Abstract
Background
Understanding culture-and sex-related end-of-life preferences is essential to provide quality end-of-life care. We have previously explored end-of-life choices in Saudi males and found important culture-related differences and that Q-methodology is useful in identifying intraculture, opinion-based groups. Here, we explore Saudi females’ end-of-life choices.
Methods
A volunteer sample of 68 females rank-ordered 47 opinion statements on end-of-life issues into a nine-category symmetrical distribution. The ranking scores of the statements were analyzed by averaging analysis and Q-methodology.
Results
The mean age of the females in the sample was 30.3 years (range, 19–55 years). Among them, 51% reported average religiosity, 78% reported very good health, 79% reported very good life quality, and 100% reported high-school education or more. The extreme five overall priorities were to be able to say the statement of faith, be at peace with God, die without having the body exposed, maintain dignity, and resolve all conflicts. The extreme five overall dis-priorities were to die in the hospital, die well dressed, be informed about impending death by family/friends rather than doctor, die at peak of life, and not know if one has a fatal illness. Q-methodology identified five opinion-based groups with qualitatively different characteristics: “physical and emotional privacy concerned, family caring” (younger, lower religiosity), “whole person” (higher religiosity), “pain and informational privacy concerned” (lower life quality), “decisional privacy concerned” (older, higher life quality), and “life quantity concerned, family dependent” (high life quality, low life satisfaction). Out of the extreme 14 priorities/dis-priorities for each group, 21%–50% were not represented among the extreme 20 priorities/dis-priorities for the entire sample.
Conclusion
Consistent with the previously reported findings in Saudi males, transcendence and dying in the hospital were the extreme end-of-life priority and dis-priority, respectively, in Saudi females. Body modesty was a major overall concern; however, concerns about pain, various types of privacy, and life quantity were variably emphasized by the five opinion-based groups but masked by averaging analysis.
Supplementary material
Q-set statements and domains
The final Q-set consisted of 47 statements with eight thematic domains: symptoms and personal control (7), treatment preferences (5), whole-person concerns (8), moment of death (5), family/friends (6), achieving sense of completion/spirituality/religiosity (5), preparation for death (5), and relationship with health care professionals (6). The first three domains are most related to life quality vs quantity concerns, the fourth and fifth to connectedness, the sixth to transcendence, the seventh to coping, and the eighth to information disclosure and decision making. Each statement was randomly assigned a number from 1 to 47.
Life quality vs life quantity
Symptoms and personal control
2. I want to die having no difficulty breathing
7. I want to die free of anxiety
8. I want to die free of pain
9. I want to die free of depression
30. I want to die being able to control my bladder
33. I want to die being able to bathe and feed myself
34. I want to die being able to control my bowels
Treatment preferences
1. I want to have no tubes inserted into my body
6. If I go into coma, I do not want to be placed in an intensive care unit
10. I want to receive all available treatments no matter what the chances of success are
11. I do not want to be kept on life support when there is little hope for a meaningful recovery
12. I want to live longer regardless of my medical condition
Whole-person concerns
27. I want to die being able to communicate with others
31. I want to die at the peak of my life
35. I want to die maintaining my dignity
37. I want to die clean
41. I want to be referred to as a person not as a disease or a number
42. I want to die without having my body exposed
43. I want to die maintaining my sense of humor
44. I want to die well dressed
Connectedness
Moment of death
3. I want to die in the hospital
23. I do not want to die alone
26. I want to die at home
28. I want to have my family/friends with me at my last moments 40. I want to have an Islamic clergy with me at my last moments
Family/friends
13. I want my family/friends rather than my doctor to inform me about my impending death
21. I want my doctor to discuss any concerns relating to my illness and care in the presence of my family
22. I want my medical status to be kept confidential from my family/friends
25. I want to avoid being an emotional burden to my family/friends
29. I want to die knowing that my family/friends are prepared to accept my death
47. I want to avoid being a financial burden to my family/friends
Transcendence
Achieving sense of completion/spirituality/religiosity
24. I want to resolve any conflict before I die
36. I want to die at peace with God
38. I want to die being able to say the statement of faith (shahadah)
39. I want my religious death rituals to be respected
45. I want to avoid being a financial burden to my society
Coping
Preparation for death
14. I want to discuss my fears about dying with my physician
15. I want to discuss my fears about dying with my family/friends
18. If I have a fatal illness, I don’t want to know
32. I want to die instantaneously
46. I want to have my financial affairs in order before I die
Information disclosure and decision making
Relationships with health care professionals
5. I want to receive medical care with compassion
4. I want to receive care from health care professionals whom I religiously trust
16. I want the doctor to inform me about my impending death before informing my family
17. I want to make my own medical decisions
19. I want to have my doctor available to answer my questions
20. I want to receive medical information regularly from medical staff
Acknowledgments
The study was funded by a grant from KFSH&RC to MMH. KFSH&RC had no role in study design; in the collection, analysis, and interpretation of data; in the writing of the manuscript; or in the decision to submit the manuscript for publication. SH is the daughter of MMH.
Disclosure
The authors report no conflicts of interest in this work.