Life Planning with Later-Stage Lung Cancer

Medically Reviewed by Minesh Khatri, MD on July 24, 2022
Written by Hallie Levine
5 min read

If you have late-stage lung cancer, it may be difficult to think about what’s ahead. But when you make these decisions ahead of time, it’s less stressful for both you and your loved ones. There are many things to consider when it comes to end-of-life planning.

You may have specific ideas about what you want your end-of-life care to look like. But there may also come a day when you can no longer communicate with loved ones and your medical team. That’s why it’s important to get all your legal documents together before you get really sick. These are known as advance directives and include:

A living will. This details your end-of-life medical care choices. Questions to ask yourself as you write it include:

  • Do you want to be resuscitated if your heart stops?
  • Do you want to be put on a ventilator, or breathing machine, if you are no longer able to breathe on your own?
  • If you become unable to eat, do you want to be put on a feeding tube?

These are decisions that only you alone can make. But if you don’t put them in writing, then others will be forced to make them.

Power of attorney. This names someone to make medical and/or financial decisions for you if you become unable to. You can pick two people – one to make health care decisions, and one to make financial decisions – or they can be the same person.

You can hire an attorney to create your advance directives. The National Hospice and Palliative Care Organization also provides free advance directives and instructions for each state. Keep in mind that different states have different requirements for advance directives. If you spend time in more than one state (for example, you have two homes), it’s important to complete the advance directives for both. Another option is to use Five Wishes, a document that’s legally valid in most states.

Some people also find it helpful to create a letter of instruction. It’s not a legal document. But it provides instructions for family that may be helpful to them once you are gone:

  • Who you want to take in your pets
  • Names and contact information of important people who need to be notified of your death, like extended family, your attorney, your financial adviser, and your insurance agent
  • Account information for bank and investment accounts
  • Details on the type of funeral or memorial service you want

 

You may have to bring up the topic yourself. Your doctor may not want to mention it to you because they are worried that they may upset you or cause you to lose hope. But it’s an important issue to discuss with them to help you through your journey. Patients who begin this conversation with their doctors early on report that they feel better prepared. It can help you figure out ways to:

  • Live alone
  • Relieve symptoms
  • Enhance your spiritual well-being
  • Help your family cope when you’re no longer there

Here are some points to keep in mind when you talk to your doctor to help promote the discussion:

  • Ask them to give you a sense of your prognosis. It may be a hard question for your doctor to answer, but if you have a sense of how long you have to live, it can help you decide what to do about your care. You’ll want to have a conversation about the treatment options available to you, and the effect they may have on your disease as well as your quality of life.
  • Let your doctor know what your care goals are. They may be different from your doctor’s, depending on whether you are focused on quality of life or length of life. You want to make sure that you both are on the same page.
  • Emphasize your role in decision-making. Some patients want to make all the decisions themselves, while others want their medical team to call the shots. It’s important that your doctors know what you’re comfortable with.

 

This may be difficult, because family and friends may not want to discuss it. Cancer is a family illness, and while you sort through your own emotions, your loved ones also need to work through feelings about losing you. You can help if you:

  • Are open about your cancer. This includes your prognosis, treatment, any news from your doctor, and anything you may need.
  • Let them know that you are OK to talk about your cancer and end-of-life planning. And let them know you will be honest with them, and you expect the same from them in return.
  • Explain what may happen in the future, including what may happen once you enter hospice.

Some loved ones will be supportive and available. Others may seem to avoid you. They may not know how to act around you. They also may not want to think about your end of life because it reminds them that one day they’ll die, too. You can explain to them that you’re the same person as you’ve always been, and you want to spend time with them.

When you have less than 6 months to live, you’ll be placed in hospice care. This focuses on quality of life, rather than the length of your life. The focus is on treating symptoms and making you comfortable in your last days, weeks, or months. You’ll need to decide if you’ll do hospice at home, or go to an assisted living center, a nursing home, or an inpatient hospice program.

If you decide to do at-home hospice, you’ll need to pick a loved one to be your primary caregiver. They will work with you and your hospice team to come up with an individual care plan. Home hospice does require that someone be home with you 24/7, although hospice staff, including nurses, will visit regularly, and are required to have someone on call around the clock. You’ll have to talk to family and friends to decide who will be your main caregiver. You may need more than one person if your partner or children have full-time jobs.

It can be very overwhelming to arrange your own end-of-life care. There are things you can do to help cope:

  • Keep a diary about your emotions and feelings.
  • Find support groups, either in person or online.
  • Talk to a therapist.
  • Seek spiritual support. Spiritual questions are common as you come to terms with end-stage cancer. Some people find comfort if they talk to a spiritual counselor such as a priest, minister, rabbi, or other clergy member. Others gain strength from a religious institution’s community of support.
  • Spend time with loved ones. You may find solace if you revisit memories together that will make it easier to deal with the pain you feel during this time.