What Is Terminal (End-Stage) Cancer? What Can You Do After This Diagnosis?

There is no "right" way to cope with terminal cancer, and not everyone manages it in the same way. Nevertheless, the brief guide below may help you cope.

What is the terminal phase of cancer? 

Terminal cancer refers to cancer that cannot be cured or treated. It is sometimes called end-stage cancer. Any type of cancer can become terminal.

Terminal cancer differs somewhat from advanced cancer — which we often know as stage 4. Like terminal cancer, advanced cancer cannot be cured. However, it responds to treatment, which can slow its progression. The terminal phase means that the cancer no longer responds to treatment and the patient’s overall performance status is poor. Consequently, the goal in terminal cancer is to make the patient as comfortable as possible rather than shrink the tumor.

After a terminal cancer diagnosis

When you receive the news, you may feel numb, as though it is happening to someone else. Feelings of sadness, fear, and anger are also normal.

Greta Greer (Director of Survivor Programs at the American Cancer Society) says in a talk, “Some patients never accept a terminal diagnosis and spend the rest of their lives seeking treatment. Others accept it when diagnosed and begin putting their affairs in order".

You will probably need more than one conversation with your doctor to address your concerns and get the information you need. During this process, second medical opinions are also important.

People also differ in how they share their diagnosis. Some readily share it and post on social media for everyone to see, while others prefer to keep the information largely private, telling very few people around them. Those with young children, in particular, may want to keep things normal for as long as possible.

- Related topic: Signs that a person with cancer is nearing the end of life and advice for their loved ones 

What treatment / care options are available at the end of life?

Even if your cancer cannot be treated, remember that supportive care options remain. William Breitbart, chief of psychiatry at Memorial Sloan-Kettering Cancer Center in New York, believes interventions by specialist psychologists or psychiatrists can benefit cancer patients, given that psychiatric disorders affect 35% of them. Patients in the terminal phase, in particular, may suffer from depression and/or anxiety. Therapy or medication can be used for either condition. Both approaches may be used together when needed.

Aimed at relieving symptoms such as pain, palliative care can improve your quality of life. After consulting your doctor, you may also benefit from complementary treatment options such as acupuncture.

In addition, some people join clinical trials investigating experimental treatments. In a clinical trial, you may receive the latest treatments while knowing that you are contributing to future advances in cancer care.

Anxiety about dying

Patients’ most common concerns are receiving effective support from the healthcare team, maintaining dignity, and not suffering. Many patients want some idea of what to expect.

Putting your concerns and questions in writing can help you decide what matters to you and how to cope with it.

What support is appropriate in the terminal phase?

No longer receiving tumor-shrinking treatment does not mean giving up on everything. Below are some effective coping strategies that may support you.

• Focusing on the present by living in the moment
• Recognizing that there will be good days and bad days
• Trying to maintain a sense of normality and routine
• Avoiding predictions of bad things that may (or may not) happen
• Doing things you enjoy rather than focusing only on death

 Emotional support is important during this process, but it may not come from family. Greer says, "After a terminal diagnosis, some families grow closer, while others become more tense and distant." At this point, support for couples and families is important. Many hospitals offer counseling for them.

It may be easier if you begin by asking friends or relatives for help with practical tasks such as childcare, cooking, or driving.

Care planning

Advance care planning allows you to organize your wishes and preferences to prevent confusion or disagreement among family members. It may cover healthcare, legal, and financial matters. We have prepared some questions you may wish to ask yourself to help with planning while coping with a terminal cancer diagnosis.

Healthcare matters

• Would you like to spend this period in a hospital palliative care clinic?
• Are there specific things you do not want, such as feeding tubes or cardiopulmonary resuscitation (procedures to restart circulation and breathing after they have stopped)?
• When you cannot care for yourself, would you like home care to help guide your care? (Provided by care nurses or specially trained healthcare staff.)

Legal and financial matters

• Are your financial affairs in order?
• Does someone know where your important documents are?
• Do you have a will, and is it up to date?
• Do you have life insurance? Do you know when and how you can benefit from it?

Finally:

• Are there keepsakes or heirlooms to give your loved ones?
• Would you like to prepare letters or videos for them?
• Where would you like your funeral to take place?

- Related topic: Do not forget cancer caregivers — 4 ways to support them 

 Setting your priorities can also guide you on this journey.

Above all, you will need to decide what to do with the time remaining. Are there issues you want to resolve? Do you want to continue your old life for as long as possible? Would you like to travel somewhere you have always wanted to see? These questions may help you establish priorities. If you have young children or grandchildren, spending time with them may be your greatest priority.

Some people become advocates for others facing the same problem. Before dying from pancreatic cancer in 2008, Carnegie Mellon University professor Randy Pausch delivered his "last lecture", which became a bestselling book and popular YouTube video. Randy devoted himself to doing everything possible to raise awareness of pancreatic cancer.

Whatever you choose, you will need an idea of how much time you have — years, months, or days. Your doctor may say that such estimates are little more than an educated guess, but this time frame is crucial.

Remaining hopeful…

Everyone needs some sense of hope for the future. During this process, that hope may be visiting a place you love. Or you may hope to enjoy time with family and friends.

Some people believe in life after death and say this gives them hope. Sharing your hopes with others may help make them happen. Many people hope to feel comfort, friendship, and love around them in their final days.

- Related topic: Talking about dying in cancer — is it not time?