Core Modules

module 2 | Activity 9: Understanding sources of distress

The Patient Dignity Question (PDQ) is a simple, open-ended question that should be considered when interacting with people affected by life-limiting illness:[1]

“What do I need to know about you as a person to give you the best care possible?”

This question can be used to identify issues and stressors that influence care planning and treatment choices.[1, 2] The intent of the question is to highlight concerns that would not otherwise be revealed and to identify these concerns early in the process.[1, 2]

People affected by life-limiting illness face many losses which can make them distressed and sad.[3-8] Providing people with the chance to express how they feel about their losses and concerns can often help them cope with the physical and psychosocial aspects of their illness.[4] Helping people focus on what is important to them and emphasising what can be done, can also help them to manage these aspects.[1]

A life-limiting illness affects not only the person with the illness but also their family and friends.[4] People with life-limiting illnesses can also become concerned about their appearance and body-image and about changing relationships with those close to them. This includes sexual relationships.

Traditionally, in Western societies, personal issues like spirituality, intimacy and sexuality are not openly discussed. These can be very important to people nearing the end of their life. As a healthcare professional, you need to let people with life-limiting illnesses know that you are prepared to talk with them about any concerns they have about these issues.

The Patient Dignity Inventory (PDI) is an assessment tool that assists with detecting end-of-life dignity-related distress.[9-11] Tools like this can help to identify the particular sources of a person’s distress.[12] This assists caregivers to initiate further conversations, individualise supportive interventions and make referrals for specific needs – remembering that because good end-of-life care occurs with a team of professionals you don’t need to have all the answers, however opening the dialogue is important.[11, 12] The questionnaire is designed to evaluate how a person in your care is coping and helps to identify sources of distress.[11]

  1. Review the Patient Dignity Inventory and list the key sources of distress that are assessed by this tool.
  2. What other strategies can be used to support a person who:
    • Expresses concerns about how their illness has affected relationships with people close to them?
    • Feels the illness is affecting their personal appearance and body image?
  3. What are the potential barriers that can hinder discussions between health professionals and a person with a life-limiting illness about their distress?
  4. What specific open-ended questions can assist with introducing:
    • Spirituality
    • Intimacy
    • Sexuality?

What other strategies can you use to introduce these sensitive issues?

  1. Within the scope of your role, who within the healthcare team could assist you in supporting the person and their family/carers who may describe distress related to spirituality, intimacy or sexuality?
  1. Manitoba Palliative Care Research Unit. Dignity in care. 2016  September 2016]; Available from:
  2. Kennedy, G., The Importance of Patient Dignity in Care at the End of Life. The Ulster medical journal, 2016. 85(1): p. 45-48.
  3. Benkel, I., H. Wijk, and U. Molander, Challenging conversations with terminally ill patients and their loved ones: Strategies to improve giving information in palliative care. SAGE Open Medicine, 2014. 2: p. 2050312114532456.
  4. Therapeutic Guidelines Ltd. Communicating with the patient in palliative care. Palliative Care 2016  [cited 2018 4 July]; eTG July 2017 edition:[Available from:
  5. Rome, R.B., et al., The Role of Palliative Care at the End of Life. The Ochsner Journal, 2011. 11(4): p. 348-352.
  6. World Health Assembly, Strengthening of palliative care as a component of integrated treatment within the continuum of care, W.H. Assembly, Editor. 2014.
  7. Hawley, P., Barriers to Access to Palliative Care. Palliative Care, 2017. 10: p. 1178224216688887.
  8. Moon, P.J., Grief and palliative care: mutuality. Palliative care, 2013. 7: p. 19-24.
  9. Chochinov, H.M., Health care, health caring, and the culture of medicine. Current Oncology, 2014. 21(5): p. e668-e669.
  10. Chochinov, H.M., et al., Eliciting Personhood Within Clinical Practice: Effects on Patients, Families and Health Care Providers. Journal of Pain and Symptom Management, 2014(0).
  11. Di Lorenzo, R., et al., A preliminary study of Patient Dignity Inventory validation among patients hospitalized in an acute psychiatric ward. Neuropsychiatric disease and treatment, 2017. 13: p. 177-190.
  12. Rullan, M., et al., The Patient Dignity Inventory: Just another evaluation tool? Experiences with advanced cancer patients. Palliat Support Care, 2018. 16(1): p. 73-79.