What Can You Expect During End Stage Lung Cancer

Physical, Emotional, and Spiritual Changes at the End of Life

It’s hard to ask about what to expect at the end of life with lung cancer. Yet many people wish for some idea of what to expect at this final stage of the journey for our loved one or for ourselves.

How any person experiences the end of life will be different, just as people are all different. Some people will have pain but others won't have any. Some people will need oxygen to control shortness of breath; others may breathe comfortably on room air. Some people decline very rapidly at the end of their journey with cancer, and others seem to live on despite all odds.

Just as physical symptoms in the final stages of lung cancer vary for different people, our loved one’s emotional response is hard to predict. Some people hold on, wanting to “fight” their cancer to the end. Others appear to accept death more readily. But despite our differences, there are common changes that occur for many people. What might happen at the end of life?

End of Life Changes

Again, it's important to note that everyone is different. That said, looking back many families can tell when things "started to change." There are both emotional changes and physical changes that are fairly universal, no matter what condition a person is dying from.

With lung cancer, there are often certain occurrences which in some ways herald the end. Some of these conditions which suggest the end is nearing include pleural effusions which require repeated draining or the placement of a shunt, increasing pain to the point where being awake is troubling, extreme weakness and a complete loss of appetite. Let's look at some of the specific changes you may see.

Emotional Changes

Beginning in the last few months before death, your loved one may begin to withdraw and appear less interested in visiting with family and friends. Activities that once excited him may no longer capture his interest.

He may appear lost in thought, and as one woman remarked about her husband in the late stages of lung cancer, appear to “have one foot in the next world.” He may begin to sleep a lot and become irritable when fatigue and limitations interfere with his ability to care for himself as he did in the past.

Having a support system and taking care of yourself is very important at this stage of the journey, both for your own well-being and so you can support your loved one with cancer as well as possible.

Spiritual Changes

It's very common near the end of life for people to talk about seeing those who have died before or even seeing heaven. This happens often, whether someone has been religious or not. Sometimes family members may mistake these "events" as delirium and terminal restlessness, which can be very frustrating for those who are dying. The same may occur when a dying person appears to have an awareness that death is near. It's important to talk gently to your dying loved one, and instead of "correcting" her comments, provide comfort that she is not alone in the life she is still living here. After all, we really don't know what a person who is dying may or may not be seeing or understanding. If loved ones do try to correct a dying person, or tell them that they are "hallucinating," they often become very distraught. It's best to simply listen and allow your loved one to share comments such as these, even if they are disturbing to you.

Physical Changes

Physical changes during the final stages of lung cancer can be related to the tumor in the lungs, the spread of cancer to other parts of the body, or due to the terminal stages of cancer in general. By definition, the final stage of lung cancer implies that treatment options have been exhausted; a cure is not possible. But palliative treatments, treatments used to minimize symptoms or improve comfort, may still be used. If you are enrolled in hospice, you may be given a hospice comfort kit which has supplies which can help with many of the symptoms at the end of life. Some common physical changes include the following.

physical changes in end stage lung cancer
Illustration by Brianna Gilmartin, Verywell
  • Fluid build-up around the lungs: Fluid containing cancer cells (a malignant pleural effusion) may build up in the space surrounding the lungs, resulting in shortness of breath. To improve breathing and make someone more comfortable, physicians often drain this fluid. If the fluid continues to build up, a procedure called pleurodesis may be recommended to prevent fluid from accumulating again, or a shunt may be placed so that you or a loved one are able to drain the fluid at home. Having a shunt which you need to drain may sound frightening, but this procedure is used often for those with lung cancer and can do a lot to ease shortness of breath due to the repeated build up of fluid around the lungs near the end of life. Keep in mind that the fluid does not need to be drained unless it is causing shortness of breath.
  • Obstruction or bleeding from the large airways: With lung cancers that grow near the airways, the spread of tumor into the airway can cause obstruction and bleeding. Doctors may recommend a procedure or radiation to decrease the obstruction or control bleeding.
  • Symptoms due to brain metastases: When lung cancer spreads to the brain, people may experience headaches, seizures, and other neurological symptoms like weakness or speech problems. Radiation therapy may be recommended to slow the growth of these tumors and ease symptoms. Sometimes recurrent seizures at the end of life may require medications to limit the number of seizures.
  • A cough which won't let up: Sometimes the coughing can become relentless, due to the growth of a tumor in the airways or due to secretions that can't be coughed up. There are many things that can be done to control coughing and make your loved one more comfortable.
  • Shortness of breath: Many people note increasing shortness of breath and become frightened that they will feel like they are suffocating. Thankfully, in actuality this is uncommon. Oxygen can be very helpful, but medications are often a mainstay. Medications such as morphine can turn off the signal to the brain that tells you that you are short of breath so that even if your oxygen levels fall, you won't experience shortness of breath.
  • Symptoms of terminal cancer: Profound fatigue is very common in the late stages of lung cancer. Weight loss is also almost universal, and it occurs even when people are eating a diet with adequate calories. Cancer cachexia, a syndrome including unintentional weight loss and muscle wasting, is very common in the later stages of cancer. 
  • Pain: Many people are concerned about physical changes at the end of life, asking the question, "Is death painful?" There is not necessarily pain at the end of life, and this varies tremendously among different people. When lung cancer spreads to bones in the chest and spine, there are many options for pain control, including radiation therapy and pain medications. Make sure your loved one understands that using pain medications now won't mean that nothing is available if her pain gets worse, a very common concern. There are many different modalities for pain control, and your loved one won't run out of options if she seeks to have her pain treated today.

The Final Days

During the final days, your loved one may begin a phase known as “active dying.” Rather than an event in which the body simply turns off, researchers now believe that dying is an active process the body is designed to go through.

Physically, as death nears, your loved one's skin may become cool as body temperature lowers, and you may notice mottling (bluish, blotchy patches) on her skin. Perspiration may increase, and though cool, her skin may feel wet and clammy. She will usually stop eating and drinking, but this is a normal process at the end of life. She will not feel thirsty or hungry.

As death gets closer, her breathing may become increasingly irregular. Rapid, deep breaths may alternate with periods of very shallow breathing (Cheyne-stokes respirations). A gurgling sound (the death rattle) may occur due to build up of secretions in the back of the throat. This can be very distressing to family members but is apparently not uncomfortable for the person who is dying.

Emotionally, your loved one may become agitated, picking at the sheets or clothing. Confusion and hallucinations are common, and those who are actively dying often speak of seeing loved ones who have gone before. In the last few days, she may have a surge of energy, sitting up if she has been bedridden, or eating a full meal after eating little for days.

This can be heart-wrenching if family members misinterpret this as a sign that their loved one is getting better. Most likely, it is the body’s way of allowing a dying person a last chance to say goodbye. As the dying process progresses, she will stop communicating and enter a deep sleep. Even if she does not appear to hear you or know you are present, continue to express your love. It is felt that hearing is one of the final senses to leave in the dying process.

The Death

Some people wish to know more about the mechanism that actually causes death to occur in people with lung cancer. Others do not wish to know these details. Knowing these details is not necessary to give your loved one the best care possible, but you may want to know the physical processes involved.

As dying continues, your loved one will stop breathing and her heart will cease to beat. Some people claim they have known the moment their loved one left them; they have had a vision or a physical sensation of their loved one departing. Others find comfort in staying near their loved one’s body as it becomes cooler, finding it easier to let go thereafter.

If your loved one is dying at home, check with your hospice nurse or physician ahead of time to know what procedure you should follow after the death.

In most cases, family members are allowed to spend time mourning and saying goodbye to their loved one before the funeral home is called.

For Loved Ones

Caring for a dying loved can, at the same time, be the most difficult and most rewarding thing you have ever done. It may feel selfish at times, but make sure to take care of yourself during this time. Keep in mind that grieving often begins before a loved one dies—something called anticipatory grief—and can be lonely as others around you may not recognize this early grief. 

When your loved one passes, you may find yourself in a state of shock. What comes next? If you are connected with hospice your hospice team can help you with the next steps, or follow this checklist for responsibilities for survivors after death.

Even if you've experienced anticipatory grief, you will grieve when your loved one passes. Everyone grieves differently, and this is important to keep in mind. You can't rush grief. Take the time you need to say goodbye to this part of your life before moving on to the next. If you continue to have difficulty following the loss of your loved one, seek out a good grief counselor. Just as you were there for your loved one during the dying process, those who live on often need support and comfort as they face life without their loved one.

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