Text: Shirley Haasnoot | Photos: David Meulenbeld
Jacco Besteman, head nurse in the haematology department at Amsterdam UMC, talks about a patient who was admitted five years ago with acute leukaemia. He was a pilot, a young man, and his life was completely turned upside down. Besteman suggested meditating together, during which he would play a handpan, a dish-shaped percussion instrument sometimes used in meditation or yoga. His patient was sceptical at first but agreed to try. ‘Eventually, he was in a completely different world where he could find peace. Afterwards, he could see his situation in a different light.’
Mindfulness and meditation have been used occasionally for years to support patients with haematological conditions. These diseases of the blood, bone marrow, and lymph nodes, such as leukaemia and lymphoma, are life-threatening and often affect young people. The treatment is curative, aimed at recovery, but patients must undergo an intensive regimen of chemotherapy, stem cell transplants, immunotherapy, or the relatively new CAR-T treatments, which utilise the immune system. If they respond well, patients usually remain under monitoring for years.
‘Often the people who come in have become critically ill overnight’
‘Such treatment is very technical; it is truly the pinnacle of human capability,’ says Femke Stock, who works as a spiritual caregiver in the haematology department with colleague Maria Berends-van Hoek. ‘Patients sometimes stay here for months, which is exceptional in a hospital. Often the people who come in have become critically ill overnight. And it remains very uncertain for a long time whether they will survive and if the gruelling treatment they must endure will be worthwhile.’
‘Our patients cannot see their illness; it is in their blood’
'Our patients cannot see their illness; it is in their blood,’ says Stock. ‘That is very intangible and can have an alienating effect. Through mindfulness, body-focused exercises, and touches like massages, they can sometimes reconnect with their bodies.’ Berends-van Hoek adds, ‘We do not pretend that their treatment will become easier. But perhaps our exercises help to view the illness differently.’
Since the beginning of this year, Besteman, Stock, and Berends-van Hoek, along with intern Melanie Bonsel and project leader Lenneke Post, have been researching how mindfulness exercises can be systematically used to help patients in the haematology department. ‘Because we can see that it has an effect,’ says Besteman. ‘It helps people in difficult times, when contemplating significant life questions, to find more peace and better control their emotions.’
Mindfulness is an eight-week training course practised worldwide. People learn to live in the here and now and to focus on things as they are, without judging them. These can be emotions and thoughts, or sensory experiences. Berends-van Hoek explains, ‘Many of our patients are admitted here for three or four weeks and sometimes return later in the treatment. What we want to offer them as support are mindfulness-based exercises such as breathing techniques. We also draw from other non-religious meditative forms.’
‘Perhaps this reduces the need for sleep medication or stress-relief drugs’
Besteman says, ‘There are many different ways to reduce tension and organise your thoughts. And who knows, maybe this reduces the need for sleep medication or stress-relief drugs.’
Sometimes people do not want to talk or are too ill to do so, Berends-van Hoek shares. ‘It is very helpful to then do breathing or relaxation exercises with them, to give feelings or thoughts room in that way.’ She mentions the body scan, an exercise where you concentrate on all parts of your body, starting with your big toes. ‘By being very consciously aware of your body, there is no time to worry. That can be a liberating experience.’
The research group is currently inventorying existing knowledge about the use of mindfulness in haematology patients. For instance, Melanie Bonsel, a trainee spiritual caregiver, is conducting ten interviews at various healthcare institutions. Berends-van Hoek and Stock maintain a logbook in a computer file where they note which mindfulness exercises they use and why, and how patients respond. The aim is that by the end of the two-year project, it will be clear which exercises work best to help haematology patients through difficult periods.
‘Spiritual care has always been a given for VU Amsterdam’
Berends-van Hoek says, ‘Unlike many other university hospitals, spiritual care has always been a given for VU Amsterdam.’ Stock adds, ‘It is still in the organisation’s vains.’
