Lancaster University | What is Palliative Care?

Welcome to our course-- Palliative Care-- Making it Work. Palliative care has traditionally been delivered at the
end of life, particularly for cancer patients. But there's increasing recognition that palliative care may meet the
unmet needs of patients much earlier in their disease trajectory and also the needs of patients not only with
cancer, but those with respiratory or heart problems.
Over the next three weeks, we'll be looking at how palliative care is delivered in different European countries. I'm
part of a European team who've been looking at how we integrate palliative care services better into the care of
patients with specialists from cancer, heart failure, and respiratory conditions. This project is called InSup-C. It's
involved interviews with patients, families, and health care professionals in five European countries and formed
the basis of this MOOC.
So what is palliative care? Historically, palliative care developed in the 19th century, largely by religious orders
with a focus on preparing the soul rather than the body for death. Madame Jeanne Garnier, who developed the
Association of Women of Calvaire in Lyon, France, was one of the first hospices characterised by a respectful
familiarity and attitude of prayer and calm in the face of death. It wasn't uncommon for beds to be placed around a
central cross in the middle of the room.
Hospice is a term strongly linked to palliative care, and its first use was by the Irish Sisters of Charity in Ireland in
1893. They described their service as it's not a hospital, for no one comes here expecting to be cured, nor is it a
home for incurables, as the patients do not look forward to spending years in the place. It is simply a hospice
where those who are received are very soon to die and who know not where to lay their weary heads.
These sisters were asked to come to East London to advise on setting up a service of the dying, which was the
beginnings of St Joseph's hospice and the modern day hospice movement. However, no one is more strongly
linked to palliative care than Dame Cicely Saunders, who founded St Christopher's Hospice in London and who, in
the 1960s, really started to develop a holistic approach to care of people at the end of their life and was very much
a pioneer of the modern day palliative care movement. She was a nurse, a social worker, and a doctor, and used
these skills to give complete care for patients and famously recognise that how people die remains in the memory
of those who live on.
The term "palliative care" was coined by Dr Balfour Mount following a visit to St Christopher's, which comes from
the Latin meaning to cover or cloak, as in to care for. By the 1980s, there were about 100 hospices in the UK,
although the rest of Europe developed at a slower rate.
Core values of palliative care were respect for the personhood, sophisticated pain and symptom control, and

given Saunders' background, the application of multi-disciplinary working. In the UK in particular, this movement
was largely funded by local community groups who could see a dire need for good end of life care. Health care
had become more medicalised with the growth of the National Health Service, and with far more treatments on
offer, there was now a change for deaths to occur in hospital rather than a home. Death was now viewed as a
failure of medicine rather than as an inevitable part of life, and this view can still persist today.
Organisations like the European Association for Palliative Care were developed which really started to support the
growth of palliative care around the world. Yet we still have a long way to go. And simple actions, such as making
morphine readily available, can have a huge impact upon a patient's experience.
I've provided a link to one short video demonstrating this where there are a series of videos called Life Before
Death. But palliative care is not limited to terminal care, as I've said. And research has shown that by offering
palliative care earlier in the patient's journey, this can have huge benefits.
This may mean that psychosocial issues and other symptoms are addressed much earlier, as well as receiving
potentially curative treatments alongside. Palliative care largely developed in relation to cancer care, but this is
now changing. And in our research, we included an emphasis on chronic conditions, such as chronic obstructive
pulmonary disease and heart failure. But we still have a long way to go, particularly in integrating palliative care
earlier into general care.
However, both Dame Cicely Saunders and the EAPC recognise the need for research in this area to help promote
the best care. And this MOOC gives you an up-to-date version of palliative care across Europe. This week in
particular, we will look at the current situation of palliative care in Europe. In the second week, we will explore what
guidance is available to help deliver integrated palliative care.
Within the final week of the MOOC, we'll be focusing on how certain situations, such as living alone, might make
the experience different, or how key individuals might be involved, like family carers or the general practitioner.
Every week, we'll provide two examples of good practice, which may improve insight, reflection, and ideas for your
own practice or in the care you receive.