HOSPICE ALS PATIENT - A CASE 
STUDY 
T. Žargi
Slovenian Hospice Association, Ljubljana, Slovenia
This case stucly is presenting importance to aclclress an 
open truth based relation in the couple. reclucing pressurc 
and anger on both sides. and relations with health carc 
professionals. protecting the patient's rights and dignity. 
respecting his wi II - how he doesn 't wont to be treated - and 
unclerstanding his personal nccds trough thc open dialogue. 
when coping with lile thrcatcning cliscasc. 
On suggestion of the Institute of Clinical Neurophysiol­
ogy social worker. University Medica! Centre Ljubljana, 
our Hospice started to follow for 10 months a 63 years old 
patient, after his wifc callecl for our help. In May 2004 
diagnosecl ALS clisease. two years later at Hospice intro­
duction. the patient was harclly moving. unable to talk, 
using only one hand to communicate by his computer . Due 
to clysphaghia. PEG was placecl for effective alimentation. 
but the patient prefers to take the food orally. Frequent 
sal i vati on and the fcar of suffocation duri ng the night were 
great burclen for him. The help from assistecl ventilator 
was also refused. His wife took over all the clifficult care 
by herself. 
Living in a home setting with fornily - wife and two adult 
sons - he was trying to avoicl any hospitalisation. For degra­
dation of the patient. responsibilities and working pressure. 
his wile nearly burni out. At that time l'amily and the patient 
ED 
were convincecl to win the battlc with his illness. using sev­
era! complementary ancl alternative methods and drugs. 
Hospice team made a plan how to improvc the primary care, 
and allow his wife to find some tirne for herself. therefore 
a Hospice nurse introduced othcr sources of care and 3 
Hospice voluntcers to stay with him almost every clay clur­
ing thc wcek. 
Reaching a deeper connection with the pati en t. our Spi ritual 
Care professional. on his dcmand. a dialogue on life balancc, 
euthanasia ancl his lile values were addressecl. Supporting 
his lcars and difficult acceptance of completc control of his 
daily living and lile decisions until the last clays. hc clied 
peaccfully at his home with his wile at bcdside. 
The family dynamic was guided by Family coordinator to 
acceptance ancl connection among ali members, important 
for thc patient. In collaboration with the Institute specialists, 
symptom managcmcnt was scnsitivcly followcd by Hospicc 
stull. considering thc patient consents. 
Hospice goal was achieved creating the space for acceptance 
and peaceful dying. patient opening to his wite. surrounded 
by loving pcoplc ancl rcaching thc holistic hcaling. realising 
how clying is much more than a medica! issue.