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Facing a Terminal Illness

Being diagnosed with an incurable rare disease can be an incredibly difficult experience. It may affect you physically, emotionally, and spiritually. It is important to learn how to deal with practical concerns surrounding the news of a terminal illness while also coping with the emotions that arise.

Talk to your doctor

Your doctor is one of the first people you will talk to about your diagnosis. They will discuss your treatment options, how you can expect to feel physically, and some ways to ease pain. You also may choose to tell them how you are feeling emotionally.1,2

Remember, your doctor is there to guide you through this time, so do not hesitate to ask questions. Having open, in-depth conversations with medical staff has been shown to ease stress in people with a terminal illness as well as their loved ones.1,2

End-of-life planning

It is difficult to think about, but you and your caregivers should have a plan that outlines how you want to be medically treated near the end of your life. Here are some options to consider.

Advance directive

This legal document instructs your loved ones and doctors on how to medically treat you during a healthcare emergency or at the end of life. There are two common types of advance directives:1

Living will – This document outlines your wishes for a time when you can no longer make decisions on your own.
Healthcare power of attorney or proxy – This document appoints someone to act on your behalf when you are ill.

Do-not-resuscitate order (DNR)

If your heart stops beating, a DNR instructs doctors and other healthcare professionals to not try life-saving measures. These measures may include CPR or defibrillation.1

Other life support options

Think about whether you would want doctors to use other life-support tools, and document those wishes. Life-support tools could include:1

  • Ventilator
  • Respirator
  • IV hydration
  • Feeding tube
  • Hemodialysis

Palliative and hospice care

These two types of specialized care are available to help you and your loved ones cope with a terminal illness. While there is some overlap, they are different services offering specific care at varying stages of your condition.

Palliative care aims to ease the symptoms of your illness or the side effects of medical treatment. Palliative care is available to anyone with a serious illness, whether or not it is terminal. You can have this type of care along with other treatments for your condition.3,4

Hospice care focuses on your comfort and well-being near the end of your life. Hospice care is for people doctors believe have 6 months or less to live. While doctors will stop treating your illness when you are in hospice care, you will still receive medicine for pain and other symptoms. This type of care also offers support to your loved ones.3

Your doctor can give you a referral to a palliative or hospice care specialist.3

Working through your emotions

When you learn that you have an incurable illness, it is normal to experience a range of emotions. You may feel fear, sadness, anger, or a number of other feelings. Facing these feelings can help you manage them effectively.5

For example, if you are fearful of death, think about why. Are you afraid of a painful death? Are you afraid of dying without your friends or family around? Understanding your fears and sharing them with your loved ones could help ease the burden.5

Guilt and regret are also common feelings near the end of life. You may be sorry for things you have said or done throughout your life, or things you did not get to do or say. Try not to focus on the past but on what you can do today. Take the time to make amends with your loved ones by asking for forgiveness, and extend that same grace to yourself and others.5

Processing these emotions may require the help of a trusted spiritual or religious advisor, friend, or counselor.5

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