In this first part of the Ask a Death Doula series, we will be discussing what to say to someone who has just received a terminal diagnosis. As you can imagine, this can be an extremely emotional and tense period for the patient, as well as their immediate family and friends. When citing the Doulagivers Level 1 End of Life Doula and Family Caregiver Training, this time in a patient’s end of life journey is referred to as the Shock Phase. It is called the Shock Phase because there is often an overwhelming feeling of shock for both the patient and their loved ones. This “shock” can present itself in many ways such as depression, denial, anger and withdrawal.
It is very helpful to remember that this person and family have just lost all “control” over their life. Telling someone that they are terminally ill and that there is no reversing the process requires those around the family to have a strong and supportive presence. There are so many difficult emotions we may want to express but finding the adequate words can be a challenge. We may fear saying the wrong things and the last thing we want to do is make this situation harder for all involved. Sometimes it may take awhile to be able to say anything at all, and that’s okay. Just know that being a kind and supportive presence during this time can make all the difference to a patient and their family and it isn’t necessary to say much, but here are tips to help you navigate this part of the process.
What to do:
– Be an incredibly good listener.
– Ask the family “What can I do for you?” (Little things such as cooking food, cleaning, caring for a pet, sending cards or making tea when others are around can be very helpful).
– Ask the patient “How are you feeling today?” (Starting by asking this question may give you an idea of what they want to talk about and how open they want to be with you).
– Allow them to give direction. (This gives them back some sense of control in a time when they need it most).
– Look for any immediate issues that need to be addressed. E.g. safety, pain, exhaustion of patients and caregivers. (Although your attention will mostly be on the patient, it is important to never forget about the caregivers. Sometimes the best thing you can do is offer support to the caregivers so that they have the strength and energy to care for the patient).
What not to do:
– Say “I’m sorry” or be overly sympathetic to their situation. (Understand that not everyone will respond well to feeling as though others pity them. It is okay to express sorrow for their circumstances but avoid “feeling sorry for them”).
– Give direction or opinionated advice on things that aren’t direct issues to patient or caregiver safety. (Never, ever offer suggestions or ideas for treatment or cures. Do not try to “fix” the situation. They will ask you for your advice if they would like it).
– Take over. (This is about what they want, not what you want. Respect their wishes always).
Why is this important? It is vital to establish trust and security with a patient and their family at this time when their world has been turned upside-down. The best way to achieve this is through being a strong, solid support. Meet the patient and family “Where they are” in their process and work from there. Building trust sets the tone for your entire journey with them.
“Ask a Death Doula” Podcast is a weekly show hosted by Hospice and Oncology nurse Suzanne B. O’Brien. Ask a Death Doula will chronicle the Death Doula movement. We will interview leaders in this progressive movement from around the world as well as patients, families and Death Doulas.