Making Your Wishes Known

Key Points

  • No one can predict how long someone will live with lung cancer. You can, however, make plans throughout your care and make your wishes known.
  • These discussions will probably lead you to fill out all kinds of paperwork. People can help you do this if it gets confusing or overwhelming.
  • When end-of-life decisions are made ahead of time, it is less stressful for everyone involved.

Take action

Your doctor may not bring up this topic because they don’t want to upset you or diminish your sense of hope. Even though it is scary, start talking about it so you can deal with the logistics and then focus on your lung cancer treatment.

A lung cancer diagnosis can make patients and their caregivers think about topics they have not explored before. It is inevitable to think about death and what will happen in the future. No one can predict exactly what will happen. It is helpful to make plans for whenever that day comes.

What can I expect in the future?

Know that predicting how long someone will live with lung cancer is difficult. The doctor has to take into account the type of cancer, treatment, past illnesses and other factors. They may be able to provide you with an estimate, but keep in mind that it is a guess. Every person is different.

How can I plan for the future when I have lung cancer?

Uncertainty about the future is stressful for lung cancer patients and caregivers. Often, making arrangements for the future and end-of-life care gives patients and their loved ones a sense of control of the situation. It is also a time to reflect on the nice events and memories in your life.

How do I make my wishes known?

Most patients have a specific idea of what they want their end-of-life care to be like. There may come a time when you cannot communicate your end-of-life wishes. For this reason, it is important to discuss them with your family and fill out the appropriate paperwork as early as possible. The earlier you discuss what you want, the less stressful it will be for you and your family when it comes time to make decisions about your end-of-life care. Use the topics below as guidelines for important points to discuss with your doctors and caregivers about end-of-life care.

Points for Discussion

Getting paperwork in order

  • Getting your financial records in order and all in one place (includes account numbers, investments, credit cards, loads, deeds and more)
  • Creating a will
  • Creating an advance directive (also called a living will). An advance directive outlines your end-of-life medical care choices. See a sample advance directive form from the toolkit or download a state specific form.
  • Selecting a power of attorney. A power of attorney designates someone you know and trust to make health care and financial decisions for you if you are unable to do so yourself. They can be two different people or the same person.

End-of-life care

End-of-life care wishes will be spelled out in a legal document called an advance directive. Here are some examples of topics you will be asked to make decisions about:

  • Where do you want to receive end-of-life care? The most common choices are the hospital, a hospice facility or a home.
    • Hospice refers to a system of care for dying people and their families. Most hospice care is given at home but can also be given in the hospital or a hospice care facility. Hospice care is recommended when life expectancy is six months or less. To learn more about hospice care, call the National Hospice and Palliative Care Organization at 1-800-658-8898. Visit www.nhpco.org to find a hospice program in your community.
  • Do you want to receive comfort care?
    • Supportive care, sometimes called palliative care, is aimed at making the patient more comfortable and improves quality of life. Hospice care always includes supportive care but supportive care can be given at any stage of a disease.
  • When do you want to stop receiving lung cancer treatment?
  • Do you want to receive resuscitation if it comes to that point?

Funeral and Memorial Services

Though at first glance this may not be a pleasant topic to discuss or even think about, it is an event that may mean a lot to your family and friends when you are gone. You may have strong feelings about funeral and memorial services. Some people have opinions about the location of these events, participants, music, readings and cultural and religious customs. Other topics to consider include whether or not to have a service, what type of service to have and what you want done to your body. It is important to express these feelings to your support system so your wishes are respected. You may find that discussing your wishes gives you great comfort and allows those who love you to express support.

There are many other topics that will be addressed in an advance directive. The doctor can help you get an advance directive form. Your health care team can help you navigate the decision making.

Bring it up with the doctor

The doctor may not bring up end-of-life issues. It is a difficult topic for even doctors to discuss. The doctor does not want to offend you or make you feel hopeless as you are facing lung cancer. Bringing this up might be scary at first. It is important to bring up the topic and open the lines of communication early and throughout your treatment and care journey.

Think about other family members and friends

This might be time to decide if you want other family members and friends involved in the end-of-life discussion. The lung cancer patient should decide who to talk to about this topic and who needs to be involved in the decision making.

Support during this time

Discussing end-of-life care might be scary, stressful and can be depressing. Reach out to your lung cancer support system to cope with your emotions during this time. Here are some tips:

  • Journal about your emotions
  • Spend time with family and friends
  • Seek support from your faith-based organization
  • Find in-person or online support groups
  • Speak to a social worker, psychologist or counselor
  • Ask for recommendations from your cancer care team

Discussing end-of-life care can also bring you and your loved ones closer. Revisiting your own memories and life history can be a special time for you and your family that makes dealing with difficult topics easier.