Insights - Summer 2010 - (Page 19)

A Collaboration that’s Helping JSSA Hospice Serve ALS Patients JSSA Hospice, based in Rockville, MD, has developed expertise in caring for patients with ALS, through its collaboration with the ALS Association Chapter of DC, Maryland and Virginia. The organization, which serves patients and their families of all faiths and ethnicities in Maryland’s Montgomery County, began increasing its work with ALS patients in 2008. Through specialized training in collaboration with the ALS Association, staff members are now better trained and better able to meet the ALS patient’s complex needs, from the loss of mobility to difficulty eating, swallowing and even breathing. Joan Deye, a nurse and full-time volunteer for the ALS Association in Washington, has been a valuable resource, presenting several trainings a year as well as accompanying the hospice nurse on home visits within the first two weeks of a new ALS patient’s care. Deye also consults with the care team over time and often serves as a conduit to the ALS Association’s resources, such as the loan of adaptive technology devices, and information and support for patients and their caregivers. One Patient’s Experience One of JSSA Hospice’s recent ALS patients initially found the idea of hospice care “horrifying” because he associated it with an inpatient environment for those with just a few days left to live. He opted for hospice only when he learned he could benefi t from it for many months, receive care in his home, and be kept comfortable when unable to breathe on his own. JSSA Hospice sent a hospice aide each morning to help him bathe and dress, a laborious three-hour process due to his limited mobility. This provided his wife, his primary caretaker, important respite. A JSSA Hospice nurse would then see him one or two times a week to keep him safe and comfortable by managing his symptoms and reviewing his medications. As the ALS progressed, the nurse visited as often as she was needed. In addition, the JSSA Hospice social worker would meet him at his home once or twice a month. She would coordinate his caregivers’ services, and offer emotional support as he and his wife encountered more limitations and losses. Nearly every week a trained JSSA Hospice volunteer would also visit him, helping with projects and sometimes running errands with him, using his wheelchair-accessible minivan. “The advantage of hospice care is that it presents so many ways for us to help the patient and family adapt to the illness,” notes JSSA Hospice director, Joyce Sexton. “Then the end of life can be dignified, meaningful and as comfortable as possible.” Staff members are now better trained… to meet the ALS patient’s complex needs, from the loss of mobility to difficulty eating, and even breathing Insights 19 

Table of Contents for the Digital Edition of Insights - Summer 2010

Insights - Summer 2010
Table of Contents
Is it Time to Diversify?
Expanding Care in Your Community
Gaining Community Physician Support
A Collaboration that's Helping ALS Patients
Physical Therapy - Premise, Present, Promise
Complementary Therapy in the Care Continuum
The Evolution of Hospice & Palliative CareCenter's CT Program
Integrating Touch Therapies into the CNA's Practice
The Circle of Care
Taking Your Volunteer Program to the Next Level
Making a Case for Complex Care Management
Helping Non-terminal Cancer Patients Cope
Advance Care Planning Education
Spanish Oaks Hospice: Doing Its Part to Improve Access
Caring for Our Loved Ones - and for Our Caregivers
My.NHPCO - Care, Share, Connect
Why Hospice?
NHPCO's Educational Offerings

Insights - Summer 2010

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