When it comes to supporting someone whose been given a terminal diagnosis, it can be very difficult to find the right words. You may be a family member, friend or work colleague of someone who has been given a terminal diagnosis. How on earth do you talk about what is happening? Whether that’s the practical, physical aspects of disease, or the more elusive emotional aspects of the impact of an illness?
This blog aims to explore what to say (and indeed, not say) when speaking with someone with a terminal illness. Like my previous blog, above all, a compassionate and trauma-informed approach underlines the focus. Just as in my psychotherapeutic work with clients who seek Talking Therapy – compassionate and empathic approaches have the power to transform even the most painful of experiences.
What’s Going On for Someone Whose Terminally Ill?
For a family member or friend, it can be really challenging to care for someone with a terminal illness. We will never know for sure exactly what their experience of their illness feels like. We can imagine how hard it can be but – their experience will always be unique to them.
Yet, there are common themes. I saw this first-hand, myself, as I cared for a loved family member with a terminal illness. Firstly, its likely that your loved one is desperately trying to process and cope with the terrible news – doubting and wondering if that news is even true, and how it could have happened? The biggest question they have is “Why me?” They may even consider they are delusional, that this is, somehow, a terrible nightmare that they will soon wake up from.
This is a form of grief – an anticipatory grief of the death that is to come. And that grief process so often includes a bewildering cocktail of disbelief, shock, denial, anger, distress, guilt, bargaining, struggling to understand or find meaning, depression, hopelessness, helplessness, trauma, and perhaps even acceptance. Knowing this can help you to understand that asking the question: “how do you feel” may be a really confusing question for your loved one – with an extremely complex answer.
And there are physical aspects of serious or terminal illness, too, which also has complexity and stages. Stage one is often the processing and coping with the bad news and making decisions about treatment options. Stage two can include starting those treatments. Stage three marks that ongoing coping and adjusting to the physical changes and the potential pain caused by the treatment. This can be physically demanding, as well as emotionally draining.
It’s worth also commenting on the process many terminally ill people report in relation to their relationships with others. So often, people with a terminal diagnosis report that others say nothing, or avoid speaking about their illness – or, perhaps, they receive pitying looks and statements from others. Sometimes other people – in their own desire to be useful – begin to treat the person with a delicacy and frailty that is not required. I remember seeing a couple in hospital once. The cancer patient was getting dressed, and their partner said, “Let me close your shirt buttons for you.” The patient responded very angrily “Will you let me have some dignity? Maybe it will take me more time, but I would like to do it myself, thank you!” Their struggle is real, yet they expressed their desire to live well with their diagnosis.
What to Say and What Not to Say
So, to tackle the elephant in the room: how should we best approach conversations with others when a terminal diagnosis is involved. Knowing what to say, and what not to say starts with understanding something and empathising with someone with a diagnosis.
The next step is to know your role – know which chair you belong in. Are you a family member, a relative, a close friend from childhood or just a friend, colleague, etc? Understanding the existing dynamic can support you in speaking and communicating accordingly. Keeping things as steady and “business as normal” by staying within the usual confines of your pre-existing relationship can help to bring some predictability and certainty.
Let’s consider some of the many “don’ts” that may just help you to feel more confident around that communication:
- Never treat the terminally ill person as if they are not the same person they were before their diagnosis. Don’t change your behaviour around them.
- Don’t say “I know how you feel”. You don’t.
- Some terminally ill thrive on black humour and find jokes a way to navigate the complexity of the situation. For others, jokes about hair loss, for example, could be really upsetting. Don’t be the first to crack a joke – take the lead from the person with the illness.
- If they do start to talk about how they feel, don’t interrupt, or try to change the subject to stop them feeling sad, and don’t hug them unless they ask you to. Just listening can be unbelievably supportive.
- If the terminally ill person asks you for some practical support, e.g., picking them up from the hospital or something else, don’t play the hero role. You don’t need to fuss or brag.
- Keep their dignity safe. Never take photos or share anything about them on social media without their permission.
- Don’t pity them! Phrases like “you poor thing”, “at least you are lucky enough to get support”, “life is being so unfair to you”, endless awwwwws and that “sympathetic” voice tone just make the terminally ill person feel small and sad. Not needed.
- Don’t talk about the cancer or their illness unless they confirm that they want to.
- Don’t try to fix their bed, tuck in the corners, plump the pillow or try to feed them. Such actions often come from your need to be helpful rather than what the person actually wants.
- Don’t say “just let me know if you need anything” and then never turn.
- Don’t cross their boundaries.
- As terrible as it sounds, some people will be there just so that others can see how generous they are being, or to share the news on Social Media. I experienced this with a family member. Nowadays I am completely shocked how some non-friends can take advantage of someone who is fighting hard to survive, but unfortunately it does happen.
- Cancer patients are vulnerable due to chemotherapy and can feel overwhelmed by their emotions. If they are not feeling well, and you notice any frustration or any tiredness in their face, don’t prolong your visit.
- Don’t visit a terminally ill person without checking with them first.
- If you feel emotional for yourself, don’t use the visit to offload your sadness in a way that places too big an expectation on your family member or friend. Equally, don’t pretend everything is fine with a fake smile if you feel distraught. Opening up and speaking about how you feel can build intimacy – but it is all about the balance.
- Don’t beat yourself up that you’re not doing enough; I used to feel like that all the time. You are doing a lot just by being there for them.
What to Say
The things you should say are much easier. Remember less is more.
- Be there, listen, and remember. Keep in mind your loved one’s needs, and how you can help and do things together. This should always be according to their energy level and mood too, and make sure that whatever you do is not outside their strength capacity.
- Be honest and genuine if you want to contribute to their journey. That is something they will never fail to feel.
- If your loved one is having a bad day, feeling blue, or has maybe received some bad news about their illness, all you need to do is allow them to be how they need to be, and stay with them. If they are angry, sad, mourning, maybe silent, they absolutely have the right to be that way and express the way they feel in how they are and what they do. Remember that anger is a part of the grieving process and letting it out can be really helpful. Note: never say to them “it will be ok” or try to distract them with “let’s do this or that”. Allow your loved one to express their anger, and if they look to you for confirmation (and you are a family member or close to them), tell them “Listen, it’s ok to be angry, let it out!” and offer them the space to do that.
- Find the right moment to share your feelings and how much you care and let them know your support is always available. Your loved one might wonder if they are being a burden and they need to hear how loved they are.
- If you think it would be helpful, you can suggest counselling or group support for cancer. If they are on a break from chemo, maybe go somewhere nice and warm. Always check with their doctor first!
- Please treat them how you normally would, bearing in mind how tough what they’re going through can be, because they are still a normal person.
- Living with someone who has a terminal illness can be difficult at times, and you might need support for yourself. That means you will need some boundaries and find a way to communicate your needs and those boundaries.
So, remembering that any terminal illness impacts the person with the illness as well as their wider circle of family, friends and acquaintances. The learning process is important everyone impacted by a diagnosis and can really make a difference when it comes to speaking and communicating in the face of a diagnosis. Normalising talking about illness in an appropriate way, leaves plenty of space for appreciating each other’s feelings and honouring them. These are powerful ways to support yourself as well as your loved one.
If you need support and help, please do let me know. If you have any feedback that would be very much appreciated.