Planning at the End of Life

The phrase ‘end-of-life’ is sometimes used to describe the final days, weeks, or months of a person's life when their cancer can no longer be controlled.

The goal of end-of-life care is to help people prepare for and make decisions about what they want for support and care. This may include palliative care to control symptoms and help the person with cancer and their loved ones cope with coming changes. Hospice may also be an option as the person with cancer gets closer to dying.

Find out what you can expect near the end of life

Finding out that your cancer can no longer be controlled can be scary. But finding out what to expect and what your options are can help.

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

Decide what is important to you

Ask questions, share your wishes, and begin to actively plan the remaining part of your life. It's normal to want to be prepared. Talking about your options and decisions can help everyone involved in your care. Your cancer care team needs to know what you would prefer at the end of your life, such as where you want to receive care. They also need to know about any cultural, religious, or spiritual beliefs or values that might affect your decisions. This will help you and your cancer care team make the best choices for you.

Deciding about your end-of-life care

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 or not

No matter your decision, the goal of cancer care at the end of life is to give you the best possible quality of life. It can be helpful to include your loved ones in the decision-making process. Sometimes having a meeting with your cancer care team and your loved ones can help. That way your loved ones can learn about your options along with you. They can also hear what the cancer care team recommends so that they can best understand the choices you make.

Make sure that your loved ones know what your choices are and why you have made your decision. This can be a tough process, and everyone may not agree with your choice. But remember, it is your choice, and you must be comfortable with your end-of-life plan.

Make sure that you have someone who supports your decisions and can stand up for you. Some people might question your decisions. If someone questions you, you can tell them that you have looked at all the options with your cancer care team and made the best choice for yourself.

Keep in mind that decisions do not have to be forever. As your cancer gets worse, you might need to make some different choices. But that’s okay – you need to do what’s best for you.

Palliative care and hospice

If your physical or mental health symptoms are affecting your quality of life, things can be done to help you deal with them.

Palliative care focuses on helping you and your caregiver manage your symptoms while you are getting treatment. Palliative care can be useful  any time you have symptoms that need to be controlled. If you are not ready for hospice, palliative care can be a good option.

Hospice care is a special kind of care for people who are expected to live no more than 6 months. It focuses on the quality of person’s life so that they can live as alert and pain-free as possible. Hospice care can be given in the home, an assisted living center, a nursing home, or an inpatient hospice program.

Getting your personal affairs and finances in order  

Thinking and talking about dying is hard. But it is to your benefit to put your personal, financial, and legal affairs in order. Planning ahead, and getting help if needed, helps you spend more quality time with your loved ones and can help bring you peace of mind.  

You or someone you trust (a family member, friend, or lawyer) can find and organize important legal and financial papers. These may include:

• Your will
• Birth and marriage certificates
• Social Security card/number
• Insurance policies, bank statements, and investment summaries
• Account passwords  

If your finances are complex, consider talking with a financial advisor. If you are concerned about leaving your family with high medical bills or debts, a financial navigator or social worker can help. They can work with you to create a plan that reduces stress on you and your family. Your cancer care team can help you find a navigator or social worker. You might also want to let your family know what your wishes are for what happens after you die. Some people take comfort in helping loved ones plan their funeral or memorial service. You can write out instructions, record them on your phone, or talk about them with loved ones.  

If you have a pet, think about who you would like to care for them after you die. If a family member or friend cannot take them in, think about posting on a message board in your community, faith group, or other group in your area. You can also contact your local pet shelter or support group to see if they might be able to help you find a new home for your pet.  

Advance directives  

Advance directives put your decisions about your future health care in writing. Advance directives are legal documents. There are 2 parts to advance directives.  

Living will. In a living will, you state what medical treatments you do or do not want at the end of your life. For example:

• If your heart stops beating, do you want doctors to try to start it again?
• If you cannot breathe on your own, do you want a breathing machine to do it for you?
• If your kidneys no longer work, do you want dialysis? Dialysis is a mechanical process that filters waste from your blood.
• If you cannot eat or drink, do you want to get food and liquid through a tube?
• If you die, do you want to donate your organs or other body tissues?

Durable power of attorney for health care. You choose the person who will make health care decisions for you if you are not able to. This person may also be called a health care proxy, agent, or surrogate. Be sure to choose someone you know will support your wishes.

See Advance Directives to learn more about the types of documents, how to create one that meets your needs, and what it means if you have one.

Making decisions for urgent or emergency care

In an emergency, things can happen very quickly. If the person who you want to make health care decisions for you isn’t available, you may get treatments that you don’t want. Having  a Physician Orders for Life-Sustaining Treatment (POLST) form and, if wanted, a do-not-resuscitate order (DNR) can help.

A POLST form has a set of specific medical orders that you can fill in and ask your health or cancer care provider to sign. A POLST form addresses your wishes in an emergency, such as whether to use CPR (cardiopulmonary resuscitation), whether to go to a hospital and be put on a breathing machine, if necessary, or stay where you are and be made comfortable.

A POLST form has to be signed by a qualified member of your health care team, such as your doctor. Emergency personnel, like paramedics and EMTs (Emergency Medical Technicians) can't use an advance directive, but they can use a POLST form. Without a POLST form, emergency personnel are required to provide every possible treatment to help keep you alive.

In the United States, the POLST form you should use depends on your state. They may be called something else, depending on where you live. You can find a list of the POLST program names on the NationalPOLST website.

A do-not-resuscitate (DNR) order only applies if your heartbeat and breathing stop and you cannot be woken up. The DNR order tells health care professionals that you do not want them to try and restart your heart and breathing, called resuscitation, cardiopulmonary resuscitation, or CPR.

If you are thinking about a getting a DNR order, talk with a member of your cancer care team. CPR rarely works for people with advanced cancer and, if it does work, there may be lasting brain damage. If a person's goal is to live comfortably for as long as possible and then die gently, they may choose a DNR order to avoid CPR. Like a POLST, a DNR is a medical order and it must be completed by a member of the health care team.

Can I change my mind about my advance directive, POLST, or DNR?

Yes. You can change your mind about your wishes at any time and make changes to your advance directive, POLST, or DNR. Check what your state requires to make a change for each of these forms. Those choices are always your decision.

Organ, tissue and whole body donation

Some people would like to donate their organs or their whole body after their death. But organ donation may not be an option for some people with cancer. Any organ donor is checked for medical conditions, including cancer. Whether someone’s organs can be used will depend on many things, such as:

• The type of cancer
• If the cancer has spread (metastasized)
• Other medical conditions or infections
• Age

Even if someone is not allowed to donate organs, they may still be able to donate other tissues such as skin or corneas. Or they might be able to donate their whole body for medical education or research. If you would like to donate part or all of your body after your death, ask your cancer care team about options.

Organ and tissue donation instructions can be included in your advance directive. Be sure that your family and those close to you know your wishes about this.

Meeting personal goals

As you get closer to the end of your life, you might have some personal goals. Achieving them might help your life feel meaningful and complete to you. For example, you might want to:

• Travel somewhere you have dreamed of going
• Connect with old friends or relatives
• Read a favorite book again or see a favorite movie
• Spend time with people who are important to you
• Attend a special event