Table 5.

Importance of end-of-life care program elements from the patient's perspective

QuestionRating, %
What would you like to see as part of an end-of-life care program for patients dying with kidney disease?
    Education and support for patients and their families47.8
    Greater family involvement in end-of-life care discussions and care45.4
    A greater focus on pain and symptom management42.1
    Education and training for all staff on end-of-life care for kidney failure patients35.1
    Greater physician involvement in end-of-life care discussions and care32.4
    Routine discussions with patients regarding their end-of-life preferences31.7
    Resources available on palliative care options (e.g., pastoral, hospice care)27.2
    Greater involvement of nursing and social work staff in end-of-life care discussions and care22.6
    Use of a palliative care team19.9
    Greater emphasis on spiritual care13.4
    Greater access to hospice services10.6
    Othera2.8
    Annual memorial service for patients who have died2.7
What issues surrounding end-of-life care would you like to know more about?
    Information about the end-of-life process42.3
    Information about palliative care services39.7
    Symptom management (e.g., alleviation of pain)39.2
    Information about hospice29.1
    Financial support for individuals in need25.5
    Availability of services such as counselling, support groups23.8
    Availability of resources specifically in your community21.9
    Conflicting beliefs about care when a cure is no longer possible15.8
  • Results do not include responses that were not applicable or were missing but percentage was calculated from N = 584.

  • a Other end-of-life care aspects specified by patients were burial options and plans, wills, and better emotional and spiritual support.