Most myths contain a modicum of truth. What causes misinformation to endure is an unwillingness or inability to look more closely to ferret out the facts. This is especially true in understanding hospice care, which is closely allied with sickness, death, and dying—fraught topics that many avoid rather than confront head-on.
It’s estimated that nearly half of all Americans die now in hospice care each year, with that number increasing yearly. Still, many myths proliferate about what it is and how it works.
Here is a take on the top 10 myths surrounding hospice—with a nodding to the truths and a debunking of the falsehoods.
MYTH 1: Hospice is a place people go to die.
FACT: In truth, some people do receive hospice care at a “place”—one of the growing number of freestanding facilities dedicated to providing inpatient hospice care. But the great majority of hospice care is received in the place the patient calls “home”—a private residence, residential facility, or nursing home. Some patients also receive hospice care while hospitalized.
But hospice is not a place. It’s the word used to describe a philosophy of particular type of care—that which focuses on keeping a patient as comfortable, free of pain and lucid as possible rather than attempting to cure an underlying disease.
MYTH 2: Hospice care is offered only for cancer patients.
FACT: This myth probably endures because of the storied history of hospice care. Though the concept of hospice as treatment for the incurably ill probably dates back to the 11th century, the modern hospice movement is credited to Cicely Saunders, an English Anglican doctor and writer. The idea was launched after Saunders fell in love with a terminal cancer patient, David Tasma. As they grew close, it became clear to both that a spiritual component to healthcare was essential for many patients. Tasman left Saunders a sum of money at his death, declaring he would be “a window in her home.” In 1967, she opened St. Christopher’s Hospice in London for cancer patients, sparking the modern hospice movement. Tasma’s “window” is embodied as a plain sheet of glass in the hospice’s entrance.
Saunders’ concept of holistic care was maligned by much of the medical establishment, but eventually served as the model for the first hospice care providers in America, which began in the early 1970s.
Today, just over a third of U.S. hospice patients have a diagnosis of cancer. The others have a range of chronic diseases: dementia, heart and lung disease, and stroke or coma are most prevalent.
MYTH 3: Hospice care is expensive.
FACT: By most people’s lights, all medical care is expensive.
Still, hospice care is less expensive than conventional end of life care for a number of reasons. It usually involves fewer medical tests and procedures and very little technical equipment. Care received at home is much less costly than hospital care—and there is no charge for the services that family members, friends, and volunteers help provide.
In addition, hospice patients pay for only the services they want and require—a freedom of choice often denied other patients. Medicare, Medicaid or Medi-Cal, and private insurance generally also cover much of the cost of hospice care. And finally, many hospice providers offer free or provide sliding-scale charges for those who are challenged by paying.
MYTH 4: Hospice care means giving up hope.
FACT: Signing on for hospice care often does require a shift in thinking—from attempting to cure an incurable condition to concentrating on keeping a person as comfortable and cogent as possible. For many hospice patients, this shift greatly improves the quality of life, eliminating pointless tests and painful procedures and allowing time to spend with friends and family.
MYTH 5: Choosing hospice means giving up all other care.
FACT: Hospice care does not contemplate most procedures and treatments deemed “life-saving,” such as surgery and chemotherapy.
However, one prime goal of hospice is to provide “patient-centered care” aimed at holistically improving the quality of remaining life, with pain management and other regimens tailored to the individual. To that end, some hospice services may provide treatments traditionally deemed to be curative, including radiation therapy or antibiotics, if they are provided to improve the quality of life.
In addition, hospice patients can opt at any time to stop care there or pursue conventional medical treatment; they can resume hospice care by securing a doctor’s diagnosis that their conditions may cause death within six months.
MYTH 6: Hospice is only for the elderly.
FACT: It’s true that the greatest number of hospice patients are older adults—not surprising as the average life span has increased, along with the number of people who require sustained care for chronic diseases. A recent demographic study by the National Hospice and Palliative Care Organization [LINK TO http://www.nhpco.org] found that about 2/3 of all hospice patients in the U.S. are 75 and older.
However, a growing percentage of hospice patients are younger—and most hospice programs also accept children. Several hundred providers now offer children-specific hospice, palliative, or home care services.
MYTH 7: There are no regulations or agencies to oversee the quality of care hospice provides.
FACT: Even in systems with the most iron-clad regulations and oversight, there are always scofflaws. And since hospice care is relatively new and still considered “alternative medicine” by much of the hidebound medical profession, the laws controlling it are still evolving and sometimes murkily written and difficult to interpret.
However, hospice providers must comply with federal regulations to be approved for reimbursement under Medicare, which currently accounts for about 93% of the existing hospice agencies. Hospices must also undergo periodic inspections to ensure they meet regulatory standards to maintain their licenses to operate and the certification that permits Medicare reimbursement.
In addition, most states have laws governing hospice operations. The Hospice Patients Alliance maintains a searchable listing of websites for each state’s hospice administrative code and regulations.
MYTH 8: Patients must give up their regular doctors when entering hospice care.
FACT: As most people will attest, there is always room for confusion and misunderstandings when dealing with medical matters—from bollixing billing to doctors who won’t return beseeching calls. This chaos may be exacerbated by the anxiousness that often accompanies a serious illness. And not all doctors will support a patient’s decision to elect hospice care.
However, every hospice organization’s rules state that a patient’s primary care physician and some other specialists are considered essential members of the “care team.” It may take some intervention by the patients or his or her caregivers to make this cooperation work well, but is it often helpful to quote back the rules requiring it—and the desire to make it so in the interest of quality care.
MYTH 9: Hospice care shortens life.
FACT: Without splitting hairs, it may depend on how you define “life.” Those eager to try aggressive new treatments or experimental drugs that may slow a disease, or believe that feeding tubes and respirators should be put in place whenever a doctor decrees they are needed, should get the medical care they feel fits them best.
Proponents of hospice care tend to support the view that a quality life should be lived as pain-free and as peacefully as possible. Most shun medical interventions they view as “intrusive” and prize the peace of a home or homelike setting over the sterility of hospitals and clinics.
And a surprising fact: An often-repeated study of patients with terminal cancer found that those who received less “aggressive” care aimed at comfort and pain relief lived an average of three months longer than those receiving traditional medical care at the end of life.
MYTH 10: Hospice care is stressful for family members and friends.
FACT: In our death-avoiding society, many people still shy away from the realities and inevitabilities of illness and death. And since the majority of hospice care is provided in the patient’s “place of residence”—a home, residential facility, or long-term care complex, those living nearby or helping provide the care often get a more intimate view of sickness and end of life.
For many people—both patients and caregivers—this also provides an unexpected benefit. Those confronting death together are more likely to do so honestly—to have last meaningful talks, to make efforts to get their final affairs in order for survivors,
In addition, hospice providers can provide valuable training in practical aspects of caregiving such as administering medications, changing dressings, and operating medical equipment. Those who want it can also get spiritual or emotional counseling and support. And importantly, most hospice providers offer respite services, providing breaks for the regular caregivers—either directly in the residence or in a separate facility.