One of the hardest things about learning you have a life-threatening or terminal illness is figuring out how to tell the people you love.
What do you say? When do you tell them? And how do you talk about tough topics -- your wishes for removal of life support, for example, or whether you want to be buried or cremated?
You may worry about how loved ones will feel and want to protect them from the harsh truth. But, say the experts at Capital Caring, which daily serves more than 1,000 people living with advanced illness in the Washington, D.C. area, your family and closest friends deserve to know. And many people also find that telling others about their diagnosis brings a sense of relief.
So how do you go about sharing the news? There's no one right way. You can:
- Tell one very trusted family member or friend and ask that person to spread the word among your loved ones
- Meet with family members and friends individually to talk about your condition
- Hold a "family meeting" to explain the news
- Ask a doctor, nurse, or social worker to talk to your family or to be with you when you do
You can't predict how family members and other loved ones will react. Some will cry; some will become numb; and some will be eager to jump in and be the 'go-to helper' person.
Many people will ask what they can do to help. If you know what that is, it's a good idea to tell them, or they will come up with their own ideas of how to help, which may or may not be what you need. You might want:
- Someone to sit with you and hold your hand during times of day that are particularly tough for you
- To talk a lot about your diagnosis and condition
- To talk about anything but your diagnosis and condition
- People to help you get out and participate in activities you enjoy
- Friends to help you with mundane daily activities, or with caring for children or pets
Talking to Children
What if you have to share the news of a life-threatening illness with your child or grandchild? Many people fear talking about death or the possibility of death with children and try to hide the information. But that can be unhealthy.
Even a child of three or four is old enough to know in simple terms what's happening. And talking about it creates the opportunity to have some closure -- both for the child and the person who is dying. When talking to a young child, it's important to not give too much information. And what you do say should always be age appropriate.
For example, you might tell your young child, "Grandma's very sick. She's trying to get better and her doctors have been helping her, but it looks like she is probably going to die."
Once a child has been told this news, expect them to have questions -- but not necessarily right away. Sometimes, a child may say nothing and turn right back to playing, only to ask about Grandma dying while driving home from school the next day or the next week. Here are some tips to help you with these conversations:
- Let children know it's OK to ask questions whenever they have them. You might say, "You're probably going to wonder about what's happening to Grandma, and it's OK to keep asking me when you have questions."
- If your child says that they feel sad or scared, let them know that it's OK. Tell children that you have feelings like that too. If they catch you crying, there's nothing wrong with telling them that you're feeling sad or scared.
- Let the child's primary caregivers at school, day care, or church know what they are going through, and make sure children know who they can talk to at school.
- Give them the opportunity to express their feelings through writing or drawing.
- Depending on how old the child is, you can explain the treatments the person that is dying is going through.
- Don't ever compare sleep and death ("Grandma will just go to sleep") -- that can make a child afraid of going to sleep.
This is another area in which your palliative care team can be a very important resource. The team has the expertise to tell a 6- or 7-year-old or older child what is going on.
Sharing Your Last Wishes
At some point, there may come a time when you will want to share with your loved ones how you would like things to go at the end of your life: what kind of treatments you do and do not want and how you would like things handled once you have died. Actually, these are conversations that many people should be having with their families even when they are healthy, experts say, but many do not.
You can express your wishes using advance directives such as a living will or a medical power of attorney, but it's also important to talk directly with your closest loved ones about what you want.
People, though, are often afraid to say anything about these matters, and family members often don't want to be the first one to bring them up. That's where a social worker can help. A social worker knows how to ask the hard questions in a gentle way.
So if you're thinking about these things and struggling with how to talk about them, ask your hospital or hospice social worker for help.
Saying Good-bye
When you know that death is near, just how do you say good-bye?
Some people hold big parties or gatherings, or have their families host them. Often the gatherings occur around holidays, and the significance of the gathering, even if not stated, is implicitly understood.
Other people prefer more intimate good-byes. You may want to set aside time to speak with each of your closest family members and friends individually, or give them a gift or letter. Or you may prefer to be more informal and just ask loved ones to visit more often, and be sure to say "I love you" more frequently at each visit.
You may also want to leave something behind for your loved ones: a video, a scrapbook, letters, or photos. Ask your hospital, hospice, or palliative care program if they have volunteers who can work on putting something together with you.
When people are very near death, they are often no longer able to speak or communicate with those around them. That's why it's important to make sure that you've said your good-byes and had any other conversations you want to have with the people you love sooner, rather than later.