After receiving hospice care at home for the last six weeks of her life, my aunt died of renal cancer at age 44.
Based on that experience and the stories of many others, I assumed hospice was reserved for the last weeks or days of life. But when my grandmother passed away in a nursing home at age 92, she had received hospice care for a little over a year—care that provided great comfort in the later stages of dementia.
After talking with Jon Radulovic, vice president of communications for the National Hospice and Palliative Care Organization, I learned I wasn’t alone in my misconception of the timing of hospice care.
“Thirty-four percent of hospice patients die within seven days or less,” he says. “That’s not enough time to take full advantage of the services.”
The Nature of Hospice Care
Perhaps we don’t take full advantage of hospice services because we don’t understand what hospice is, and what it is not.
First and foremost, says Radulovic, hospice is not “giving up.” It stops curative therapies when your loved one is diagnosed with a terminal illness, but it does not abandon care.
“Hospice focuses on caring for the whole person, striving to help them live as fully as possible,” he says. This holistic care includes services such as symptom control, pain management, assistance with the emotional and spiritual aspects of dying, and bereavement care for family and friends.
Care is provided by a team of doctors, nurses, health aides, social workers, clergy members, therapists, and trained volunteers who develop a care plan to meet each patient’s needs.
“Each person has a unique plan of care,” explains Radulovic. “It’s not one-size-fits-all.”
The Length of Hospice Care
Unfortunately, doctors may be reluctant to talk about hospice because they don’t want patients to think they’ve given up on them, and patients may not realize they can ask about these services.
“Patients think the doctor will bring it up, and doctors think the patient will bring it up,” says Radulovic.
That’s why, if no one has mentioned hospice care to your family, he recommends you start the conversation yourself.
“Ask the physician, ‘Would you be surprised if my loved one died within six months?’ If they say, ‘No, not really,’ it’s time to make the call.”
After all, Medicare hospice benefits require that a patient have a prognosis of six months or less. But, as illustrated in my grandmother’s case, that doesn’t mean hospice benefits are limited to six months. As long as a physician certifies that your loved one continues to meet eligibility requirements, he or she may receive hospice care for as long as necessary.
“Hospice is not just imminent death care,” affirms Radulovic. “It’s designed for the last few months of life.”
When Your Loved One Is Reluctant
No matter how you may feel about it, though, Radulovic points out that the decision to take advantage of hospice care is ultimately up to your loved ones themselves—provided they are of sound mind to make that choice.
He shares that his father, who was suffering from lung cancer, chose to continue aggressive therapies rather than consider hospice. In fact, two days before he died, he was supposed to start another round of chemo. In the end, he received just 36 hours of hospice care before he passed.
“Maybe he would have lived longer with more hospice care, but he was trying to see the birth of his grandchild,” says Radulovic. “It’s still the patient’s decision.”
If you feel it’s time for hospice but your loved ones aren’t on board, consider calling a community hospice provider to get the ball rolling. Professionals can meet with your loved ones and help them make the best decision for their situation.
Ultimately, says Radulovic, now is the best time to start the conversation about end-of-life care.
“It’s really important for patients and families to think about this long before they find themselves in a crisis situation,” he says. “One of the most common things we hear from families after a patient has died is, ‘Why didn’t we get hospice earlier?’”
SHARE YOUR STORY: What are your experiences with hospice care?