In September 2022, I accompanied my 82-year-old father to an appointment with his oncologist. My father had recently had a PET scan and the results were not good. After seven years on a successful regimen of immunotherapy drugs, her cancer had spread. The doctor told us it might be time to consider hospital care.
The American Cancer Society states on its website, “Hospice care is a special type of care that focuses on the quality of life of people with an advanced, life-limiting illness and their caregivers.”
The focus of care shifts from treating the disease to treating the pain, keeping the person comfortable, clean and safe. “Hospice care provides compassionate care to people in the final stages of terminal illness so they can live as fully and comfortably as possible,” explains the ACS.
Although I had heard the term “hospice” before, I didn’t fully understand what it meant until my father entered this type of care. Like many, I had conflated hospice with surrender, but that is neither fair nor true.
Death is part of life, and hospice recognizes that. Writer Catherine Newman from Massachusetts spent several months caring for a friend who entered a hospice at the end of her life. Newman says, “I learned that hospice is the most humane place, both heartbreaking and beautiful at the same time.”
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Understanding hospice
The idea of hospice care began in England in the 1950s. It came to the United States in 1974 when Florence Wald, two pediatricians and a priest founded Connecticut Hospice in Branford, Connecticut. In 1982, a federal bill made hospice care a covered benefit under Medicare.
Hospice care is for people who are expected to live six months or less and are no longer receiving life-sustaining treatments. It does not mean that the patient will live six more months (it can be substantially less, depending on when hospice care starts and how the disease progresses.) And in some cases, the person can live longer than six months and the doctor may have to ask an extension of attention. Hospital care is not assisted suicide; no drugs are administered to cause death.
The focus of hospice care
Hospice care shifts the focus from disease treatment to comfort care and quality of life. Care includes pain management and other services, such as emotional and spiritual support. Hospice programs often provide support for loved ones, including training on how to care for the person and grief counseling.
Hospice care can be provided in a person’s home or in a hospice facility. Determining which is best is an individual decision based on several factors.
The advantage of home hospice is that it allows the person to remain in their family environment. Equipment such as a hospital bed, oxygen tank and bath chairs can be brought home to ensure the person is comfortable and safe. A “comfort kit” is also provided, which includes medication for problems such as pain, nausea and anxiety.
Although home hospice includes visits from nurses and aides, it is not full-time, 24-hour care. Much of the care (such as help with bathing and administering medications) will fall to caregivers, either loved ones or outside helpers (not covered by hospice and paid out of pocket).
For some people, hospice hospitalization is a better alternative. Newman’s friend was treated at a hospice facility. Newman explains: “My friend had small children, so it wasn’t feasible for her to be looked after at home. Also, her care needs were so complex that hospice was the only option.”
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letting go
Before the doctor’s appointment, my father hadn’t felt like himself in weeks. I was not hungry and was losing weight. I also slept a lot more during the day. As her condition declined, she had confided in me that she didn’t think she could go on much longer. But it was not in his nature to stop fighting, so he continued to go to his treatments.
Now the doctor was giving him permission to stop. Instead of being upset when he heard the news, my father’s first emotion was overwhelming relief.
My father’s feelings are not unusual. “Hospitals don’t want a person to die. It feels like a failure,” explains Newman. “The person who is sick feels like they’ve let people down when they’re not healed. Although it is terrible and devastating to know that you are going to die, it can also be somewhat of a relief, especially for someone who has been struggling and suffering for so long.”
Simple pleasures
In hospice, there is a lack of urgency. The focus becomes being here now, being alive in the present. “No one is waking you up to take your temperature or suggesting that you eat healthy, balanced meals,” says Newman.
No longer concerned with prolonging life, hospice patients can enjoy simple pleasures. One afternoon, my father was smoking a cigarette outside the house when his visiting nurse arrived. Instead of chastising him or rushing him, he kindly said, “Take your time; I’ll wait.” She grabbed a chair and sat next to him.
Newman’s experience caring for her friend in hospice was so powerful that it inspired her fictional novel We All Want Impossible Things. She also became a hospice volunteer after her friend’s death.
Newman says, “People crave comfort food. I must have made thousands of grilled cheese sandwiches. They smoke weed, they drink a little alcohol, they listen to music, they find joy where they can.”
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End of life conversations
As well as checking vitals and adjusting medicines, hospice workers support people in ‘transition’. The nurses and aides who visited my father were kind and empathetic. They created a safe environment for him to talk openly about his feelings.
Hospice also gives loved ones the opportunity to have difficult conversations. It was no secret to Dad or us that he was dying. So we took the opportunity to talk about that fact and talk about things like his funeral.
Newman says, “It can be scary to talk about the hard things. You worry that you’ll do it wrong or say the wrong thing. But the person knows they’re dying; without those conversations, they’re alone with their thoughts. It’s better to be brave and take a chance. Hospice allows you the time and space to talk about these difficult things.”
Those difficult conversations with my father made those early days of grieving much easier. There were many decisions, but we were calm, sure we knew what he wanted.
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saying goodbye
Being in hospice also gives people time to talk about other things. Newman says, “It’s ironic; the person is dying and yet there seems to be all the time in the world. There is a lot of time sitting in hospice. Gossip, small talk and laugh too. “
People often feel angry because the last conversation with a loved one was more meaningful, or they may feel guilty if they are not physically there when the person dies. “They’re looking for that tearful, climactic moment like they’ve seen in the movies, but real death isn’t like that,” notes Newman. “Not every conversation will be deep.”
Often a person will have visitors almost all day and die when no one is in the room. Some believe that this is what the person wanted: they were waiting for their loved one to go away. Newman says, “It is the accumulated life that matters, not what happens in these final days or moments.”
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At first, my siblings were against my father’s hospice care. They felt he was admitting defeat. But the more we talked with our father and learned about hospice, we all realized it was the right choice. We supported our father throughout his life. Hospice allowed us to give him the same support as he faced the end of his life.
Randi Mazzella is a freelance writer specializing in a wide range of topics, from parenting to pop culture to life after 50. She is the mother of three grown children and lives in New Jersey with her husband. Read more of his work at randimazzella.com.
This article is reprinted with permission from NextAvenue.org©2023 Twin Cities Public Television, Inc. All rights reserved.
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