THE PSYCHOSOCIAL: Sitting with Silences
There has been a lot of discussion about death lately in the media. We openly mourn and reflect on pop icons and global tragedies on social platforms, but still remain extremely private about discussing our own death or that of those close to us. So what if you are someone who is dying or living with a chronic illness? What if you want to talk about it? How do you do that if the people around you are scared?
WHAT IF YOU WANT TO TALK ABOUT DEATH?
In Dying With Nothing To Say, Katie Roiphe writes from the perspective of a loved one about the fantasy of a final conversation with someone they love. I agree that most deaths are not glamorous or pretty and those watching someone die shouldn’t have expectations about righteous last words. However, I do think the other side to this argument is that discussions about end of life are so uncomfortable that most people go out of their way to avoid them. This can cause a disservice to someone who is imminently facing their mortality and needs to process it.
Over the years of working with young women with metastatic cancer, I have been asked how to have these conversations with their loved ones. While it is easier for trained professionals to listen and talk about death, for most it is extremely difficult and the topic often remains off limits. It becomes the pink elephant in the room very quickly. A dark pink elephant.
Here is my advice for those that want to start the conversation about dying with the people they love:
Choose your people wisely
Not everyone is good at having difficult conversations. Much like when you were originally diagnosed, there are going to be people who are good at one thing (think about your sister-in-law who has baked you 100 casseroles) and perhaps not so good at others. You most likely know by now who that inner circle of people is who say the right thing and you can have these intimate convos with. If writing comes easily to you, have some thoughts written down that may help to generate the discussion or maybe start with a preliminary email.
Be direct: Your people may not be mind-readers
Once you have a sense of who you can trust with this difficult topic, be clear what you want to talk about. If you are cracking jokes about your funeral or what you are leaving to whom, they may not know that you are seriously wanting to dive into this conversation.
Here are some key tips on starting a conversation and pushing through the difficulty to get across what you need to share:
- Be clear about what you need. “I want to talk to you about__________” is sometimes the best way to start the conversation. If you want to give them a heads-up beforehand, maybe send them a note to let them know.
- Note the specific things you want to discuss. Are they practical things like funeral planning, legacy tasks or estate planning? Or do you need to just talk about your thoughts and fears?
- There may be specific people you need to have this conversation with, but they are not open to it. For example, if you haven’t discussed specific arrangements with your partner or your parents for fear that you may upset them. Consider a professional mediator for these conversations or you may want to rehearse or roll play with someone else who is open to it beforehand.
Actions speak louder then words sometimes…
Like going through treatment when everyone wants to help, assigning a job or a project might augment awkward discussions. For example, who might be good at planning a funeral or helping complete some of the legacy projects you have started? One woman who I worked with asked me to help come up with a list of movies she could watch with her children and a playlist of her favorite music. Sometimes discussions flow from these projects and doing something like creating a list can feel very productive.
Sometimes there are no words. There is only compassion.
Talking about death with someone you love can be extremely painful and uncomfortable, and many times there are no words. Chances are you are terrified, and they cannot relate to this type of fear.
Normally your go-to people are the ones that can empathize with you. Empathy is understanding how someone feels, and trying to imagine how that might feel for you — it’s a mode of relating. This can work well when you are sick after chemo for example, because even if they haven’t experienced chemo, they know what it feels like to be very sick. And even if they don’t, they can try to imagine it and offer a response. Compassion takes things a step further and requires action. It is the ability and willingness to stand alongside someone and to put their needs before your own.
Your loved ones will want to speak and offer their best advice the most when you are at your worst. This will be their way of trying to make it better in a situation where there is no better. The reality of what is happening cannot be changed, and you are not going to feel “better” or good about it. Let them know that you are not going to feel scared or alone if they are able to sit with you in your grief and pain.
FIND THE PEOPLE WHO CAN SIT IN SILENCE AND HOLD SPACE WITH YOU
Here is my advice to you – find the people who can sit with you in silence and hold the space for you when you are suffering. What does it mean to hold space for someone else? It means that we are willing to walk alongside another person in whatever journey they’re on without judging them, making them feel inadequate, trying to fix them, or trying to impact the outcome. When we hold space for other people, we open our hearts, offer unconditional support, and let go of judgment and control. This is what is often required during end of life conversations and if you are doing it for your loved ones, it’s time to stop and look for the people who understand that what you have to say, is way more important than their own needs and desire to control the situation.
For more information on end of life, check out the following:
Interactive site for conversations about death: Death Over Dinner
Guide on practical + end of life care planning: A guide from Willow
Spiritual advice and guidance: Roshi Joan Halifax
Rethink Breast Cancer’s documentary on being young and living with metastatic cancer: I AM ANNA
Rethink Breast Cancer’s practical tips and best advice from young women: Young with Metastatic Breast Cancer
Rethink Breast Cancer’s video series for kids about cancer: Mission Recovery
Rethink Breast Cancer’s video series for caregivers: How to be a loved one (of someone with cancer)
Support for the whole family: Canadian Virtual Hospice
Young Survival Coalition End of Life Series: The Shady Pink Elephant
A quick conversation guide for friends and loved ones: How Not to Say the Wrong Thing