A few weeks ago, Kathy Brandt鈥檚 86-year-old mother was hospitalized in Florida after a fall. After rushing to her side, Brandt asked for a consult with a palliative care nurse.
鈥淚 wanted someone to make sure my mother was on the right medications,鈥� Brandt said.
For all her expertise 鈥� across the country 鈥� she was taken aback when the nurse suggested hospice care for her mother, who has advanced chronic obstructive pulmonary disease, kidney disease and a rapid, irregular heartbeat.
鈥淚 was like 鈥� really?鈥� Brandt remembered saying, struggling with shock.
It鈥檚 a common reaction. Although hospices now serve more than 1.4 million people a year, this specialized type of care, meant for people with six months or less to live, continues to evoke resistance, fear and misunderstanding.
鈥淭he biggest misperception about hospice is that it鈥檚 鈥榖rink-of-death care,鈥欌�� said Patricia Mehnert, a longtime hospice nurse and interim chief executive officer of , the first hospice in Colorado.
In fact, hospice care often makes a considerable difference for those with months to live. 鈥淲hen someone is further out from death, we can really focus on enhancing their quality of life,鈥� said Rachel Behrendt, senior vice president of , which serves the Phoenix metropolitan area.
confirms that hospice patients report better pain control, more satisfaction with their care and fewer deaths in the hospital or intensive care units than other people with similarly short life expectancies.
What should seniors and their families, the largest users of hospice care, expect? It鈥檚 fairly well understood that patients forgo curative therapies in favor of comfort care when they enter hospice. Here are additional features:
Four Levels Of Care
Hospice providers are required to offer routine care in patients鈥� homes (this includes seniors who reside in assisted living or nursing homes); continuous care at home for people with out-of-control symptoms such as pain or breathing problems; inpatient respite for families that need a break from caring for a loved one; and general inpatient care for medical crises that can鈥檛 be handled in any other setting.
With continuous care, a nurse must be on-site in the home for at least eight hours a day, helping to bring symptoms under control. Usually, this will happen in one to three days. Respite care has a maximum limit of five days.
Some hospices have their own general inpatient facilities and 鈥渋t鈥檚 a common misconception that patients are sent to inpatient hospice to die,鈥� said Jean Cohn, clinical manager at inpatient facility, Casey House. 鈥淚n fact, we鈥檙e frequently fine-tuning patients鈥� regimens in inpatient hospice and sending them back home.鈥�
Intermittent Care At Home
Routine care at home is by far the most common service, accounting for about 94 percent of hospice care, according to the from the National Hospice and Palliative Care Organization.
While services vary depending on a patient鈥檚 needs, home care typically involves at least one weekly visit from a nurse and a couple of visits from aides for up to 90 minutes. Also, a volunteer may visit, if a patient and family so choose, and social workers and chaplains are available to address practical and spiritual concerns.
Hospices will provide all medications needed to address the underlying illness that is expected to cause the patient鈥檚 death, as well as medical equipment such as hospital beds, commodes, wheelchairs, walkers and oxygen. Typically, there is no charge for such gear, although a copay of up to $5 per prescription is allowed.
What families and patients often don鈥檛 realize: Hospice staff will not be in the home every day, around the clock. 鈥淢any people think that hospice will be there all the time, but it doesn鈥檛 work that way,鈥� Brandt said. 鈥淭he family is still the front line for providing day-to-day care.鈥�
In assisted living, patients or their families may have to hire nursing assistants or companions to provide supplemental care, since hands-on help is limited. In nursing homes, aides may visit less often, since more hands-on help is available on-site.
Self-Referrals Are Allowed
Anyone can ask for a consultation with a hospice. 鈥淲e get many self-referrals, as well as referrals from family and friends,鈥� said Behrendt of Hospice of the Valley. Usually, a nurse will go out and do a preliminary assessment to determine if a person would qualify for hospice services.
To be admitted, two physicians 鈥� the patient鈥檚 primary care physician and the hospice physician 鈥� need to certify that the person鈥檚 life expectancy is six months or less, based on the anticipated trajectory of the patient鈥檚 underlying illness. And recertification will be required at regular intervals.
You Choose Your Physician
You have a right to keep your primary care physician or you can choose to have a hospice physician be in charge of your medical care.
At , the largest hospice in Illinois, 鈥渨e prefer that the patient keeps their primary care physician because that physician knows them best,鈥� said Dr. Mark Grzeskowiak, vice president of medical services.
These arrangements require close collaboration. For instance, if a nurse observes that a patient with heart failure is experiencing increased shortness of breath, JourneyCare staff will get in touch with that patient鈥檚 primary care physician. The physician is responsible for altering the treatment plan; the hospice is responsible for implementing that plan and giving clear instructions to the patient and family.
Concerns About Medications
鈥淭here鈥檚 a misconception that you鈥檙e going to be medicated to a highly sedated state in hospice,鈥� said Dr. Christopher Kerr, chief executive officer and chief medical officer for in upstate New York. 鈥淭he reality is our primary goal is to increase quality wakefulness. Managing these medications is an art and we鈥檙e good at it.鈥�
Family caregivers are on the front line since they鈥檙e responsible for administering pain medications such as morphine. 鈥淎bsolutely, there鈥檚 a great deal of fear and anxiety around all the issues associated with giving medications,鈥� said Cohn of Montgomery Hospice. 鈥淲e try to reassure caregivers that the doses we start with are very small and we鈥檒l see how the patient reacts and go slowly and deliberately from there.鈥�
Because most hospice stays are short 鈥� the median length is only 17 days 鈥� and because the diversion of painkillers from people鈥檚 homes is a risk, doctors have begun writing prescriptions for a week or two at a time, said Judi Lund Person, vice president of regulatory and compliance for the National Hospice and Palliative Care Organization. If concerns exist, hospices can have a lockbox for medications sent to the home.
Discharges Are Possible
Estimating when someone is going to die is an art, not a science, and each year hundreds of thousands of hospice patients end up living longer than doctors anticipated.
If physicians can document continued decline in these patients 鈥� for instance, worsening pain or a noticeable advance in their underlying illness 鈥� they might be able to recertify them for ongoing hospice care. But if the patient is considered stable, they鈥檒l be discharged, various experts said.
In 2015, nearly 17 percent of hospice patients were so-called live discharges, according to from the Medicare Payment Advisory Commission. Two days before a discharge, hospices are required to give the patient or family members a Notice of Medicare Non-Coverage. of discharge decisions can be lodged with a .
There are no regulatory requirements governing what hospices should do to facilitate live discharges. Some hospices will spend weeks helping patients make arrangements to receive medications, medical equipment and ongoing care from other sources. Others offer minimal help.
At The Very End
Almost 1 in 8 hospice patients don鈥檛 get visits from professional staff during their last two days of life, according to a study published in last year. And this can leave families without needed support.
Some hospices have responded by creating programs specifically for people who have a very short time left to live. 鈥淲e鈥檝e put together a special team for people who are expected to live 10 days or less because that requires a different kind of management,鈥� said Ann Mitchell, chief executive officer of Montgomery Hospice. 鈥淚nstead of a nurse for every 15 patients, a nurse on this team will have five to six patients and a social worker is available seven days a week.鈥�
鈥淥ne-third of our patients are here for less than seven days and often we get them in a crisis,鈥� said Kerr of Hospice Buffalo. 鈥淲e鈥檝e had to repurpose our services to address the urgency and complexity of these patients鈥� needs and that means we have to be ever more present.鈥� Across the board, Hospice Buffalo requires that patients be seen within 24 hours of an expected death.
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