When a person receives an amyotrophic lateral sclerosis (ALS) diagnosis, the first concern is care. The second is time, time to act, organize, and protect what matters most. ALS estate planning begins with that urgency and evolves into structure. Each decision made early reduces stress later for the family and the loved ones who will help manage health and finances through the stages of this progressive disease.

Estate planning for ALS patients means pushing for your wishes to be heard even if the ability to communicate changes. As muscle control fades, decisions about life sustaining treatments, medical power, and financial direction must be recorded clearly. This is where creating and maintaining the right documents: a living will, healthcare proxy, or durable power of attorney, becomes a crucial step. These records give trusted loved ones the authority to act on your behalf, handle medical decisions, and preserve your estate in line with your values.

Each ALS plan looks different. Some people appoint a close friend to help with medical team discussions; others rely on a professional attorney to manage financial assets and long-term care instructions. There’s no single process, only what fits your life, your support network, and your future goals.

To help make those decisions easier, we’ll walk through the essential documents every ALS patient should consider, how to coordinate them with your medical team, and how tools like a life insurance policy or viatical settlement can create the flexibility to act on your own timeline.

If the cost of care is already a concern, you can explore our detailed guide on how to pay for assisted living.

Estate Planning Documents for ALS Patients

Once you’ve discussed your goals with your family and medical team, the next step is creating the documents that make those wishes legally valid. Every estate plan is personal, but for someone living with ALS, a few specific documents offer structure, clarity, and security.

Living Will

A living will defines your medical preferences clearly and early. It covers life-sustaining treatments like mechanical ventilation, feeding tubes, or other interventions your doctors might consider. These decisions guide your medical team if you’re unable to communicate or become incapacitated, ensuring that your care aligns with your values.

A living will also supports your family by removing uncertainty during high-stress medical moments. They can act confidently, knowing your choices are written and protected.

For readers navigating medical costs tied to treatment, our post on whether insurance covers ALS treatment offers practical insight.

Medical Power of Attorney

A medical power of attorney (sometimes called a healthcare proxy) gives a trusted close friend, loved one, or attorney the authority to make medical decisions on your behalf when you can’t.
This person becomes your legal voice, able to speak with your medical team, access your health care information, and make decisions that follow your living will and treatment preferences.

Choose someone who listens carefully, understands your outlook on care, and will act in your best interest under pressure.

Durable Power of Attorney

The durable power of attorney extends authority to financial and practical matters. It allows your chosen representative to manage assets, handle payments, and coordinate daily financial responsibilities if you’re no longer able to.
For ALS patients, this might include arranging long-term care, paying bills, or overseeing insurance claims, steps that maintain your estate and protect your loved ones.

A durable power of attorney stays valid even as the disease progresses, offering continuous protection as physical ability changes.

Health Care and End-of-Life Directives

Beyond these main documents, estate planning often includes additional health-related instructions, such as an advance directive or organ donation preferences. These reflect your values, help your medical team act consistently, and keep your family aligned during difficult stages of this progressive disease.

When these documents are in place, you’re not just preparing for what comes next, you’re protecting the quality of life you want now.

If you’re already considering how these choices tie to financial needs, you can read our piece on paying for ALS treatment for useful context.

Long-Term Care and Financial Planning Options for ALS Patients

Most ALS patients eventually need some level of outside support, in-home care, assisted living, or full nursing supervision. These options bring comfort, safety, and rest for families, but they also carry weighty costs. As of 2025, long-term care ranges from $70,000 to $120,000 per year, depending on location and level of support. Even with insurance or Medicare benefits, coverage rarely pays for everything.

Planning ahead in this stage means creating financial flexibility before those costs build pressure. Planning ahead builds flexibility so you can adapt care and finances as needs change. Liquidity ensures you pay for the right care setting, adapt as ALS progresses, and protect the estate you’ve built.

One of the most effective ways to add that flexibility is through an existing life insurance policy. A viatical settlement allows you to sell the policy for up to 70% its cash value while you’re living. The funds are typically tax-free for people diagnosed with a terminal illness such as ALS, and you remain free to use them as needed. 

That payment can:

• Upgrade in-home nursing care or private therapy sessions.
• Cover home modifications, mobility equipment, or adaptive technology.
• Pay down debts to ease the future transfer of assets to beneficiaries.
• Give loved ones and caregivers room to breathe, financially and emotionally.

A viatical settlement doesn’t interfere with Social Security Disability or Medicare Advantage Plans (Part C). It simply turns a long-term asset into immediate financial support, something that fits naturally within a broader estate planning strategy.

To learn more about converting your policy into accessible funds, visit our Viatical Settlement page or check our Eligibility Guide.

Planning ahead, in this sense, isn’t abstract, it’s action. It’s the quiet assurance that care decisions will reflect your wishes, and that the people you love will have the support they need when they need it most.

See If Your Policy Qualifies

Taking steps toward estate planning shows foresight and care. For ALS patients, it’s also a way to secure financial comfort and protect what you’ve built for your family. If a life insurance policy is part of that plan, exploring a viatical settlement can provide the immediate financial support to make those choices easier.

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Call or email anytime to talk with a member of our team.

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American Life Fund helps people living with ALS, access the value of their life insurance policy with clarity, speed, and compassion.