I’ve been a PPI (Patient and Public Involvement) member of Palliative Care projects at QUB (Queens University, Belfast) for several years. My interest was piqued recently by the degree of stereotypical thinking on the key concepts of Palliative Care, Hospice Care and Heart Failure. This became apparent from verbal comments by healthcare professionals and clinicians at recent stakeholders’ and project meetings. To experienced professionals in these fields this will come as no surprise and has been evident for decades (as was stated by one recently retired clinician at a recent stakeholders meeting). What is surprising to me is that this kind of thinking is not just confined to the general public – patients, care givers and family members – but also a whole range of key medical staff such as GPs and consultants, who are important gatekeepers to those medical services which patients with long term and life-limiting illnesses need access.
Palliative Care is usually regarded as synonymous with end-of-life care and like so many others I used to think this too. In fact this association is so deeply ingrained that it is still difficult NOT to think that. But last year a researcher on one of these Palliative Care projects circulated a comprehensive description of the term (the word ‘definition’ doesn’t do it justice) published by WHO (World Health Organisation of the UN) which captures the breadth of what can constitute Palliative Care in its fullest sense.
“Palliative care improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual. The quality of life of caregivers improves as well.
Early delivery of palliative care reduces unnecessary hospital admissions and the use of health services.
Palliative care involves a range of services delivered by a range of professionals that all have equally important roles to play – including physicians, nursing, support workers, paramedics, pharmacists, physiotherapists and volunteers –– in support of the patient and their family”.
For the full description go to https://www.who.int/news-room/fact-sheets/detail/palliative-care
The full description covers improvements in the quality of life for both patients and caregivers and it addresses not just physical problems but also the psychological, social, emotional and spiritual problems of having life-limiting conditions. In a real situation these dimensions of illness can be difficult to separate out, particularly for the patient. This implies that effective treatment and care ideally must be integrated too. This, I believe, is the essence of Palliative Care. It has been traditionally associated with Cancer care in the UK and elsewhere, but the definition makes it clear that it could and should be applied to all forms of life-limiting diseases such as heart disease, including heart failure, chronic respiratory diseases and diabetes but also kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological disease, dementia, etc.
As a lay person I naturally associated Palliative Care with Hospices where end-of-life care is provided usually for cancer sufferers – and it’s so easy to just park that perception, unless or until it either applies to you, a relative or a close friend, where it could then change. This strong general perception owes much to the creation of the modern hospice movement in England by pioneer Ciceley Saunders in the 1960s. Her focus was on cancer treatment as the inspiration came after a period of training in the 1950s at St Josephs Catholic Hospice in Hackney, London, where her care for a cancer sufferer greatly influenced her. But St Joseph’s Hospice was, and still is, a centre for the treatment of the terminally ill from any disease. They did not, and do not, discriminate.
Surprised by this I began a detour into the history of the modern hospice movement. Where, how and why did this tradition originate?
The modern manifestation of hospices began in Lyon, France in 1843 when a young widower and bereaved mother, Mme Jeanne Garnier, along with others in a similar situation, founded the Dames de Calaire in Lyon, France, to provide care for the dying. At that time death was seen as a failure by the medical system and consequently the focus of hospitals was on curative treatment – the dying were not welcomed.
As the idea spread six more hospices were established in Paris and New York in the last quarter of the 19th century. The idea spread to Ireland when it was adopted by the Irish Sisters of Charity who opened Our Lady’s Hospice in Dublin. In 1905 they opened St. Joseph’s Hospice in Hackney, east London, where many Irish Catholics had settled following the famine years of the 1840s and 50s. These earlier hospices provided care for the dying, and particularly the poorest in society. Modelled on medieval hospices that cared originally for ill travellers, these hospices were run by religious groups of nurses offering basic medical care.
Hospices did not become more widely known until Cicely Saunders, later Dame Cicely, founded St. Christopher’s House in London in 1967. Cicely Saunders had been a nurse, but was working as a medical social worker when she became involved in the care of a terminally ill cancer patient in a London Hospital in 1948. His name was David Tasma, a Warsaw ghetto survivor. They discussed the possibility of creating a more ‘home-like’ place where people could end their lives. He left her £500 to start this work. Wanting to do more for dying patients and following her Christian faith, Saunders retrained as a doctor to learn about managing pain. In 1952 she began studying medicine becoming a qualified doctor at the surprisingly late age of 38.
When she was working as a nurse and social worker, Cicely Saunders had noticed that hospital doctors in the 1950s often deserted their dying patients. Professional medics rarely told patients they were dying and offered limited help with pain, symptom management or anxiety. Saunders was inspired by the care and attention she witnessed at earlier London hospices, such as St Joseph’s, Hackney. She developed the idea of a modern hospice that combined the caring attitude of earlier hospices with cutting-edge medical research and teaching.
“It struck me then as being exceedingly odd why she was going into medicine. Because I had gone into medicine, or so I thought to cure people, as everybody had. And this extraordinary woman, much older than the rest of us, much taller, quite a big build, had gone into medicine to care for the dying. I had never heard of anything like that before and if you had asked me at the time whether I thought anything would come of it, I would have said without any doubt no of course not.”
“When she left St Joseph’s to devote herself here to the development of St Christopher’s, she had written out no fewer than a thousand patients who had received pain killing medication, which at that stage was diamorphine or heroin by mouth and in a dose adequate to their needs, which was quite revolutionary in giving the dose regularly to prevent pain rather than when the patient was in agony. That was her enormous contribution to the field.”
Dr Mary Baines, Former Consultant, St Christopher’s Hospice and an ex-colleague of Cicely Saunders
So the genesis and origins of Hospices are rooted in the care of the dying from any disease, e.g. Heart Failure. But things have moved on in the many modern hospices that exist today. They are now diversifying and increasingly cater for a variety of serious illnesses together with respite care to relieve carers, frequently close relatives or friends. Carers are often under great pressure, a threat to their own health, and this is an issue which is consistently overlooked. If my local hospice is typical, it has become a kind of social hub for the elderly in need of day care and also a venue for alternative or complementary therapies. It seems a truism that successful Hospices develop close links and relationships with their local communities and respond to their needs
Lastly we come to that old chestnut, Heart Failure (HF), which I have written about in a previous Blog (Some Thoughts on Terminology – a Patient’s View – PalliatHeartSynthesis). It can come as a nasty psychological shock to be diagnosed with Heart Failure when, although you might feel unwell, you don’t feel as though you’re going to die in the immediate future. However, unfortunately the term simply conjures up the image that the heart is failing and if something fails, like a car engine, it usually means it has come to a full stop. Send for the crash team! (the medical equivalent of the AA or RAC?). But this is not true even for patients with advanced heart failure. In reality there is a wide range in the degree of severity Heart Failure patients can suffer from their symptoms. In my own case the symptoms are managed successfully by medication and life style changes. The cardiologists and other key medics know all this but of course the patients, their care givers and loved ones, don’t, at least not initially, and a high degree of anxiety can build up – and in some cases also anger.
This happened to a close relative of mine who was recently diagnosed with HF. This is a lady who is 84 years old, a former teacher with mobility and other health problems but still remarkably active both physically and mentally. She got really angry at her HF diagnosis as her classic symptom were not stopping her doing the activities she loves. Once the term was unpacked for her she did calm down and takes her medicine. But like so many instances of this nature, it surely indicates that the term Heart Failure is a misnomer and it cannot be beyond the wit of man to think up a better term or a different way of classifying the range of symptoms under this umbrella term.
But terminology has a habit of sticking and a degree of inertia sets in because the term has been around for decades, well before the major post-war advances in Heart surgery and treatment. The same goes for our perceptions of the meanings of all these three terms, Palliative Care, Hospice and Heart Failure. So we need to be open and flexible in taking on board these potential variations and changes to our fixed and embedded definitions. A wider understanding of the breadth and changing nature of these terms amongst clinicians as well as lay people could be so important to us both in our own medical future but also those of our nearest and dearest.
References,
https://www.hospice-ign.org.uk/hospice-income-generation-network/history-of-the-hospice-movement
https://www.stchristophers.org.uk/voices/earlyyears/
St Joseph’s Hospice – a Century of Caring in the East End of London by Michelle Wiinslow and David Clark pub 2005 by Observatory Publications (International Observatory on End of Life Care, Institute for Health Research, Lancaster University, Lancaster, LA1 4YT, UK)