1. Tan Seng Beng Lecturer in Palliative Medicine University Malaya Medical Center Malaysia Suffering in Palliative Care Patients A Qualitative Study using Grounded Theory

2. Introduction Suffering is a state of severe distress associated with events that threaten the intactness of a person † The study aims to understand the types of suffering and the experiences of suffering in palliative care patients † Cassell EJ. The nature of suffering and the goals of medicine. Oxford University Press 1991

3. Methodology Grounded theory The study is conducted in University Malaya Medical Center From November 2010 to April 2011 Palliative care in-patients > 18 years old Data collection – semi-structured interview Data transcription - verbatim Data analysis – line-by line coding, focused coding, constant comparative analysis

4. Questions Can you tell me about your suffering since you become sick? How has this illness affected you emotionally? How have your family been throughout the illness? How do you find the doctors and nurses here? How is it like staying in the hospital? Can you tell me about your worst part of having the illness?

5. Code definitions Physical suffering – unpleasant physical experience Psychological suffering – unpleasant psychological experience Social suffering – unpleasant social experience Spiritual suffering – unpleasant spiritual experience

6. Core categories conceptualization Attachment-related suffering – unpleasant experience related to what one likes in the form of loss or anticipated loss Aversion-related suffering – unpleasant experience related to what one dislikes in the form of gain or anticipated gain

7. Subcategories conceptualization Attachment-related suffering Loss of physical constituent Loss of physical function Loss of psychological constituent Loss of psychological function Loss of social constituent Loss of social function Loss of spiritual constituent Loss of spiritual function

8. Subcategories conceptualization Aversion-related suffering Gain of physical constituent Gain of physical function Gain of psychological constituent Gain of psychological function Gain of social constituent Gain of social function Gain of spiritual constituent Gain of spiritual function

9. Patient characteristicsNumber of patients (percentage) Total number of patients12 (100%) Sex Male Female 3 (25%) 9 (75%) Age in years Age <50 Age 50-59 Age 60-69 Age ≥70 3 (25%) 4 (33%) 1 (8%) Marital status Single Married 5 (42%) 7 (58%) Disease Breast cancer Stomach cancer Acute myeloid leukemia Lung cancer Renal cell carcinoma Ovarian cancer Spine cancer 4 (33%) 2 (17%) 1 (8%)

10. Attachment-related sufferingAversion-related suffering Physical attachmentPhysical aversion Loss of physical constituent  Loss of financial resources (17%) Loss of physical function Activities of daily living  Loss of ability to walk (33%)  Loss of ability to take care of one own self (25%)  Loss of ability to eat (8%) Instrumental activities of daily living  Loss of ability to take care of one own children (17%)  Loss of ability to cook for family (8%)  Loss of ability to shop for groceries (8%) Leisure activities  Not able to eat at will (25%)  Not able to travel at will (25%)  Not able to move at will (8%)  Not able to stay at home (8%)  Not able to exercise at will (8%)  Not able to do anything (8%) Gain of physical symptoms  Pain (75%)  Vomiting (25%)  Shortness of breath (25%)  Cough (25%)  Tiredness (25%)  Face, hand, or leg swelling (25%)  Diarrhoea (17%)  Difficulty in swallowing (17%)  Giddiness (17%)  Fever (17%)  Loss of appetite (8%)  Fainting (8%)  Sleepiness (8%)  Dry mouth (8%)

11. Psychological attachmentPsychological aversion Loss of mental constituent Pleasant thoughts  Loss of self image (33%)  Loss of confidence (17%)  Loss of freedom (8%)  Loss of the usual self (8%) Pleasant emotions  Loss of happiness (17%) Loss of mental function  Loss of ability to decide (17%)  Loss of ability to think properly (8%)  Loss of memory (8%) Gain of mental constituent Unpleasant thoughts  About illness and treatment (100%)  About suffering (100%)  About loss (92%)  About helplessness (17%)  About worthlessness (8%)  About family suffering (42%)  About being a burden to family (33%)  About healthcare team (67%)  About hospital (67%)  About religion (42%)  About dying (42%) Unpleasant emotions  Sadness (67%)  Fear (58%)  Worry (42%)  Anger (42%)  Loneliness (42%)  Boredom (25%)  Disappointment (17%)  Shock (8%)  Panic (8%)

12. Social attachmentSocial aversion Loss of social constituent  Empathy for family suffering (42%)  Being a burden to family (33%)  Worried about family (25%)  Lack of support from family (25%)  Lack of understanding from family (17%)  Anticipated separation with family (17%)  Lack of support from friends (17%)  Lack of understanding from friends (8%)  Loss of friends (8%) Loss of social function  Loss of ability to work (33%)  Loss of ability to socialize (17%) Gain of social constituent Unpleasant experiences with healthcare team  Lack of consideration (50%)  Lack of information (25%)  Lack of sensitivity (25%)  Lack of accuracy in information (17%)  Lack of attention (17%)  Lack of competency (17%)  Lack of empathy (8%)  Lack of teamwork (8%) Unpleasant experiences in hospital  Hospital admission (42%)  Tubes and lines (25%)  Needles and injection (17%)  Hospital facilities (17%)  Cost of hospital admission and treatment (17%)  Hospital food (8%)  Lack of privacy (8%)

13. Spiritual attachmentSpiritual aversion Loss of spiritual constituent Pleasant spiritual experience  Loss of faith (25%)  Loss of direction (17%)  Loss of hope (17%) Loss of spiritual function  Loss of ability to pray (8%) Gain of spiritual constituent Unpleasant dying experience  Fear of suffering (25%)  Fear of dying (25%)  Fear of a painful death (8%)  Dying with unfulfilled wishes (8%)

14. Physical suffering I kept losing (my function) slowly, bit by bit. First I lost the function of my left arm… (crying)… I just lost my left arm! Slowly, slowly, I couldn’t even walk far (Loss of physical function – loss of ability to walk far). I needed to lie down. Pain was everywhere. Whole day came and suddenly came. Everything just came… non- stop. One by one, it’s attacking me. I know that I’m going to die, but I just don’t want to die like this. Yeah. I am so scared. Every day I am so scared. I just can’t get over it. (I) just can’t get over it.

15. Psychological suffering You get angry (Gain of unpleasant emotion - anger) (and) frustrated. You get scared because nobody can tell you, how long you have left to live. Like, for my case, all I know is it’s a terminal (disease). It’s very advanced. And it’s terminal.

16. Social suffering … (deep breath) (I) feel like always… sorry (for the family) (Loss of social constituent – empathy for family suffering). (They are) already busy but still need to take care of me. Sometime they (are) very tired, so they take turns to take care of me…

17. Spiritual suffering Actually, (I am) not scared (of dying). It is like, I feel like, how to say? Many things, I haven’t done, and then I die. So I feel like, uh… do you know that feeling? Like, actually, it is like many things (I) haven’t done, (haven’t) try, and then, suddenly die (Gain of spiritual constituent – dying with unfulfilled wishes).

18. AttachmentAversion Anticipated gainAnticipated lossGainLoss Actual damagePotential damage Self Resistance Existential suffering

19. Conclusion Suffering is an unpleasant experience caused by resisting actual or potential damage to the self