“What it takes to deliver holistic palliative care” – Emily Churchill, Sister King Centre
At my core, I have always wanted to nurse people who were dying. That may seem unusual, but caring for those with an end of life diagnosis is an incredible privilege as you care for the whole person, and their loved ones, through some of the most challenging times they will ever face.
Palliative care is constantly changing in the face of technological and medical advances. In years gone by, the focus was on making the patient comfortable. But now we care for people through much longer trajectories alongside palliative treatment which hopes to improve both their quality and length of life.
OUTSTANDING PALLIATIVE CARE TODAY IS THEREFORE HOLISTIC, SEEKING TO CARE FOR THE WHOLE PERSON AND NOT JUST THEIR ILLNESS, THROUGH THE PROVISION OF PHYSICAL, SOCIAL, PSYCHOLOGICAL, AND SPIRITUAL CARE.
Each of these four dimensions of care are equally important as the other and they all feed into one another. For example, if someone is living with chronic pain, this can lead to depression and anxiety which in turn can affect relationships and hurt the absolute core of a person, damaging their spirit and leaving them feeling isolated and cut off from normal life. They are intrinsic to one another.
Most people associate the care we provide at Hospice with physical palliative care. Our team at Hospice are experts in delivering care to people with a life limiting or life threatening diagnosis and helping to manage the physical symptoms that arise with these conditions. Their specialist knowledge is used to control symptoms such as pain, nausea, and agitation, but also to provide enablement care in the form of physiotherapy, breath control, and support to maintain independent living for as long as possible. It is about helping someone to function in the widest sense including moving around, eating and enjoying food, communicating with others, managing activities of daily living and participating in meaningful activities –
IT’S INCREDIBLY PERSONAL AND UNIQUE TO EACH PERSON WE CARE FOR.
What is often not seen except by those we are directly caring for is the social care that we provide. Illness can affect your ability to function normally in life such as going to work, going to the shops, having a social life, interacting with others. We have a social worker on our team who is also the end of life care social worker for the Island. She is part of our multi-disciplinary team and the support she offers many of the patients we care for can range from bringing nursing care into the home or finding an appropriate and supportive place for someone to live in the community. The nursing team are key to this delivery of social care as they meet each patient and listen to their needs and concerns, creating a safe space where individuals can talk openly about elements of their lives that they feel are falling apart.
TO THE MAJORITY OF PEOPLE, FEELING AS THOUGH YOU CAN’T CARE FOR YOURSELF IS VERY HARD, AND SOCIAL CARE IS ABOUT HELPING THEM ACCESS THE SUPPORT THEY NEED TO MANAGE DAY TO DAY LIFE.
Becoming a patient, let alone living with the symptoms of illness and knowledge that you’re facing the end of life can have an overwhelming emotional impact. Psychological care is essential for the mental wellbeing of each person as they experience the impact that illness can have on their way of functioning, socialising normally and ability to cope. Creating the right environment and providing opportunities for patients to talk about how they are feeling is essential in helping them to come to terms with their diagnosis, face their fears, and have those important conversations with loved ones. But it’s even more than that. It’s also about supporting family members and loved ones through this time, so that they and the patient we are caring for, can talk about what needs to be talked about – when they are ready to talk about it. Our Bereavement and Emotional Support Team are part of the whole multi-disciplinary team here at Hospice. And they work alongside us every day, visiting patients on the In Patient Unit and supporting patients and loved ones in the community to provide specialist emotional care and support.
SPIRITUAL CARE IS OFTEN THE MOST CHALLENGING ASPECT OF CARE TO DELIVER AS IT IS SO PERSONAL AND UNIQUE TO EACH INDIVIDUAL.
Spiritual care is recognised as just as important as the other three elements of holistic palliative care. And yet it is often the one in which healthcare professionals have the least experience and training. At Hospice, this is an area that we are increasingly focussing on and I am currently undertaking training as an inter-faith minister in order to better support patients and their families. I would also like to aspire to train the whole team to deliver this care. But let me be clear – spiritual care is not just about religion or faith. It’s about meeting the needs at the core of who a patient is – supporting them as they consider how their illness affects their meaning and purpose in life and what impact this has on them as a person and their goals in life. It can be challenging to assess for spiritual distress and to identify what spiritual care is needed but it is helping patients to find hope and meaning when all plans are thrown out and they’re struggling to answer the question “why me”? No other domain of care addresses this need and, done well, spiritual care can be transformative for a patient, helping them to accept their diagnosis and aiding a peaceful death.
SO WHAT DOES IT TAKE TO DELIVER THIS CARE? IT TAKES A TEAM.
It takes a team that is multidisciplinary, that is constantly learning and upskilling, and that communicates well with each other and with those we care for. It takes a team that will give 100% all of the time and that really wants to be there. It takes a lot of strength to stay in palliative care and so support for staff and reflective practice is essential.
We have this team at Hospice and it is a privilege to work here and to care for those who need us. As a team, we are utterly committed to delivering holistic palliative care because each and every one of us who works here is dedicated to meeting the needs of the whole person so that they can, in every sense, live life to the full.