Hospice care, which strives to relieve the symptoms and suffering caused by a terminal illness, becomes an option when a patient has been given six months or less to live. And that means that choosing a hospice for yourself or a loved one is often a choice made under duress.
A doctor may have just shared the bad news of a family member's prognosis while complications of the illness are multiplying and the hospital — unable to offer any further treatment — is asking for a plan for discharge.
Martha Twaddle, a hospice physician for 28 years until becoming head of Palliative Medicine & Supportive Care at Northwestern Medicine-Lake Forest Hospital three years ago, says that she never leads with a referral to hospice when she has end-of-life conversations with her patients.
"I say: Let's talk about what's most important to you at this time. What do you know about your condition? What are you hoping for? What is meaningful to you?” After that, she says, “We'll talk about which resources we can tap into — such as hospice care — that will help with the problems we have identified.”
Like hospice, palliative care of the type Twaddle practices at her hospital, aims to relieve suffering and empower patients. But it is intended for any patient with a serious illness and doesn't require a terminal prognosis to qualify. Hospice, which does, is a more intensive service for when an illness has advanced.
Hospice care in America is most commonly provided in the patient's home — or in a long-term care facility where the patient already lives — with the hospice team visiting regularly and as needed. Some hospice agencies have developed hospice units or hospice houses for patients who can't remain in their own homes, but the majority of hospices aren't able to offer this alternative setting. If your loved one needs this service, that would influence your choice.
"The ultimate goal for hospice care is to take in the patient and family, hold their hand, and provide all the care they need,” says Jennifer Kennedy, senior director, regulatory and quality, for the National Hospice and Palliative Care Organization. That includes leaving the family with a belief that they did right for their loved one. “We only have one shot to get it right,” she says.
Which Hospice Should You Choose?
The next question may be even harder: Which hospice should you sign up with?
Sometimes the choice is constrained by what's available in your community, what your doctor suggests, who the hospital works with or what's included in your health plan's coverage. But some cities may have a hundred or more hospice agencies; a suburb may have 50.
Hospice Compare, a federally funded site launched in 2017 to provide public information on the quality of 3,900 hospice programs that participate in Medicare, can also help you find prospective agencies. The site makes it possible to search for local hospices and compare them with other hospices and with national averages on quality measures.
Some consumers might find the government's database hard to understand.
Experts have pointed out that the quality differences on many of these scales can be slight. But Hospice Compare does provide objective data on, for example, how often the hospice assessed its patients’ pain on initial visit and whether the caregiver would recommend this hospice to family and friends.
A new quality measure is planned for Hospice Compare later this year: How many professional visits were made by the hospice team to the patient's home during the last three days of life? This measure could reflect the hospice's skill at recognizing and responding to changing patient needs — in other words, how well it performs when death is imminent.
Try to Talk to Them Face-to-Face
Twaddle and other hospice and palliative care experts recommend, when possible, interviewing several prospective hospices to gauge the type and quality of their services.
Local hospices can be found on the internet or in the phone book. Neighbors and friends may have recommendations, as will your family physician. Once you've identified the names of several promising hospices and called to request an informational interview, it helps to bring with you a list of questions to help you judge the type and quality of care your loved one will receive there.
How the hospice responds to the initial inquiry will be telling. Does it make the patient and family feel nurtured and listened to from the very first call for help? If not, consider looking elsewhere.
And don't feel guilty about starting the search as early as possible. As Twaddle notes, “So often, hospice is introduced in crisis. Wouldn't it be great to start developing a relationship with a hospice in advance?” Kennedy adds that doctors could help by introducing the hospice concept to their seriously ill patients earlier, as a future possibility — before the crisis hits.
Questions to Ask a Hospice
Consider asking each prospective hospice the following:
- Does its medical director make home visits to address complex symptoms?
- How — and how quickly — does the hospice respond to patient crises after hours?
- Does it provide all of the levels of care mandated by the Medicare hospice benefit — including continuous care in the home for periods of crisis and inpatient hospice care when needed to bring complex symptoms under control?
- Is the hospice accredited by one of the three national organizations that survey hospices on their quality, which means it went above and beyond what is required by Medicare?
- Are the hospice's professional staff individually certified as experts in their field by their recognized professional bodies?
- How robust is the hospice's volunteer program and what does it include?