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Medicare pays for hospice care — the replacement of curative medical treatment for a terminal illness with comfort-based or palliative care — once a doctor gives a patient covered under the plan a prognosis of six months or less to live if the patient wishes.
But that doesn’t mean people always know when to start hospice care, what questions to ask providers, or what to expect.
At By the Bay Health, a nonprofit subsidiary of UCSF Health with offices in Larkspur, San Francisco and Sonoma, “we rely on doctors to start the conversation,” says Dr. Kai Romero, the hospice and healthcare provider’s chief medical officer. formerly known as Hospice by the Bay.
“I would start by asking, ‘Are you feeling better after going to the hospital?’ … Maybe that intervention isn’t helpful anymore — maybe it would be better to be in your most comfortable place, surrounded by whoever you love,” Romero said.
For most people, she notes, home is the most comfortable place. About 70 percent of By the Bay Health’s patients receive hospice care at home, according to Romero, 28 percent “in some type of qualified nursing or residential facility, and a very small number in a hospital.”
For more information about By the Bay Health, visit www.bythebayhealth.org. You can also watch a short documentary called Compassion In Action: The Hospice By The Bay Story at www.youtube.com/watch?v=0gIaDeK17pk.
Other providers also have hospice homes, residential facilities “that provide hospital-level treatment care in a less institutionalized setting,” Romero explains, pointing to Mission Hospice & Home Care’s six-bedroom Mission House in Redwood City as an example.
Patients and their families should ask exactly what services their hospice providers provide. In general, a standard daily rate “covers all patient medications, nursing, medical care and supervision, durable medical equipment such as dressers, hospital beds, and oxygen supplies,” Romero said.
Additionally, By the Bay covers visits to the hospital or ER for uncontrollable symptoms like persistent vomiting or accidents like a fall, but “others will say if you do that you need to leave hospice,” she adds. “We will also pay for patients to continue having visits to their GPs like an oncologist.”
Romero recommends inquiring specifically about the frequency of care visits – the base number and how to increase that if needed.
“A lot of people imagine that a nurse would be stationed at their home 24/7, but that’s not the case,” she notes. “Some (providers) have a nurse come in every two weeks and come to hell or flood, not more often.”
Another question is how many patients the provider assigns to each caregiver.
“For-profit companies often have more than 20 patients per nurse; nonprofits are lower, in the 15 to 20 range or sometimes less,” Romero said.
Also, ask about the frequency of visits from home nurses “that are really helpful with day-to-day care, like bed baths,” and other tasks that can become a burden on the patient’s existing caregiver, Romero said.
By the Bay Health’s Chief Medical Officer, Dr. Kai Romero said it’s important to ask exactly what services hospice providers include.
Although hospice care stems from the patient’s own decision to stop aggressively treating their illness, the transition to palliative care may require some adjustments.
“For people who have been in a medically intensive environment, it can be shocking – ‘I’ve had nine doctors, where did they all go?’ ‘ Romero said.
“Ultimately, people are much happier at home, but when you’ve been on that freight train for months, it can be quite an adjustment to get off again,” she continues. “For people who have had lab scans or CTs every month, being admitted to hospice care means breaking away from that model and aligning yourself with your symptoms as your body has them.”
And when new symptoms emerge, the medical response focuses on comfort and pain relief, not testing.
“If someone develops a cough that could be pneumonia, we don’t send them to the hospital for a diagnosis. If their pain worsens, we don’t send them to the hospital for further imaging,” explains Romero.
“Sometimes people say, ‘We want this aggressive intervention for comfort reasons.’ We always ask, “Is this the least aggressive, least intense way to deal with this?” Although this intervention is sometimes required, “you could usually manage it with pain medication,” says Romero.
This also does not mean that any medical intervention is discouraged. Hospice patients who depend on blood transfusions to generate energy or to treat breathing problems, for example, receive these simply palliatively, “instead of the hospital system, ‘We do it three times a week, that’s just the way it is’. ‘ remarks Romero. “We will not monitor your hemoglobin; Just tell us if you feel you need it.”
Patients can remain in hospice care for longer than six months as long as their prognosis is unchanged. But about 5 to 10 percent of patients, typically those with dementia and other neurodegenerative diseases, improve to the point where they are no longer eligible for hospice care.
“Most people don’t think of it as a joyful thing,” Romero said. “We make sure they land as softly as possible, knowing that we are fundamentally shifting their access to services. It can be very hard, especially for a family who has a loved one who has Alzheimer’s, to hear that they no longer have access to home health care and home nursing.”
Some hospice providers continue to provide services after the patient dies. Part of a national chain with coverage for most of the Bay Area, ProMedica Hospice in Burlingame and Heartland Hospice in San Rafael offer “supportive bereavement care for family members and loved ones” for up to 13 months after a patient’s death, according to their website. This support may include short-term bereavement counseling, follow-up calls, and support groups, among others.
Whichever hospice provider you choose, you don’t have to wait until you qualify for such services before exploring your options.
Hospice care “embodies patients’ goals and what they want to achieve at the end of their lives,” explains Vonetta Ware, a registered nurse at Ohio’s ProMedica Hospice, in a company video. “You want to be sure that you are choosing a service that meets your goals and desires.”