How to Prepare as You Near the End of Life

Learning that your cancer can no longer be controlled can leave you with questions about what comes next. This time is often referred to as “end-of-life.” It may be the final months, weeks, or days of life. Planning ahead during this time can help both you and your loved ones.

Knowing what to expect

Finding out that your cancer can no longer be controlled can be scary. But knowing what to expect and what your options are can help. After you’ve made the decision to stop treatment, ask your cancer care team:

• How long you are likely to live
• What physical and mental changes you are likely to have as your cancer gets worse
• Who can help you manage these changes
• What type of care you will likely need
• What your options are for care now and in the future
• What decisions you will need to make about end-of-life care

Deciding what is important to you

Part of end-of-life preparation includes making some decisions about how you would like to be cared for. Things to think about include:

• Where you want to die
• What type of support you want to manage your symptoms
• What type of medical care you want at the end of your life
• Whether you want life-extending treatments

Also, let your loved ones and care team know about any cultural, religious, or spiritual beliefs that are important to you. Talking openly about your wishes can make decisions clearer for you and everyone involved in your care.

Considering your care needs

During this time, care will focus on comfort, quality of life, and support. Depending on your needs, you may have the option for different levels and types of care. What you need may change over time, so it’s important to know your options.

Hospice care

Hospice care supports people nearing the end of life. It is often used when a person is expected to live 6 months or less. This care focuses on comfort, quality of life, and support to help people live without pain and fatigue as much as possible. Hospice care can be provided at home, an assisted living center, a nursing home, or an inpatient hospice program.

Palliative care

If you are not ready for hospice, palliative care can be a helpful option for added support. Palliative care focuses on helping you and your caregivers manage your symptoms and improve your quality of life at any stage of cancer. Palliative care can be useful if you have symptoms such as pain or fatigue.

Preparing for when you can’t make decisions for yourself

As you near the end of life, there will be times or stages where you cannot communicate your wishes. It’s important to make sure everyone, including your caregivers, family, healthcare team, and any future emergency responders or healthcare professionals, knows your priorities and preferences.

Settling your personal and financial matters

Thinking and talking about death can be hard. But it’s important to take time to get your personal, financial, and legal plans in order.  Planning ahead can help lower stress and give you more time to spend with your loved ones. Taking care of this for your family can be a gift to your loved ones, too.

Find and organize your legal documents

It can help to gather important legal documents in one place and make sure a trusted person knows where they are. This could be a family member, friend, lawyer or the executor of your estate. Having legal documents prepared and organized ahead of time will help you and your loved ones manage end-of-life planning with less stress. These documents may include:

• Your will
• Birth and marriage certificates
• Social Security card or number
• Insurance policies, bank statements, and investment records
• Account information and passwords

Make a financial plan

If you have many financial accounts or responsibilities, consider talking to a financial advisor. A financial navigator or social worker can also help you understand medical bills and costs. They can set up a plan for you and your family that reduces stress. Your cancer care team or healthcare team can help you connect with these resources.

Create or update a will

A will is a legal document that describes how you want your money and belongings handled after your death. If you have minor children, list who will take care of them after you die in your will.

In your will, you also name who you want to manage your estate. This person is often called an executor. They can manage your property and represent your estate in court. They are also responsible for notifying government agencies, credit card companies, and banks of your death.

A will is not active while you’re alive. If you have created a will and need to make changes, it can be updated.

Understand probate

Probate court is the legal process used to settle a person’s estate after death. It is often where ownership of property is transferred to someone or is needed if the value of your assets is more than a certain amount. The rules of probate vary by state. Some assets, such as life insurance policies, may not go through probate.

Probate court will use the will to determine how to pay debt or give assets to your beneficiaries (people who will inherit from you).

If you have a trust set up, beneficiaries may not need to go to probate.

Learn about trusts

A trust is a legal arrangement that gives ownership of your assets to someone so they can manage your bank accounts, properties, and your assets. The person who manages a trust is called the trustee. They are in charge of managing your money or assets in the way that you want during your lifetime and after your death. The trustee has a legal obligation and can be liable for losses if there is a breach (break the law).

Plan for digital accounts and social media

Online accounts like Facebook, Instagram, Pinterest, and more are often left behind without anyone knowing the passwords to access them. Some accounts might be linked to your bank account for purchases or subscriptions. Think about making a list of important accounts and passwords to share with a trusted loved one. You can give them instructions for how you want the account handled after your death.

Plan for the care of children

If you have children, talk with your partner or spouse and other family members about the children’s future care. Talk about ways to support the children during this difficult time. And work together to help continue a consistent routine for them. It may help to make sure a trusted adult can help take them to school or activities if the other parent is not available.

Arrange for the care of pets

If you have a pet, plan for their care. A family member or friend might take them. Or you can post on a community message board to find a safe and loving home. You can also contact your local pet shelter or rescue groups to assist.

Funeral and aftercare planning

It can help to share your wishes for what happens after your death with your family. It may be difficult to discuss, but talking about the many decisions that must be made after death can help reduce stress for your loved ones. Some people find comfort in helping plan a funeral or memorial service. You can write down your wishes, record them on your phone or another device, or talk through them with loved ones.

Things to consider include:

• What do you want to happen to your body? Do you prefer burial, cremation, or aquamation (a water alternative to flame cremation)?
• Which funeral home do you want to use?
• Which cemetery or crematory do you prefer?
• What do you want to wear when you are buried or cremated?
• Will you have a visitation, funeral or another type of service?
• Do you want to have an open casket or closed casket for your service?

The more you discuss the details and decisions your family will need to make, the better prepared everyone will be. And the more people know about your wishes, the more likely they will be followed. If you need more information about funeral planning, The National Funeral Consumers Alliance may be a helpful resource.

Organ, tissue, and whole-body donation

Some people might wish to donate their organs, tissues, or their body after death. Not everyone with cancer can donate organs. Whether it’s possible can depend on the stage of cancer and overall health.

If someone is not allowed to donate organs, they may still be able to donate other tissues, such as skin or parts of the eye. Also, they might be able to donate their whole body for medical education or research.

If this is something you want to do, you can:

• Contact a social worker or case manager
• Sign up through your state
• Find a local organ procurement organization (OPO)

Your wishes can be included in your advance directive and shared with your family and those close to you.

Connecting with loved ones

Staying connected to loved ones during this time can bring comfort, meaning, and peace. Sharing your feelings, wishes, memories, and fears can help you feel less alone and more supported. It can give you a chance to say what matters most, ask for the kind of support you need, and spend meaningful time with the people you care about. These conversations may also help your loved ones understand your wishes and begin preparing for the loss they will face after you die.

Share personal wishes and meaningful items

You might have meaningful items or keepsakes such as jewelry, photos or recipes. You can list names of who you want to give these items to. Or you may give them yourself. You may find comfort and peace in talking with your loved ones about the item and its meaning. And your loved ones can cherish this special gift from you.

Spiritual matters

Spiritual questions are common at the end of life. You may be trying to make sense of your illness and life. This can impact you and your loved ones. Talking with a spiritual counselor or faith leader or practicing mindfulness can bring comfort and a sense of peace.