Layering the CALM self/proxy expressive psychotherapy intervention on to palliative care services to improve end of life care experiences for patients their families – lessons from Uganda
If I am bed bound, cannot leave the house and are having this symptom distress then life has no meaning. CALM participant
We are here to work with you and your family to give this a positive turn to give life meaning. CALM therapist
Advanced incurable disease comes with may complexities which range from distressing physical symptoms, loss of meaning of life, existential questions for which answers may or may not be provided, anxiety of dealing with the end and how to plan for the fragile future. If anything, this kind of crisis pushes care providers to think outside the box and find novel ways to suppor patients and families to find meaning amidst the chaos, to cope positively with the circumstances, achieve comfort and to live well. A comprehensive response that addresses all these complexities must draw from the expertise of a multi-disciplinary team.
The African Palliative Care in partnership with Kitovu Mobile and St Francis Naggalama hospital took the challenge and develop a novel approach to delivering such complex care, which had to be as patient-centred as possible. We drew on evidence gathered on needs and concerns of people with advanced disease in Uganda and Kenya, and from patient and bereaved caregivers’ views on what a good death is, and from literature review of available models of care that suit our context. We concluded that CALM (which means Managing Cancer and Living Meaningfully) was a good fit, and adapted it using input from patients and families to suit a broader population of people living with advanced disease. In 2022, with support from the Global Institute for Psychosocial, Supportive and End of Life care (GIPPEC), 45 palliative care professionals from 12 African countries had attended a workshop on how to use CALM. This is a supervised intervention, which is delivered by trained health professionals. It is comprised of 4 modules, and we delivered one module per month to the patient and their caregiver. It uses supportive expressive therapy covering the following domains
- Symptom management and communication with care providers
- Self-concept and relationship with close others
- Spirituality and sense of meaning
- Thoughts fears and hopes about mortality
We used CALM with 40 families facing advanced disease in Uganda and here is what we have learned.
The use of supportive expressive therapy gives care providers an opportunity to know their patients well enough and support them holistically. This alleviates worry, anxiety, spiritual and psychological distress and improves symptom management outcomes. What matters to them at such fragile times is so personal and therefore expressive therapy helps, they speak out, we listen and act as a team. This makes the care more aligned to the needs, decision making power is shared and we win as a team. One of the CALM therapist noted that it so useful in helping patients and families understand their goals of care (to relieve symptoms and support quality well-being), this was often not well explained when most of them were sent home (because curative treatments were no longer useful for the patient). They thought that they had been sent home to die or that the curative care providers were only getting rid of them to create room for promising patients. This points to the commonly unmet need for information and communication.
The key lesson here is to use a structured approach to first know about the history of the patient and then ask these simple but important questions like;
- What is important to you now?
- What would you like to know?
- Tell me what you know about your goals of care?
- Is there anything else you would like to know about the goals of care?
- How can I support you?
In most cases when patients are sent home or referred to palliative care services, they think they have been sent home to die. Through CALM therapy, many appreciated the opportunity to have an open conversation to help them understand what was going, the new goals of treatment and the expected outcomes, this alleviated their worry and anxiety. Many patients confessed that this was reasonable because the curative treatment was no longer yielding positive returns in curing the disease. So, what is the missing ingredient? Effective communication and provision of information that can be understood.
Even the caregivers appreciated the opportunity to learn more about what they were dealing with and make informed decisions that prioritise comfort, compassion and symptom management to improve end of life care experiences and quality of life. CALM therapist
On the side of patients and families, they appreciated CALM as an approach that brings them closer to health professionals and creates a friendship alliance, which we need to care better and effectively. They can ask questions about their concerns and worries and get the answers, which empowers them to support each other better.
No one has even given me such an audience to express myself about my pressing needs, what is bothering me most or even what I need to know. When I understand things, I am less anxious, and I can make better decisions. I feel much better, my family relations are better, and my pain was understood and treated. I can sleep well; I feel happy despite the dilemma. CALM participant
“One of the things that give me pleasure is the discussion during the CALM sessions; it’s a source of hope and relief from stress. I feel happy and secure, who am I to have an immediate health worker who treats me and I can disclose to them freely.” CALM participant
“How would I have known to take care of the patient well if you did not come to visit us and provide information about our patient’s condition?” “I wish you had started this service earlier; my mother would not have reached this stage.” – CALM participant.
What are the lessons here- give patients and their families to express themselves using short open-ended questions. Take the courage to be led by them, the care plan should be aligned to their needs and concerns, seal this with a layer of compassion and together we can make our patients and families matter until and beyond the end of life. Listen, listen and listen then ask fewer useful questions.
The African Palliative Care thanks the Irish Hospice Foundation, the patients, their families and care providers for participating in the better end of life care initiative.
Leave a Reply