Planning Your Funeral With a Terminal Illness: A Checklist

If you have a terminal diagnosis, you can plan your funeral in a few steps: decide what should happen to your body, choose the kind of gathering you want, name the person who will carry out your wishes, put it in writing outside your will, and tell your family where the papers are. Many people find it eases their mind, and it spares the family rushed decisions later. You do not have to do it all at once or alone.

This guide is general information, not medical or legal advice. For decisions about treatment, talk to your care team. For legal documents, an estate or elder law attorney can tell you what your state requires.

What should I decide first?

Start with two questions, because they shape everything else.

1. What should happen to your body? Burial, cremation, donation to science or a newer method such as natural organic reduction (human composting). Washington was the first state to legalize natural organic reduction, and other states have since followed, so availability depends on where you live.
2. What kind of gathering do you want? A funeral with the body present, a memorial service after cremation, a celebration of life, a small private goodbye, or nothing formal.

If you cannot answer everything, say so in your plan. "I want cremation and a simple memorial, and I trust my sister to choose the rest" is a real plan. The funeral type finder can help you compare options.

If you want to donate organs or your body, read our guides to organ donation after death and body donation programs. Programs have their own medical conditions, so name a backup choice in writing.

How can hospice help with funeral planning?

Hospice is comfort-focused care for people with a terminal illness. Under Medicare, you qualify when your doctors certify a life expectancy of six months or less and you choose comfort care over treatment meant to cure the illness. Medicare also says you can change hospice providers once per benefit period.

Federal rules require hospices to provide social work services and to offer spiritual counseling, based on your needs and beliefs. They must also make bereavement services available to your family for up to one year after your death. The hospice benefit pays for care, not for the funeral, but the social worker can be a good person to ask when you want help starting the conversation with your family.

The National Cancer Institute adds a practical tip: contact your health insurer before making a major change such as moving to hospice, so you avoid payment problems later. Our guides on palliative care vs hospice and hospice and funeral planning go into more detail.

Who will carry out my wishes?

Your family may not be the ones with the legal right to decide. State law sets the order of who controls your remains, and you can often change that by naming someone in writing.

• New York: The agent you name comes first. The document must be signed and dated by you and the agent and witnessed by two adults.
• California: An agent under a health care power of attorney comes first, then your spouse, adult children, parents and siblings.

If you have a blended family, disagreements between relatives, or no close family, naming an agent matters even more. Our guides to appointing a funeral representative and a funeral when there is no family explain how this works.

What should go in writing, and where should it be kept?

Write down your decisions and sign and date the document. The FTC gives two warnings.

The FTC advises giving copies to family members and your attorney, keeping one where it is easy to find, and telling your family where the documents are. The National Cancer Institute suggests keeping a list of where your papers are and storing them in a fireproof box or with an attorney.

A useful plan includes:

• Burial or cremation, and any instructions for remains
• The funeral home you prefer, or who may choose
• Service type, music, readings, clothing and faith traditions
• People to notify, with phone numbers
• Your agent and a backup
• Where your insurance policies, will and other documents are

Share the plan with your family. Our guide on telling your family your funeral wishes has ways to start that conversation.

Which medical and legal documents do you need as well?

Funeral planning sits alongside your health care planning. MedlinePlus describes two main advance directives: a living will, which says which treatments you want or do not want, and a durable power of attorney for health care, which names a person to make medical decisions if you cannot. You can change either at any time, and you should give copies to your doctor and family.

People with a serious illness may also be offered a POLST form. National POLST describes it as a portable medical order, made with your health care team, that covers emergency treatment such as CPR. It is for people who are seriously ill or frail, and is different from an advance directive. Five Wishes, from the nonprofit Aging with Dignity, is a plain-language form that covers your health care agent, treatment choices, comfort, spiritual needs and what you want loved ones to know. The organization says it meets legal requirements in 46 states, so check your own state. See advance directive vs living will.

How will the funeral be paid for?

A few facts help you plan without overspending.

• You can compare prices. Funeral homes must give you a written General Price List, give prices by phone if you ask, and let you pick only the items you want. They cannot refuse a casket or urn you bought elsewhere or charge a fee to handle it. No state law requires routine embalming. See our General Price List guide.
• Planning is not the same as prepaying. The Funeral Consumers Alliance recommends planning ahead without paying ahead, and suggests a payable-on-death account as a safer way to set money aside. If you prepay, the FTC says to ask what is covered, how the money is protected, whether you can cancel for a refund and whether the plan transfers if you move.
• Medicaid and SSI have their own rules. SSI excludes up to $1,500 of funds clearly set aside for burial (revocable contracts can qualify), and irrevocable arrangements reduce that limit dollar for dollar. Burial spaces have a separate exclusion. State Medicaid rules differ, so ask an elder law attorney before you prepay or move money.
• Benefits may help. Social Security pays a one-time $255 death payment to certain surviving spouses and children, and VA burial benefits may apply if you served. See Social Security death benefit and veterans burial benefits.
• Life insurance. Tell your family where your policies are. Payments can take time, so a funeral home may ask how the bill will be covered at the start.

If you are a veteran, you can ask VA for a pre-need eligibility decision on burial in a national cemetery using VA Form 40-10007. It does not reserve a gravesite. Keep your DD-214 discharge papers with your plan.

What about your digital life?

Apple's Legacy Contact lets a person you choose request access to your photos, messages, notes and files after your death. They need an access key that you create and a copy of your death certificate, and they cannot see things like your saved passwords. Google's Inactive Account Manager lets you pick up to 10 people to be notified or to receive data after a period of inactivity that you set. Without a plan, Google says it may delete inactive accounts after two years. For everything else, make a secure list of accounts, subscriptions and logins that your agent or executor can reach. Our digital legacy checklist walks you through it.

Can I have a celebration while I am still here?

Yes. Some people hold a gathering while they are alive so they can hear tributes and say thank you in person. It needs no legal paperwork. See our guide to the living funeral for ideas, and plan a separate memorial afterward if you want one.

What to do next

1. Write down your first-pass choices: body, service and who decides.
2. Ask the person you want as your agent, and sign the form your state accepts.
3. Put copies where your family can reach them and tell them where.
4. Ask your hospice social worker or doctor for help if talking to your family feels hard.