How hospice helps patients and families navigate end-of-life care

— Former president Jimmy Carter’s wish to enter hospice care has raised awareness about how families cope with the dying process

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The decision by former president Jimmy Carter to stop medical intervention and spend his remaining time at home with his family has brought new attention to hospice care.

Hospice care is a form of medical care given at the end of life, when medical interventions to prolong life are stopped, and the focus shifts to supportive care and helping both patients and their family members cope with the dying process.

By entering hospice, Carter has taken on “one of the most serious decisions anybody can make in their life,” said William Dombi, president of the National Association for Home Care & Hospice. “I think it’s a good thing that people are gaining awareness of hospice through this. Every generation needs to learn about what hospice is, how valuable it is and that it’s an option — a great option — that is available to them.”

We answered common questions about hospice and end-of-life care.

What happens when you go into hospice?

Hospice describes a specific type of supportive care for people near the end of life. A defining principle of hospice care is that it does not include medical interventions focused on curative treatments or prolonging life. Patients may decide to enter hospice care because they have run out of realistic treatment options, or they may decide that want to focus on quality of life and no longer want invasive medical treatments.<

“You need to get good medical care for the stage of illness you’re in,” said Leslie Blackhall, a physician and section head of palliative care at University of Virginia Medical Center. Hospice care doesn’t shorten life, “it’s just a more appropriate form of care,” she said.

Some people who need extensive care may spend their final days in a nursing home or assisted-living facility. But many people “entering hospice” simply go home to be with their families. A patient’s hospice care plan may include a team of nurses and home caregivers, therapists, social workers and religious advisers, Dombi said. The plan likely will include medical equipment, such as a home hospital bed, as well as medications to ease pain, anxiety and ensure comfort.

Most insurance plans cover the costs of hospice care. For those who don’t have insurance, many hospices will provide free care and, state Medicaid systems also may assist with the cost, said Phil Santa-Emma, medical director of hospice and palliative care services at Mount Carmel Health System.

How long do people live in hospice care?

Hospice is set up for patients who are expected to have less than six months to live. But there’s no way to accurately predict how long the dying process may take.

“A significant number of people live less than 15 days and a significant number more than a year,” Dombi said.

Even among very sick patients in intensive care units, doctors’ predictions of the timing of death are only accurate around 20 percent of the time.

“So many people are under the misconception that hospice means I’m dying right now,” Santa-Emma said. “We have to reframe that. Hospice is going to help me live the very best I can, and even though I have the terminal illness, I know I’m mortal, and I know I’m going to pass away. But between now and then, how do I live the best that I can?”

What happens if you live longer than expected?

Sometimes people in hospice care exceed doctor’s predictions for how long they might live. When this happens, the hospice provider will require the patient to be assessed every few months to decide whether the patient remains terminally ill, said Santa-Emma. If patients are stable and the disease is no longer showing signs of progression, “then you graduate from hospice,” he said.

Patients who continue to meet the criteria for hospice are allowed to continue the supportive care.

Margaret Drickamer, the associate medical director of inpatient hospice care at UNC School of Medicine, said it can be upsetting for family members and patients who have prepared for death, only to be told the patient has hit a plateau and is being discharged from hospice care.

“I have the unhappy job of saying this person isn’t dying fast enough,” Drickamer said. “It’s very hard on the families.”

What are the four levels of care for hospice?

Routine care, which is the predominant form of hospice care, is provided in the home — or wherever the patient lives. Several times a week, hospice nurses visit to assess the patient and provide medical services, and an aide visits to help the patients with personal needs such as bathing. Social workers and a chaplain or other spiritual adviser visit as needed.

General in-patient care is for patients whose symptoms are rapidly changing and can no longer be managed at home. These patients are admitted into a facility such a hospital or hospice facility to receive around-the-clock care.

Respite care is to give caregivers a break. The patient is admitted to a hospital or skilled nursing facility for a short period of time so family members and friends can take time for self-care.

Continuous care is for patients who are actively dying and need eight hours or more of continuous care from nurses and aides. Hospice sends a medical professional to the home to provide that care.

What’s the difference between hospice and palliative care?

Hospice care and palliative have a lot in common, but they are also very different.

Palliative care primarily focuses on managing pain and symptoms to ensure a chronically ill patient has a good quality of life. Some patients in palliative care may still be pursuing treatments to cure serious illness or slow decline.

A cancer patient, for instance, may still be receiving chemotherapy or radiation treatments to slow the progression of the disease, but also be given palliative care, such as medications to focus on pain and symptom relief, special equipment to make life at home easier and mental health support.

“When they refer to palliative care, we are primarily on symptom management,” said Jennifer A. Winegarden, a senior associate consultant for hospice and palliative care at Mayo Clinic Health System. “The focus is to truly palliate. That’s the definition – to relieve suffering.”

Someone can be on palliative care for years before they’re transferred to a form of hospice care.

Hospice is the final stage of palliative care in which the person has decided not to seek curative treatment, but is still given a wide range of supportive care for both patients and families.<

When should someone seek hospice care?

The answer depends primarily on the patient’s wishes, but can be influenced by their age, quality of life, prospects for future treatments, input from family members and the advice of doctors. Someone in their 40s with a young family, for instance, may be willing to continue invasive medical treatments longer than someone twice that age.

Drickamer said the answer boils down to this: How do I want to spend the time I have left?

Doctors may suggest hospice care for patients who are frequently returning to the hospital, sleeping more than 12 hours a day, eating less or losing weight or speaking only a few words a day, Winegarden said.

“The biggest issue is that people associate hospice with giving up, and I disagree,” Winegarden said. She said some of her patients have told her they haven’t “lived this well for years.” Hospice care is about bringing patients the greatest support and comfort with “the time they have left,” she said.

It takes courage for anyone to shift gears and focus on pain management and care instead of preventing or treating a chronic condition, Drickamer said. That’s why President Carter’s example is so important, she added.

“He’s gotten to a stage where he wants comfort and dignity,” she said. “He’s demonstrating to people how to do that.”

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