When Gina Raiford, 54, enrolled her 95 year old grandmother into hospice care two years ago, she was heartbroken. Her grandmother was coping with serious heart failure and had suffered several episodes during which she became non-responsive and needed hospitalization. Eventually hospital staff suggested hospice.

That upset Raiford even more. “You hear the word hospice and you think to yourself, this person is going to die and I don’t want that,” she says. “Worse, you think by agreeing to hospice you’re helping the person die.”

Those feelings are not uncommon, says John Mastrojohn, chief operating officer of the National Hospice and Palliative Care Organization. “Most people don’t fully understand what hospice really means,” he says.

While people’s fears about hospice are understandable, quality hospice care is what many caregivers and health care professionals have come to believe is the most dignified and graceful way to deal with a terminal illness. It can offer physical and emotional support to the entire family, not just the patient.

But all too often, patients and caregivers are introduced to the idea of hospice during a time of high emotions, says Mastrojohn. That’s not the best time to make decisions—or do the necessary due diligence to find the highest quality care.

What hospice is—and isn’t

Hospice care is offered to individuals considered to be in the terminal phase of an illness with a life expectancy of six months or less. It doesn’t necessarily take place in a stand-alone facility: Patients may also receive services in a hospital or at home.

The goal is to provide the patient with comfort from pain, management of symptoms, and emotional and spiritual support at a time when curative treatment is no longer beneficial. 

Patients can also move out of hospice care if their condition improves, with the understanding that services can be re-instated when needed. Gina Raiford’s grandmother, for instance, has moved in and out of hospice for the past two years. Last month she celebrated her 97th birthday with her granddaughter, son and entire hospice team. 

A wide range of services

According to the guidelines provided by Medicare, hospice services include almost anything related to pain and symptom management, including on-call care to manage acute pain episodes.

It also extends to spiritual care, bereavement and counseling services, and in many cases art and music therapies. Private insurers generally cover all this, too.

Many caregivers and health care professionals believe hospice is the most dignified and graceful way to deal with a terminal illness.

Because hospice is designed to support family and caregivers along with patients, respite care is often covered as well. With this service the patient may be admitted to a hospice facility or hospital for a certain number of days to provide a break for the caregiver. 

In Raiford’s case, her grandmother responded well to hospice services and they helped support her as a caregiver, during what became a very tough time. “My mother died and I had to tell my grandmother her oldest daughter had passed. The entire hospice team—everyone including the chaplain, the nurse, the social worker—helped me tell her. They helped me so much with everything during that time.” 

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Finding quality care

Unfortunately growth in the hospice industry has led to troubled providers with faulty management entering the field. The result can be large gaps in service, inadequate care and even outright fraud.   

Be alert to anyone offering extra caregiving or pain management services without using the word hospice.

Last year the Office of the Inspector General (OIG) released a government report documenting lapses in care that sometimes left patients in pain for days. In other cases, service on weekends was rare and routine visits were often skipped.  

If you’re looking for hospice services for a loved on, be alert to anyone offering extra caregiving or pain management services without using the word hospice or explaining hospice rules. 

You should also check on the following:

What services are offered. Quality hospice should offer, at minimum, 24-hour on-call service, in-person visits, medical equipment, related medications, inpatient care to manage acute bouts of pain, and continuous care in the home.

The most recent satisfaction survey. Most hospice facilities conduct satisfaction surveys. Ask to see this data, says Mastrojohn. You’ll get a sense right away of how well the program is functioning. 

Accreditation. Any hospice you are considering should be approved as a Medicare provider. In addition look for extra accreditations from NHPCO and other industry organizations. 

The 24 hour on-call service. Even if the facility says they provide it, you need to dig deeper. One of the most common complaints found in the OIG report concerned patients and caregivers who needed help during an acute episode. But no one from hospice showed up, leaving both the patient and caregiver in a panic. That’s exactly the scenario hospice is designed to avoid. 

So ask: Does the hospice guarantee calling back within a certain amount of time? Ask how many people are on call during the daytime, evening, night and weekends. Is there’s a back-up person or people to cover when assigned staff is busy?

There’s no reason to be afraid of good quality hospice care, says Raiford. “It has made my life and my grandmother’s life better in ways we never expected.”  

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