The involvement of palliative care with neurology – a comparison of UK, Switzerland and Italy

Figures & data

Table 1 Participants involvement in palliative care.

	UK	Switzerland	Italy
N	86	17	92
Community	81%	58%	80%
In patient	76%	88%	75%
Hospital	69%	88%	62%
Out patients	80%	65%	67%
Day hospice	65%	12%	17%

Table 2 Multidisciplinary team membership.

	UK	Switzerland	Italy
N	86	17	92
Physicians	100%	100%	95%
Nurses	100%	100%	96%
Physiotherapist	81%	71%	72%
Occupational therapist	79%	41%	22%
Social worker	62%	71%	52%
Psychologist	37%	76%	75%
Spiritual care	77%	65%	35%
Speech and language therapist	20%	24%	24%

Table 3 Time of acceptance for referral.

	UK	Switzerland	Italy
n	86	17	92
At or soon after diagnosis	45%	65%	42%
When specific needs are seen	79%	53%	46%
When a new intervention is commenced	19%	24%	22%
At end of life	1%	18%	23%
Only in the terminal phase	3%	12%	23%

Table 4 Collaboration with neurology services.

	UK	Switzerland	Italy
n	76	17	92
Joint clinics	30%	24%	35%
Regular multidisciplinary team meetings	60%	29%	21%
Joint ward rounds	8%	0%	13%
Regular meetings	38%	24%	13%
Regular telephone discussions	53%	24%	48%

Table 5 Collaboration with other disciplines.

	UK	Switzerland	Italy
n	76	17	92
Neurology	86%	71%	83%
Gastroenterology	32%	47%	38%
Respiratory services	64%	82%	67%
Rehabilitation/disability teams	50%	35%	52%
ALS Society/Association	41%	35%	42%

Table 6 Barriers to collaboration with neurology services.

	UK	Switzerland	Italy
n	76	17 Unsure*	92 Unsure*
Neurology services reluctant to refer patients	16%	53% 18%	42% 24%
Palliative care team not able to see neurology patients	0%	12% 6%	13% 29%
Financial/resources	13%	29% 18%	16% 36%
General Practitioner (Family doctor) provides all care	3%	18% 41%	16% 29%
Differences in treatment discussion and options between services	NA	12% 65%	17% 47%
Patient/family reluctant to see palliative care services	20%	12% 29%	11% 33%

*Response not sure/not applicable.

Table 7 Involvement with ventilatory support.

	UK	Switzerland	Italy
n	76	17	92
Noninvasive ventilation
Involvement at initiation	25%	24%	35%
Follow up at home	34%	24%	55%
Discussion of withdrawal at patient’s request	96%	NA	NA
Withdrawal of ventilation at home	72%	35%	57%
Withdrawal of ventilation in inpatient unit	86%	53%	43%
Tracheostomy
Involvement with patients with tracheostomy ventilation	37%	47%	76%

Table 8 Self-assessed expertise of ALS care.

	UK	Switzerland	Italy
N	86	17	92
Limited	3%	12%	20%
Somewhat	13%	24%	21%
Good	30%	47%	42%
Very good	41%	12%	14%
Excellent	12%	5%	3%