How to Start Conversations Around Hospice Care

Let’s be frank. The word “hospice” elicits a variety of thoughts and emotions, ranging from sad to relieved, depending on past exposure and experience. Hospice is linked to death and dying, so talking about it naturally shifts our thoughts to our mortality and saying goodbye to our lives here.

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Hospice is an underutilized service because we as a society see death as a taboo, much less helping someone “die comfortably.” Unfortunately, many of us are not equipped to talk about it as a viable option for end-of-life care. But there are resources out there to help start talking about hospice–and to empower you to talk about the benefits of dying comfortably.

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Why Is It So Hard to Talk About Hospice Care?

Death is inevitable. Though every human shares this experience, we all have our own values, beliefs, and goals surrounding life–and death. That includes how we like to receive and process information on such a significant subject.

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A Conversation Project Survey conducted by Kelton Global in 2018 showed that more than half of Americans would be relieved if a loved one initiated a conversation with them about end-of- life care. Additional findings demonstrate that while many people understand the importance of talking about end-of-life, it isn’t easy.

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• 92 percent of people say that talking to their loved ones about end-of-life care is important, but only 32 percent have actually done so. 21 percent of people say they haven’t had the conversation because they are concerned about upsetting their loved ones.
• 95 percent say they are willing or want to talk about their end-of-life wishes. Most people would want hospice at home for the last six months of life if they were terminally ill.
• 80 percent say that if they are seriously ill, they would want to talk with their doctor about their wishes for end-of-life care. Only 18 percent have had this conversation.

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Any major conversation or event requires some form of prep. Consider the three Ps–prepare, offer perspective, and practice–when you want to start a conversation about hospice.

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Prepare

As a first step, you’ll want to educate yourself about hospice. What questions do you have regarding hospice? Are there any books that can help you? What about trusted voices and experts in the field? Guaranteed has a host of resources dedicated to the ins and outs of hospice care and Medicare, for starters. You may want to create a to-do list full of questions and things to research.

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• Write down important talking points for your reference during the conversation.
• Find the right time and place to have a conversation. One-on-one is probably best, and at a time of day when you are both most rested and alert. There is something comforting about sitting at the kitchen table with a cup of coffee or tea for many of us.
• Ask for permission to talk first versus just diving into a deep subject. Here are some “openers” to consider when starting a conversation:

I was thinking about what happened to ________ (a friend or family member who died) and it made me realize that I want to be more prepared than they were.

Even though I’m OK right now, I’m worried that ________ (whatever your main concerns are, such as “I will need more help” or “I will get too sick” if you are the patient, or “you will need more help than I can give” if you are the caregiver) and I want to be prepared.

I need to think about the future. Will you help me?

What do you understand about your current health condition? Or, this is what I understand about my health condition.

When you think about your health care, what is most important to you? (Most people bring up quality of life and do not want to be a burden on caregivers).

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Perspective

The saying “time flies” is so common as you age–seconds feel like years, but months feel like they pass by in a snap. The last months of life go by quickly as well, but they are filled with a sense of urgency not felt in prior seasons.

Hospice care is designed for people who have six months or less to live, but two out of four hospice recipients only have it for less than three weeks. Three weeks or six months is but a small fraction of a lifetime. To echo Dr. Atul Gawande’s sentiments in his book “Being Mortal,”  “In stories, endings matter.”

• Highlight the positives that you envision from choosing hospice care. Death is a natural part of life. We all know this, and most of us want to be able to talk about it. If you start a conversation about hospice, you begin to shine light on the type of care that can make a positive difference in how your or your loved one’s story ends.
• Remind yourself that hospice is not doom and gloom. It’s about living well and adding quality to the days you have left. Hospice care focuses on what matters most to patients and families and supports personal choice and self-determination.
• Communicate your wishes with those who need to know. The only way for other people to know you and what matters to you is to talk about it. It’s your right to talk, and it’s a gift to you and your loved ones to become known. Caregivers report relief in knowing they have honored their loved ones’ choices about end-of-life care.

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Practice

• Practice the first conversation with a friend to get your head around the words.
• Talk about values and goals first, then about hospice as an option. You may not come to a decision about moving forward in the first conversation. It can be overwhelming for you and the other person to talk about everything regarding hospice. That’s OK, you can have more open talks after you have the first one under your belt!
• Be curious. Ask questions. Take it one step at a time. In fact, consider pausing and return to the conversation at a later date to give them time to mull over everything said.

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Ending The Taboo on Death Starts With Talking About Hospice

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We can have a say in our care as patients, and in how we receive help as caregivers. Hospice offers medical, social, emotional, and spiritual support for patients and families as they navigate the final months of life.

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It’s important to start having open conversations with your circle of family, friends, and healthcare providers about hospice if you are living with a life-limiting or terminal illness. Think about having a good talk now to focus on good days ahead.

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Sources

1. Gawande, Atul. “Being Mortal, Medicine and What Matters in the End.” Metropolitan Henry Holt and New York LLC, 2014. Print.
2. “What Matters to Me Workbook – A Workbook for People with Serious Illness.” The Conversation Project, 2021, www.theconversationproject.org/wp-content/uploads/2020/12/WhatMattersToMeWorkbook.pdf.
3. ‍“History of Hospice.” NHPCO, National Hospice and Palliative Care Organization, 13 July 2020, www.nhpco.org/hospice-care-overview/history-of-hospice/.
4. “The Conversation Starter Guide.” The Conversation Project, 2021, www.theconversationproject.org/get-started#Your-Conversation-Starter-Guide.