Living with Dying – valuing life, not waiting to die
Around 100 delegates with an interest in palliative care gathered together at the annual Rennie Grove conference which took place on Wednesday 22 October. Those attending included GPs, practice nurses, students, therapists, counsellors, social workers as well as hospice nurses and directors from around the country.
The conference was chaired by Stephen Spiro, Professor of Respiratory Medicine and Chair of Rennie Grove Hospice Care. In his opening speech Professor Spiro set the scene for the day’s proceedings by highlighting the fact that too many people are dying in hospital hooked up to machines rather than spending their last days as they would want in familiar places with those they love. When a diagnosis of cancer or other life-limiting illness is received, people aren’t having discussions about the value of the life they have left; discussions which would help patients focus on the choices they have about how they want to live to the end.
In the first session of the day Professor Karol Sikora, Medical Director of Cancer Partners UK and Professor of Medicine at the Independent Medical School at the University of Buckingham, spoke about the Epidemic of Death. Drawing on his many years of experience as a leading oncologist, Professor Sikora talked about the current situation in cancer care. Whilst people are living for longer partly because of advances in medical care, that can only go on for so long and a sharp rise in deaths is predicted in the next seven years.
Professor Sikora identified that the challenge for the future is to change our approach to caring for an increasing number of older people. He recognised that the sort of supportive care given by hospices needs to be introduced right from diagnosis and run alongside active treatment in a continuous pathway rather than hospices being considered just as a place to die.
He concluded his session by outlining the four futures of cancer. The first surrounds technology where we are already seeing a big impact; surgery is becoming less aggressive, radiotherapy more precise and drugs more effective thanks to technological
developments. Mobile technology is also increasing access to expert opinions. The second concerns the changes in our society which is seeing more people living alone without family support which will put the onus of care more fully on providers. The third is about how we deliver care and the need to keep people out of hospitals by delivering more treatments at home and the final future questions the finance of healthcare. With more people living longer we need to consider how we are going to pay for it. Whether we use tax, insurance, cash, charity or a mixture of all four, funding for healthcare needs to increase.
The second session of the day was led by Dr Ana Draper, a Consultant Systemic Psychotherapist from the Hertfordshire Community Trust and focused on Living with the end in mind. By using examples of conversations with palliative patients and carers, Dr Draper illustrated the importance of not taking hopes away from patients or families but instead of helping shift and change them to become realistic hopes. She pointed out that the area of therapy is very under-resourced but it is very important. It should be available from the point of diagnosis and all the way through when needed. If not handled properly for carers and family members it can have quite serious consequences including mental illness and delinquency.
In the day’s third session, Tina Smith, a Prostate Cancer Specialist Nurse working at Peace Hospice Care and the Hospice of St Francis, delivered an informative and thought-provoking presentation on a collaborative project which she is leading called ‘Back in the Driving Seat’. The aim of the project is to support men with prostate cancer in a variety of different ways. Noting that prostate cancer is the most common cancer for men in the UK (300 men within West Hertfordshire, the area that this project focuses on), she explained in detail the process of diagnosis and treatment, focussing particularly on the challenging side effects that many face.
Smith then drew the delegates’ attention to her project, Back in the Driving Seat; with funding from Prostate Cancer UK, the programme runs a Wellbeing clinic (at the Starlight Centre at Peace Hospice and the Spring Centre at the Hospice of St Francis), a six-week Wellbeing course, a peer support group, and a communication skills programme. Working on the basis that one size does not fit all, the variety of options gives those with prostate cancer a number of different outlets for support.
Dr Russell Moule, Consultant Clinical Oncologist at the East and North Hertfordshire NHS Trust and Mount Vernon Cancer Centre then addressed the conference on the subject of Radiotherapy in palliative care. He outlined how far radiotherapy has developed since the early days of unsealed radioactive sources. Today’s machines are
much more sophisticated and can pinpoint treatment to within a few millimetres. The main aim of radiotherapy in palliative care is to improve patient symptoms but this needs to be considered with side effects in mind. It is important to know your patients and factors including patient wishes, their Performance Status and their prognosis also need to be taken into account in consultation with the whole palliative care team.
Dr Moule showed delegates a range of images from different patients with different conditions to show the extent and precision of the treatment and what needs to be considered. He also outlined the uses of the new Cyberknife treatment and Brachytherapy.
After lunch the focus of the conference turned to carers with a presentation by Jo Oates, Head of Education at Rennie Grove Hospice Care on the CSNAT approach to identifying carers’ support needs. The support of carers was highlighted as the key factor in people being able to die at home so structured support of carers is considered crucial. Getting it right for carers can also help them have a better bereavement.
The new Carer Support Needs Assessment Tool (CSNAT) has been developed to respond to this need by a team comprising researchers at the University of Cambridge and the University of Manchester who worked in collaboration with Jo Oates at Rennie Grove Hospice Care. The tool identifies 14 domains to be considered, seven of which focus on enabling the carer to care and the remaining seven on providing direct support for carers. The tool is introduced to carers by hospice at home nurses trained in its use at the very first patient care visit. This helps the carer to know that the support is there right from the start even if they don’t need it at that point.
Using the new tool brings many benefits. The carers’ concerns are legitimised and a tailored programme of support for their needs results when needed. Patients feel more relaxed and reassured knowing that their carer has support too. The tool is easy to use for the practitioner with clear documentation and an action plan and it can also help the organisation provide evidence to commissioning groups that they are actively helping prevent carer crises which can often lead to emergency hospital admissions. It is hoped that the new tool can also be applied to other settings too.
The final session of the day brought a smile to the faces of all the delegates as the conference welcomed Lisa Sturge, a Laughter Coach with her presentation Laughter – the best medicine. With the help of a number of audience participation exercises, Lisa outlined the physical benefits of laughter pointing out that it releases tension and endorphins and can even increase the pain threshold by 10%. She also highlighted that it strengthens the immune system, increases blood flow, dispels toxins, lowers blood pressure and improves circulation.
Lisa also ran through the emotional benefits of laughter which ranged from increasing confidence and feeling happier to promoting sleep and strengthening relationships. Not only will laughter benefit patients and carers but it will benefit us as individuals too. She gave some tips on how we should laugh more and pointed out that you don’t have to be happy to laugh. She also drew attention to the usefulness of Laughter Yoga. Lisa concluded with 10 everyday strategies for laughter which included smiling, experimenting with different laughter sounds, sharing funny embarrassing stories and she entreated the conference to do one silly, frivolous thing every day.
Professor Spiro then summed up the day’s proceedings and thanked all of the speakers and delegates for attending.