Hospice or No Hospice:
Which Do You Choose?

Originally published in Chicago Hospital News, April 2005

This is the story of a good death, a bad death, and a few that fell in between.  This is a story about how hospice makes a difference in life—and in death.

In 1979 Margi Carlson’s father is diagnosed with cancer.  He chooses no aggressive treatment and her mother cares for him at home until his death, absorbing all the financial costs. 

“Was his pain managed as well as it could have been?” Margi wonders now. “I don’t know.  There was no hospice in Chicago, and our society didn’t understand end-of-life care back then.”

Fast forward almost 20 years.  “Times have changed,” Margi says as a preface to this part of her story.  “We understand hospice.”

In Florida, her mother-in-law is diagnosed with cancer and sent to a cancer research hospital, where she receives aggressive treatment.  The family believes she is getting better.  Calling long-distance, Margi happens to mention to the nurse that she’ll be down to visit the following Tuesday. 

“Tuesday,” responds the nurse, “is a long time from now for a woman this sick.”

Stunned, Margi and her husband fly to Florida the same day.  They arrive at 7:30 p.m. and Margi, who has been a nurse for 25 years, sees instantly that her mother-in-law is actively dying.  “No one knew,” she says of her family.  “I remember my father-in-law holding Mom’s hand and pleading with the nurse, ‘Please, make my wife well!’

“What were her doctors thinking?” she asks, then answers her own question.  “They were cancer researchers; they didn’t want to lose a patient.”

So the family goes to dinner, and Margi breaks the news.  “Liz is not going to get well,” she says frankly.  “The best we can do is to go back and spend time with her.”

“Your whole family is here”

When they return to the hospital Liz is unresponsive, but Margi, understanding the abilities of a patient in transition, speaks to her anyway.  “Liz,” she says, “your boys are here. Your whole family is here.”  And tears slide down Liz’s cheeks.

“Memories like that live for generations,” Margi says today.  “My husband still talks about that.  If I hadn’t known to do that, no one would have.”

Ninety minutes later their mother died.  “They had no preparation,” Margi laments.  “They were left with could-I/should-I-have-done-something-different?, instead of a hospice’s assurance that you’ve done all you can.  And then they just walk out of the hospital, with no system in place to support the survivors.

“Six months later my mother is diagnosed with lung cancer,” Margi continues without taking a breath.  “She’s a little dynamo who had cared for her own mother-in-law and her husband, and she signs on to hospice almost immediately.  With hospice she never needed hospitalization, suffered little or no pain, had all her meds paid for and received psychosocial support.

“But in the last week she has seizures, and then she can’t swallow.  The hospice has no continuous care option, so I do the care.  I remember a nurse coming to the house with 10 syringes of Ativan, and saying, ‘Here, you’re a nurse.  Give her one injection every two hours.’  Well, she’s skeletal at that point, there’s no place to inject her.  That was very hard for me.  But after she passed away, the bereavement support was excellent.”

“Hospice is for old, sick people”

Margi’s father-in-law had been receiving treatment for lymphoma since 1998 and was in remission.  But two years ago his oncologist recommended hospice.  The patient objected strenuously (“Hospice is for old, sick people,” he told Margi.  “Dad, you’re 84 and you’ve had cancer for five years.  You qualify!” she responded.).

It turns out hospice is just what he needs.  Home health aides help him with his bath and tidy his house, and it’s all covered by Medicare.  “I should have done this a long time ago,” he admits to his daughter-in-law.  But eventually fulltime care is needed, and Margi and her husband invite him to Chicago to live with them instead of in an inpatient hospice unit in Florida.  Margi contacts VITAS Innovative Hospice Care® in Chicago to help with the transition. 

“VITAS was wonderful,” she recalls.  “The director of admissions was there within minutes of his arrival from the airport.  We had medical supplies delivered immediately.  They put him on continuous care for several days, and then we hired private care.”

After a thorough interview with patient and family, VITAS suggests to Margi that maybe this time she can just be the daughter and let the nurses do the nursing.  “That was welcome to me,” she says. 

One of the most important things the nurses do is help everyone understand that the patient is going to die. 

“They helped me be honest with him” Margi says, “and you know what?  It opened the door to some great conversations.  First it was ‘You mean I’m not going to get strong enough to go upstairs?’  Then it was conversations about God and heaven.  Finally, it was acceptance.  He worried about whether Liz would recognize him when they met again, because he’d lost so much weight.  There were some wonderful conversations between a father and son—and I was allowed just to be a daughter.

“One day a deacon from the church comes and we hold a little service: my father-in-law, the VITAS nurse, the private duty nurse, my husband and me.  We read the 23rd Psalm and the Lord’s Prayer—and he expells his last breath. There was a sense of peace and closure.  It had been the right environment with the right nurses.  We were supported emotionally so we could support him.  There is no doubt we did everything we could—everything he wanted.”

This is a perfect place to end this story, but it’s not the end.  The VITAS relationships Margi developed during and after his father-in-law’s illness endured, and six months later she got a recruitment call from VITAS.  Today she is general manager of the Chicagoland South program. 

“I’ve been nursing for 30 years, and I feel so fulfilled here,” she says.  “VITAS does truly marvelous work.  From a nursing perspective, it’s about comfort, dignity and caring—that resonates with my education.  VITAS is what I went into nursing for.  And my work is enhanced because of my very close experience with hospice; many of our staff members had a personal hospice experience before coming here. 

“Hospice or no hospice?” she considers the question, palms up as though weighing the options.  “Here’s the choice: The patient has a limited life expectancy and no VITAS, or the same life expectancy with no pain, no anxiety, but with psychosocial support, music therapy, good meds.  The patient and the family have what they need, and the family continues beyond the death to have what it needs.  

“Which do you choose?”