Palliative care with empathy and expertise
Gesa Betcke
January 29, 2024
15 min
Dear Gesa, can you start by telling us something about the principles of palliative care and where the name comes from?
Palliative care is a comparatively young field of medicine. Although palliative approaches have been used in hospitals in the past, this specialist area, which has now been recognised as an independent discipline in internal medicine for around 20 years, has only recently become established. The origins of palliative care lie in England. Cicely Saunders (1918-2005) is regarded as the pioneer of palliative care. She formulated the guiding principle: "It is not a question of giving life more days, but of giving days more life." The term "palliative" is derived from the Latin "palliare - to cover with a cloak". The aim of palliative medicine is to alleviate the consequences of an illness (palliation) when there is no longer any prospect of a cure. Patients are recognised and treated holistically by an interprofessional team.
Let's look at this holistic approach to patient care: How do you go about it?
We use what is known as the SENS model in order to be able to recognise patients holistically. The "S" stands for symptom management, a central theme in palliative care. This involves coping with pain, nausea, weakness, loss of appetite and the promotion of self-help. The "E" stands for decision-making, which means that we define and plan goals and priorities together with the patient. We also record preventive measures for possible complications such as pain breakthrough, haemorrhaging, sudden comatose states or breathing difficulties. The "N" in the SENS model stands for network, which means the development of a comprehensive care network involving all those involved, such as relatives, Spitex and Palliative Spitex. Roundtable discussions in which doctors, nursing staff, relatives, patients and, if necessary, social workers jointly define goals are essential here. Finally, there is the "S" for support, i.e. support for relatives whenever possible, even after death. Support from psycho-oncologists and/or counsellors can be considered here.
Can you give me some examples of patients who have benefited from palliative care?
We admit around 345 patients to our palliative care ward every year, around 125 of whom die. Our patients are chronically ill, critically ill and dying people. I would say that around 70 per cent of admitted patients suffer from oncological diseases. However, we also have cases of terminal heart or kidney failure, followed by lung diseases, such as COPD or COVID diseases in connection with an existing lung condition. New additions include patients with liver cirrhosis due to alcohol or drug abuse. Our daily work focuses on alleviating suffering on various levels (psychological, physical, spiritual and social). Our patient groups may have different complaints, but they are all at a crucial point: the question is always "what happens next" and "what does the necessary symptom management look like".
What special features and services does our specialised palliative care ward offer?
Interprofessional collaboration is a very important topic for us. We have a "Pall-Rapport" once a week, where senior physicians, assistant physicians, nursing, physiotherapy, occupational therapy, social work, nutritional counselling, pastoral care and psycho-oncology sit together and determine the therapy goal. There is a lively and respectful exchange for the benefit of the patients.
We also have a very good and close working relationship with our permanently assigned volunteers, who are firmly integrated into our team and are also greatly appreciated by the patients. I really appreciate my volunteers. They are all such seasoned and down-to-earth ladies. One of them gives foot reflexology massages in a skilful manner, others engage in conversations about life or everyday matters that are often neglected in hospital.
Then we always have our photo therapist on the palliative care ward on Tuesdays. Her artistic work is considered pioneering in the field of palliative care. Together with the patients, she does biographical work using pictures and photos. She listens to the information to find out what the patients like or what has become dear to them. She then selects suitable pictures, which we print out and hang up for the patients in their hospital room.
We also have two social dogs, an Australian Shepperd and a poodle, who visit us on the palliative care ward accompanied by their owner. It is a novelty that the dogs are allowed into the hospital. There are a few hygiene rules and the selected dogs are labelled with a sign on their collar saying "I am welcome". It is very important for our patients to simply stroke something warm, furry and cuddly. It does them good and makes them happy. Sometimes the therapist jokes that she also comes for us staff - the dog is greeted and stroked happily on the way to the hospital.
We also offer therapeutic laying on of hands. The laying on of hands is carried out by trained people and is a gesture of human affection through attentive touch. This kind of respectful attention is greatly appreciated by patients.
We also have music therapy. The music therapist goes from room to room with her trolley, loaded with various instruments and sounds, and plays music for or with the patients. I really enjoy listening to the sounds myself. They also have a pleasant and calming effect on me.
Relatives often play an important role in the process of accompanying patients in palliative care. How do you experience this?
There is sometimes a certain amount of resistance at the beginning - they are going to the palliative care ward and the relatives don't quite know what to expect. These feelings often disappear quite quickly because they realise that we take time for them and ask them how they are doing in this whole situation. They often say, surprised and relieved, "You're the first person to ask me that", as questions are usually addressed directly to or about the patient.
We work very closely with the relatives and they have the opportunity to stay with us on our ward 24 hours a day and spend the night here. Sometimes they even want to take over part of the care and we support them in this. This creates close contact, which is strengthened by the familiarity of our relatively small ward. The relatives are the patients' carers and sometimes we reach the patients via their relatives or we even manage to get them to discuss certain issues or uncertainties with each other.
It's like being in a different world here, it's calm and relaxed, you feel safe and you realise that we really try to make a lot of things possible.
Can you share an inspiring story with us that shows how palliative care has influenced the life of a patient and his or her family?
For me, palliative care is like a puzzle made up of many pieces, with glimpses of light and moments of happiness when patients suddenly smile again because they are pain-free, or they can talk again because we were able to treat the nausea. A special moment can be when we make it possible for a patient to lie in bed in the garden outside and enjoy nature - these are the many things that we try to make possible and that make up the puzzle.
Once we even organised a wedding at the Susenberg Clinic: a young patient, who had a small child, got married in the clinic. We were all there and did her make-up, dressed her up and helped celebrate. She died a week later. It was our attempt to make dreams come true.
There are patients you don't forget and sometimes they are sad memories, but the memories are there. For example, a young patient with a brain tumour died once, whose mother comes by every year on the anniversary of his death and brings flowers and a little chocolate, which is touching.
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