NEW YORK (Reuters Health) - Worn out and needing someone to know she was desperate, Jen Bosworth called her mother’s physician.
The Chicago-area drug counselor had spent two years caring for 67-year-old breast cancer patient Ines at the time in 2011, and her mother’s wellbeing was declining as quickly as the cancer seemed to explode.
“She was having problems getting around, and treatments weren’t working,” recalls Bosworth, then a 35-year-old newlywed. “She was spending more time being schlepped around than enjoying life.”
Bosworth’s doctor welcomed the call, offering a new option: hospice care. “I was totally afraid of that word,” remembers Bosworth, who wrote a one-woman show about her mother’s illness, Why Not Me: Love, Cancer and Jack White. “I thought it meant she would die the next day.”
The doctor explained that hospice aimed to improve quality of life and reevaluate how her mother would best spend her time. Hospice provides medical care, pain management and emotional and spiritual support to those facing the end of life and their families.
Hospice teams also help with psychosocial aspects of death and make inpatient care available when symptoms become too difficult to treat or if caregivers need a break.
Hospice care is usually covered by insurance, including Medicare and Medicaid.
In the case of Bosworth’s mom, a hospice nurse arrived within hours and enrolled her from home. She was one of 1.4 million opting for hospice that year.
Hospices provide comfort care, rather than curative care, for people with any type of terminal illness or progressive disease that is no longer responding to treatment. But knowing when the choice is right is delicate, and often daunting.
For Dr. Charles von Gunten, Provost at The Institute for Palliative Medicine at San Diego Hospice, an honest dialogue about the patient’s chances of recovery must precede any hospice talk. A decision rests on answers to two questions, the first an inquiry into a patient’s understanding of his or her illness.
“If they know it’s getting worse and doctors don’t have anything to make it better, it could be time,” says von Gunten, who then turns to an exploration of hopes.
“Hospice is for patients who want to be comfortable, at home, as good a life as possible and a peaceful death,” he explains.
For Bosworth and her mother, it meant no more trips to and from chemotherapy. No more appointments with oncologists out of answers. “The worry didn’t consume every minute of the day,” she remembers.
As traditional disease therapy options are exhausted, choosing hospice often lifts the pressure to look for alternative treatments or clinical trials with little or no proven benefit.
“In American culture, we value the futile effort,” von Gunten says. “We glamorize ‘last stands at the Alamo.’”
He encourages families to consider the likelihood that another treatment will work. “Is it the equivalent of a Hail Mary pass? It’s not a good use of time or money to do something futile for symbolic value.”
Bosworth’s mother died two months later, peacefully in her living room. Before she died, Bosworth recalls, the two of them were able to laugh and cry together, sharing priceless private moments.
“Hospice is just as important to the family as it is to the patient,” says Don Schumacher, President of the National Hospice and Palliative Care Organization. “It’s putting life into your days rather than adding days onto your life.”
But doctors are often waiting for patients to float the idea first - and they usually don’t. “Patients overwhelmingly want to know their prognosis,” says von Gunten. “But they wait for the doctor to bring it up.”
His advice: don’t wait. Bosworth’s physician was waiting for her, as are many treating the terminally ill.
Bosworth says other caregivers shouldn’t be afraid to start the discussion.
“Anyone with a serious illness thinks about death, worries about those last months, wants to be comfortable and doesn’t want to be a burden,” von Gunten says. “But because they don’t feel like they can talk about it, they ruminate, and it becomes the source of distress.”
Several hospices offer guidelines on their websites to help people know when it might be time to talk to their doctor about hospice care, including Hospice & Community Care based in Lancaster, Pennsylvania, here: bit.ly/1lIO8Ac; Hospice of Northwest Ohio, here: bit.ly/1lJAqIK and the Canadian Virtual Hospice, here: bit.ly/1ptp4OY.