Palliative Care Research
Cross-Cultural Medicine: Dignity
Periyakoil VS, M.D., Kraemer,HC Ph.D., and Noda A, M.S. Creation and the Empirical Validation of the Dignity Card-Sort Tool To Assess Factors Influencing Erosion of Dignity at Life's End
Patients often experience erosion of dignity as they cope with the dying process. Preserving patient dignity is a sentinel premise of palliative care. This study was conducted to gain a better understanding of factors influencing erosion of dignity at the end of life. We conducted an open-ended written survey of 100 multidisciplinary providers (69% response rate) and responses were categorized to identify 18 themes that were used to create a card-sort tool. The initial 18-item tool was administered to nurses (n 83), nonhospice community-dwelling subjects (n 190) and hospice patients (n 26) and a principal component analysis (PCA) was used to identify the 6 primary factors. The key item in each factor as identified by the PCA was used to create the final 6-item dignity card-sort tool (DCT). The DCT was also administered to physicians caring for palliative care patients (n 21). For each of the final 6 items, the correlation between the respondents (nurses, physicians, nonterminally ill subjects, and subjects receiving hospice care) was calculated using the Spearman's correlation coefficient. The nurses were very highly positively correlatedwith the physicians (correlation coefficient 0.94) and the community dwelling nonterminally ill subjects were highly positively correlated with the subjects receiving hospice care (correlation coefficient 0.67). More importantly, both the nurses and physicians were negatively correlated with both community dwelling nonterminally ill subjects and the subjects receiving hospice care. The health professionals in the study felt that treating a patient with disrespect and not carrying out their wishes resulted in erosion of dignity. In contrast patients thought that poor medical care and untreated pain were the most important factors leading to erosion of dignity at life's end. The DCT is a promising tool that may help clinicians identify key factors resulting in perceptions of erosion of dignity in adult palliative care patients.
(In press, Journal of Palliative Medicine, 2009)
Dignity card sort tool user instructions:
Please take a set of eight identical 4x6 size index cards. Listed below is the tool trigger question, the six items in the final tool. Write one item per card. Keep the cards that state "most important factor" and "least important factor" separately. Shuffle the other six cards a few times to create a random order.
Instruct the subject to rank (stack) the six cards in the order of importance with the most important factor to be placed first, the next one second and so on. Finally instruct the subject has to place the card that states "Most Important Factor" on the top of the stack and the card that states "Least Important Factor" at the bottom of the stack and hand it to the health professional. Care should be taken not to misplace the "Most Important Factor" and the "Least Important Factor" cards as this will lead to errors.
Question: In your opinion, when does a dying patient lose dignity?
- Most important factor
- Least important factor
- When others treat her/him without respect
- When her/his wishes are not carried out
- When s/he is medically mismanaged
- When s/he loses ability to choose
- When s/he feels ashamed
- When s/he dies in pain
Please note the patient's preferred ranking order and then consider asking exploratory questions about each of the items as appropriate {e.g. What can clinicians do to demonstrate respect to you?} and note down the patient's responses. Susbequent care given to the patient should be responsive to the patient's stated wishes and designed to optimize patient's sense of dignity.
