Since the publication of Elisabeth Kubler-Ross’s groundbreaking 1969 book On Death and Dying, which first listed the theory of the five stages of grief (denial, anger, fear, grief, acceptance), society has come to grips with this most fundamental aspect of life, dying. No longer are the sick left with religion and nervous silence as their departure nears. Rather, there is a whole catechism of how to deal with death and particularly how to tell loved ones the news once you get a terminal diagnosis.
That’s not to say that finding the right words is easy. What you tell people is a very personal choice, often a mix of comfort, support and grief mixed with regrets, instructions and wisdom. It’s a statement that is as much about your survivors as it is about you and your condition. It’s preparation for a time when you will no longer be able to impart your wishes and your love, a summation of what you have done in your own life and what you hope they accomplish in their own time.
One thing that may surprise someone confronted with the opportunity to tell a loved one of their terminal condition is that the conversation never ends. You should be prepared to see the relationship change, and you should be open to the new possibilities created by that change. Your unresolved conflicts, the depth of your relationships and certainly its strengths will be challenged by this news.
You should also be aware that however someone reacts, it may not be the reaction you expect. Some people cope differently with grief, and you may see some shut down, go numb, or be engulfed in a frenzy of activity and planning. You probably should do as much listening as you can to their ideas without being a counselor. There is no right way for someone to react, and while we all have a certain hope that the news will not be painful or emotionally debilitating, you should be prepared for anything.
Methods of Making the Announcement
There will obviously be a decision on how, when and where you make your announcement. The wrong way is probably to surprise people when they are in a public situation, particularly a child who is in school. You also may have to convey important information, such as if you want to be taken off life support at some point, your method of burial (cremation, in the ground, in a mausoleum, burial at sea), and how and where you wish your remains to be placed.
Some people choose to have a spokesperson make the announcement. They select a loved one or highly valued family member or trusted friend and ask them to tell everyone. You also could hold a meeting and make the announcement or ask your doctor to talk to them. You may choose to speak individually with all concerned to personalize the news and soften the blow somewhat.
The most common response from people, once they get over their initial shock and grief, is to ask what they can do to make your time pass easier or be more pleasant. If you have a plan in place, then you’re OK. It may be as simple as continuing to visit or help with pets, shopping and other concerns. But in some cases, merely talking with someone who has concerns about your condition can be helpful for both parties.
Telling Children
One of the toughest issues is letting young children or grandchildren know about your condition. Some opt out of letting them know, choosing not to burden the child with bad news. But most professionals argue against that, noting that children as young as four years old need closure. Just be sure to keep the conversation appropriate for the age group. Some children don’t process the news immediately, while others have immediate questions. Keep the lines of communication open because children may ponder the issue for a long time before finally asking their questions. It’s important to let them know that grief or even fear is a natural condition when confronted with the terminal news.
It’s also important to let teachers, playmate parents and others close to the child know about the situation as well. That way, they can monitor and understand what the child experiences, particularly if it shows up in writing, drawing or conversation.
One of the biggest no-no’s, professionals agree, is comparing death to sleep. For obvious reasons, you don’t want children going to bed each night with the fear of never waking up or with the false belief that death is a temporary state.
If you have a palliative care team, they can be of assistance in the various successful ways they have experienced in letting children know about death. They may even have resources to share the news. Hospice staff and other counselors are experts at handling delicate end-of-life situations.
Of course, once you tell someone the news, it will be time to put your affairs in order. It will be good to have a conversation with certain people about your plans for a will or medical power of attorney. While some of the conversations may be uncomfortable, they need to be done. A social worker or member of your care team may be able to assist.
The Final Goodbye
Of course, not everyone opts for a grim, tearful farewell. Some people actually hold a party or have someone close to them host one. You don’t necessarily have to let people know the reason for the event, but many of them will know, and it’s a great way to send someone off without being maudlin. Particularly if you have a disease that may encumber your communication in its final stages, it’s a way to clear the decks, so to speak, and have the memories that linger remain fond.
One modern way to say farewell is a video. This can be played at the memorial service if you choose to have one and perhaps personal letters can be distributed to certain attendees.
Whatever you choose, know that you have eased the burdens of those close to you by sharing your news. While it’s not the easiest conversation to have, many report feeling a great weight has been lifted once they tell someone else. That, more than anything else, may be the greatest benefit of having the conversation.