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From: TSS ()
Subject: USA -- 28-year-old son, Joe, suffers from Creutzfeldt-Jakob
Date: October 20, 2005 at 11:06 am PST

USA -- 28-year-old son, Joe, suffers from Creutzfeldt-Jakob
Thu Oct 20, 2005 13:15

Alexian closes Hospice

Alexian Brothers Medical Health Center in Elk Grove Village is closing its hospice center -- the only one of its kind in the northwest suburbs -- and will make new accommodations for patients in the hospital, officials announced Friday.

But as the hospital network shifts away from traditional hospice care services, caught in the middle is at least one family that is dependent on the resources and services provided by Alexian Brothers' Hospice House, the only local hospice facility directly affiliated with a hospital.

The move means hospice care -- affecting about five patients on average -- will no longer be in a single, permanent location. Instead, Alexian Brothers will place terminally ill patients throughout the hospital, integrating them with patients who need similar levels of care and observation.

Josephine Mulczynski, whose 28-year-old son, Joe, suffers from Creutzfeldt-Jakob disease, a variant of mad cow disease that strikes humans, said the support provided by hospice care to her and her son is indispensable.

"My husband died 18 years ago. He went through hospice care. Without hospice, I wouldn't have made it. Now I am going through it again -- they offer so much support for the families and they are wonderful with the patient," she said.

Roger Johnson, Alexian Brothers CEO, said the change is predicated on his belief that hospice care -- which was developed in the mid-1970s -- is an outdated way of treating terminally ill patients.

"Today, rarely are patients told they have six months to live and when they do they want to know, 'How can I turn that six months into two or three years?'" he said. "More than dealing with end-of-life issues, patients want to research their illness, pursue clinical trials, undergo innovative procedures and become involved in aggressive treatment. They have a strong desire to tackle the disease. Hospice care does not provide the types of tracks that allow patients to address those needs."

The hospice unit can accommodate 10 patients, but rarely is it full. More often than not, there are five or fewer patients there, Johnson said.

Mulczynski said the comfort of hospice care, especially individualized attention, is often as valuable to family members as it is for the patient.

"As someone who is experienced in this, sometimes you feel like you are really losing it and it is stressful to be doing this all by yourself. Hospice will take him in for the weekend and it gives you a chance to get away for a little bit and try to get it together," she said.


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