How to Speak Honestly About Death*

“Solitude” by Julie Cassin

Thankfully, it takes all kinds of humans to live in this world: truth seekers, avoiders, deniers, optimists, pragmatists, liars, those that rip the bandaid off, and those that keep the bandage on forever. We all deal with the truth differently. It’s normal to feel uncomfortable when the hospice word is mentioned, because right behind that word is death. 

You are not alone if you do not want to talk about dying to your loved one. 

Hospice is there to help soften the dying process: to alleviate the patient's physical pain and to support the patient and family with the emotional discomfort dying inevitably brings. Honesty at this time is a gift. Honesty allows the hospice patient to accurately make choices about what they want in their final days or moments.

When you are honest, you help them clarify how they want to live in this final stage of their life. 

As a hospice nurse, if my patient has decision-making capacity and is of sound mind, it’s my ethical responsibility to tell them the truth. I have had many clunky conversations about dying and have acquired more grace around this topic. Here are gentle ways to begin this difficult discussion. 

Build trust. I find that most patients trust me if I am consistently honest with them. Sometimes trust takes a minute to build. Stay when things get messy and uncomfortable. Return when you say you are going to return. Honesty and trust are inextricably even together. You cannot have one without the other.

Try good cop / bad cop strategy with your hospice team. If you are concerned your loved one will think you have lost hope, consider collaborating with the hospice team. The hospice nurses, social workers, chaplains, and aides have seen many patients die. We have had many conversations about death and dying. We can have an ongoing conversation with your loved one so that you do not feel like the bad guy.

Throw the nurses or doctors under the bus. It happens all the time. Grandma, the bleepity-bleep nurses think you are dying. I don't believe them for a minute, but what if that does happen? You don’t lose face, but you give them an opportunity to express their needs at this moment. 

Ask questions. Grandma, how are you really doing? How is your health? Sometimes the hospice patient is equally concerned about protecting their family. I have had many hospice patients request that I not discuss death or dying with their family. “I don’t want my daughter to think I have given up.” Maggie Callanan in her book Final Gifts asserts the patient usually knows they are dying.

It takes an inordinate amount of energy to keep up the lie rather than sit in the uncomfortable truth. 

Wrap the truth in a fuzzy blanket of hope. Grandma, You are so sick and it looks like hospice is the only option to manage your pain right now. I believe you can beat this, and I will do everything I can to help you fight it. Psychiatrist Elisabeth Kubler Ross studied terminally ill patients and the stages of grief that occur as they process their death. In her book “On Death and Dying,” she shares that hospice patients need to have a steady stream of hope woven into the end-of-life process. It can be hope for healing or hope to find meaning.

Focus on living, not dying. Grandma, what’s important to you today? Is there something special you want to do this week? If a patient has been referred to a hospice program, the reality is that their physical health is poor, they are declining, and they will probably die. When we avoid and deny this, we miss powerful opportunities to live in the present and urgent moment.

Have the conversation by not having the conversation. Grandma, do you want me to call the pastor? Do you want your sister to come visit you? You are really sick Grandma, what will make you more comfortable right now? Consider the critical needs of your dying loved one. These questions imply urgency and the truth.

Hospice, death, dying are all delicate words that can disrupt, shock, and terrorize. They are words to be offered tenderly, not knowing how the other side will receive these words. Avoidance and denial are options. Maggie Callanan calls this desire to avoid telling the patient that they are on hospice the “compassion conspiracy.” It’s a thing. I appreciate the compassion conspiracy because I appreciate the nuances of family dynamics and the desire to prevent further suffering for your loved one. I also understand managing your own regret; you are the one who has to live with anything you have said after your loved one has died. But, in the end… in the end… in the end, (and this is the end), your loved one needs to make decisions about how to live now. Lets flip the script. How would you live your life if you knew you had three months or less to live? I am sure every decision, every meal, and every phone call would be different, weighted, clarifying, delicious, loving. Let’s give your loved one the opportunity to make decisions based in the truth of what is truly happening; they are dying.

Blessings.

If you need more hospice help, I have a book about end-of-life care.

Writer’s note: Because of privacy laws, the subject of this story is not an actual patient, but a story that includes a combination of many patients and scenarios over the years.

*Much of this content is from my Blog Post: Gentle Honesty in Hospice