LAST (not First) AID COURSE
Since the speciality of palliative care was conceived by Dame Cecily Saunders in the 1960s, much has changed in terms of the approach of services and delivery of palliative care. This is critical as there are several pressing issues facing the population in the UK today:
· Ageing (with more very old people)
· Increasing multi-morbidity
· Fluctuant trajectories of illness
· Active treatment later in illness
· More deaths in the UK (due to post-war boom in birth rate and ageing)
· Heightened uncertainty- services and treatment need to respond to this
· Changing public expectations
Additionally, attention is being paid to the place where people are both cared for and die, with a view to providing choice and adequately planning care for terminally ill patients.
Predictions exist to project where people will die (in the UK) up to 2040. It is expected there will be a reduction in hospital deaths and an increase in care home and home deaths. Whilst the number of deaths out of hospital should therefore rise, unless sufficient support is offered and readily available, the quality of this experience for patients and carers will remain highly variable.
For many years the hospice and palliative care sectors have supported people to die well in hospices, in hospitals and in their own homes. Over time the style of support has changed too. For instance, professionals did things TO people, then increasingly FOR people, and more recently we acknowledge the importance of working COLLABORATIVELY WITH patients and their families. Feedback from families caring for their loved ones at home at the end of life has shown that in some cases, support from professional carers has adversely affected the experience. A quotation from a carer offers an example of this- “Both he and I wanted him to die in his own bed with me beside him, but because you came to help and insisted we had a hospital bed, this could not happen”. Carers are willing to take ‘risks’ when caring for their loved one as they die, many such risks are impossible for health care professionals. Death is such an important, unique event with only one opportunity to get it right, therefore our aim is to assist and enable willing carers to do this with maximum possible support.
Our intention therefore is to provide a structured education programme to enable carers to do it really well for themselves. We intend to run a ‘Last Aid’ course for carers at our hospice on a weekly basis to learn necessary skills. The sessions will be facilitated by a multidisciplinary faculty including;
· Palliative Care doctors
· Palliative Care nurses
· ‘hospice at home’ healthcare support workers
· Bereavement counsellor
· Social worker
· Palliative Occupational Therapist
· Palliative Physiotherapist
· A Carer
We have created an outline for the course from previous carer feedback and other topics we know to be helpful. We have a group of carers who are known to the hospice and have agreed to co-design aspects of the course. Our intention is to undertake a 2-3 hour session with these carers using a mini-delphi approach to collate ideas.
We will undertake weekly feedback from the participants engaged with the course in order to maintain an iterative process throughout.
The course will consist of 6 sessions run on a rolling rota with carers able to participate as able. Our intention is to run the course for 1 year within the hospice, with a view to undertaking the course in the 2nd year within the community (i.e. village halls), working alongside other community organisations (churches, schools, Age UK, Rotary Club, Housing Associations etc) to identify carers who will benefit.
The sessions will cover:
1. Being a carer – physical and psychological aspects, isolation, other sources of support available (delivered by nurse/ psychologist)
2. Equipment, hospital beds, safe manual handling for carers (delivered by occupational therapist/ physiotherapist/ health care support workers)
3. Medicines – to include treatment of common symptoms, using controlled drugs, busting myths about drugs at the end of life, organising and understanding medications (delivered by doctor/ nurse/ pharmacist)
4. Dealing with the unexpected – changes in clinical condition, what happens when you call an ambulance, hospitalisation in the last phase of life, Advance Care Plans and resuscitation (delivered by paramedic/ doctor/ nurse)
5. Becoming more ill – physical changes including mobility, fatigue, appetite, swallowing etc and psychological changes in the patient (delivered by doctor/ nurse)
6. Aspects of loss – practical issues such as wills, funeral directors, death certification and emotional aspects such as grief. Signposting and guidance to access all available support (delivered by social worker/ bereavement counsellor/ psychologist)
Following completion of the course all carers will be asked to offer written feedback with the opportunity to talk with a faculty member if needed.
- Improved patient experience
- Reduced family burden and anxiety
- Increased awareness and uptake of community general and specialist services
- Opportunity to meet, network and share ideas to enhance peer support
How you can contribute
- Feedback on the general concept
- Expertise from colleagues on delivering medical education to a lay audience
- Expertise on measuring and implementing feedback from a lay audience