Life, as they say, is a terminal condition. We’re all mortal, and no matter how well we eat, exercise and try to fend off the ravages of time, eventually we will all die. That can be hard to accept or talk about, especially in the case of a patient who’s dealing with a terminal illness. But when the time comes, it’s good to know that you don’t necessarily have to go it alone; hospice care can be a wonderful resource for patients and families looking to ease that transition from this world to the next.
The Hospice Foundation of America, a nonprofit organization that provides hospice-related resources for health care professionals and the public, reports that the focus of hospice care is different from that of more curatively minded medical intervention, or treatments that are intended to cure the disease. “Hospice offers medical care toward a different goal: maintaining or improving quality of life for someone whose illness, disease or condition is unlikely to be cured.” Hospice care typically involves an interdisciplinary team of providers, including doctors, nurses, social workers, grief counselors and in-home health aides who can assist with a variety of personal care needs that make day-to-day living easier for patients and their families. The goal of this care is palliative, which means making the patient as comfortable as possible. This may include administration of pain medication or other treatments that address symptoms the patient is experiencing. The key is that the goal of any treatment administered by hospice is not curative, but rather focused on quality of life.
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John Mastrojohn, executive vice president and chief operating officer of the National Hospice and Palliative Care Organization, the oldest nonprofit membership and leadership organization for hospice care providers in the U.S. which is celebrating its 40th anniversary in 2018, says that the modern concept of hospice care has been around for a while now, but there are still misconceptions about what it is and what it does. One of the most enduring misconceptions is that entering hospice means going to a facility. “I think it’s important for people to realize that the large majority of that care is provided in the patient’s place of residence,” Mastrojohn says. It’s not a case of the patient going into hospice to die; hospice enables patients to spend their last days, weeks or months at home with their families. It’s a vital service that brings skilled providers into your house to help you stay comfortable and enjoy what time you have left with your family.
Although hospice is intended for patients who can’t be cured, it isn’t restricted just to the very last days of life. Medicare states that “hospice care is for people with a life expectancy of six months or less (if the illness runs its normal course). If you live longer than six months, you can still get hospice care, as long as the hospice medical director or other hospice doctor recertifies that you’re terminally ill.”
It can be difficult to predict how long a patient has left to live, and some patients improve to the point where they may “graduate” out of hospice and no longer need the service. However, Mastrojohn says most families wait longer than maybe they could or should and that means patients tend to spend just days in hospice care rather than weeks or months as this type of care is ideally intended.
When it comes time to find the right hospice for your situation, it’s important to know that not all hospices are the same, says Amy Tucci, president and CEO of the HFA. If you have a few options to select from, it’s important to do a little research to find the right fit. “It’s not unlike choosing another health care provider, but I think there are a lot of other considerations that go into it.”
Referrals from your doctor or friends and neighbors can help you start your search. Another great resource is Medicare’s Hospice Compare website, Tucci says. The site allows you to search by zip code and compare how local hospices stack up in various performance categories compared to each other and the national average. “It’s a relatively new site, and there’s still some kinks to work out. Some hospices have some issues with exactly how data is collected and reported, but it’s certainly the best tool out there and it’s better than anything that ever existed before,” she says.
However, the task of finding a hospice can be an emotionally challenging process, and because it can be an uncomfortable endeavor, many people put it off until the last possible moment. This can make finding the right hospice for your situation harder. “At the time when families are making a decision about which hospice — assuming that the community in which they live has multiple hospice providers and they have a choice — there’s a lot going on,” Tucci says. Typically, the patient is “very ill and likely to die in a relatively short period of time. There may be family dynamics going on, which aren’t always good, and sometimes people are making these decisions from a long way away,” if the family member searching for the hospice for a loved one lives in a different state, for example.
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Ideally, selecting a hospice should be given as much time and energy as any other medical decision you might make. But for many people, thoughts of hospice only start to develop when the attending physician determines that no additional medical intervention will help cure a terminal disease. In other cases, “it’s patient-initiated,” Tucci says. Patients who’ve been dealing with a lengthy illness and onerous medical treatment, such as what’s typical for cancer, may decide they’ve had enough and want to let nature take its course.
Still, it’s not a discussion most of us want to have, and more often than not, Tucci says families end up with whichever hospice their doctor recommends. In an ideal situation, you’d be able to meet with three or four providers first to find the one that seems to fit best or that you or your loved one feel most comfortable with.
Regardless of when the search for hospice care begins, Tucci says there are several things you need to discuss up front. First among them is to set out expectations for the relationship by determining how much care a family member will need to provide. “Most family members don’t understand the level of care they’re going to be expected to be involved with, and [many don’t understand that there’s] not going to be a nurse at the patient’s side 24 hours a day.” She says it’s important to understand who’s responsible for what and how hospice can support that family caregiver in caring for the patient. The family caregiver is typically the lead caregiver, assisting the patient with medications and daily activities round-the-clock, while hospice providers come in to offer specialized services, such as coordinating care, assisting in an emergency, providing follow-up care or services the family caregiver might not have the training or experience to offer, such as spiritual guidance. Hospice also offers respite support for the family caregiver so that person can take some time away from the patient to care for him or herself.
Other questions you should ask range from how long the hospice has been in operation (a track record of success can be a good sign, but newer hospices may also be able to provide excellent care) and whether the hospice you’re considering is Medicare-certified. Most hospices are, but you should double-check, as insurance claims from an uncertified hospice may be rejected for payment. To be certified by Medicare, a hospice must abide by Medicare conditions of participation, intended to ensure that patients receive adequate care. Medicare and Medicaid cover the cost of hospice care, as do many private insurers, but before entering hospice, it’s wise to ask what’s covered and if there will be a financial impact to the patient or family by engaging this care.
Tucci says you should also ask whether nurses, physicians, social workers, chaplains and other providers involved with the hospice are certified in palliative car e. This means they’ve received additional training in helping patients who are terminally ill. You should also ask how frequently providers will visit with the patient and what to do in an emergency situation. If the patient has “a problem at 3 o’clock in the morning, how long will it take to get help? You can always talk to someone on a helpline, but if you need help at home, how long will it take for someone to get there?” she says.
Although the bulk of hospice care is delivered in the home, in some instances patients may need to be admitted to an inpatient facility, and you should ask ahead of time how such situations will be handled. “Many times, hospices have their own facility, or they may contract with a nursing home or hospital,” to offer more intensive care when needed, Mastrojohn says. Knowing where you or a loved one will end up in case you need something that can’t be provided at home may help you narrow down your choices.
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In addition, ask about the services volunteers offer. “Hospice is the only kind of medical care in the country where volunteers are required to participate,” Tucci says. Medicare mandates that volunteers from the community work alongside professional staff to offer services that extend or enrich the hospice experience. These volunteers may offer a range of services and their availability and offerings vary from hospice to hospice. “There’s a whole variety of things volunteers can do,” Mastrojohn says, from providing “visits for somebody who might be isolated socially. They can do light errands. Some people like to read, for example, but can’t do it anymore because of their condition so the volunteer will read to them.” Attorneys sometimes volunteer with hospices and may be able to help with paperwork or drafting wills. “It depends on the structure of the program and the talent within the community, but it’s always good to ask about the volunteers and how quickly they can be available if they’re needed,” he says.
Mastrojohn says discussions about advanced care planning and when to commence hospice often come up when estate planning or drawing up wills, and that’s a perfectly appropriate time to make your own wishes known as well as listening to what other family members say they want when the time comes for them. Regardless of when the conversation comes up, Mastrojohn says you should keep your ears open and “listen for cues that the person wants to discuss their plans.” He says even though hospice is intended for people who have months rather than years to live, “most people end up in hospice and it’s days rather than weeks or months. And many times, what we’ve heard from families and patients is, ‘I really wish I’d known about this sooner.'”
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How Can I Find the Best Hospice Care? originally appeared on usnews.com
