Skip to 0 minutes and 9 seconds 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.
Skip to 0 minutes and 51 seconds 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.
Skip to 1 minute and 36 seconds 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.
Skip to 2 minutes and 18 seconds 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.
Skip to 3 minutes and 2 seconds 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.
Skip to 3 minutes and 44 seconds 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.
Skip to 4 minutes and 23 seconds 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.
Skip to 5 minutes and 6 seconds 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.
What is palliative care?
In this video, Dr Nancy Preston provides a brief introduction to Palliative Care.
Before you watch the film
Tell us what palliative care means to you by posting a comment.
After watching the film
Compare what you previously thought about palliative care with Nancy’s definition. Did the film raise any aspects that you hadn’t previously thought about?
A Spanish translation of this introductory video is available in the downloads section below.
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