The Cicely Saunders Foundation is an independent charity with a unique mission, to improve care at the end of life by discovering ways to improve the care and treatment of all patients with progressive illness and to make such high quality palliative care available to everyone who needs it—be it in hospice, hospital or home.

  There are many gaps in our knowledge where research is desperately needed to improve the care of patients towards the end of life. The most urgent areas we believe are:

—  Discovering the most effective and cost effective ways of enabling patients to be cared for in their place of choice, usually at home.

—  Developing models of care for patients who have illnesses other than cancer, particularly neurological diseases, HIV/AIDS which is not responding to the new combination therapies, renal failure, heart failure, respiratory failure.

—  Discovering better ways to treat some of the complex and highly prevalent symptoms, for example, breathlessness, weakness and cachexia, neuropathic pain, and other pains that do not respond to the normal morphine like drugs.

—  Discovering the best ways to change societal attitudes regarding the end of life and developing new initiatives that educate the public, particularly in spiritual and ethical aspects.

—  Providing appropriate support for the increasing numbers of older people who will have complex rather than single conditions and who will need palliative care.

THE CURRENT SITUATION

  The attached documents[25] provide a more detailed analysis of the current situation for palliative care now and in the future for the UK and other European countries. Some key issues are:

—  Worldwide populations are ageing and the cause of death is increasingly from chronic illnesses where there is a slow decline. This will increase the need for palliative care.

—  The distribution of death by age group over the years shows that more and more those people who die are aged 75 and over (this is a good tribute to improving longevity, but brings with it its own problems).

—  This means that in the future people will die from a combination of rather than single illnesses and will have complex symptoms and problems which require treatment.

—  There is evidence of under assessment and under treatment in palliative care for older people across many countries.

—  There is good evidence that, despite preferences to the contrary, the majority of people die in hospital—the hospital death rate is higher in the United Kingdom than in the United States, Germany, the Netherlands, Switzerland, France and Ireland.

—  There are great geographical variations in the percentage of cancer deaths occurring at home with variations between some electoral wards of between 11 and 70% of cancer deaths occurring at home. Only 30% of this variation can be explained by demographic and social factors, such as age and deprivation.

—  Symptoms like breathlessness are among the most feared by patients and families, determine whether it is possible for patients to remain at home (urgent admissions are caused by inability to control breathlessness) and cause great distress to both patients and families and care givers. The prevalence of breathlessness increases as death approaches and can be as high as 70%. Despite this there are very few known effective treatments and most of the drugs and treatments proposed, for example oxygen or small doses of morphine, have been used for a very long time with no real developments.

—  The culture and ethnic background in the United Kingdom is changing and there is very little known about how to provide services for people from different cultural groups. Yet there is evidence that such individuals often miss out on the best in care.

—  Despite these enormous needs the United Kingdom spends only 0.18% of its total government and charitable funding for cancer research on end of life and palliative care. It is, therefore, not surprising that little progress has been made.

SOLUTIONS

  Solutions that we propose are as follows:

  1.  Make palliative care an important public health issue, it has a role in preventing suffering and ill health among carers, including in bereavement, and preventing inappropriate hospital admissions. There needs to be palliative care as part of every Primary Care Trust and strategic health authority plans and there should be efforts in undergraduate, postgraduate, as well as public education.

  2.  Invest in research to discover the most effective and cost-effective solutions. Throwing money at developing services and approaches which are not known to be effective will not give us a solution for the 21st Century. Home care is a god example of this. Despite recent efforts the proportion of deaths occurring at home is now decreasing rather than increasing. Service or treatment developments should be research based and be evaluated as they are developed.

  3.  Those funding research should monitor the proportion of funds in any disease area directed to palliative care and invest in research to redress the imbalances.

  4.  Training of the work force is required at both undergraduate and postgraduate level.

July 2004