My mother was a healthy resident of a memory care facility when she fell and struck her head. She was whisked to an ER, deemed terminal and, because she was confused and agitated by all the noise and her IVs, she was placed in restraints in an ICU. I'd heard a little about hospice and asked the staff to contact them.
A hospice team went into action. By the time my mom was transported back to her own room at the memory care home, a hospital bed was in place and gentle help was provided during the week she lay dying. She was not in restraints. Music played. Family, friends and staff stopped by her room. My husband and I were at her side when she breathed her last in perfect peace.
Hospice, you see, is about hope of another kind. It's not, as some people imagine, a vine-covered cottage where people are relegated to die. Instead, it is an end-of-life program of assistance that has been growing in the U. S. since the 1960s and today it is very much a part of mainstream medicine.
What Is Hospice?
Hospice a is a comprehensive team of physicians, nurses, social workers, therapists, counselors, chaplains and volunteers which keeps clients – persons with a life expectancy of less than six months – pain-free, comfortable and dignified. The team also provides practical and emotional support to family members.
In the past ten years, services have grown substantially in the number of hospice programs and patients served. In 2012, according to the National Hospice and Palliative Care Organization, an estimated 1.5 million Americans received services through some 5500 hospice organizations in the U.S., including all the states, D.C., Puerto Rico, Guam and the U.S. Virgin Islands.
About two-thirds of hospice care is in the place the patient calls home which includes nursing homes and residential facilities. Some hospitals have hospice services and some hospices have their own in-patient facilities or hospice houses. Most clients are over 65 with a slightly higher percentage of women. Some doctors are reluctant to propose hospice. They may not have experience with hospice or they don't want to admit their patient is dying or fear patients will think their doctor has given up on them. Increasingly, however, medical schools are addressing end-of-life care, and physicians are learning just how supportive hospice can be. Often it is a relief to the physician when the family brings up the topic.
Who Can Use Hospice?
Any patient may opt for hospice if a doctor certifies there is a terminal illness with a life expectancy of about six months or less. The patient need not be bedridden, but must agree to forego further aggressive treatments unless the therapy is directed at symptom relief rather than cure. At the end of six months, the patient may stay with hospice if the illness is still deemed terminal.
On the other hand, the patient may return to traditional medical care and aggressive, curative treatment at any time. In the 1970s, when the hospice movement was growing, most patients were people with cancer. Today, this is true for less than half. Other diagnoses include dementia, heart or lung disease, stroke and other problems.
On average, clients spend between two and three weeks under hospice care, although more than one-third of patients receive hospice care for a week or less. (In many of these cases, there is an unexpected precipitating incident such as my mother's fall.) On the other hand, some receive hospice services for six months or longer.
Hospice Covered by Insurance
Many people are surprised to learn that hospice is covered by most insurance including Medicare, Medicaid, and private plans. While private policies vary, typical benefits include almost everything including medical equipment and medications. Coverage also pays for home care providers, doctors, nurses, therapists, chaplains, and social workers. In fact, less than one percent of clients are self-paying.
Although insurance may not cover certain small co-pays, few hospices actually bill clients for them because administrative costs often exceed the amounts due. Many hospices have endowments funded by foundations, corporate grants, memorial gifts, and fundraising activities such as thrift shops. These funds often cover costs for uninsured patients.
Hospice Serves Families, Too
Most hospices have volunteers who offer direct, non-medical assistance to patients and their families. They may help with shopping, for example, or stay with a patient while family members run necessary errands. Respite care is available in some cases when a caregiver becomes temporarily unavailable.
Often hospice can help family members say the things they want to say when it's time to bid farewell. Hospice also provides bereavement services to the survivors, so they can look back without regrets.
Just knowing you are not alone is remarkably healing for both hospice patients and their families. Hospices help ensure that comfort and support are available to those who need it most.
Hospice tailors its support to an individual's needs. Among the services are:
- 24-hour support by phone or personal visit
- Direct patient nursing care
- Medical appliances and supplies
- Prescription drugs
- Services of a medical social worker who can coordinate community resources and provide family counseling
- Chaplain services
- Counseling (including dietary, pastoral, and other)
- Home care aide for bathing and other personal assistance
- Homemaker services (for light housekeeping or meal preparation)
- Short-term in-home care (8- to 24-hour coverage) when the family cannot provide it
- Short-term inpatient care (if caregivers require a respite or for procedures necessary for pain control or other symptom management)
- Physical, occupational and speech therapies
- Bereavement service for the family for up to 13 months following the patient's death
Some hospices provide additional services including:
- Music and animal therapy
- Trained volunteers who provide compassionate support, companionship and assistance with tasks such as transportation, shopping, babysitting, and some personal care services
For More Information:
The Hospice Foundation of America offers a searchable website with extensive online information such as insurance coverage, books, brochures and links for caregivers. Visit www.hospicefoundation.org or phone 800/854-3402.
The Website for the National Hospice and Palliative Care Organization's searchable website gives information of many topics and lists hospices nationwide by zip code. Visit http: www.nhpco.org or phone 800/646-6460.
Lynn Pribus lives in near Charlottesville, Virginia. Her mother, Marian, died in hospice care.