Living With ALS

Planning Ahead

Planning ahead is not only end-of-life planning. It is a way to preserve communication, comfort, safety, and choice while there is time to discuss options.

Start with the problem

What problem are you trying to solve?

This question box finds a relevant ALS Hub page. It does not diagnose or provide medical advice.

Communication and equipment planning

voice banking
message banking
mobility equipment before urgent need
communication devices
feeding-tube conversations
caregiver plans
emergency plans

Sources: Augmentative and alternative communication · Nutrition and feeding tubes · Mobility in ALS

Respiratory decisions

People may want to discuss NIV, tracheostomy ventilation, goals, burdens, caregiver support, emergency plans, and what outcomes matter to them before a crisis.

Review breathing information

Sources: Managing Breathing Issues · Respiratory symptoms in motor neurone disease

Health-care proxy and advance directives

Advance care planning can include choosing a health-care proxy, documenting preferences, and talking with the people who may need to speak for you. Laws and forms vary by jurisdiction.

Read NIH advance-care planning guidance Read about choosing a health-care proxy Read ALS-specific advance-directive information

Sources: Advance care planning and advance directives · Choosing a health care proxy · Advance directives

Financial, legal, and caregiving plans

Planning may include financial documents, legal planning, caregiving arrangements, emergency contacts, palliative care, hospice, and organ, tissue, or brain donation if desired. A qualified professional can explain choices that depend on jurisdiction and personal circumstances.

Sources: Advance care planning and advance directives · Advance directives

Sources & Further Reading

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National Institute on Aging