Hospice Pioneer, Barbara Karnes Shares Lessons from 'School of Grief'

Barbara Karnes, RN, is considered by many to be the “godmother” of hospice, having written the popular and accessible hospice education book for families, “Gone From My Sight,” back in 1985. The little blue book has sold more than 35 million copies worldwide. 

But Karnes experienced her own loss in September of 2023 with the death of her husband of 63 years, Jack Karnes, who was 89. He had been diagnosed with lung cancer in May and was gone by September. She talked with us from her home in Vancouver, Washington, to share her experience with the grieving process.

Karnes shared that she’s also been enjoying caring for her 10-year-old cat, Baxter, and that she can’t imagine where she’d be today without her supportive family and friends.

‘Life is School’

For Barbara Karnes, the veteran hospice author, speaker, and educator, life is school. That is, she believes everything we encounter is a learning experience. And the woman whose book has helped millions of people understand death is still learning herself.

‘I Knew Grief Until I Started Grieving’

“Intellectually, I thought and taught grief. I knew grief — until I started grieving. Grieving for a husband was different than grieving for parents. I didn’t know that either until I started walking in those shoes. The key that I think I learned is that there’s a component beyond the intellectual and beyond the emotional,” she said. 

Karnes has never before lived on her own. She says after the death of her husband Jack, she’s learning to be a “me” instead of a “we.”

“I went from parents to nursing school and a really tough House Mother to being married two weeks after I got out of school. I had to learn how to think about myself and ‘what do I want?’ not ‘what do we want?’ I didn’t know how much money was in the bank, I didn’t know how to pay the bills, because for more than 60 years, he did it, and that’s a long time.”

‘I Didn’t Want to See’

And while Karnes is perhaps the best-known author writing about hospice and death in the end-of-life industry, she found there were things even she “didn’t want to see” as her husband declined. She explained, “I knew all the right things, but emotionally, I didn’t want to see the decline. I didn’t want to see what I knew.”

Karnes says this experience gave her more insight into what family caregivers experience, “When I thought he had months, and I’ve got all the knowledge, he really in hindsight had only weeks. And when I thought he had weeks, he had only days. And at just hours, I kicked in, and I knew what was happening. It gave me a wider view of end of life from just the intellectual ‘this is what’s going to happen.’ When it is personal, you can’t necessarily be objective. When it’s personal, all of our baggage, all of our stuff, clouds the objectivity. That’s normal, it happens,” she explained.

Karnes says the experience of her husband’s death helped her better understand how loved ones may not be willing or able to see the decline of their family member.

 “When I called hospice in, I thought he had months. Hospice comes in and gets started and the primary care nurse didn’t say so, but I can look back and realize that she knew he had a week or so. And she knew when it was days before I could see it, because I didn’t want to see it. And when you don’t want to see something, you don’t. So, she was the support and guide, which is what hospice does for everyone. That’s the job, to guide and educate and support families and I was on the receiving end. I saw how family caregivers don’t want to see what’s really in front of them,” Karnes said.

‘I Wanted Him to Make it to Christmas’

Her latest book deals with food and the issue was one she experienced first-hand with Jack’s decline. She said, “I had a big issue with food, and I know better. And yet, if my husband didn’t eat, (I felt) he was going to die. And so, I did what every caregiver does, which is try to push food, and I knew better, but I didn’t want to see it. But I didn’t want to see, I wanted him to make it to Christmas and in my head, that was the goal, and in my mind, (I thought), ‘If he’d just eat, he’d make it to Christmas,’ which is what every caregiver thinks.” She hopes her book, “It's Okay Not To Eat! Food At End of Life,” will help others cope with this sometimes challenging transition from eating to not eating as they care for their special person.

You can learn more about Karnes and her work on her website.

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