A baby coming into the world needs a lot of care, and families prepare for that wailing, cooing bundle of life with cribs, and changing tables and advice from mothers-in-law.
When baby formula was in short supply, family members branched out to scour retail shelves for the necessities.
For those leaving this world, care is also needed, according to Victoria Palenske, branch director for Elara Caring, which offers home health and hospice services in the Toledo area. Such souls may need oxygen, pain medications, and spiritual counseling, as well as a hand to hold.
“People deserve a lot of care at the beginning of life, but they also deserve care at the end of their life,” said Ms. Palenske, who began her career as a registered nurse whose focus turned to hospice services. “It is a calling.”
Enrolling in a hospice program is usually undertaken when a patient is expecting to live for no more than six months. However, death does not always happen on an unfluctuating schedule for anyone, including the 1.71 million Medicare beneficiaries enrolled in hospice care in 2021.
“The important part is recognizing when it is time to give hospice a call,” said Ms. Palenske, who noted that many wait too long without realizing that the qualifying Medicare benefit can be activated earlier than many think.
Twenty-five percent of hospice patients die within five days, according to a December, 2023, report by the National Hospice and Palliative Care Organization. Ten percent of hospice patients were enrolled for more than 264 days. One notable exception is former President Jimmy Carter who remains in hospice since his enrollment in January of 2023. In contrast, his wife, Rosalynn Carter entered end-of-life care on Nov. 17, 2023, and died on Nov. 19, 2023.
Ms. Palenske said hospice may be considered when some particular patterns emerge. There might be multiple hospitalizations, recurring wounds, more frequent falls, constant infections, and needing more help in getting around the house or maneuvering around such obstacles as a coffee table.
A patient, or the family, or a doctor can initiate the qualifying evaluation.
A new focus
Hospice services provide all medications, equipment, and staffing for free. The caveat is that the patient is no longer seeking life-prolonging treatment. At this point, medications may be streamlined with a focus on managing pain to make those last days as agreeable as possible.
Patients are first certified for 90 days, can be recertified for another 90 days, and then every 60 days. Each certification must document a decline for a patient to stay in the program.
Declines can include a loss of weight, reduction in the mid-arm circumference, an inability to walk, or even no longer wearing a wedding ring because it keeps falling off, according to Stephanie Wladkowski, an associate professor of social work at Bowling Green State University.
Hospice patients can find themselves receiving services in their private residence, a nursing home, or an assisted living facility. In 2021, there were 5,358 Medicare-certified hospices in operation, which represents an increase of 300 hospices from 2020.
“Many choose home care for familiarity and comfort,” said Craig Schrolucke, senior vice president of Mission Engagement & Brand Care for Ohio’s Hospice. “If symptoms can’t be controlled at home, facility care may be necessary. Patients requiring round-the-clock monitoring may need care in a Hospice House or facility.”
One study published in 2014 as part of the National Library of Medicine, noted that the majority of Americans, about 70 percent, would prefer to die at home. The same number – if given a 25 percent chance of survival – would rather receive care that would relieve their pain and shorten their life rather than a plan that would extend their life with more pain and discomfort.
“Hospice provides a lot,” said Ms. Palenske, listing that staffing may include a nurse, a home health care aid, a chaplain or other spiritual adviser, a social worker, and a physician.
And equipment is part of the package, too. Patients might need a bed, a walker, oxygen, and a commode. Medications are provided for needed pain and symptom management.
As Medicare covers all these services, Ms. Palenske said the benefits, which patients have contributed to financially all their working lives, are focused on end-of-life needs. Money is not spent on aggressive treatments that may be no longer effective.
“It is using the right benefit of Medicare at the right time,” said Ms. Palenske.
As an aging population is accessing more end-of-life services, Medicare has seen its expenditures in that category increase from $20.5 billion in 2019 to $25 billion in 2023, according to the Hospice Monitoring Report published in April of 2024 by Centers for Medicare & Medicaid Services.
A live discharge
Death often takes its own good time, even when it is anticipated.
There can be awkward bends in the process: When a patient plateaus and doesn't die, then a hospice agency may implement a live discharge. This can happen when a patient stabilizes, meaning their symptoms are managed.
“We believe their condition has become chronic rather than terminal,” Ms. Palenske said.
In other instances, the patient may see real improvement.
Ms. Palenske said hospice will work to link the patient with other services, but there must be an understanding that no other organization offers benefits 24 hours per day, seven days a week.
“We also let them know that at any point in the future when they have a change, give us a call and we will come back,” she said.
While family members may rejoice that they will have more time with their loved one, expectations that may have been difficult to accept are derailed. Ms. Wladkowski says the grieving process may be interrupted, and families left juggling multiple agencies to care for their patient. Other reasons for a live discharge may be a move from one area to another, or if services can no longer be safely delivered to an agitated patient. About 17.4 percent of hospice patients are discharged alive each year.
“For patients whose condition is improving but still need support managing a serious illness, palliative care might be an option, as it can be provided alongside curative treatment,” Mr. Schrolucke said.
Medicare and Medicaid do cover physician and advanced practice nursing visits associated with palliative care, but there are likely to be co-pays.
Every path to death varies individually. For Ms. Palenske, that introduction came when her grandmother signed onto hospice services at the end of her life. Ms. Palenske said it has been her privilege to be a part of so many people's life's end.
"It is one of the most rewarding things that I have ever done in my life," said Ms. Palenske, underscoring the fulfillment she has felt by being there for the last fragile, precious moments of her patients and their family. "It is good to know you have made an impact and allowed someone to have a peaceful journey.”
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