This is the fourth article in a five-part series that explores the experiences of patients and families who have used hospice services.

Wendy’s opening comments are typical of those of people who have had family members in hospice: “I didn’t know anything, really, about hospice. Having my mother pass there was just great -- it was just such a gift.”

She explained, “She had Stage IV lung cancer. She went through chemo. She was sick for a long time. My dad was healthy and took care of her and she wanted to die at home.”

A year after she was first diagnosed, a doctor specializing in care that focuses on comfort and quality of life -- palliative care -- brought up the idea of hospice. Wendy reports, “We weren’t ready to hear it. She wasn’t ready to hear it. And what was lovely about it is that he said basically, ‘I understand that you’re not there now, but just know that I’m here. Whenever you want to talk or whatever you want to plan, this is what I’m here for.’ He was a young man, too. He was remarkable with my father. He was remarkable with me. How lovely that there is such a field and that there are good people who enter that field.”

When they eventually agreed to hospice, the first approach didn’t work. “They tried having someone come into the house to help. [My parents] were uncomfortable with that. They didn’t know to treat that person as a guest or to treat that person as a housekeeper or to treat that person as a nurse. They couldn’t figure it out. That added to their discomfort.”

Wendy’s mother kept landing in the emergency room. “The palliative care doctor was the one who pulled us aside two weeks before my mother died and he said, ‘You know, this is not what hospitals are for. And this is not what emergency rooms are for. Your mother is dying and she should not die in the emergency room. That’s not what you want for her.’”

The family ended up transferring her to a hospice facility. Wendy described the experience:  “What surprised me about it was that it was a house. I guess I thought it was going to be an institution or something. She had a room overlooking a garden -- it was just so lovely. And they took care of my dad. That’s what I loved. That was really meaningful to me. They cooked three meals a day for my dad. And they left him alone or they talked to him depending on what he felt like. And he could stay or he could go. He basically just moved in with her. He could sleep in a comfortable chair in her room -- like a Barcalounger. Or they had two guest rooms, so he could spend the night there. And her family could come in, and spend as much time or as little time as they wanted to with her.”

She described the home further: “My kids did not go visit while she was dying, and that was at her request. But there was room for kids there. They had the whole basement. They had an ice cream freezer or popsicles or whatever. And they had pool tables and a game room. So kids could be down in the basement and be loud and obnoxious and you wouldn’t know it. So the house could be alive with children but still not disruptive.”

She continued, “My mother was 62 or 64; she was way too young to die. But she died well. She didn’t die with five people putting tubes down her throat. Her body just slowly shut down and she died in her own way. When my mother moved to hospice, they took her off the IV. That was really hard to me.” They explained that the reason to remove it was that it prolongs the dying process and makes it more painful. Wendy noted, “They said it, and I didn’t believe them, and I looked it up, and they were right.”

Wendy said, “I feel like she had a good week there. Everything was so extraordinarily pleasing and easy and comfortable and lovely. The people who work there are angels. They’re wonderful. She was coming in and out [of consciousness], but she was comfortable, just really good. I said good-bye to her and she said good-bye.”

She reflected, “I guess I didn’t realize, in the same way that birthing is a process that can be described, death has a process. It is a process that should be honored like the process of being born.”

She contrasts her mother’s experience dying with her father-in-law’s. Her father-in-law lives in Asia. “My husband’s father had had a massive stroke, the sort of stroke you really don’t want to recover from. He was on a feeding tube. My husband knew his father’s wishes,” which were that he did not want medical treatment in such circumstances. But “when he asked to move his father to hospice, they refused. They said that he was on the feeding tube. He was stable. They could keep him alive and they would be keeping him alive. There was no process for moving an 85-year-old man with Alzheimer’s who was on a feeding tube and who would never regain function. There was no process for moving him. It was really awful. You have to have an advance medical directive there, next-of-kin doesn’t have the right to decline life support.”

Wendy said, “So it gave me a real appreciation -- I do realize the sort of gift my mother had, that she was able to die gracefully. Giving birth is a messy thing, but it is a glorious beautiful thing and I think dying is the same thing, it’s a glorious beautiful thing. It may not be pretty or graceful but it deserves respect.”

She concluded, “I have heard that no one ever regrets approaching hospice; their only regret is not approaching it sooner. We’re so focused on fighting, and when you’re fighting something that means that you’re losing or giving up when you die. I think that there’s a value judgment in those statements that is unfair. Unfair to the person who is dying, unfair to the family, just unfair to life and to the human experience, I guess, because we will all die. Does that mean that we all lose?. . . There should be a way where we’re able to transition to dying without that being losing.”

-- Next -- 056. What to Look for When Choosing Hospice Care