Tan Seng BengLecturer in Palliative Medicine

University Malaya Medical Center

Malaysia

Suffering in Palliative Care PatientsA Qualitative Study using Grounded

Theory

IntroductionSuffering 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

MethodologyGrounded theoryThe study is conducted in University

Malaya Medical CenterFrom November 2010 to April 2011Palliative care in-patients > 18 years oldData collection – semi-structured interviewData transcription - verbatimData analysis – line-by line coding, focused

coding, constant comparative analysis

QuestionsCan 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?

Code definitionsPhysical suffering – unpleasant physical

experiencePsychological suffering – unpleasant

psychological experienceSocial suffering – unpleasant social

experienceSpiritual suffering – unpleasant spiritual

experience

Core categories conceptualizationAttachment-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

Subcategories conceptualizationAttachment-related suffering

Loss of physical constituentLoss of physical functionLoss of psychological constituentLoss of psychological functionLoss of social constituentLoss of social functionLoss of spiritual constituentLoss of spiritual function

Subcategories conceptualizationAversion-related suffering

Gain of physical constituentGain of physical functionGain of psychological constituentGain of psychological functionGain of social constituentGain of social functionGain of spiritual constituentGain of spiritual function

Patient characteristics Number of patients (percentage)Total number of patients 12 (100%)Sex Male Female

3 (25%)9 (75%)

Age in yearsAge <50Age 50-59Age 60-69Age ≥70

3 (25%)4 (33%)4 (33%)1 (8%)

Marital statusSingle Married

5 (42%)7 (58%)

Disease Breast cancerStomach cancerAcute myeloid leukemia Lung cancerRenal cell carcinomaOvarian cancerSpine cancer

4 (33%)2 (17%)2 (17%)1 (8%)1 (8%)1 (8%)1 (8%)

Attachment-related suffering Aversion-related sufferingPhysical attachment Physical aversionLoss of physical constituentLoss of financial resources (17%)Loss of physical function Activities of daily livingLoss 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 activitiesNot 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 symptomsPain (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%)

Psychological attachment Psychological aversionLoss of mental constituentPleasant thoughtsLoss of self image (33%)Loss of confidence (17%)Loss of freedom (8%)Loss of the usual self (8%)Pleasant emotionsLoss of happiness (17%)Loss of mental functionLoss of ability to decide (17%)Loss of ability to think properly (8%)Loss of memory (8%)

Gain of mental constituentUnpleasant 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 emotionsSadness (67%)Fear (58%)Worry (42%)Anger (42%)Loneliness (42%)Boredom (25%)Disappointment (17%)Shock (8%)Panic (8%)

Social attachment Social aversion

Loss of social constituentEmpathy 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 functionLoss of ability to work (33%)Loss of ability to socialize (17%)

Gain of social constituentUnpleasant 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 hospitalHospital 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%)

Spiritual attachment Spiritual aversion

Loss of spiritual constituentPleasant spiritual experienceLoss of faith (25%)Loss of direction (17%)Loss of hope (17%)Loss of spiritual functionLoss of ability to pray (8%)

Gain of spiritual constituentUnpleasant dying experience Fear of suffering (25%)Fear of dying (25%)Fear of a painful death (8%)Dying with unfulfilled wishes (8%)

Physical sufferingI 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.

Psychological sufferingYou 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.

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…

Spiritual sufferingActually, (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).

Attachment Aversion

Anticipated gain

Anticipated loss

GainLoss

Actual damage

Potential damage

Self

Resistance

Existential suffering

ConclusionSuffering is an unpleasant experience

caused by resisting actual or potential damage to the self