People with intellectual and developmental disabilities (IDD) face many of the same issues at the end of life as people without such disabilities. They also face additional issues and challenges. As people with intellectual disability (ID) live longer, they outlive family caregivers more frequently. This often requires additional supports in advanced age, different service locations, and additional planning. The number of people in this situation is expected to rise as the “Baby Boomer” generation moves into this age category (Heller, Gibbons, & Fisher, 2015).
This course will introduce basic legal and ethical guidelines for decision making at the end of life. Advanced planning can provide clarity in complex, stressful situations when people are unable to communicate or provide consent. Your knowledge of an individual’s preferences and rights, as well as ethics, will help you support the person you are serving and their families. This course provides basic information about some common medical decisions that are included in an end-of-life care plan, as well as information about specialized healthcare options such as palliative care and hospice.
The goal of this course is to introduce nurses, psychologists, social workers, and qualified IDD professionals to critical issues at the end of life for people with IDD.
People with intellectual and developmental disabilities (IDD) face many of the same issues at the end of life as people without such disabilities. They also face additional issues and challenges. As people with intellectual disability (ID) live longer, they outlive family caregivers more frequently. This often requires additional supports in advanced age, different service locations, and additional planning. The number of people in this situation is expected to rise as the “Baby Boomer” generation moves into this age category (Heller, Gibbons, & Fisher, 2015). This course will introduce basic legal and ethical guidelines for decision making at the end of life. Advanced planning can provide clarity in complex, stressful situations when people are unable to communicate or provide consent. Your knowledge of an individual’s preferences and rights, as well as ethics, will help you support the person you are serving and their families. This course provides basic information about some common medical decisions that are included in an end-of-life care plan, as well as information about specialized healthcare options such as palliative care and hospice. The goal of this course is to introduce nurses, psychologists, social workers, and qualified IDD professionals to critical issues at the end of life for people with IDD.
In support of improving patient care, Relias LLC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.
In support of improving patient care, Relias LLC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.
Arkansas State Board Of Nursing Approved Continuing Education program (CEBroker Provider #50-290).
District of Columbia Board of Nursing Approved Continuing Education program (CEBroker Provider #50-290).
Florida Board of Medicine (CEBroker Provider #50-290)
Florida Board of Nursing (CEBroker Provider #50-290)
Georgia Board of Nursing (CEBroker Provider #50-290)
In support of improving patient care, Relias LLC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.
Louisiana State Board of Medical Examiners (CEBroker Provider #: 50-290)
Mississippi Board of Nursing (CEBroker Provider #50-290)
Mississippi State Board of Medical Licensure (CEBroker Provider #: 50-290)
This activity is approved for 1.00 contact hours.
New Mexico Board of Nursing (CEBroker Provider #50-290)
North Dakota Board of Nursing (CEBroker Provider #50-290)
State Medical Board of Ohio (CEBroker Provider #: 50-290)
South Carolina Board of Nursing (CEBroker Provider #50-290)
West Virginia Board of Registered Nursing (CEBroker Provider #50-290)
Outline:
Section 1: Introduction
About This Course
Learning Objectives
Section 2: A Good Death
Life Expectancy
A Look Back
Death as a Medical Problem
What is a Good Death?
Spirituality
Grief and Loss
Importance of Ritual
Providing Supports that Match the Needs of the Person
Meet Molly
Redefining Hope
Reflection
Review
Summary
Section 3: Last Stages of Life
The Dying Process
Disability vs. Illness
Quality of Life
Signs of the End of Life
Treatment Decisions
What is Palliative Care?
What is Hospice?
Life Ceasing Situations
Review
Summary
Section 4: Communicating and Planning Ahead
Meet Edward
End-of-Life Care Plans
Legal Documents
Person-Centered Planning
Revisiting Edward
Supporting the Development of an End-of-Life Care Plan
Asking Healthcare Questions
Discussing Treatment
Location Preferences
How to Talk About Dying
Review
Summary
Section 5: End-of-Life Decision Making
Medical Decision Making
Informed Consent
Capable versus Competent
Supported Decision Making
Quick Check
Principles for End-of-Life Care
Paul: Transplant or Hospice?
The Role of Ethics Committees
Ethics and Capacity
Review
Summary
Section 6: Conclusion
Summary
Course Contributors
References
Congratulations!
Katy Kunst received her Bachelor of Arts in Psychology from the University of North Carolina at Chapel Hill, and her Master of Business Administration from Elon University. She has 15 years of experience serving people with intellectual and developmental disabilities and their supporters, including roles as direct support professional, program director, and training facilitator. She has created and facilitated training on topics including non-violent crisis interventions, person-centered planning, cultural competence, quality service delivery, regulatory compliance, and a variety of topics related to IDD services.Instructor: Margaret A. Nygren, EdD
Margaret A. Nygren, EdD, is the Executive Director and CEO of the American Association on Intellectual and Developmental Disabilities (AAIDD). Prior to her work at AAIDD, she held positions at the Association of University Centers on Disabilities (AUCD), the Disabled and Elderly Health Programs Group at the Centers for Medicare and Medicaid Services (CMS). Dr. Nygren earned a Doctorate of Education in Organizational Leadership from Nova Southeastern University, a MA in Clinical Psychology from West Virginia University, and a BA in Psychology from Beloit College, and was named a Fellow of the AAIDD in 2018.
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