Planning Your Own Funeral in Hospice: Guides for Patients and Families

Sometimes it's the person in the bed who brings it up first. “I want to talk about my funeral.” And the room goes quiet, because no one knows whether to change the subject or find a pen.

My husband told me what he wanted: to be cremated, and to be buried in a national cemetery. He died suddenly, so we never talked about the rest. But those two sentences were something to hold onto when everything else was a blur. I knew I was doing what he asked.

If you or someone you love is in hospice, you may have something we didn't: a little time to ask. This post is about using that time gently. There's one part for the person who is dying and one for the people helping, because those are two very different places to stand.

If You're the One in Hospice

You don't have to do any of this. Some people find real peace in planning their goodbye. Others don't want to think about it at all, and that is allowed. It's your life and your time. If you only do one thing, let it be telling someone who you trust to decide for you. That takes two minutes, and it's a kindness to everyone who loves you.

If you worry about being a burden, please hear this: needing care is not being a burden. Planning isn't a debt you owe your family. It's a gift you can give if you want to, in whatever size you can manage.

If you'd rather pick the songs than talk about feelings, you're in good company. In a national Duke University study, seriously ill patients said having their funeral arrangements planned mattered to them, more than their doctors expected. A follow-up study found patients were more likely than doctors to want to plan their funeral, and less likely than anyone else to want to talk about their fears.

Hope and planning can live together. People who care for the seriously ill call it double awareness: staying engaged with life while also getting ready for death. You can hope for good days and choose your hymns in the same week.

If you only have a little energy

These five answers are the ones your family will need most:

1. Who you trust to carry out your wishes
2. Burial, cremation, or something else
3. The funeral home you'd like
4. A service or gathering, or none
5. Where you've written this down

And say it out loud to someone. My husband's wishes were just two sentences. They were enough to guide me.

Short sessions are best. Ten or fifteen minutes is plenty. If writing is hard, talk while someone else writes, or record yourself on a phone. A blank can simply mean “my family can decide.”

The few things that can't wait

Who will be in charge. Every state lets you name the person who will make your funeral decisions, but how you do it differs by state. If you don't, state law decides, usually starting with a spouse and then next of kin. That matters most if your person is a partner you aren't married to, a close friend, or chosen family, or if you're estranged from relatives. Put it in writing now. Don't count on your will: the FTC warns a will often isn't read until after the funeral.

Body donation. Programs differ. Many let you register ahead, and some let a spouse or health care agent agree after death. Any program can say no at the time of death, and some don't return ashes. Have a back-up plan, and ask your hospice social worker which programs serve your area.

Tissue donation. Organ donation usually isn't possible in hospice, but tissue donation, such as corneas, sometimes is. If it matters to you, ask your hospice team now.

If you served. Find your DD-214. You can ask the VA to confirm national cemetery eligibility ahead of time. It doesn't reserve a spot, but it saves your family a step. Our free My Service, Wishes, and Papers pages (fillable version) give you one place to write down your service, your funeral honors wishes, and where your papers are. Our guide for when a veteran is in hospice covers honors and benefits.

Faith, or no faith. If your faith has prayers or rites near the end of life, tell your faith leader or hospice chaplain now. Every hospice is required to offer spiritual counseling if you want it. If you don't have a faith, you can still choose words, music or silence that mean something to you. Our free guide Our Traditions Matter helps you tell your hospice team what your family needs.

If you live alone, or don't have family nearby

Naming someone matters even more. It can be a friend, a neighbor, someone from your church. Without a named person or family who steps forward, arrangements can end up with the county, which often means a simple cremation, chosen by strangers. Tell your hospice social worker your plan, and give a copy to the funeral home you choose. In My Own Words has pages just for you.

Making it yours

• Your name, your way: the name, pronouns and photo you want used in the obituary and program, and the people you want included
• The people who might not be able to come: a livestream, a recording, or a second small gathering
• Language and access: a program in two languages, an ASL interpreter, seating for someone who uses a wheelchair
• Children: a small job for a grandchild, like handing out programs or choosing a photo
• Pets: who will care for them, and whether they can be there
• A goodbye while you're here: some people hold a gathering while they're still alive, sometimes called a living funeral, to hear the stories and say the words themselves

Your phone and online accounts

Photos, messages and social media can be some of what your family treasures most. You can choose someone now: a Facebook legacy contact, an Apple Legacy Contact for your photos and files, or Google's Inactive Account Manager. And tell someone how to unlock your phone.

When it gets heavy

Planning can bring up sadness, fear, anger, even laughter. You can stop any time. Your hospice chaplain and social worker talk with people about these things every day. You can simply say, “I've been thinking about my funeral, and I'd like to talk.”

If You're Helping Someone You Love

First, about you. Bringing this up can feel like wishing them gone. It isn't. Asking what they want is a way of saying, “I'll take care of you, even then.” If you've been carrying this question for weeks, that's love too.

Starting the conversation

There is rarely a perfect moment. A gentle invitation is enough:

“I want to make sure that when the time comes, we do things the way you'd want. Would you be willing to talk about that a little?”

If they say no, respect it. Try one small question another day: “Is there a song you'd want played?” Or: “If you'd rather not think about this, who would you trust to decide?” And if they bring it up first, don't change the subject. Listen. It may have taken courage.

When time or memory is short

If the illness is moving fast or affecting their thinking, ask only what needs their own words: who decides, burial or cremation, and anything they feel strongly about. Everything else you can decide later. If they can no longer take part, plan from what you know of them: what they said at other funerals, their faith, the things they loved. Planning Together has a page for this.

When they ask for a promise you can't keep

“Promise you'll scatter my ashes in Ireland.” “Promise the family will get along.” It's okay to answer with love instead of a promise: “I'll do everything I can to honor what you want.” That's honest, and it's enough.

When the family doesn't agree

Disagreements usually come from love and grief, not bad intentions. Start with your loved one's own words, written down if possible. Know who has the legal right to decide. And honor the spirit of their wishes even if every detail isn't possible: in no state is the person in charge required to carry out wishes that are highly impractical or that there's no money for. Planning Together has a family meeting agenda to help.

Write it down, and tell people where it is

A plan no one can find can't help. The FTC suggests giving copies to family, keeping one where it's easy to find, and not keeping the only copy in a safe deposit box that may be closed on a weekend. If there's a prepaid funeral plan, make sure the family knows, so no one pays for the same thing twice. Give the funeral home a copy too.

Your rights with funeral homes

You can choose a funeral home now without paying anything now. Planning ahead and paying ahead are two separate choices. Under the federal FTC Funeral Rule, a funeral home must:

• Give you prices over the phone, without asking for your name or number first
• Give you a written, itemized price list to keep when you visit
• Let you buy only what you want
• Accept a casket or urn you buy elsewhere, with no handling fee
• Offer a simple, lower-cost container for cremation

It helps to let the funeral home know that someone in hospice may need them soon, so that night is one phone call instead of a search.

If you're thinking about prepaying, ask what happens if you move, change your mind, or the business closes. Protections vary by state. If your loved one gets Medicaid or may apply, ask the hospice social worker before paying anything, because each state has its own rules for burial funds.

When money is tight

Worrying about money doesn't mean you love them any less. A few things that can help:

• Direct cremation or direct burial, with a memorial later if you like. The FTC says both usually cost less than a traditional funeral.
• Life insurance: find the policy now and note where it is. If one turns up missing later, the free NAIC Life Insurance Policy Locator can help search.
• Veterans' benefits for burial, a headstone and a flag. See our veteran hospice guide.
• Body donation programs often cover cremation at no cost, though some don't return ashes.
• Ask the hospice social worker about local help. They know what's available where you live.

Caring for them at home, if you want to

Some families want to wash and dress their person themselves, or hold a vigil at home before the funeral. In most states a family can handle some or all of the arrangements, though nine states require a funeral director for some steps. Even in those states, you can ask for time with your person at home.

When the time comes

Call the hospice's 24-hour number, not 911. A hospice nurse will come, confirm the death and help with the next steps, and the Hospice Foundation of America says it's normal to take time with your person before the funeral home comes. Our guide to the first hours after a death at home walks you through it.

Taking care of you

Medicare hospice includes grief and loss counseling for the family, before and after. Use it. You don't have to be falling apart to deserve support.

For Hospice Teams

Patients often want to talk about their funeral long before anyone asks. In My Own Words: Staff Guide helps social workers, chaplains, nurses and volunteers open the conversation, prioritize what can't wait, and support families who disagree. It includes a one-page summary for the chart and a pocket card. Find it free in the Hospice Staff Library.

More Help

• The First Hours After a Death at Home
• What to Gather Before a Loved One Dies
• Planning Your Own Funeral: A Gentle Guide, with the My Funeral Wishes Worksheet
• How to Write a Legacy Letter
• Grieving Before Goodbye: Anticipatory Grief
• Questions to Ask Before You Choose a Hospice (free printable, for anyone still choosing; en español)
• All our free printables, including Questions to Ask While There's Time

Please note: This post shares general information. It is not legal, financial or medical advice. Funeral, burial and cremation laws vary by state. Your hospice social worker, a funeral director, or a licensed attorney can tell you what applies where you live. If you are in crisis, call or text 988. In an emergency, call 911.

Download free: In My Own Words · Large print · Planning Together

With care,
C. Lindorfer, Noted & Charmed