We’re delighted to support Hospice Care Week with a special series of guest blogs. In the first of the series, Hospice UK nurse Marie Cooper introduces the week with a look back at some pioneering work in palliative care and how research is helping promote best practice in looking after people at the end of life.
The hospice movement began as a grass roots, community movement to provide person-centred care for those living with life-limiting illness and those facing the end of life. Today, hospices on average have to raise over £1.5m a day to provide their vital and specialist support – most of which comes from generous and loyal donors and funders.
Research for best practice
The privilege of supporting people through the end of life and the responsibility of charitable funding mean it is crucial for hospices to provide the best possible care – care that can be demonstrated to be effective. This was true when Dame Cicely Saunders, the pioneer of the modern hospice movement, first saw the impact of her research into pain control at St Joseph’s Hospice and subsequently revolutionised symptom control for those at the end of life using orally administered morphine. Dr Mary Baines, a contemporary of Dame Cicely Saunders, references this here as the first research project in the field of palliative care.
This spirit of person-centred innovation and the sharing of good practice is becoming increasingly central to the modern hospice. It means that dedicated staff, using trusted methods, are enabling people to live lives beyond their symptoms and enjoy the time they have left with their loved ones.
In hospice and palliative care the choices made around every aspect of end of life care impact on what, if handled badly, could be a considerably traumatic experience for everyone involved – the death of a loved one. This week (06-12 October) is Hospice Care Week and if you look to Twitter and Facebook you will see just how close hospice care is to so many people as communities up and down the country share their experiences using the hashtag #HospiceCareWeek.
Working towards a better understanding of outcomes
We have a duty in the hospice sector not only to strive for the best care possible, but also to be honest about any limitations that we face.
When discussing the importance of her work on a new quality framework for hospice care, Gill Horne, Quality Assurance Lead at Hospice UK and Director of Patient Care, Rowcroft Hospice, recently wrote on ehospice:
The term ‘hospice care’ is often synonymous with the concept of high quality care for people approaching the end of their life and their families. Evidence exists that the experience of hospice care is positive for those who receive it, however as the Commission into the Future of Hospice Care suggests, hospices need to “strengthen understanding of the contribution of hospice care” and also “…be accountable and transparent in all they do and develop systems for ensuring systematic assurance of quality, competence and compassion.”
This is also why Hospice UK is currently working with NHS England, Public Health England and other organisations, including the National Council for Palliative Care and the Cicely Saunders Institute, to improve palliative care Data is the information collected through research. More collection. This work is aimed at better supporting clinicians, service providers and commissioners in improving quality of care and ultimately achieving better Outcomes are measures of health (for example quality of life, pain, blood sugar levels) that can be used to assess the effectiveness and safety of a treatment or other intervention (for example a drug, surgery, or exercise). In research, the outcomes considered most important are ‘primary outcomes’ and those considered less important are ‘secondary outcomes’. More for patients and their families.
Public Health England is leading the development of a core national data set and consultation on this has recently begun. Data collection via the current minimum data set (MDS) for specialist palliative care will continue and further updates on the consultation and how to take part will be available later in the year and in 2015.
There is no doubt that the hospices understand the importance of evidence-based best practice, monitoring quality and making sure that we as a sector are working to address any gaps. If anyone is in any doubt as to why this is important, then I simply ask them to look at the generously shared stories from people across the UK this Hospice Care Week.
For more information please visit www.hospiceuk.org