Table 4.
Patients' end-of-life care preferences
| Question | Rating, % |
|---|---|
| Who do you rely on for social and emotional support during your illness and treatments?a | |
| Family/friends | 89.0 |
| Physician | 55.3 |
| Nurse | 51.4 |
| Hospital support counsellor | 15.8 |
| Spiritual advisor | 13.5 |
| Otherb | 5.3 |
| 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 | |
| Family/friends | 89.2 |
| Physician | 35.6 |
| Nurse | 10.8 |
| Hospital support counsellor | 4.3 |
| Otherc | 3.4 |
| Spiritual advisor | 3.1 |
| 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 physician | 65.8 |
| Family/friends | 43.8 |
| Paper resources | 25.7 |
| Internet | 16.1 |
| Television/media | 12.8 |
| Otherd | 5.5 |
| If you are currently receiving dialysis, do you regret the decision to start dialysis? | |
| Yes | 60.7 |
| No | 39.3 |
| If you are currently receiving dialysis, why did you choose dialysis over conservative care (no dialysis)? | |
| Your doctor's wish | 51.9 |
| Your own personal wish | 34.2 |
| Your family's wish | 13.9 |
| How comfortable are you in discussing end-of-life issues with family members? | |
| Very/somewhat comfortable | 69.7 |
| Unsure | 11.0 |
| Very/somewhat uncomfortable | 15.3 |
| How comfortable are you in discussing end-of-life issues with the nephrology staff? | |
| Very/somewhat comfortable | 65.6 |
| Unsure | 15.4 |
| Very/somewhat comfortable | 13.7 |
| Have you thought about what might happen with your illness in the future? | |
| Yes | 82.7 |
| Has your doctor talked to you about how much time you have to live? | |
| No | 90.4 |
| Have you completed any of the following?a | |
| Will | 67.3 |
| Personal directive | 38.2 |
| None of the above | 22.6 |
| Health care agent | 5.7 |
| Enduring power of attorney | 38.0 |
| Don't know | 2.6 |
| 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 know | 17.5 |
| 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 machine | 38.9 |
| Allow me to die–do not try to restart my heart or use a breathing machine | 35.4 |
| Don't know | 18.7 |
| 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 possible | 57.2 |
| Don't know | 21.1 |
| Live as long as possible | 17.8 |
| 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 possible | 28.8 |
| Hospital | 27.4 |
| Othere | 5.0 |
| Nursing home | 2.2 |
| 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 months | 51.9 |
| Family member or health care proxy | 32.7 |
| Kidney doctor (nephrologist) | 9.9 |
| Friend | 8.7 |
| Family doctor | 8.2 |
| Nurse or other staff person from the dialysis clinic | 6.3 |
| Social worker from the dialysis clinic | 3.4 |
| Spiritual advisor | 3.3 |
| Some other person | 2.4 |
| Hospital support counsellor | 1.5 |
| 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 doctor | 39.2 |
| Nurse | 20.2 |
| No one | 16.4 |
| Spiritual advisor | 15.9 |
| Otherf | 15.1 |
| Hospital support counsellor | 14.2 |
| Social worker | 12.0 |
| 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 it | 23.5 |
| Before you are started on dialysis | 13.5 |
| After you start dialysis but before becoming ill | 10.3 |
| How often would you like to have your end-of-life care plan reviewed? | |
| Whenever the need arises | 50.0 |
| Whenever I ask for this plan to be reviewed | 22.6 |
| On a regular basis (i.e., annually, semi-annually) | 12.3 |
| Other | 1.7 |
| Where would you like to have these end-of-life discussions? | |
| In a clinic | 34.2 |
| While on dialysis but in a private room | 29.1 |
| While on dialysis | 7.2 |
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.