Table 4.

Patients' end-of-life care preferences

QuestionRating, %
Who do you rely on for social and emotional support during your illness and treatments?a
    Hospital support counsellor15.8
    Spiritual advisor13.5
If you are physically or mentally unable to make a decision yourself, who would you choose to make decisions about your medical care for you?a
    Hospital support counsellor4.3
    Spiritual advisor3.1
How do you normally get information that will help you make a personal decision regarding your health/well-being?a
    Specialist (e.g., kidney doctor)79.5
    Family physician65.8
    Paper resources25.7
If you are currently receiving dialysis, do you regret the decision to start dialysis?
If you are currently receiving dialysis, why did you choose dialysis over conservative care (no dialysis)?
    Your doctor's wish51.9
    Your own personal wish34.2
    Your family's wish13.9
How comfortable are you in discussing end-of-life issues with family members?
    Very/somewhat comfortable69.7
    Very/somewhat uncomfortable15.3
How comfortable are you in discussing end-of-life issues with the nephrology staff?
    Very/somewhat comfortable65.6
    Very/somewhat comfortable13.7
Have you thought about what might happen with your illness in the future?
Has your doctor talked to you about how much time you have to live?
Have you completed any of the following?a
    Personal directive38.2
    None of the above22.6
    Health care agent5.7
    Enduring power of attorney38.0
    Don't know2.6
If you have completed an advance directive, what did you request be done in the case that your heart stopped beating?
    Resuscitate (“full code”) (We will restart your heart if possible)36.6
    No resuscitation (“no code”) (We will not try to restart your heart)45.9
    Do not know17.5
There are a number of things doctors can do to try to revive someone whose heart has stopped beating, which usually includes a machine to help breathing. Thinking of your current condition, what would you want your doctor to do if your heart stopped beating?
    Restart my heart, if possible, including using a breathing machine38.9
    Allow me to die–do not try to restart my heart or use a breathing machine35.4
    Don't know18.7
If you had to make a choice at this time, would you prefer a course of treatment that focuses on extending life as much as possible, even if it means prolonging pain and discomfort, or would you want a plan of care that focuses on relieving pain and discomfort as much as possible, even if that means not living as long?
    Relieve pain or discomfort and improve quality of life as much as possible57.2
    Don't know21.1
    Live as long as possible17.8
Where would you prefer to die?
    At home (with a visiting palliative care support team keeping you as comfortable and pain free as possible)36.1
    In a hospice (palliative care) centre with a special focus on keeping you as comfortable and pain free as possible28.8
    Nursing home2.2
During the past 12 months, have you had a discussion with any of the following people about your choices concerning end of your life care?
    I have not had a discussion about these matters during the last 12 months51.9
    Family member or health care proxy32.7
    Kidney doctor (nephrologist)9.9
    Family doctor8.2
    Nurse or other staff person from the dialysis clinic6.3
    Social worker from the dialysis clinic3.4
    Spiritual advisor3.3
    Some other person2.4
    Hospital support counsellor1.5
Which members of the Health Care Team would you like to talk with about end-of-life issues?a
    Kidney doctor (nephrologist)47.6
    Family doctor39.2
    No one16.4
    Spiritual advisor15.9
    Hospital support counsellor14.2
    Social worker12.0
When would you like to have these end-of-life conversations?
    When you become seriously ill or when the needs arises (as defined by your medical team)39.2
    When you specifically request it23.5
    Before you are started on dialysis13.5
    After you start dialysis but before becoming ill10.3
How often would you like to have your end-of-life care plan reviewed?
    Whenever the need arises50.0
    Whenever I ask for this plan to be reviewed22.6
    On a regular basis (i.e., annually, semi-annually)12.3
Where would you like to have these end-of-life discussions?
    In a clinic34.2
    While on dialysis but in a private room29.1
    While on dialysis7.2
  • Where data were missing, percentage was calculated from N = 584.

  • a Patients could specify all that were relevant to them.

  • b Other supports specified by patients included home care staff, dietician, pets, social worker, God, various health organizations (e.g., Canadian Mental Health Association), and themselves.

  • c Other individuals specified by patients included home care staff and attorneys.

  • d Other sources of information specified by patients included clinic staff, nurses, alternative medicine resources, dieticians, and pharmacists.

  • e No other options were specified.

  • f Other individuals specified by patients include family, friends, and home care staff.