Table 3.
PD Patient Use and Preferences for Advance Care Planning
| Item | Potential Responses | PD Responses (N; %) | Cancer Responses (N; %) | P Value |
|---|---|---|---|---|
| Have you ever written down any thoughts about your future health plans? | Yes, definitely | 43% (N = 38) | 30% (N = 14) | 0.32 |
| Very probably | 1% (N = 1) | 2% (N = 1) | ||
| Probably | 3% (N = 2) | 2% (N = 1) | ||
| Probably not | 0% (N = 0) | 2% (N = 1) | ||
| Definite no | 48% (N = 43) | 62% (N = 29) | ||
| Don't know | 6% (N = 5) | 2% (N = 1) | ||
| Have you ever heard about and completed a Health Care Power of Attorney, in which you name someone to make decisions about your health care in case you could not? | Have heard about and completed | 76% (N = 68) | 53% (N = 25) | 0.018 |
| Have heard about but not completed | 18% (N = 16) | 38% (N = 18) | ||
| Have not heard about | 4% (N = 4) | 9% (N = 4) | ||
| Don't know | 2% (N = 2) | 0% (N = 0) | ||
| Have you ever heard about and completed an Advance Directive, such as the Five Wishes? | Have heard about and completed | 56% (N = 50) | 40% (N = 19) | 0.32 |
| Have heard about but not completed | 23% (N = 21) | 32% (N = 15) | ||
| Have not heard about | 16% (N = 14) | 23% (N = 11) | ||
| Don't know | 6% (N = 5) | 4% (N = 2) | ||
| When do you think it is the best time to bring up end‐of‐life decisions? | Before getting sick, while healthy | 80% (N = 72) | 58% (N = 26) | 0.048 |
| When first diagnosed with a life‐threatening or progressive illness | 12% (N = 11) | 20% (N = 9) | ||
| When first sick with a life‐threatening or progressive illness | 2% (N = 2) | 9% (N = 4) | ||
| When first hospitalized with a life‐threatening or progressive illness | 3% (N = 3) | 7% (N = 3) | ||
| If dying | 2% (N = 2) | 7% (N = 3) | ||
| Who are the best people/person on the treatment team to bring it (end‐of‐life decisions) up with you? (Could select more than one) | Primary care physician | 58% (N = 52) | 45% (N = 21) | P > 0.05 for all comparisons |
| Neurologist | 54% (N = 49) | 38% (N = 18) | ||
| Nurse practitioner | 21% (N = 19) | 19% (N = 9) | ||
| Nurse | 9% (N = 8) | 11% (N = 5) | ||
| Social worker | 11% (N = 10) | 15% (N = 7) | ||
| Psychologist | 9% (N = 8) | 9% (N = 4) | ||
| Case manager | 6% (N = 5) | 9% (N = 4) | ||
| Chaplain | 20% (N = 18) | 17% (N = 8) | ||
| Patient advocate | 11% (N = 10) | 11% (N = 5) | ||
| Other | 37% (N = 33) | 36% (N = 17) |