Dr Tan Seng Beng of the University Malaya Medical Centre in Kuala Lumpur writes about the experience of suffering in palliative care patients. <br />

Introduction

The understanding of suffering is of prime importance in medicine. Patients seek medical attention because they suffer. They hope that their suffering can be relieved in the medical encounter. This relief of suffering is not only a central goal of palliative care but also of medicine. But despite its importance, the understanding of suffering continues to receive relatively little attention in the clinical encounter. In the case notes, suffering of patient is seldom mentioned as a diagnosis. In the medical curriculum, medical students are not taught how to diagnose and manage suffering. In research, literature on suffering and quality of life is scarce when compared to literature on diseases and drugs. These gaps drive us to conduct a series of research to gain a deeper understanding of suffering in palliative care. Based on a study, an existential-experiential model of suffering was developed. This model can serve as a complement to the existing biopsychosocial-spiritual model in understanding and managing suffering. 

The existential-experiential model of suffering 

The existential-experiential model of suffering was conceptualized from thematic analysis. This model is represented by six types of existential suffering and four types of experiential suffering as followed: 

(1) Existential suffering     

• Differential suffering – suffering related to change and loss
• Dependent suffering – suffering related to depending on others
• Empathic suffering – suffering related to feeling other’s suffering
• Terminal suffering – suffering related to a terminal disease
• Interactional suffering – suffering related to interactions with the health care staff
• Environmental suffering – suffering related to hospital stays 

 (2) Experiential suffering

• Sensory suffering – suffering related to physical symptoms
• Emotional suffering – suffering related to emotions
• Cognitive suffering – suffering related to thinking
• Spiritual suffering – suffering related to unmet spiritual needs 

Recommendations 

From the study, in the assessment of suffering, an approximate 20-minute patient-centred interview is adequate in diagnosing salient suffering of most palliative care patients. Next, based on this existential-experiential model, a mechanism-based two dimensional approach can be used in the management of the relevant suffering. Examples are given below:

• Differential suffering – rehabilitation
• Dependent suffering – functional support
• Empathic suffering – family support
• Terminal suffering – disease-specific treatment
• Interactional suffering – communication training of medical staff
• Environmental suffering – patient-centred hospital design
• Sensory suffering – symptom control
• Emotional suffering – empathy training of medical staff
• Cognitive suffering – cognitive reframing
• Spiritual suffering – spiritual support

Furthermore, the separation of existential and experiential suffering enables a flexible approach in the management of suffering in terminal illness. If the existential realities cannot be rectified, then more effort should be put on addressing the experiential dimension, such as intensive symptom control for sensory suffering and various psycho-spiritual supports for the emotional, cognitive and spiritual reactions triggered by the sensory perceptions. In simple terms, when the external realities in life are unchangeable, we can still change how we react to these realities. Because of this, we have developed two mindfulness-based approaches that may help in the management of palliative care suffering by targeting these reactions, as followed: 

(1) Mindfulness-based Supportive Therapy (MBST)– therapist-dependent

• Mindful presence
• Mindful listening
• Mindful empathy
• Mindful compassion
• Mindful reflection 

(2) Mindfulness-based Existential-Experiential Therapy (MBET) – patient-dependent

• Mindful existential-experiential awareness
• Mindful existential-experiential transformation 

As a non-reactive present-moment practice, I have a strong belief that incorporating mindfulness in the management of suffering in palliative care can be of great help. Even in complicated cases when patient’s suffering is refractory to all interventions, mindfulness can still help the clinician to remain calm to see the clear picture and choose how to continue to help, sometimes purely in the form of mindful presence. 

Conclusion 

While understanding disease of a patient gives health care professionals a part of the medical puzzle, understanding suffering of that person enables us to see the whole picture. Therefore, seeing the whole picture from multiple angles of the existential and experiential dimension of suffering may allow us to tailor our management to the needs of patients. Last, I wish that health care professionals can pay more and more attention on understanding suffering whether in the clinical encounter, medical teaching or research; and develop more and more ways to relieve or transform suffering in palliative care, and in medicine.