Jimmy Carter marked one year in hospice care. Here’s what that means.
A lot has happened since Jimmy Carter entered hospice care one year ago and it has been bittersweet. He celebrated his 99th birthday and became the longest-living U.S. president, which prompted a flood of tributes. Then, sadly, his beloved wife, Rosalynn Carter, died in November after 77 years of marriage.
Carter’s decision to enter hospice has brought some new-found attention to this mysterious end-of-life service, which helps people die with grace when it may not be possible to cure a serious illness or a patient chooses not to undergo certain treatments.
“With care services coordinated by an interdisciplinary team of hospice professionals, most patients who enroll in hospice can have their end-of-life wishes respected while receiving care that focuses on symptom control and dignity,” says Angela Novas, who is a palliative and hospice care consultant for Hospice Foundation of America.
But people don’t often learn about end-of-life care until a loved one or they are offered it, and at that point, they might be too overwhelmed or far gone to find out what it really means. We’re breaking down what happens in hospice care so you can be prepared if and when that time comes.
What does it mean to go into hospice?
Hospice care is a type of health service for people with serious illnesses who choose not to get — or continue — treatment for their advanced issues, according to the National Institutes of Health’s National Institute on Aging.
Though this form of care was first developed during the 20th century to treat terminally ill cancer patients, it now encompasses many other diseases, including Alzheimer’s and dementia. Those receiving hospice care also might have chronic conditions, such as heart failure, kidney failure, or chronic obstructive pulmonary disease.
But Novas says the goal has always been the same: “To maximize comfort and support” for patients nearing death. Unlike traditional approaches to illnesses, hospice patients don’t receive any form of medical intervention designed to prolong life — instead, a comprehensive team of nurses, doctors, pharmacists, and spiritual counselors simply helps them manage symptoms and side effects until their time has come.
This method runs counter to traditional attitudes toward treating diseases, where patients are often told to fight for their lives, even when there’s nothing left for doctors to do. But hospice takes a different tact: Acceptance.
“In initial visits, we try to redefine what hope is. The patient may have once hoped for a cure, but if that’s not going to happen, maybe we can find hope in knowing what their end-of-life wishes are and having control over that.”
What happens in hospice?
Hospice provides a broad range of services to help a dying patient, such as reducing pain through various medications and providing equipment like hospital beds and wheelchairs or anything else a dying person might need to remain comfortable.
In addition to providing all medical care, hospice also covers the very emotional side of dying. Case managers can come in to help facilitate conversations with family members, while bereavement or spiritual counselors offer grief counseling.
“Hospice workers have one chance to get this right,” says Brown University professor Joan Teno, who specializes in health services like hospice. “There are no do-overs, there’s no fixing a traumatic death for that patient and family.”
As far as what a typical routine might look like, a primary caregiver — which is usually a family member — usually spends most of the time administering the patient’s care, then nurses and health aides will make several visits throughout the week to address more strenuous needs, like bathing. This could happen in a variety of settings, including at home or in a nursing home.
But contrary to popular assumption, this facilitated support is not round-the-clock: Teno says the hospice team checks in once a day, providing usually eight hours of nursing care over 24 hours. There are some exceptions, though — for instance, Novas says if a patient is deteriorating fast, nurses will quickly step in and spend as much time with them as necessary.
If symptoms are severe, Novas says “we may sometimes put a patient in an acute care hospice setting, where they will receive 24/7 nursing care with medical supervision with either nurse practitioners or physicians on site. Once we can get those symptoms under control, they can return home.”
Of course, the services offered can vary depending on the provider. “Federal regulation says that hospice must provide you with a list of services that you’re going to receive,” says Teno. “So you really need to pay attention to what services are provided and to make sure that those services are meeting your loved one’s needs.”
Who qualifies for hospice care?
For a patient to qualify for hospice care, doctors must deem that a person has six months or less to live. Of course, that doesn’t guarantee that person will definitely die in that time frame, but there will need to be proof that the person’s health has been steadily on the decline.
Even with recent innovations in medicine, it’s often hard — if not impossible — to predict exactly when someone will pass away. And this is especially true with stroke patients because their condition can worsen into many other health complications, including seizures or even comas. For that reason, and others, Teno says people have a tendency to wait to go into hospice until the very end of their life, and most are generally under hospice care for less than a month. If a person happens to live longer than six months, a physician will re-evaluate their health to see whether the patient still qualifies.
So just how many Americans turn to this form of care? Roughly 1.6 million patients received it in 2018, according to the Centers for Disease Control and Prevention. And luckily, it’s largely covered by insurance: Medicare, Medicaid, and even private insurance, although you will be required to use a certain provider just like you would with any other healthcare cost. For those who don’t have insurance, there are still options — some hospice agencies operate as nonprofit organizations or provide services free of charge. On average, hospice can cost anywhere from $150 per day to $500 per day, depending on how much care is needed.
But the service is generally provided on a regional basis, so the first step is to search for agencies that serve your area. In terms of where this care is provided, families can opt for at-home services, as Carter did, or choose another setting, such as an assisted living facility, according to the Mayo Clinic.
Both experts agree that the goal is to provide comfort during the final months and days of life, not a cure. “Hospice — and the approach to medicine overall — should be about patient and family-centered care, and at the heart of that is understanding what the patient wants and needs.”
