Table 3.
Respondents’ Perception of Receipt of Care Partner Support, Advance Care Planning, and Timely PC Referral Components of Palliative Care
| PWP (n = 1266) | PWP at COE (n = 357) | PWP at non- COE (n = 835) | p Value | Care partners (n = 616) | Care partners at COE (n = 169) | Care partners at non- COE (n = 428) | p Value | |
| Care partner needs | ||||||||
| How often does Parkinson doctor or a member of their team do the following: Ask care partner about the care partner's needs and well-being, n (%) PWP = 786 and care partner = 510 | <0.001 | 0.02 | ||||||
| Never | 373 (47.5) | 91 (36.8) | 279 (52.9) | 261 (51.2) | 58 (40.0) | 202 (55.6) | ||
| Only if I bring it up | 76 (9.7) | 23 (9.3) | 50 (9.5) | 68 (13.3) | 24 (16.5) | 44 (12.1) | ||
| Rarely | 135 (17.2) | 47 (19.0) | 84 (15.9) | 97 (19.0) | 33 (22.8) | 63 (17.4) | ||
| At every visit | 202 (25.7) | 86 (34.8) | 114 (21.6) | 84 (16.5) | 30 (20.7) | 54 (14.9) | ||
| Provide care partners with additional support (Example: Resources or referrals to specialists such as social worker, counsellor, etc), n (%) PWP = 745 and care partner = 494 | 0.001 | 0.04 | ||||||
| Never | 393 (52.8) | 96 (41.9) | 291 (57.6) | 245 (49.6) | 61 (44.2) | 183 (51.7) | ||
| Only if I bring it up | 112 (15.0) | 40 (17.5) | 70 (13.9) | 92 (18.6) | 28 (20.3) | 64 (18.1) | ||
| Rarely | 124 (16.6) | 46 (20.1) | 75 (14.8) | 87 (17.6) | 20 (14.5) | 66 (18.6) | ||
| At every visit | 116 (15.6) | 47 (20.5) | 69 (13.7) | 70 (14.2) | 29 (21.0) | 41 (11.6) | ||
| Advance care planning | ||||||||
| Talk about what future with Parkinson could look like, n (%) PWP = 1073 and care partner = 525 | 0.31 | 0.06 | ||||||
| Never | 369 (34.4) | 106 (32.0) | 259 (35.7) | 201 (38.3) | 44 (29.1) | 155 (41.8) | ||
| Only if I bring it up | 250 (23.3) | 80 (24.2) | 166 (22.9) | 106 (20.2) | 36 (23.8) | 70 (18.9) | ||
| Rarely | 283 (26.4) | 83 (25.1) | 194 (26.7) | 143 (27.2) | 46 (30.5) | 96 (25.9) | ||
| At every visit | 171 (15.9) | 62 (18.7) | 107 (14.7) | 75 (14.3) | 25 (16.6) | 50 (13.5) | ||
| Talk about how to best prepare for the future with Parkinson including wishes for how to be cared for if very sick and unable to communicate, n (%) PWP = 1028 and care partner = 497 | 0.09 | 0.02 | ||||||
| Never | 601 (58.5) | 169 (53.8) | 428 (61.3) | 297 (59.8) | 75 (51.7) | 219 (62.8) | ||
| Only if I bring it up | 168 (16.3) | 57 (1.1) | 105 (15.0) | 90 (18.1) | 30 (20.7) | 60 (17.2) | ||
| Rarely | 181 (17.6) | 57 (18.1) | 119 (17.1) | 84 (16.9) | 26 (17.9) | 58 (16.6) | ||
| At every visit | 78 (7.6) | 31 (9.9) | 46 (6.6) | 26 (5.2) | 14 (9.7) | 12 (3.4) | ||
| Complete advance care planning documentation (Example: Advance Directives, Living Will, Power of Attorney, or Health-care Proxy), n (%) PD = 939 and care partner = 447 | 0.16 | <0.001 | ||||||
| Never | 601 (64.0) | 173 (60.1) | 421 (66.1) | 289 (64.6) | 64 (50.8) | 222 (69.8) | ||
| Only if I bring it up | 137 (14.6) | 51 (17.7) | 84 (13.2) | 62 (13.9) | 25 (19.8) | 37 (11.6) | ||
| Rarely | 139 (14.8) | 41 (14.2) | 94 (14.8) | 54 (12.1) | 17 (13.5) | 37 (11.6) | ||
| At every visit | 62 (6.6) | 23 (8.0) | 38 (6.0) | 42 (9.4) | 20 (15.9) | 22 (6.9) | ||
| Timely referrals to specialist palliative care and hospice | ||||||||
| Has your Parkinson doctor ever talked to you about palliative care clinic or in-home palliative care, n (%) PD = 1076 and care partner = 530 | 0.39 | 0.41 | ||||||
| Yes | 39 (3.6) | 16 (4.9) | 23 (3.1) | 42 (7.9) | 16 (10.4) | 26 (7.0) | ||
| No | 1005 (93.4) | 303 (92.1) | 687 (93.9) | 464 (87.6) | 132 (85.7) | 329 (88.4) | ||
| I do not know | 32 (3.0) | 10 (3.0) | 22 (3.0) | 24 (4.5) | 6 (3.9) | 17 (4.6) | ||
| If talked to, ever referred | 0.03 | 0.73 | ||||||
| Yes | 18 (46.2) | 11 (68.8) | 7 (30.4) | 23 (54.8) | 9 (56.3) | 14 (53.9) | ||
| No | 17 (43.6) | 5 (31.3) | 12 (52.2) | 18 (42.9) | 7 (43.8) | 11 (42.3) | ||
| I do not know | 4 (10.3) | 0 (0.0) | 4 (17.4) | 1 (2.4) | 0 (0.0) | 1 (3.9) | ||
| Has your Parkinson doctor ever talked to you about hospice, n (%) PD = 1076 and care partner = 530 | 0.28 | 0.84 | ||||||
| Yes | 16 (1.5) | 7 (2.1) | 7 (1.0) | 12 (2.3) | 4 (2.6) | 8 (2.2) | ||
| No | 1055 (98.1) | 320 (97.3) | 722 (98.6) | 505 (95.3) | 147 (95.5) | 354 (95.2) | ||
| I do not know | 5 (0.5) | 2 (0.6) | 3 (0.4) | 13 (2.5) | 3 (2.0) | 10 (2.7) | ||
| If talked to, ever referred | 0.47 | 0.99 | ||||||
| Yes | 5 (31.3) | 3 (42.9) | 1 (14.3) | 8 (66.7) | 3 (75.0) | 5 (62.5) | ||
| No | 9 (56.3) | 3 (42.9) | 5 (71.4) | 4 (33.3) | 1 (25.0) | 3 (37.5) | ||
| I do not know | 2 (12.5) | 1 (14.3) | 1 (14.3) | 0 (0.0) | 0 (0.0) | 0 (0.0) |