Gentle Honesty in Hospice —Talking to Your Loved One about Dying

When I admit patients to hospice, it’s common for a family member to request that the team not use the “hospice” word. They’ll say something like, “We don't want grandma to think she is dying, and we don't want her to think we have given up hope.”

Maggie Callanan, RN, author of “Final Gifts,” calls this desire to avoid telling the patient that they are on hospice the “compassion conspiracy.” I appreciate the compassion conspiracy because I appreciate the nuances of family dynamics and the desire to prevent further suffering for your loved one. When my mom was dying from lung cancer, all of my dad’s energy went into hope and survival mode — keeping her alive, keeping her happy, feeding her, and never uttering the word hospice. 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. 

End-of-life conversations can be awkward and clunky, especially if everyone in the room has been avoiding the topic of death. I know I have insulted patients or family members at times. People have said to me, “How dare you say grandpa is dying?” And I have observed the around-the-table glances that suggest I am obviously not on their side of the compassion conspiracy. But that’s OK,  my nursing practice is mired in ethical dilemmas and uncomfortable topics anyway. 

Veracity is one of our nursing ethical principles. It means telling your patients the truth even though it may cause them distress. When a patient has accurate information about their health, they can make informed decisions about their care. If my patient knows they are dying, they have weeks or months or days left, that will inform how they live in that very moment. If I knew I was dying in one month, I would take my family to Hawaii — tomorrow.

Honesty is the foundation of a trusting relationship. When a hospice patient has accurate information about their health, they can make informed decisions about their care.

Throughout the years, I have learned to tell the truth more gracefully — this usually involves establishing trust with the patient by being honest over time and gently offering accurate information. Here are two stories to offer some perspective on when to have the “you’re dying” conversation. 

When I first met my patient “Dan”, I found out he was a vet and had lived with an amputated leg since Vietnam. He was described as a fighter, and the last week was fraught with agitation and combativeness. His daughter made the decision for hospice because of Dan’s dementia. 

Although her father could not remember the name of his long-standing cardiologist, he did remember that he thought she was cute and that he loved to flirt with her at his weekly appointments. I stood at his hospice bedside and he had just weeks left to live. He inquired about his next cardiologist appointment, and I told Dan we were taking it day by day. He was too sick to make the trip to see his heart doctor today but perhaps later this week he could. Telling the truth that he would likely never see his heart doctor again, in this moment, was not urgent. Knowing his recent history of dementia and agitation, I wanted more than 30 seconds to establish a relationship with him. I was still honest but not overwhelming. 

Another patient, “Jeanine” lived in our hospice home for about a month and on this day she could barely talk, she had not eaten food for a week and weakness prevented her from lifting her head. Her three adult grandchildren visited, and as soon as they left to eat lunch, her breathing pattern shifted suggesting she would likely die in a matter of minutes. I bent down and asked her if I could call her grandchildren back into the room. She shook her head no. Then I said, “Jeanine, it looks like you are dying. I think they would want to be here with you.” Then she nodded her head yes and one of the faster nurses ran off to get the kids. She died with her granddaughter holding her hand and whispering “I love you grandma.” Jeanine and I had a relationship, she trusted me, and this was urgent.

If a patient has decision-making capacity and is of sound mind, it’s our ethical responsibility to tell them the truth.

If a patient has decision-making capacity and is of sound mind, it’s our ethical responsibility to tell them the truth. Here are some ways to be compassionately candid.

Ask yourself if you need to see the truth more clearly.

Sometimes if our own perspective is cloudy or if we are afraid of hurting our loved one, it can complicate this truth-telling process. When I talk to families, I will use words like “death, days left, weeks left, dying” and families still do not see that their loved one is declining and dying. I love this phrase “denial is a shock absorber for the soul” by Melodie Beatty suggesting that denial is a protective mechanism and it is ok to be in denial.

And sometimes, it’s difficult to see the truth when you are sitting right on top of it. Think about the last year of your loved one’s life. How are they really doing? How is their energy, their mobility, their appetite, their work life, and their social life? Has it declined in the last year, month, week? You can ask someone less involved in the situation to offer their perspective. Although the truth may be unsettling, you can be more helpful to your loved one if you are able to see the situation as clearly as possible. 

Develop Trust

I find that most patients trust me if they know I am being honest with them. Sometimes it takes awhile. Sit with them when things get uncomfortable. Return when you say you are going to return. Honesty and trust are inextricably even together. I dont think you can have one without the other.

Try a good cop/ bad cop strategy. 

If you are concerned your loved one will think you have lost hope, consider collaboration 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 the opportunity to express their needs in this moment. 

Ask questions. 

Grandma, how are you 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. Callanan asserts that the patient usually knows they are dying, and it takes an inordinate amount of energy to keep up the lie rather than sit in the uncomfortable truth. 

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.

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? When a patient is on hospice, the reality is that their physical health is poor, they are declining, and they will probably die. If 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.

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. Hospice is there to help soften the dying process: to alleviate the patient's physical pain and to support the patient and the family with the emotional discomfort dying inevitably brings. If you can gain some clarity, collaborate with your hospice team, and honor your loved one with gentle honesty over time, it can allow them to accurately make choices about what they want in their final days or moments so they can live until they die in physical, emotional, and spiritual peace.

Blessings.

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.

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