Knowing what to expect and when to begin will benefit patient and caregiver
By Lisa Kanarek
In fall 2020, my 94-year-old father was discharged from a hospital with orders for hospice. I didn’t know what to expect. Although over three months, his appetite had diminished along with the strength in his legs, I avoided researching end-of-life care. It turns out I’m not alone.
“People stay away from discussing hospice because they feel like it means they’re giving up and can’t do anything further,” says Diana R. Kerwin, chief of geriatrics at Texas Health Dallas Presbyterian and president of Kerwin Medical Center.
Hospice services were introduced in the United States in 1974. The goal of hospice is to keep someone as comfortable as possible when they’ve decided to stop seeking further medical treatment. With hospice, a team of health-care professionals — including a physician, a nurse, a social worker and a spiritual care provider — work together to minimize patients’ pain and focus on their needs.
Unfortunately, the confusion and misconceptions surrounding hospice can keep a family from seeking the service for a loved one and cause them to suffer needlessly. Knowing what to expect and when to begin hospice can help alleviate the anxiety and uncertainty surrounding end-of-life care, experts say.
“Everyone in this country is entitled to hospice,” says Dawn Gross, attending physician of Palliative Care Service at the University of California San Francisco, and medical director of ANX Hospice.
“To be eligible,” she says, “two physicians must agree that the person has a prognosis of six months or less to live, should the illness run its natural course without intervention. That does not mean the person must die within those six months.”
In 2018, 1.55 million Medicare beneficiaries in the United States used hospice. But according to a study in the Journal of the American Geriatrics Society, each year, nearly 1 million individuals who may be eligible for hospice die without using it.
According to a 2018 study in the Journal of Pain and Symptom Management, “a significant cause of low overall hospice utilization and intractably low median lengths of stay, reflective of late admissions, can be attributed to” difficult and variable prognoses “for most of the leading causes of death among Medicare beneficiaries.”
So, when should a patient or their family talk to their physician about starting hospice care?
“You should think about hospice when your daily quality of life is significantly impaired and when the treatments are not going to change the outcome,” Kerwin says. “That includes a person’s ability to stand up and walk around, eat, feed themselves, get up and go to the bathroom, communicate, and recognize others.”
Hospice falls under the umbrella of palliative care, but some people confuse the two. Gross says hospice focuses on maximizing the patient’s quality of life using all treatments necessary to relieve the symptoms of a terminal illness, including physical (such as pain, nausea and shortness of breath), psychosocial (anxiety, depression and insomnia) and spiritual (existential suffering, which need not be connected with a religious belief). On the other hand, palliative care is designed to support quality of life at the same time a person is receiving cure-focused/disease-modifying treatments.
Gross emphasizes that hospice-care professionals do not move into a person’s home. If someone has worsening symptoms that are out of control, a licensed vocational nurse, a registered nurse or a home health aide could stay for eight-hour shifts until the patient is once again comfortable.
“The hospice benefit covers all care provided by hospice,” she says. “This includes medications that are treating symptoms as well as equipment intended to improve quality of life, such as an adjustable hospital bed, bedside table, an oxygen compressor, and all hospice team member visits.”
During my father’s time in hospice care, nurses stopped by my parents’ home twice a day and were available by phone to answer questions. But I was responsible for administering medication — morphine and a small amount of Ativan to relieve anxiety — and ensuring that my father was comfortable in between visits.
Payment options for hospice care include Medicare and Medicare Advantage, Medicaid (benefits vary by state), Tricare (which provides health benefits for active military personnel and retirees and their dependents), and CHAMPVA (Civilian Health and Medical Program of the Department of Veterans Affairs). Most private insurance obtained through employers or state exchanges also pays for hospice care.
“It’s important to know what your private insurance covers related to hospice costs,” says Amy Tucci, president and chief executive of Hospice Foundation of America. “Some policies will cover all hospice-related expenses, while others may cover much less.”
Tucci says that for those without insurance, hospice providers will often work with families and may charge on a sliding scale according to what the family can afford, or they may use charity funds if available to reduce out-of-pocket expenses.
My father, Joseph Kanarek, couldn’t wait to come home from the hospital. Without the help of hospice services, we would not have been able to provide care at home, where he was surrounded by family.
While 71 percent of patients prefer to be at home receiving hospice services, not everyone has family or friends available to tend to them, according to a 2016 survey. A nursing home, a hospital with a floor dedicated to hospice and palliative care, or a hospice facility are all options for receiving hospice care. Custodial care such as housekeeping or private caregiving, which hospice team members would not provide, is not covered by the hospice benefit.
“Before deciding on a particular agency, shop around,” says BJ Miller, a physician, co-founder of Mettle Health and co-author of “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death.” “Hospice is a service like any business; there are different qualities. So if you live in a place where there are multiple hospice agencies available to you, interview them.”
Hospice is a two-way street; people can come and go as needed. Miller explains that sometimes people sign onto the service, feel better and are discharged from hospice. If patients do not like it and decide to try a new treatment that’s coming online, with the stroke of a pen, they can sign off legally, he says. This process is called revoking hospice care.
“It’s an administrative burden, but it’s no big deal,” he says. “Then your old insurance will kick in.”
Predicting the exact day of death can be challenging, but there are a few indications of when the end is near.
“We’ll see people have very distinct changes in the pattern of breathing,” Gross says. “They take pauses, or what is medically referred to as apnea, in their breathing. They seem to be holding their breath, leaving those at the bedside wondering whether they are going to take another breath.”
As the 2019 study in the Journal of the American Geriatrics Society found, hospice services are underused, especially among those with non-cancer illnesses. As more people learn about the benefits of hospice, they may be less hesitant to request the service.
“Hospice is not something to be afraid of,” Kerwin says. “It’s taking steps to be sure yourself and your loved one is provided comfort and compassionate care as well as support at the end of life’s journey.”
Less than four months after my father passed away, I helped my sister-in-law give her dying father morphine and other medication throughout the night. Instead of feeling anxious, as I did when I was in her role during my father’s final hours, I felt a sense of calm.
This time, I knew what to expect.
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