Former US President Jimmy Carter, 98, is both the oldest living and longest-lived US president. Recently, after a series of short hospital stays, he announced that he will spend his remaining time at home with his family and receive hospice care instead of additional medical intervention.
Jimmy Carter held office from 1977 to 1981 as the 39th president, was a Nobel Peace Prize winner, a Grammy Award winner, and was also awarded the Presidential Medal of Freedom. Carter and former first lady Rosalynn Carter founded The Carter Center, a human rights organization, and they have also been prominent supporters of Habitat for Humanity, the nonprofit devoted to affordable housing. Jimmy and Rosalynn have been married for 76 years, and they have four grown children.
In recent years, Carter has seen serious health challenges. In 2019, he suffered from various falls and underwent hip surgery. He has also survived metastatic melanoma. After a series of recent short hospital stays, Carter has opted for hospice care. What does that really mean?
Where Does Hospice Care Occur?
Most hospice care occurs in the comfort of your own home and relies primarily on the family or personally paid caregivers to provide day-to-day care.
Hospice care can also be provided while you are in a hospital or in a nursing home, but it is important to understand that hospice care does not cover the cost of staying in a nursing home. In some areas of the country, hospice care can also be provided in a dedicated hospice facility, but these types of facilities are few and far between.
What Is Hospice Care?
Hospice care is a type of end-of-life care meant to maximize the comfort and quality of life of a terminal patient who, in a doctor’s opinion, likely has less than six months left to live. Entering hospice means your caregivers are focused on managing your symptoms and that your care is focused on alleviating suffering, rather than curing the illness (which is often incurable).
Hospice care can include physician care; nursing care at home if needed for a few hours a week; a home health aide at home if needed for a few hours a week; social work services; physical, occupational, and speech therapy for a few hours a week if needed to prevent further deterioration; and bereavement services for the patient’s family. Although you most often hear of hospice care for individuals suffering from cancer, other conditions can also trigger hospice care, including kidney failure, recurrent infections, and even dementia. Here are some more things you should know about hospice care:
- Hospice care requires a referral from a physician who agrees that it is appropriate for the patient and certifies that the patient’s life expectancy is six months or less. A hospice patient may live for many years or more in hospice care, but the six months is based on a doctor’s best estimate.
- Several needs are addressed when a patient is in hospice care, including physical, psychological, social, and spiritual needs. Hospice services help manage medication for pain or other conditions, supply emotional support for mental health needs, and therapy for mobility that help alleviate suffering.
- Hospice care has been covered by Medicare since 1983. According to the National Hospice and Palliative Care Organization (NHPCO), 1.72 million eligible Medicare beneficiaries chose hospice care in 2020, representing a 6.8 percent increase from 2019 and the largest recent year-over-year increase in the number of Americans choosing hospice care, both in absolute numbers and as a percentage. This increase was of course largely due to the COVID-19 pandemic; in 2020, more Americans died than in any previous year on record.
- To switch Medicare from “treatment mode” to “hospice mode,” the patient or the patient’s legal representative, such as an agent under a medical power of attorney, must first sign a statement choosing hospice care rather than continuing treatment of the underlying illness.
- If you qualify for hospice care under Medicare, you and your family will work with your hospice team to set up a plan of care that meets your needs. Your hospice benefit covers care for your terminal illness and related conditions. After your hospice benefit starts, you can still get covered services for conditions not related to your terminal illness. Original Medicare will pay for covered services for any health problems that aren’t part of your terminal illness and related conditions. However, you must pay the deductible and coinsurance amounts for all Medicare-covered services you get to treat health problems that aren’t part of your terminal illness and related conditions.
- If you start hospice care on or after October 1, 2020, you can ask your hospice provider for a list of items, services, and drugs that they’ve determined aren’t related to your terminal illness and related conditions. This list must include why they made that determination.
- Hospice care may be covered by employer-provided insurance or private insurance, but these plans are more likely to call it palliative care.
- Hospice care may be misconstrued as a process used to accelerate the worsening of someone’s condition so that they may pass, but that is not the case. Hospice isn’t intended to speed up the dying process — it is focused on addressing physical health, managing symptoms that create suffering, and emotional and spiritual health. Approximately 20 percent of patients who select hospice care are still alive after six months and wind up getting released from hospice care, according to NPR.
- While hospice care and palliative care are often used interchangeably, they’re not exactly the same thing. Both offer compassionate comfort care, but patients in palliative care might have their symptoms treated as well as receiving treatment with the intent of curing their illness. Additionally, while hospice care requires physicians to sign off, palliative care can begin whenever the physician and patient decide and at any stage or illness — and the illness is not required to be terminal.
Keep This in Mind When Considering Hospice Care
Hospice care at home has come under fire in recent years. A 2017 Kaiser Health Care investigation found that the home hospice care that people expected often disappeared when they needed it most. The investigation showed that families across the country have called for help in times of crisis and have been met with delays, no-shows, and unanswered calls. The Washington Post reviewed complaint records at hundreds of hospice companies and found many problems, including: scarcity of care when patients needed sustained attention; incentives by Medicare to provide semiweekly nursing visits rather than continuous bedside nursing care or inpatient care; no data on the quality of hospices being published and available to consumers; and safety concerns due to lack of inspections. The typical hospice provider in the US undergoes a full government inspection only about once every six years!
It is also alarming that hospices in recent years have had rising discharge rates or patients who need to seek treatment elsewhere. Even though the obvious goal of every hospice organization is to provide care for its patients until death, more than one in three patients are released from hospice care while still alive, according to Medicare data. As mentioned, it is normal for hospice to release a small portion of patients before death (15-20 percent), but when the rate of patients leaving hospice care alive is double that level, it can signify either that agencies are driving the patients away with inadequate care or, more likely, enrolling patients in the first place who aren’t really dying — often in order to increase profits.
Nursing Home Hospice Care May Be a Better Option than Home Hospice Care
Because so many hospice providers are failing to provide quality care for patients at end of life, especially when that care happens at home, there are some reasons why hospice care in nursing home might be a better option for some people:
- Hospice care can just as easily be provided in the nursing home as it can at home;
- Nursing homes are staffed with nurses and doctors 24/7 (though there are often significant staffing shortages, especially since the pandemic), sometimes making them a better choice for a loved one’s long-term care needs and end-of-life needs;
- You know that if you’re in a nursing home, you’re not going to be left without care at end of life, even if the hospice provider fails to show up.
Many nursing homes have a contract with one specific hospice provider, so if you have a loved one in a nursing home, you might not have a choice in picking a hospice provider.
Wishing for the Best for Former President Carter
“Jimmy Carter lived an incredible life; we should all be so lucky to live a life that is so full, rich and rewarding,” said Dr. John Brownstein, an epidemiologist and chief innovation officer at Boston Children’s Hospital, and an ABC News contributor. “At the end of the day, it’s about patient-centered decisions and their wishes and in this particular case, I’m sure there’s been a lot of consultation with medical teams, and family.”
Hopefully Carter is having a positive experience and will continue to do so. His niece Leanne Smith says that he is adjusting well to hospice care. She stated enthusiastically he may “have some time left in him!” We wish the best for former president Carter and his family.
Nursing Home Care Is Expensive — Protect Your Family’s Assets!
One major perceived downside of nursing home care is that it is catastrophically expensive, costing between $12,000-$15,000 a month in the DC Metro area. This IS true, unless you work with an experienced Elder Law attorney to protect assets in connection with Medicaid and nursing home care!
Often, the best time to create your long-term care plan is before you actually need long-term care. If you’re over 65, we recommend that you begin your long-term care planning now. But even if you are currently receiving long-term care services for yourself or a loved one, it’s still not too late to plan to protect assets and improve dignity and quality of life. Please call us whenever you are ready to make an appointment for an initial consultation:
Northern Virginia Long-Term Care Planning: 703-691-1888
Fredericksburg, VA Long-Term Care Planning: 540-479-1435
Rockville, MD Long-Term Care Planning: 301-519-8041
Annapolis, MD Long-Term Care Planning: 410-216-0703
Washington, DC Long-Term Care Planning: 202-587-2797
About Evan H Farr, CELA, CAP
