Chair, Canadian Virtual Hospice Member of the Canadian Virtual Hospice Executive Committee Member of the National Advisory Committee
The Patient Dignity Inventory: A Novel Way of Measuring Dignity-Related Distress in Palliative Care

Authors: Chochinov HM1,2, Hassard T1, McClement S1,2, Hack T1, Kristjanson LJ3, Harlos M1,4, Sinclair S5,6, Murray A7

Affiliations: 1. University of Manitoba; 2. Manitoba Palliative Care Research Unit, CancerCare Manitoba; 3. Curtin University of Technology, Perth, Australia; 4. St. Boniface General Hospital, Winnipeg; 5. Tom Baker Cancer Centre; 6. University of Calgary; 7. Calgary Health Region

Source: Journal of Pain and Symptom Management. 2008;36(6):559-571.

What we did: Our research team developed a novel self-report distress measure, based on empirical work we have done on the issue of dignity within the context of palliative care.

Why we did this: Patients with life threatening or life limiting conditions can experience a variety of kinds of physical, psychological, psychosocial, existential and spiritual distress. The more health care providers are aware of this distress, the more likely they are able to respond to it. While some kinds of distress are more obvious than others, they can all contribute to the patient’s overall sense of suffering. Therefore, we thought it important to develop a tool that could be easily administered (either as a self report or an instrument that could be read aloud), that would be brief; that would quantify the extent to which the patient felt any aspect of their distress was a problem and that would cover a broad spectrum of distress commonly seen within this clinical setting.

How we did this: Our research team has extensively studied the issue of dignity and palliative care.1-3 Based on these studies, we published a model of dignity in the terminally ill, which summarizes many different areas that might influence a patient’s sense of dignity.4 The model consists of three major themes including illness related concerns, the dignity conserving repertoire and the social dignity inventory. This model provided the basis for a 25-item instrument, with each item corresponding to a major model theme or sub-theme. Each item, for example ‘feeling a burden to others’ was designed to be rated on a five-point scale (1=not a problem; 2=a slight problem; 3=a problem; 4=a major problem; 5=an overwhelming problem).

After extensive feedback from professionals and patients alike, this instrument, coined the Patient Dignity Inventory (PDI) was formally test in a group of 253 patients receiving palliative care in Winnipeg, Calgary and Perth, Australia. Patients were asked to complete the PDI along with several other measures in order to establish its reliability, its validity and its factor structure (i.e. the main, broad areas of distress that this instrument is able to capture).

What we found: We found that the PDI was readily understood and easily completed (with or without assistance) by patients receiving palliative care. The PDI appears to consist of five main factors. These include:

  • Symptom distress: primarily addressing physical as well as psychological matters.
  • Existential distress: includes feeling a burden, loss of meaning and purpose, no longer feeling ‘like who I was’ and not feeling worthwhile or valued.
  • Dependency: not being able to perform tasks of daily living, attend to bodily functions and reduced privacy.
  • Peace of mind: unlike existential issues, peace of mind includes items that not even death itself might be anticipated to resolve i.e. feeling one has not made a meaningful contribution, unfinished business or spiritual concerns.
  • Social support: pertaining to feeling supported by friends, family, health care providers or being treated with respect.

Further statistical testing also established that the PDI is reliable and valid (that is, it measures the kind of distress it purports to measure).

Why might this study matter: Improving palliative care depends on being able to understand, recognize and respond to patient distress. The Patient Dignity Inventory represents a novel way to enable each of these important goals. It offers a way for patients to disclose their distress, rate it and perhaps even initiate a conversation about what they are feeling. The fact that each of the 25-items are based on previous patient data regarding what can affect sense of dignity helps explain this instruments breadth and scope, as well as its suitability for this patient population.

What are our next steps: This Exchange article reports on one study establishing the psychometric properties of the PDI. Obviously, further testing and refining of this instrument are required. While our own experience amongst well over 500 patients has been overwhelmingly positive, other clinicians will now have the opportunity to try the PDI and form their own opinions about how it might inform their care.

We currently have funding from the Canadian Cancer Society/National Cancer Institute of Canada to carry out some further testing. One-hundred thirty psychosocial oncology clinicians from across the country are now enrolled in a study to see how the PDI might apply to their practice and how the information this yields informs the work they do.

Exchange author information: Dr. Harvey Max Chochinov. Director, Manitoba Palliative Care Research Unit. Distinguished Professor of Psychiatry, University of Manitoba. Canada Research Chair in Palliative Care. CancerCare Manitoba 3017-675 McDermot Avenue. Winnipeg. R3E 0V9
harvey.chochinov@cancercare.mb.ca.



References

  1. Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M. Dignity in the terminally ill: a cross-sectional, cohort study. Lancet. 2002;360:2026-30
  2. Chochinov HM. Dignity Conserving Care: A New Model for Palliative Care. JAMA. 2002;287:2253-2260.
  3. Chochinov HM. Dignity and the essence of medicine: the A, B, C and D of Dignity Conserving Care. British Medical Journal. 2007;335(7612):184-187.
  4. Chochinov HM, Hack T, McClement S, Harlos M, Kristjanson L. Dignity in the Terminally Ill: A Developing Empirical Model. Social Science and Medicine. 2002;54:433-443.
  5. Chochinov HM, Hassard T, McClement S, Hack T, Kristjanson LJ, Harlos M, Sinclair S, Murray A. The Patient Dignity Inventory: A Novel Way of Measuring Dignity-Related Distress in Palliative Care Journal of Pain and Symptom Management. 2008;36:559-571.