When former President Jimmy Carter recently entered home hospice care after many years of cancer treatment, it was an invitation for families across America to consider how they would like to spend their final days.
For experts in end-of-life care, the 98-year-old's announcement was one last act of public service.
“Hospice is often an incredible resource for patients at the end of life, as well as the best way to support families, through care within their own home or nursing facility — but it does not necessarily mean that someone is actively dying,” said Dr. Maria Silveira, a palliative care physician at Michigan Medicine and the VA Ann Arbor Healthcare System. “We also find that palliative care is often confused with hospice.”
What's the difference?
But the two aren't the same: While palliative care aims to keep someone comfortable and support their quality of life and mental health, treatment for their life-threatening illness can continue. Most large health systems offer it while patients are hospitalized.
Hospice focuses on comfort only, after a patient has decided to stop aggressive treatment or treatment is no longer working. The patient may continue to receive some treatment-related care.
Sometimes health systems have dedicated palliative care clinics. Hospice care, meanwhile, can be provided at home, or in a nursing home or a dedicated hospice residence. It provides support for the patient and family alike.
“Hospice is appropriate when someone with serious illness finds that going back and forth between the hospital, the emergency room and the doctor's office over and over is too burdensome and no longer useful,” Silveira said.
Medicare, the government health insurance program for seniors, covers hospice care for patients who are at high risk of dying in the next six months. Although some patients wind up living even longer than that, the average Medicare recipient who entered hospice care lived about three weeks.
When and how to get care
Dr. Phillip Rodgers is a family physician and a palliative care specialist at Michigan Medicine who is active with organizations promoting better access to high-quality palliative care, including hospice care.
“The problem is, as a profession we really struggle to predict how long people are going to live in terms of months, but it's easier to do when it comes to days or weeks,” Rodgers said. “Meanwhile, people with dementia have caregiving needs for years before they might have a six-month prognosis, so they're badly served by the Medicare hospice benefit as it's written today.”
Medicare requires two doctors to certify a patient's six-months prognosis. People with Medicare Advantage plans must get their hospice coverage through regular Medicare, Michigan Medicine noted.
Silveira said it can be difficult for patients who have dementia, frailty and multiple chronic illnesses to qualify for hospice care. These patients need to be nearing death to receive hospice, but their families may become overwhelmed with caregiving long before their loved one qualifies.
“People today live with a higher burden of serious illness, with many more treatment options available, than 40 years ago. But they and their families often need help earlier in the course of that illness than current hospice coverage provides,” Rodgers said. “There are really important policy discussions under way, aimed at improving hospice access earlier in the course of illness.”
Hospice care at home
The experience of hospice care may be different depending on where people choose to spend their last days. Care at home doesn't come with round-the-clock staff. But caregivers can call providers at all times of the day or night for advice.
“Hospice agencies can arrange for pain medications, hospital beds, oxygen tanks and other supplies to be brought to the home, which can be a wonderful benefit especially given the difficulties people now encounter in getting some of these medications from their local pharmacy in a timely way,” Silveira said. “Hospice can also provide some respite care and bath assistance. Even still, caring for a seriously ill loved one at home represents a giant responsibility for the family.”
Nurse practitioners associated with at-home hospice agencies can prescribe and manage medications. They can send respite staffers to help reposition or bathe a person and give caregivers a breather.
Even with that aid, experts recommend two people remain in the home at all times with a patient who is bed-bound. It can take two people to move a patient and provide essential personal care. This means a lot of caregiving responsibility remains with family, friends, neighbors or members of a person's faith community.
Getting outside help
Hiring additional aides can cost $30 per hour or more through an agency. Even if families have long-term care insurance that will defray the cost, workforce shortages may make it difficult to find qualified personnel.
If someone you know has entered at-home hospice care, Michigan Medicine suggested offering the family your help or support.
For patients already living in nursing homes or who are hospitalized, going home for hospice care may not be possible. Some people also don't want to die at home.
Hospice agencies offer services within many nursing homes. These typically require payment, be it from long-term care insurance or a patient's or family's personal resources.
For patients with little money saved or lower incomes, Medicaid may cover the cost of hospice care in a Medicaid-certified long-term care facility. Rodgers suggested reaching out to a hospital or clinic social worker to find out if your loved one may qualify.
The experience of hospice care is also changing. A recent ProPublica/New Yorker investigation found a rise in for-profit hospice agencies over the past decade.
As a result, instead of dedicated staff serving a few patients, a patient may have many different people providing care at different times.
It's a good idea to “shop around” for the right hospice agency, the experts suggest. Ask around and look at ratings online. Use a Medicare tool that lets anyone compare quality between agencies, but doesn't include patient ratings.
Plan ahead and get records in order
Get key documents and financial advice in order well before you need them, Michigan Medicine suggests.
Ensure that you have signed paperwork specifying whom you authorize to make medical decisions for you if you can no longer do so. This is important even if you're married.
Admission to nursing homes for hospice care can hinge on being able to prove that someone has the patient's permission to make that decision on their behalf. Look into getting long-term care insurance through your employer or insurance agent. This can help pay for nursing home care, hospice residence or home health aides when other coverage isn't available.
If you think you might become a loved one's caregiver, take time now to learn how to use any paid or unpaid leave time you're entitled to under the Family and Medical Leave Act.
Talk to a financial planner or attorney about possible options if you have assets that could prevent you from qualifying for Medicaid benefits.
Take care of other matters, such as securing a power of attorney for financial decisions, and designating a loved one as a joint owner of bank accounts, property, or as a designated beneficiary of retirement accounts. Without this, there may be delays in paying bills and for expenses once your loved one loses the ability to do this.
Reforms on the way?
Key changes in end-of-life care may be on the horizon, but how fast they come about could hinge on the voices of patients or caregivers, Rodgers said.
One potential change: The requirement that admission to hospice be based on life expectancy and not a person's condition and needs. The requirement to stop all treatment and hospitalization for the underlying condition may also change. This could apply, for example, when doctors continue to remove fluid built up in congestive heart failure patients, which can greatly improve someone's quality of life.
“There has been real interest among some in Congress and in the Centers for Medicare and Medicaid Services to reimagine the hospice benefit and modernize it to be based on need not a six-month prognosis, and to improve quality while reducing waste, fraud and abuse,” Rodgers said.
“As the benefit is structured today, there are important inequities based on income, availability of family members to step out of the workforce and become home caregivers, and other factors such as whether someone's cultural or spiritual background means they prefer not to die at home,” Rodgers said. “Hospice is a $20 billion part of our health care system that needs to be modernized to improve access and accountability. Policymakers do pay attention to what they're hearing from their constituents.”
The U.S. National Institute on Aging has more on palliative care and hospice care.
SOURCE: Michigan Medicine, news release, Feb. 22, 2023