How to Support Someone with a Terminal Illness

Terminal illness, sometimes called ‘life-limiting illness,’ is a condition or illness which cannot be cured and is likely to lead to death. Death is, of course, a natural part of life. Everyone dies and many (if not most) of us are afraid of it. Our brains don’t do well with the idea of death, in fact, researchers say that our brains shield us from the existential fear around dying.  

Yair Dor-Ziderman, a researcher at Israel’s Bar Ilan University, says this: “The brain does not accept that death is related to us. We have this primal mechanism that means when the brain gets information that links self to death, something tells us it’s not reliable, so we shouldn’t believe it. We cannot rationally deny that we will die, but we think of it more as something that happens to other people.”   

So what, then, do we do when someone we are close to is diagnosed with a terminal illness or life-limiting condition? How do we face down that existential fear and help? Or cope? Or help them cope? 

Advanced cancer, dementia (like Alzheimer's and others), lung disease, multiple organ failure, congestive heart failure, chronic obstructive pulmonary disease (COPD), kidney failure, AIDS, Amyotrophic lateral sclerosis and adult failure to thrive are among conditions and illnesses which can become terminal.   

What a person with a terminal illness may be experiencing varies from person to person and from moment to moment. These feelings may come one at a time, in groups or they may cycle and include: 

• Denial 
• Fear 
• Shock 
• Sadness 
• Resentment 
• Anger 
• Relief 
• Acceptance  

People’s reaction to the news that they have a terminal illness comes in stages. The way we react to the news that a friend or loved one has received a terminal diagnosis is equally varied. There’s no standard reaction, and there’s no such thing as a right or wrong reaction. Some people feel numb at first, as though what they’re being told doesn’t make sense. Some are immediately frightened, others may initially appear very matter-of-fact.  

At the consultation or doctor’s visit, after a person hears that his or her illness cannot be cured, they may be unable to process or retain information that comes afterward. The diagnosis is simply too much to take in. Friends and loved ones may experience the same thing. If you find yourself in the difficult emotional space of helping someone you care about deal with the premature end of their life, look for ways to support the person, their caregivers and yourself. 

Some tips:

Don’t assume. For example, don’t automatically count someone with a terminal illness out of gatherings, trips or socializing. Someone with a life-limiting illness is first and foremost a person, with interests and an identity outside of their prognosis. If you aren’t sure whether a loved one would like to get together, invite them and let them decide. 

Try not to focus on the illness. While you may feel the need to talk or ask about the person’s illness, it’s a better plan to allow them to determine when and how much to talk about their health. People living with terminal illnesses can feel removed from everyday life, or reduced to only their medical condition. Some may feel that the person they were before diagnosis doesn’t exist anymore, and they may miss the autonomy they had before. When an illness progresses, the person living with it loses control of so much – when to eat, caring for themselves, sleep patterns – so any sense of control you can help them maintain is a very good thing. Even if it’s as simple as when or if to talk about their illness. 

Avoid describing the person as ‘dying.’ It’s natural. When someone has been given a terminal diagnosis, ‘dying’ is the word that comes to mind. Remember, though, that to them they are very much still alive, even though their time might be limited. Technically, also, a person is only ‘dying’ at the moment of death. Until then, he or she is living with a life-limiting illness. A fine distinction? Perhaps, but fine distinctions are often the most important distinctions. 

Remember caregivers. You really can help someone by supporting their primary caregivers. People caring for seriously ill loved ones need relief. Ask if they need an afternoon or evening off. Hug them if they’re huggers. Make a meal, bring them a coffee.  

Rephrase! Don’t say “It’s going to be okay” or ask “How are you?” It’s insensitive to say it’s going to be ok to someone whose fate has been sealed by illness, especially if we don’t know where they are in their processing/mourning process. Instead, ask how they are feeling today. Of course it’s natural to open a conversation with ‘how are you,’ but asking how a person is feeling today helps keep the focus on the moment at hand, and is less overwhelming than asking a big, open-ended question.    

Jump in and help. If you tell some to let you know if they need anything, that’s vague. It might even feel meaningless, even if you really want to help because it’s non-specific. Just jump in. Visit often, or call. Ask if you can tidy up the kitchen or take care of some laundry. Ask for a grocery list and mark that chore off the list or mow the yard.   

Don’t give up. Someone with a life-limiting illness may not feel well enough for visitors all the time, but don’t try once and then throw in the towel. Living with a terminal illness is difficult and unpredictable. Everyone’s emotional bandwidth is limited – people dealing with end-of-life issues may find that their bandwidth is much narrower or fluctuates more than before. Keep checking in.  

Make it a no-phone zone. Sometimes we check our phones without even thinking about it, but if there’s a time to put it away, it’s when you’re spending time with someone whose life has been shortened by disease. Be fully present for them. 

Say something. Even if you aren’t sure what to say, something is almost always better than nothing. It could be as simple as ‘I’m thinking of you,’ or ‘I love you.’ You don’t have to directly address the illness or condition, in fact it may be a relief for the person to not talk about it. Speak from a place of kindness and it’s hard to go too far wrong. 

Feel what you feel. You may find yourself dealing with anticipatory grief, which is similar to the grief we experience after someone dies. There are differences to be aware of. There is often more anger. You may not know how you feel – holding on and letting go at the same time. Anticipatory grief is a deep sadness which is hard for anyone who hasn’t experienced it to understand. Not everyone will feel anticipatory grief, and it’s neither right nor wrong. Don’t go it alone – talk to someone about your pain. Find a friend who doesn’t judge and speak openly and honestly, making it clear that you don’t need them to fix anything but just to listen.