You might struggle to think or talk about the end-of-life care you want if your cancer continues to grow and treatment no longer works. As uncomfortable as it can be, taking the time to plan for this situation makes your wishes clear. It can reduce the stress you and your loved ones have during that time as well.
Think About What You Want
The first step to making end-of-life care decisions is thinking about what you want. Are you OK with treatments that could lengthen your life but might not improve the quality? Or would you rather focus on being comfortable and staying aware? Do you want to try to take part in a clinical trial? Are there any religious or spiritual beliefs that are important to you? Consider your top priorities and get as much information about your options as you can from your health care team.
Talk About It
Once you know your preferences, discuss them with loved ones. Some may not understand or agree, but explaining why you made these decisions could help. You should also talk to your health care team about your wishes and write them down. They may not be able to follow instructions you put in legal documents because of facility rules, their conscience, or health care standards. If that happens, you need to find another doctor or care center that can do what you want.
End-of-Life Care Options
Types of care you can receive at the end of your life include:
Palliative care isn’t any one treatment. It’s a management strategy you’ll work on with your health care team. The goal is to improve your quality of life. It’s often associated with end-of-life treatment and hospice care, but you can start palliative care as soon as you’re diagnosed with any chronic condition. Certain hospitals and health care facilities provide palliative care, or you can get it at home. You may also hear it called “comfort care,” “supportive care,” and “symptom management.”
If your medical team believes your cancer is in the final stages and you may not live longer than 6 months and you don’t want treatment, you can select this type of care. You can also choose it if your cancer is terminal and treatments aren’t working. The focus shifts from fighting the disease to making you comfortable as you get ready for the end of your life.
A hospice care team consists of doctors, nurses, home health aides, and other specialists. They all work to meet your physical, emotional, and spiritual needs. Your primary caregiver -- or a relative or friend who helps with decisions and takes care of you -- is very involved with this group and may assist them with your care.
Hospice care can have other benefits for you and your loved ones. You could have access to religious and spiritual support, grief counseling, physical therapy, a social worker, homemaker services, and more.
You can get hospice care in:
- Your home
- A long-term care center
- An assisted living center
- A nursing home
- A hospital that provides palliative care if you have cancer
You may want to see if you can take part in a research study for new cancer treatment. A clinical trial might not make your situation better, but the knowledge scientists gain could help people in the future who have cancer.
These people may be part of your health care team already. They can help you during the end of your life. If they aren’t and you’d like to connect with any of them, ask your team for guidance.
- Social worker: They can help you deal with emotional and social issues. You can also work with them to find solutions for choosing a care center, dealing with insurance, and other practical problems.
- Mental health professional: You and your loved ones naturally may have some anxiety or depression at this time. If these feelings are constant, it’s time to talk to a professional. They can help you work through those emotions.
- Case manager: Your case manager helps organize the many aspects of your care. They are also there to be a resource. Talk to them about any specific support services you need.
- Religious or spiritual counselor: You may receive comfort from your beliefs. If you want to, you can connect with this kind of counselor to find out more about how they can help you.
- Physical and occupational therapists: These health professionals can show your caregivers helpful strategies, such as how to:
- Change your position
- Properly move you from your bed to a seat
- Not hurt themselves during these tasks
Making Your Wishes Known
You can use different types of documents to explain the kind of end-of-life care you want. Your health care team and loved ones will use them to make medical-related decisions for you if you can’t make them.
Depending on what state you live in, these legal documents may be called
- Advance directives
- Health care proxies
- Living wills
- Medical directives
Your state also decides if you can make your own version of these items or must fill out a standard form. You should be able to get forms from a lawyer, your state bar association, or a program by the National Hospice and Palliative Care Organization called CaringInfo. Your health care team can help you complete the documents.
When you create this paperwork, you should also prepare other legal documents that aren’t advance directives. Talk to a lawyer about what you can include in each item and the different types available:
- Power of attorney
Be sure you understand and review any form before signing it. What you include should reflect your spiritual or religious beliefs. It’s important that you know the rules about who can witness you sign advance directives as well. If you have a home in more than one state, you might want documents made in each one.
If you want to make changes to advance directives, destroy all the current copies and start again. You can also cancel one at any point. Everyone with copies needs know about this or any changes.
When all your documents are complete, store them in a safe place with other important files. Adults you trust, like your health care proxy or “agent,” should know where these papers are and have access to them.
Tell your family members and close friends about the documents as well, and what you put in them, so they can learn more about your wishes. Anyone that your health care team might need to contact about your condition will need a copy. They can also file one with your medical records. If you go to the hospital, bring the documents for your medical file along.
If you have a lawyer, make sure they have copies of all this paperwork. Review these documents, and confirm the willingness of your health care proxy regularly in case you need to update them.
For this document, you write down what you do and don’t want to happen to you in special medical situations. These are times when you can’t make your own choices and need certain treatments to stay alive. You can often use a living will if you’re terminally ill or injured, or permanently unconscious. Another doctor besides the one taking care of you usually must agree that your condition allows for the use of your living will. If doctors use it, you can still get care that makes you comfortable, like pain medicine.
What you can include is different in some states. You may be able to say whether you want:
- Treatments that will keep you alive (life-sustaining) if you’re terminally ill or hurt but don’t make you healthy again. These include restarting your heart (resuscitation) or breathing if it stops and using machines like a ventilator to help you breathe.
- To get fluid and food through a tube or other device if you can’t eat or drink
- To be an organ and tissue donor when you die
- Other medical directions about the kind of treatment you do and don’t want
Make sure you fully understand the details of this document before you sign it. Some parts of it (clauses) might affect you in ways you don’t expect, like preventing the use of a device you currently include in your treatment.
Health care proxy
This is a person you give permission to make medical choices for you when you can’t. This often happens because you aren’t in the right mental state or you’re unconscious. Again, medical professionals decide if you’re in this situation. You might also hear them called a “health care surrogate” or “durable power of attorney for health care.”
You can have this document and a living will, but make sure your wishes in one are in line with those in the other. Your health care proxy can’t make decisions for you if you become able to make them again. You usually can only make one person your health care proxy, but you can choose another person or multiple people for backup.
Talk to the person you want to make your health care proxy and their alternate before putting their names down. They may not feel comfortable making decisions for you. Or they might have religious or spiritual beliefs that would stop them from doing what you want.
Physician orders for life-sustaining treatment (POLST)
This form communicates your wishes as medical orders when you’re very ill, but it isn’t an advance directive. Doctors can use it if you have a medical emergency. You can get this document in certain states. You’ll need a doctor or another qualified health care provider’s signature. Other names for it include medical orders for life-sustaining treatment (MOLST) and provider orders for scope of treatment (POST). Your doctor should explain what the form includes and fill it out for you, then you sign it. You may discuss if you want to use a breathing machine or if you’re OK with cardiopulmonary resuscitation (CPR).
You may want a POLST form because it applies to paramedics, emergency medical technicians, and other emergency professionals. Advance directives don’t.
Do-not-resuscitate (DNR) orders
You can use these both in and outside of the hospital. They tell your health care team not to try to restart your heart or breathing if it stops. This order can also tell them not to use machines to keep you alive in those situations. At the hospital, you can request that your doctor include a DNR order in your medical record. Each time you go to a hospital, make sure the doctor knows you want a DNR order. Some facilities make you ask for one every time.
If you want a DNR order to apply when you aren’t in the hospital, see if your state requires a separate form. Whether it’s on a document, bracelet, wallet card, or something else, you must have a valid non-hospital DNR order that emergency medical service (EMS) teams can see. You can ask your health care team how to get a non-hospital DNR order.
Do not intubate (DNI)
Doctors won’t put in a breathing tube and place you on a ventilator if you inform the team of your wishes and complete the paperwork.
Organ and tissue donation
Check to see what your state needs from you to do this. You may be able to include it in your advance directives. You should also make sure important people are aware that you want this, including your health care proxy, relatives, and health care team.
Letter of instructions
You can use this to give other important information related to the end of your life. A letter of instructions isn’t a legal document but can relate to paperwork that is, like your will. For example, you can say who you want your children or pets to stay with until the guardian you listed in your will can arrange to take them in. You can also include the contact information of people you want to get notifications about your death, funeral or memorial service preferences, and more. This document is also a good place to share your financial details.
There are worksheets and checklists available online that can help you organize getting your personal affairs in order. You may find these helpful as you put together your letter of instructions.