Who is The ALS Association? Core Values. Core Values. The ALS Association branches 3/22/2012. The ALS Association and Palliative Care Partnerships

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Arline Ray
6 years ago
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Lou Gehrig s disease and their families to live fuller lives by providing them with compassionate care and support. Core Values People with ALS and their families come first in everything we do.

1 Who is? and Palliative Care Partnerships Our Vision Create a world without ALS Mission s mission is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig s disease and their families to live fuller lives by providing them with compassionate care and support. Core Values People with ALS and their families come first in everything we do. Scientific credibility and innovation are the hallmarks of our research program. Commitment to excellence and professionalism are key tenets at all levels of our organization. We are one team with one vision and one mission working together. Core Values Collaboration and partnership within our organization and with others who share our vision and values are key to sustained success in the fight against ALS. Integrity, honesty and ethical behavior guide all our endeavors. Mutual respect is the cornerstone for all our working relationships. Diversity of ideas, cultures, ethnicities and backgrounds strengthen our efforts. Financial strength enables us to accomplish our goals. branches Keith Worthington Chapter Care Services Advocacy Research 1

2 Care Services Teams Chapter Affiliated ALS Clinics Newly Diagnosed Geographic Management* Equipment Urgent Needs Case Management* Clinic Resources and Referrals Education and Outreach Family Support The University of Nebraska Medical Center Director: Dr. J. Americo Fernandes RN Case manager: Elspeth McKeon The University of Kansas Medical Center Director: Dr. April McVey/ Dr. Richard Barohn * Geographically based Advocacy Successes 24-month Medicare waiver Presumptive disability Prescription drug benefit with catastrophic coverage, including coverage for Rilutek Increased government research funding from $15.1M to $50M in 8 years Department of Defense / Department of Veteran Affairs / Centers for Disease Control and Prevention research funding Research Committed nearly $67 million towards ALS research Nearly 100 currently active projects Research projects include: Gene therapy Biomarkers Stem cells Combination drug trials New initiative, TREAT ALS (Translational REsearch Advancing Therapy) Why Palliative Care? ALS is presently incurable and there in no effective treatment, thus, palliation is part of the continuum of care from diagnosis onward. Goals of treatment should be discussed with patients and family and repeated as a patient s status changes. Why Palliative Care? Good symptom control is essential in both the management of living with ALS as well as for a peaceful and dignified death. Palliative Care is being used in ALS specific clinics and worldwide 2

3 Pillars of Palliative Care Advance Care Planning Pain and Symptom Management Support for the Patient and Family (Caregiver) Adapted from CompassionAndSupport.org Symptom Management Pain Dyspnea Dysphagia Sialorrhea Insomnia Anxiety and Depression Bowel and Bladder Function Thought to keep in Mind Advanced Care Planning is an ongoing process in patients with ALS Goals of care may change over time based on symptoms and life changes Care decisions can be reversed (feeding tube, ventilator) Patients may not be able to make a decision about care until a crisis arises Patients may have dementia and not be able to state their wishes Challenges with Serving Greater Nebraska Many patients are not able to drive to ALS specialty multidisciplinary clinic Difficult to attend support groups As the disease progresses it is more difficult for all patients and their caregivers to leave the home Most primary care physicians are not comfortable or familiar with end stage management of ALS Rationale As the number of families accessing services continues to grow in Nebraska, The ALS Association is interesting in forming palliative care partnerships across the state to optimally serve individuals living with ALS in greater Nebraska. Responsibilities Identify ALS patients needing Palliative Care services Make referral and market Palliative Care organization (PCO) to ALS patients, families and primary care physicians Coordinate with PCO to provide all programs offered by for the patient and family 3

4 Responsibilities Ongoing training with PCO Ongoing communication with PCO on jointly managed patients Provides overall case management including access to resources (local, state and federal agencies, vendors, VA, etc.) Palliative Care Nurse/Organization (PCO) Responsibilities Provision of Palliative Care Consultation on a routine basis (which would be determined by PCO) Receives training from ALSA Participates in ongoing communication on jointly managed patients Palliative Care Nurse/Organization (PCO) Responsibilities Coordinates with for additional programs and services for the patient and family Referrals to if an ALS patient is not currently working with The ALS Association and benefiting from its programs North Care Hospice Partnership KC CC listened to North Care s medical director give a speech and was so happy with the hospice philosophy Focused on an individualized experience for each patient with comfort measures like massage, music and aromatherapy good qualify end of life care North Care Hospice Partnership CC came in and educated Northcare Hospice team ( 3 or 4 the first year) ALSA and Northcare had monthly meetings to discuss mutual patients At one time Northcare was carrying 24 ALS patient Organizational Compatibility Organization/Interest Unique ALS Considerations Commitment Logistics 4

5 How to Contact Keith Worthington Chapter (800) (402)

There For You. Your Compassionate Guide. World-Class Hospice Care Since 1979

There For You. Your Compassionate Guide. World-Class Hospice Care Since 1979 There For You Your Compassionate Guide World-Class Hospice Care Since 1979 What Is Hospice? Hospice is a type of care designed to provide support during an advanced illness. Hospice care focuses on comfort