Table 4. Patients’ end-of-life care preferences, n (%).
| Who do you rely on for social and emotional support during your illness and treatment?* | |
| Family/friends | 360 (85.1) |
| Doctor | 54 (12.7) |
| Nurse | 32 (7.6) |
| Hospital support counselor | 19 (4.5) |
| Spiritual advisor | 24 (5.7) |
| Others | 25 (5.9) |
| If you are physically or mentally unable to make decisions for yourself, who would you choose to make medical decisions for you?* | |
| Family/friends | 363 (85.8) |
| Doctor | 35 (8.3) |
| Nurse | 14 (3.3) |
| Hospital support counselor | 7 (1.6) |
| Spiritual advisor | 9 (2.1) |
| Others | 20 (4.7) |
| How do you normally get information that will help you make a personal decision about your health/well-being?* | |
| Specialist (e.g., kidney doctor)? | 242 (57.2) |
| Family physician | 145 (34.3) |
| Family/friends | 103 (24.3) |
| Paper resources | 27 (6.4) |
| Internet | 45 (10.6) |
| Media/TV | 14 (3.3) |
| Other | 19 (4.5) |
| If you are currently receiving dialysis, why did you choose dialysis over conservative care (no dialysis)? | |
| Your doctor’s wish | 190 (44.9) |
| Your own personal wish | 162 (38.3) |
| Your family’s wish | 32 (7.6) |
| Don’t know/No response | 39 (9.2) |
| If you are currently receiving dialysis, do you regret the decision to start dialysis? | |
| Yes | 80 (18.9) |
| No | 315 (74.5) |
| Don’t know/No response | 28 (6.6) |
| Are you comfortable discussing end-of-life care issues with your family members? | |
| Yes | 300 (70.9) |
| No | 39 (9.2) |
| Don’t know/No response | 84 (19.8) |
| Are you comfortable discussing end-of-life care issues with the nephrology staff? | |
| Yes | 267 (63.1) |
| No | 72 (17) |
| Don’t know/No response | 84 (19.9) |
| Have you thought about what might happen with your illness in the future? | |
| Yes | 284 (67.1) |
| No | 119 (28.1) |
| Don’t know/No response | 20 (4.7) |
| Has your doctor talked to you about how much time you have to live? | |
| Yes | 45 (10.6) |
| No | 352 (83.2) |
| Don’t know/No response | 26 (6.1) |
| During the past 12 months, have you had a discussion with any of the following people about your choices concerning end-of-life care?* | |
| I have not had a discussion about these matters during the last 12 months. | 222 (52.5) |
| Family member | 144 (34) |
| Friend | 40 (9.5) |
| Family doctor | 16 (3.8) |
| Kidney doctor (nephrologist) | 23 (5.4) |
| Nurse or another person from healthcare team | 9 (2.1) |
| Social worker from dialysis unit | 15 (3.5) |
| Spiritual advisor | 7 (1.6) |
| Hospital Support counselor | 7 (1.6) |
| Others | 8 (1.9) |
| Have you completed any of the following?* | |
| Living will | 151 (35.7) |
| Personal directive/MOLST | 82 (19.4) |
| Healthcare agent/proxy | 36 (8.5) |
| Enduring power of attorney | 91 (21.5) |
| None of the above/Don’t know | 195 (46.1) |
| If you have completed an advance directive, what would you like to be done in case your heart stopped beating? | |
| Resuscitate (full code) | 234 (55.3) |
| Do not resuscitate | 37 (8.7) |
| Do not know/No response | 152 (35.9) |
| 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 to breathe. 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 | 273 (64.5) |
| Allow me to die-do not try to restart my heart or use a breathing machine | 54 (12.8) |
| Don’t know/No response | 74 (22.7) |
| If you had to choose 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? | |
| Relieve pain or discomfort and improve quality of life as much as possible | 172 (40.6) |
| Live as long as possible | 129 (30.5) |
| No response/Don’t know | 122 (28.8) |
| Where would you prefer to die? | |
| At home with a visiting palliative care support team | 222 (52.4) |
| In a hospice (palliative care) center | 72 (17) |
| Hospital | 50 (11.8) |
| Nursing home | 2 (0.5) |
| Other | 39 (9.2) |
| Don’t know/No response | 38 (8.9) |
| Which members of the healthcare team would you like to talk with about end-of-life issues?* | |
| Kidney doctor (nephrologist) | 160 (37.8) |
| Family doctor/Primary care physician | 105 (24.8) |
| Nurse | 31 (7.3) |
| Social worker | 38 (9) |
| Hospital support counselor | 24 (5.7) |
| Spiritual advisor | 34 (8) |
| No one | 102 (24.1) |
| Other | 23 (5.4) |
| When would you like to have these end-of-life conversations? | |
| When I become seriously ill or when the need arises (as defined by your medical team) | 153 (36.2) |
| When I specifically request it | 117 (27.7) |
| Before I am started on dialysis | 22 (5.2) |
| After I start on dialysis but before becoming ill. | 89 (21) |
| Don’t know/No response. | 42 (10) |
| How often would you like to have your end-of-life care plan reviewed? | |
| Whenever the need arises | 170 (40.2) |
| Whenever I ask for this plan to be reviewed | 109 (25.8) |
| On a regular basis (i.e., annually, semi-annually) | 77 (18.2) |
| Other | 38 (9) |
| Don’t know/No response | 29 (6.9) |
| Where would you like to have these end-of-life discussions? | |
| In a clinic | 170 (40.2) |
| While on dialysis but in a private room | 127 (30) |
| While on dialysis | 66 (15.6) |
| Don’t know/No response | 60 (14.1) |
*n’ is greater than 423 because multiple responses were allowed.