survey has also been used recently by the Association of Palliative Medicine in a national audit, which would enable some comparisons to be made. I would strongly suggest liaising with your NHS evaluation and audit departments who would be able to provide advice and support. See audit information here:https://www.hqip.org.uk/resource/documenting-local-clinical-audit-a-guide-to-reporting-and-recording/#.XMgbEuhKg2x (and lots of other resources here too).
4. How did you measure quality of life for the recipients?
   CW: In our ELSA study we used the WHOQOL BREF. We chose this because it is a valid and reliable, well tested, generic QOL tool – its not specific to end of life care. Its not perfect, but it is relatively short (26 items), multidimensional (physical, environmental, social and psychological items), and widely culturally acceptable (and translated into very many languages). There are EOL care specific tools that are shorter – see the library link above.
5. What can volunteer service managers do to support volunteers should one of their patients pass away?This is a key question that needs to be addressed before any services are set up – people being supported by volunteers will die. Most services offer regular support meetings and discussion opportunities to volunteers, debriefing sessions, and if needed access to additional support such as bereavement or other counsellors (rarely needed, but good to have a referral pathway if required)
6. Can you give us a good example of anywhere that has been using volunteers to support patients who are in need of end-of-life care? The sites that were part of our ELSA study include Sue Ryder hospices, Hampshire Hospitals, and other independent hospices (St Michaels in Harrogate, Peace Hospice in Watford, St Josephs in London) – but many local hospices run home delivered volunteer schemes. Compassionate Neighbours at St Josephs is one of the largest: https://www.stjh.org.uk/neighbours and their new website here with all their other sites: https://compassionateneighbours.org/