by Jill Short, Education Lead
Person-centred, well-coordinated end of life care, which is accessible to all, maximises comfort and wellbeing, and is delivered by staff and communities prepared to care.
This describes, broadly, the Six Ambitions for Palliative and End of Life Care delivery, and although the Framework defining these ambitions is relatively new, it is a philosophy by which hospice care has been defined since the birth of the Modern Hospice Movement 50 years ago. It is also a philosophy that has been embedded in the education and training programmes provided by Rowans Hospice in our own 23 year history. But have we achieved these ambitions, or is there still more we must do to make them a reality?
“As a hospice our role is to educate as much as it is to care”
Last month, I attended a conference on education in end of life care, hosted by St Christopher’s Hospice as part of the 50th anniversary of the Modern Hospice Movement (see the blog). We discussed many of the challenges to providing good training and education 50 years on, that will achieve the ambitions and help bring about a step change in hospice care provision. It was made clear that as a hospice our role is to educate as much as it is to care, and not just our own staff, but everyone involved in caring for the dying throughout our local community.
Evidence shows that the majority of health and care staff in all settings will at some stage look after people who are nearing death: at home, in a care home, in hospital and in the hospice, and we are all committed to the ideal that good education is central to good palliative care. I’m proud that our education provision is very wide ranging, providing carers and clinicians in all settings with the opportunity to be trained in all aspects of end of life care appropriate to their role. This ensures that “all staff are prepared to care”, as asserted by Ambition Five. We are doing a lot to achieve the other ambitions too:
We adopt a multi-professional approach in our training, bringing together those from across end of life care delivery to promote a knowledge and understanding among each discipline of all the individual services that must come together to provide the best care. As a result, “care is coordinated” more strategically, as required to fulfil Ambition Four. In turn, an increased awareness among different professionals of the different care services available to patients and their carers, means they have a better, fairer chance to be informed and access all the care services available to them (fulfilling Ambition Two “Each person gets fair access to care”).
“Throughout our education provision we train staff to get to know the individual”
Ambition One states that “Each person is seen as an individual”. We provide effective care if we know the person well, and throughout our education provision we train staff to know the person well by investigation, considering their history, family, work history, hobbies, daily routine, likes and dislikes and exploring their last wishes, how they would have liked their last days to be lived.
This life story work and advanced care planning are key to individualised care. One programme that encompasses this is the ‘Namaste Care Programme’, which trains carers in Nursing homes caring for people with advanced stage dementia. The philosophy central to Namaste Care is that we respect individuality, looking at the true sense of person-centred care.
We also make available a number of downloadable educational resources to help staff recognise individual needs and prepare individual care plans as patients enter the last days of life. This all supports a greater awareness of change within individuals, improved symptom assessment especially pain, immediate response to agitation and importantly recognition of dying, which fulfils Ambition Three, “Maximising Comfort and Wellbeing”.
“Spirituality in particular always holds our participants’ interest… we consider ways to open conversations with patients about their spirituality”
In order to further reinforce the ambitions, last year, through funds from Health Education Wessex, we ran a course on ‘Ambitions into Action’. It was a fantastic collaboration, bringing together a group of professionals, including a Palliative Care Consultant, Clinical Nurse Specialists, Clinical Psychologists and a Spiritual Care Chaplain, to discuss person-centred care and shared decision making with sensitive communication, spirituality and diversity.
Spirituality in particular always holds our participants’ interest. Many of them connect spirituality with religion, yet it can be thought of as someone’s world view, or their ‘take on life’ while others see spirituality as a way of understanding what it means to be human. On the course we explore this as a group and consider ways to open conversations with patients about their spirituality within a safe environment. The huge success of this course prompted us to continue without funding.
Communication skills are further developed on our Five Priorities of Care course, which support the well-being of the individual and their carer. It also supports staff to update and regularly review the delivery of care and relevant documentation depending on the individual’s abilities & pain, develop strategies and resources to use, and recognise the impact that loss has on individuals and how to offer support.
“Nobody is immune from the traumatic and distressing nature of death and dying… we explore self-care and coping strategies”
In all of the courses we deliver we provide time for activity and discussion around recognition of distress. People with life shortening illness are likely to experience some form of distress at some point, related to physical, psychological, emotional, social or spiritual reasons. We extend this to support the resilience of staff working in end of life care, who can very easily suffer burnout in these circumstances; nobody is immune from the traumatic and distressing nature of death and dying and to give the best care day in and day out requires us to consider psychological safety, support and resilience. In all our education and training we explore self-care and coping strategies as individuals and teams. We run resilience training, stress workshops and mindfulness courses in recognition that this is needed; sometimes we just need to be reminded of what makes us smile, what re charges our batteries.
“We are well on the way to delivering care that fulfils the ambitions, but…”
So, yes I believe we are well on the way to delivering care that fulfils the ambitions, but it is now about ensuring our education provision can achieve real change across organisations – bear in mind these are the same ambitions as described by Dame Cecily Saunders half a century ago! –, and reach further out to the end of life care community. There are a number of challenges and opportunities we must seize upon in order to do this.
Firstly, we must simply make better use of modern technology, particularly our connectedness via the internet to wider groups. Webinars for example will reach a much greater audience than can fit into one seminar room!
“Providers must work collaboratively to standardise education while staying flexible and individualised”
Education providers must work collaboratively with other providers to deliver training, rather than be seen as a competing provider to our collective detriment. A collaborative approach will help ensure our education is standardised in terms of quality and content, yet it can still be made flexible and individualised enough to adapt to the needs of the different care settings and providers we train.
“We must support Senior managers as role models, who can apply the attitudes and knowledge in their own settings”
Importantly, we need to focus on building relationships with senior members of organisations, to not only train them, but support them to be role models for their staff; a novel approach which ensures we train and support senior staff members to go back to their own organisation with the acquired attitudes and knowledge and pass them on to their staff, to truly action change across whole organisations.
End of life care can be the most difficult and intensely delicate physical and psychological area of caring. As such palliative and end of life education is a fundamentally vital part of our professional roles, to support ongoing best practice and encourage honest and sensitive conversations about the future of the people we care for. Fulfilling these ambitions and overcoming these challenges will enhance the care we deliver for every patient and enable everyone to approach all aspects of end of life care with sound knowledge, responsiveness, compassion and confidence.
Jill Short, Education Lead at Rowans Hospice
Download our 2017 Training Programme to find out more about the courses we’re running. If you are interested in a professional development you can explore opportunities for clinical placements at the Hospice here. See what else we offer healthcare professionals.