2015 Conference Report
Quality at the end of life – breaking down the barriers
Colleagues from across the healthcare sector attended the Rennie Grove Hospice Care Annual Conference on Wednesday 21 October 2015 for a series of presentations and discussions on the issues surrounding providing quality care at the end of life.
Consultants, GPs and representatives from national bodies joined therapists and nurses from hospices, GP surgeries, hospitals and nursing and care homes to hear about the barriers to delivering quality care and to explore some suggested solutions.
The day’s proceedings were chaired by Elaine Coleridge-Smith, Trustee of Rennie Grove. In her introductory comments, Elaine recognised that although there is some excellence in care which has resulted in the UK recently being ranked top in the world in the Quality of Death Index, a report issued in May by the Parliamentary Health Ombudsman has also shown that too many people are still being failed by end of life care.
Keynote speaker, Simon Chapman, Director of Policy, Intelligence and Public Affairs at The National Council for Palliative Care and the Dying Matters Coalition, picked up on this very theme saying that while Britain might be the best place in the world to die, this is no cause for complacency.
In his comprehensive presentation, Simon Chapman looked at what had gone wrong with the Liverpool Care Pathway and highlighted the main barriers to providing quality care at the end of life. These included poor coordination and fragmentation of care, poor symptom control, lack of discussion and planning, inequalities and unfairness in access to services, poor use and quality of data and slow speed of change.
He spoke of the need for a proper national conversation about dying so that people know what to expect when we face our final days. He outlined evidence showing that most hospitals are ill-equipped to give dying patients dignity and respect and that staff lack training in end of life care.
The need to listen to what patients and families are saying was a key theme and this has been a main driver in the development of a national framework for local action which lays out ambitions for palliative and end of life care. This National Palliative and End of Life Care Partnership states that all organisations involved in and responsible for end of life and palliative care have made a collective decision to act together to help achieve for everyone what they would want for their own families.
By treating each person as an individual, ensuring fair access to care, maximising comfort and wellbeing, co-ordinating care, preparing staff for their roles and ensuring that communities are prepared to help, the collaborative Partnership believes that they would be able to overcome the barriers and deliver the vision of making the last stage of life as good as possible for patients and families.
He concluded that whilst there was much to celebrate in end of life care, there is still much to be done and that there is a real need to work collaboratively to fix the problems.
The second session of the day was led by Robert Tobin from Kennedys Law who provided useful guidance on the law around end of life care. He started by outlining the issues surrounding the Mental Capacity Act and reminded healthcare professionals that every patient has capacity unless you prove otherwise and that they should talk to and listen to patients to help establish what they want.
Useful scenarios to enhance understanding of Best Interests judgements were given along with the suggestion that getting to know the patient better by talking to them, their families and others involved in their healthcare really helps in this area. Detailed discussions followed about what constitutes an Advance Decision.
Robert then explained what a Lasting Power of Attorney involves in the Health and Welfare context. With this in place, next of kin or another individual can be given the power to make a clinical decision. The presentation then looked at DNACPRs which are effectively an Advance Decision. Their value is that they can help ensure a patient dies in a dignified and peaceful manner and might help avoid a hospital admission, but there is scope for confusion and disagreements. The key for DNACPRs is to make sure that you involve everyone, clearly document the decision and then inform all agencies – including the ambulance service. The session concluded with a look at the role of the Court of Protection.
“When to stop Chemotherapy” was the topic for the third session of the day which was led by Dr Nick Bates, Clinical Oncologist from the John Radcliffe and Stoke Mandeville Hospitals. Dr Bates started the session by giving background information on chemotherapy and some of the new drugs available. He outlined that some new treatments like immune modulators can be highly effective but have their own unique set of side effects.
Dr Bates stressed the importance of constant monitoring of patients to ensure that treatment is effective. Factors to take into account when considering stopping treatment include disease progression, financial considerations and treatment toxicity which can destroy quality of life. However, picking the right moment to move from treatment to palliative care is not always easy. Barriers include patient denial, participation in clinical trials and communication between hospital and community care. Dr Bates noted that the computerisation of patient records had helped massively within hospitals and that it would be ideal if voluntary and community care services could also have access to them to ensure better care.
The session concluded with the recognition that when well used, chemotherapy can increase quantity and quality of life, but that careful monitoring is needed to ensure treatment remains beneficial and that when stopping treatment effective and timely communication between healthcare professionals is key.
Doreen Beattie, a volunteer at Rennie Grove Hospice Care, then gave a presentation to the conference on an initiative she had developed to offer patients in the Day Hospice at Grove House the opportunity to tell their Life Stories. Doreen explained where the idea came from and how the project began before going on to describe how she records a Life Story. Over the course of three one hour sessions, Doreen listens to a patient tell their story. She then writes up the story and incorporates photographs into a book which the patient is given to keep.
Doreen entertained the conference with some amusing anecdotes from her experiences with patients and outlined the value of the initiative in helping to make patients feel valued, increasing their feelings of self-worth and leaving a legacy and a wealth of information for families. She rounded off her presentation by reading an example of the all-important and very moving final paragraph of one of her patient stories.
The session after lunch was led by Dr Fliss Murtagh, Reader and Consultant in Palliative Medicine at Kings College Hospital. Dr Murtagh’s presentation focused on the need for the palliative care sector to record its outcomes and started with a definition of an outcome as a change in health status, as distinct from an output which is usually a metric about productivity.
She drew attention to the fact that palliative care needs to move away from relying on a drawerful of thank you letters as proof of a job well done and start shaping meaningful outcome measures before those that might be less meaningful are imposed. However, it is important to measure the right things and to concentrate on what matters most to patients and families. It is also important that any measures introduced work hard for us and help improve clinical care and inform management and strategic decisions on a local, regional and national level.
The Outcome Assessment and Complexity Collaborative (OACC) started as a collaboration in South East London to implement outcome measures including the Integrated Palliative care Outcome Scale (IPOS) into palliative care practice, but now, with the support of Hospice UK, access to the OACC training and resource packs has been extended across the UK. Dr Murtagh stressed the importance of the same measures being used and being consistently applied if the data is to be meaningful and views training in the use of the measures as vital.
The presentation outlined the basic stages involved in the measures and concluded that measuring complexity of patients’ conditions and the difference made in a consistent and reliable way could help us to target palliative care to those with the most complex needs and build a solid case for why we need more investment in palliative care in the future.
For the final session of the day, Diabetes Specialist Nurse, Frances Moss spoke about managing diabetes in end of life care. Of the 500,000 people who die in the UK every year, between 6 and 9% will have diabetes and this figure is set to rise as our population ages and diabetes increases. The End of Life Diabetes Care Clinical Care Recommendations provide guidance for the management of diabetes in the four stages within end of life.
Through the use of case studies, Frances illustrated the importance of a patient-centred approach and that each case needs to be treated individually. The main aim is to avoid repeated incidents of hypo or hyperglycaemia and to control symptoms. In type 2 diabetes treatment can be withdrawn in the final days but it is important to listen to the patient’s wishes and to involve the family in all decisions.
Elaine Coleridge-Smith then summed up the day by observing that hearing the patient voice was a key theme of the day alongside the need to measure outcomes rather than process. She encouraged everyone at the conference to get in touch with their MPs about the forthcoming Choice at the End of Life debate which links to the National Spending Review to put a case for more funding for palliative care. She also suggested that because being able to evidence the care that we give is so crucial, everyone should look at their own outcome measures and consider Dr Murtagh’s training resources.
21 October 2015