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LAST (not First) AID COURSE 

Background

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.

 

The Plan

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

·               Psychologist

·               Bereavement counsellor

·               Chaplain

·               Paramedic

·               Pharmacist

·               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.

Expected Outcomes

  • 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

Comments

  1. This sounds like a great idea, and is such an important topic. We can't enable people to have a good death in their place of choice if the people surrounding them aren't supported to make this a possibility. In reality many of us would be terrified of doing this for our loved ones, and since we rely on health and social care to do many of the things we used to do for ourselves, most of us wouldnt have the skills to make this a positive experience for either ourselves or our loved ones. This sounds like a great way of preparing people for the situation should it arrive. I'm happy to support your project and would love to get updates on how the project is going. If there is anything i can do to help, please do let me know

    1. Thank you Kayleigh. I agree this is an important issue and caring for your loved ones when they are so desperately ill, knowing that time is running short can be extremely physically and emotionally challenging. Helping people to understand the statutory services available so they can navigate the complicated health and social care system which surrounds them, and equipping them with the practical skills to undertake their role will hopefully enhance their resilience and well being at one of the most challenging and distressing times of life. Hopefully, it will reduce needless hospital admissions as well, which often don't add value or quality to patients and families (who do not wish to be there) as they near the very end of life.

  2. Caroline, A good project. The general concept looks ok. Maybe you could add a session on support services available. Good luck. Regards Tom

    1. Thank you Tom. You are right to mention explicitly support that is available. We plan to create a magnetic 'sheet for the fridge' which will have all the numbers of relevant health care professionals and other support services which are general to all people in the locality, whilst also some specific contact details of people/ places offering support to that particular patient and their carer. I will however make explanation of available support more explicit in one of the teaching sessions. Many thanks again for your input, Caroline.

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