Disclaimer: If you think you have a medical emergency, call 911. The health tips and information we share on this blog are for educational purposes only and should not be considered medical advice. They are not a substitute for advice from your own doctor or healthcare provider.
Compassionate End-of-Life Planning and Care for Individuals with I/DD
End-of-life care for all people requires respect, compassion, and dedication. This is especially true for people with intellectual and/or developmental disabilities (I/DD), as well as their families and caregivers who may make deeply personal decisions about end-of-life care with and for their loved ones.
People with I/DD are typically not involved in making end-of-life decisions for themselves and rarely have advanced care plans in place, even when they have the ability to do so. We can do more to provide appropriate support to ensure that each individual’s needs and wishes regarding the last stage of life are honored with dignity and respect.
Facing End-of-Life Challenges Together
People with I/DD, as well as their families and caregivers, often encounter unique challenges when it comes to end-of-life care, including communication barriers, managing complex medical needs, and ensuring the individual’s dignity and wishes are respected. Having early and open discussions about end-of-life wishes is important to significantly reduce stress and ensure that care aligns with the individual’s desires.
Create a Personalized Care Plan
What can you do? Every individual is unique, and so are their care plans. At StationMD, we emphasize the importance of early and proactive discussion to understand the individual’s values, preferences, and medical history. This includes:
- Advanced Directives: Document the individual’s wishes regarding medical treatments and interventions. According to AAIDD, people with I/DD can express their preferences through verbal and/or nonverbal communication. Careful observation over time often shows what a person with I/DD values as important and can indicate their preferences. There are resources available to do Advance Care planning with and for people with I/DD such as the Thinking Ahead Workbook.
- Quality of Life: As a person with I/DD is aging, take note of what matters most to them and formulate a plan of care that takes this into account as medical issues arise and decisions need to be made.
- Support Networks: In addition to prioritizing the needs and wishes of the individual with I/DD, involve caregivers, family members, trusted healthcare providers and others in the planning process.
- Early Support: Home palliative care, home hospice, or other types of early support can help people stay in the comfort of their homes at the end of life rather than transition to a Skilled Nursing Facility. Start the conversation early with service providers in your area and encourage them to familiarize themselves with the needs of the I/DD community when it comes to end-of-life planning and care.
Collaborative Care Approach to Enhance Quality of Care
Addressing the multifaceted needs of individuals with I/DD at the end of life requires an interdisciplinary approach. This approach requires collaboration among physicians specialized in I/DD, nurses, social workers, direct support professionals, and others to form a cohesive support network.
This network enhances the quality of care and respects the dignity and wishes of the individual:
- Physicians specialized in I/DD are crucial in managing complex medical conditions.
- Nurses play a vital role in providing care and ensuring comfort.
- Where needed, social workers offer essential support by facilitating communication between the individual, family members, and healthcare providers.
- Direct Support Professionals help ensure that care aligns with the individual’s values and preferences, and that it can be carried out safely in the patient’s preferred environment.
End-of-life care for individuals with I/DD is about creating a compassionate and supportive environment that respects their needs and wishes through personalized care plans, interdisciplinary collaboration, and a commitment to ethical and legal standards.
Below is a resource list courtesy of Jacqueline McGinley, Asst Professor of Social Work at Binghamton University:
- https://coalitionccc.org/CCCC/CCCC/Resources/People-With-Developmental-Disabilities-Resources.aspx
- https://www.tuffrey-wijne.com/?page_id=90
- https://www.caresearch.com.au/tel/
- https://futureplanning.thearc.org/
- https://theconversationproject.org/get-started
- https://respectingchoices.org/
- https://pcpld.com/resources/
StationMD is dedicated to individuals with I/DD and other vulnerable populations. Learn more about how we provide services to meet your needs with 24/7 urgent care, behavioral health, and on-call nursing.