Background
Methods
Study design and approvals
Setting
Participating cities | |||
---|---|---|---|
Specialist palliative care service | London | Dublin | New York |
Hospital palliative care team(s) providing a consultative service | Medical Attendings/Consultants, fellows/trainee doctors, clinical nurse specialists/practitioners, psychosocial/social workers, administrative support | Medical Attendings/Consultants, fellows/trainee doctors, clinical nurse specialists/practitioners, psychosocial/social workers, administrative support | Medical Attendings/Consultants, fellows/trainee doctors, clinical nurse specialists/practitioners |
Inpatient palliative care unit within service | No | No | Yes, 10 beds |
Extended team | Chaplaincy, pharmacy | Pharmacy, physiotherapy, chaplaincy | Social workers, chaplaincy, fellows/trainee doctors, triage nurse |
Outpatient clinics | Yes | Yes | Yes |
Community palliative care team | Yes (part of catchment area) | No | Yes |
On call for specialist advice and emergencies | Yes | Yes | Yes |
On call weekend ward rounds | Yes | No | Yes |
Co-operation with local hospicesa
| Yes | Yes | Yes |
Funding | Paid for by a tariff specifically for activity as part of National Health Service within the hospitals, local inpatient services in hospices paid for by mix of charity and National Health Service. Additional charitable support for components. | Paid for as part of historic block grant allocation as part of National Health Service within the hospitals. Additional charitable support for components. | Program is funded through physician and advance practice nurse billing under Medicare Part B, the Mount Sinai Hospital through Medicare Part A revenues, and contributions from private sector philanthropy. |
Annual referrals to services (all ages) at time of study, % >65 years, % with cancer. | 1450 Annual referrals (KCH) 70% aged over 65 years 35% Cancer, 65% Non cancer | 1370 Annual referrals (MMUH + Beaumont) 74% aged over 65 years 65% Cancer, 35% Non cancer | 2175 Annual referrals (consultation service) 57% aged over 65 years 34% Cancer, 66% Non cancer |
Procedures
Identification and recruitment
Questionnaire
Statistical analysis
Results
Recruitment and characteristics
London | Dublin | New York | All | ||
---|---|---|---|---|---|
(N = 64) | (N = 59) | (N = 15) | (N = 138) | ||
Female | 47% | 44% | 80% | 49% | |
Age (years) | |||||
65–69 | 31% | 34% | 33% | 33% | |
70–74 | 25% | 27% | 33% | 27% | |
75–79 | 20% | 19% | 20% | 20% | |
80–89 | 16% | 17% | 13% | 21% | |
90–96 | 8% | 3% | 0% | 5% | |
Diagnosis | |||||
Lung and respiratory cancer | 8% | 14% | 13% | 11% | |
Breast cancer | 11% | 8% | 13% | 10% | |
Genitourinary cancer | 25% | 27% | 7% | 24% | |
Haematological cancer | 8% | 3% | 20% | 7% | |
Digestive cancer | 25% | 24% | 27% | 25% | |
Ill-defined cancer | 3% | 8% | 0% | 5% | |
Other cancer | 8% | 2% | 13% | 6% | |
Non-cancer respiratory | 3% | 2% | 0% | 2% | |
Non-cancer circulatory | 5% | 7% | 0% | 5% | |
Non-cancer CNS | 2% | 3% | 0% | 2% | |
Renal failure | 0% | 0% | 7% | 1% | |
Other non-cancer | 3% | 2% | 0% | 2% | |
Total Cancer (=1 if cancer) | 88% | 86% | 93% | 88% | |
Marital status | |||||
Single | 13% | 14% | 20% | 14% | |
Widowed | 31% | 36% | 13% | 31% | |
Married/civil partnership | 33% | 42% | 53% | 39% | |
Divorced/separated | 23% | 8% | 13% | 16% | |
Living with (=1 if with someone else) | 42% | 59% | 53% | 51% | |
Primary carer (=1 if available) | 78% | 73% | 80% | 76% | |
Household income | |||||
Living comfortably on present | 36% | 32% | 40% | 35% | |
Coping on present | 45% | 54% | 33% | 48% | |
Difficult on present | 16% | 7% | 13% | 12% | |
Very difficult on present | 3% | 7% | 7% | 5% | |
Prefer not to say | 0% | 0% | 7% | 1% | |
Religion (=1 if religious) | 67% | 76% | 80% | 72% | |
Palliative concerns POSa total score** | 13.3 (6.3) | 8.1 (5.5) | 10.1 (4.7) | 10.7 (6.3) | |
Barthel Indexb total score** | 69.5 (24.5) | 75.8 (26.1) | 94.3 (9.6) | 75.2 (25.1) | |
SOMCTc total score | 11.3 (5.3) | 10.8 (4.4) | 7.8 (2.4) | 10.8 (4.8) | |
Participant died as of end January 2016** | |||||
Yes | 86% | 88% | 20% | 80% | |
No | 9% | 2% | 53% | 11% | |
Don’t know | 5% | 10% | 27% | 9% | |
Died within 30 days after referral to palliative care | 9% | 10% | 7% | 9% |
Preferences
London | Dublin | New York | All | ||
---|---|---|---|---|---|
(N = 64) | (N = 59) | (N = 15) | (N = 138) | ||
Most preferred place of death1
| |||||
Home | 42 66% | 28 47% | 7 47% | 77 56% | |
Home of a relative or friend | 0 0% | 0 0% | 0 0% | 0 0% | |
Palliative care unit or inpatient hospice | 12 19% | 14 24% | 5 33% | 31 22% | |
Hospital | 2 3% | 4 7% | 0 0% | 6 4% | |
Nursing home or residential home | 1 2% | 2 3% | 0 0% | 3 2% | |
Elsewhere | 4 6% | 1 2% | 1 7% | 6 4% | |
Don’t know/prefer not to say | 3 5% | 10 17% | 2 13% | 15 11% | |
Least preferred place of death2
| |||||
Home | 8 13% | 10 17% | 4 27% | 22 16% | |
Home of a relative or friend | 9 14% | 3 5% | 0 0% | 12 9% | |
Palliative care unit or inpatient hospice | 5 8% | 1 2% | 0 0% | 6 4% | |
Hospital | 18 28% | 15 25% | 2 13% | 35 25% | |
Nursing home or residential home | 17 27% | 6 10% | 4 27% | 27 20% | |
Somewhere else | 1 2% | 8 14% | 2 13% | 11 8% | |
Don’t know/prefer not to say | 6 8% | 16 27% | 3 20% | 25 18% | |
Treatment goal priority: quantity or quality of lifea3
| |||||
To extend life | 1 2% | 3 5% | 0 0% | 4 3% | |
To improve the quality of life for time left | 38 59% | 30 51% | 6 40% | 74 54% | |
Both are equally important | 23 36% | 24 41% | 7 47% | 54 39% | |
Don’t know/prefer not to say | 2 3% | 2 3% | 2 13% | 5 4% | |
Person who makes decisions about careb4
| |||||
Herself/himself | 62 97% | 48 81% | 10 67% | 120 87% | |
Spouse or partner | 22 34% | 17 29% | 2 13% | 41 30% | |
Other relatives | 37 58% | 31 53% | 7 47% | 75 54% | |
Friends | 6 9% | 0 0% | 1 7% | 7 5% | |
The doctor | 18 28% | 11 19% | 0 0% | 29 21% |
Most and least preferred place of death and whether preferences were met
Actual place of death | |||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|
Most preferred place of death | Own home | Home of a relative or friend | Palliative care unit or inpatient hospicea
| Hospital | Care home | Else where | Sub total Known place of death | Don’t know where diedb
| Alive | Total N (%) | |
Own home | 14 | 0 | 26 | 19 | 3 | 0 | 62 | 7 | 4 | 77 | (56%) |
Home of a relative or friend | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | (0%) |
Palliative care unit or inpatient hospicea
| 7 | 0 | 5 | 10 | 1 | 0 | 23 | 1 | 6 | 31 | (23%) |
Hospital | 0 | 0 | 4 | 1 | 0 | 0 | 5 | 0 | 1 | 6 | (4%) |
Care home | 1 | 0 | 1 | 1 | 0 | 0 | 3 | 0 | 0 | 3 | (2%) |
Elsewhere | 0 | 0 | 1 | 0 | 1 | 0 | 2 | 1 | 3 | 6 | (4%) |
Don’t know | 0 | 0 | 1 | 4 | 1 | 0 | 6 | 3 | 1 | 12 | (9%) |
Refusal/prefer not to say | 0 | 0 | 2 | 0 | 0 | 0 | 2 | 1 | 0 | 3 | (2%) |
Total | 22(21%) | 0(0%) | 40(39%) | 35(34%) | 6(6%) | 0(0%) | 103(100%) | 13 | 15 | 138 | (100%) |
Least preferred place of death | Own home | Home of a relative or friend | Palliative care unit or inpatient hospicea
| Hospital | Care home | Else where | Sub total Known place of death | Don’t know where diedb
| Alive | Total N (%) | |
Own home | 4 | 0 | 5 | 5 | 2 | 0 | 16 | 1 | 5 | 22 | (16%) |
Home of a relative or friend | 4 | 0 | 5 | 2 | 1 | 0 | 12 | 0 | 0 | 12 | (9%) |
Palliative care unit or inpatient hospicea
| 0 | 0 | 1 | 1 | 1 | 0 | 3 | 1 | 2 | 6 | (4%) |
Hospital | 5 | 0 | 11 | 8 | 2 | 0 | 26 | 2 | 2 | 33 | (24%) |
Care home | 6 | 0 | 7 | 8 | 0 | 0 | 21 | 2 | 4 | 25 | (18%) |
Elsewhere | 2 | 0 | 3 | 3 | 0 | 0 | 8 | 1 | 2 | 11 | (8%) |
Don’t know | 1 | 0 | 5 | 7 | 0 | 0 | 13 | 5 | 0 | 18 | (13%) |
Refusal/prefer not to say | 0 | 0 | 3 | 0 | 0 | 0 | 3 | 1 | 0 | 4 | (3%) |
Missing | 0 | 0 | 0 | 1 | 0 | 0 | 1 | 0 | 0 | 1 | (1%) |
Total | 22(21%) | 0(0%) | 40(39%) | 35(34%) | 6(6%) | 0(0%) | 103(100%) | 13 | 15 | 138 | (100%) |
Factors associated with home as the most preferred place of death
Home as the most preferred | Home as the least preferred | Palliative care unit or inpatient hospice as the most preferred | ||||||||
---|---|---|---|---|---|---|---|---|---|---|
Odds ratio | CI Lower
| CI Upper
| Odds ratio | CI Lower
| CI Upper
| Odds ratio | CI Lower
| CI Upper
| ||
Female | 0.53 | 0.11 | 2.51 | 1.81 | 0.93 | 3.51 | 1.68 | 0.21 | 13.87 | |
Age (base: 65–69)a
| ||||||||||
70–79 | 0.95 | 0.13 | 6.82 | 1.48 | 0.56 | 3.91 | 1.30 | 0.11 | 14.81 | |
80–96 | 0.77 | 0.49 | 1.23 | 1.71 | 0.66 | 4.47 | 1.79 | 0.40 | 8.05 | |
Cancer |
3.72
**
|
1.40
|
9.90
| |||||||
Non-cancer |
4.29
*
|
1.23
|
15.00
|
2.39
*
|
1.14
|
5.03
| ||||
Living with |
2.19
**
|
1.33
|
3.62
| 1.02 | 0.32 | 3.23 | ||||
Barthel total score |
0.99
**
|
0.98
|
1.00
| 1.03 | 0.98 | 1.07 | 1.00 | 1.00 | 1.01 | |
28-SOMCT total score |
1.09
*
|
0.97
|
1.23
| |||||||
Constant |
2.42
**
|
1.86
|
3.13
|
0.01
*
|
<0.00
|
0.52
|
0.02
**
|
<0.00
|
0.25
| |
N | 113 | 102 | 107 | |||||||
Log likelihood | −67.16 | −45.71 | −54.92 |