Hospice Benefits Can Provide Spiritual, Emotional and Financial Relief

Executive Insight: Hospice Benefits Available to Everyone

August 4, 2009

“My whole job is really about doing whatever it takes to make people comfortable, to have a better quality of life,” says social worker Ingrid Revie-Marshall, pictured here with patient Ruth Gordon. “People appreciate that.”

Now that dreaded recession is here, and it's a doozey. Credit is tight, business customers are paying later and later, and new customers are hard to come by. You've had to lay off employees, including some who really added value, and the stress of avoiding more agonizing job cuts is mounting by the day.

You wonder: What could be worse? That is...until you get a devastating phone call. Your mother has less than six months to live.

Now you've got to run a business and provide end-of-life care, and for a brief moment you allow one self-centered thought to cross your mind — what about the personal cost?

At that moment, business considerations may not carry the weight they once did, but there is no need to feel helpless as you gird yourself to help your family. Far too many people initially fail to realize that hospice, or end-of-life care, is available to everyone.

"What often happens is that people don't think they or their loved ones are eligible to receive this benefit, but in fact they are," said Dan Chin, director of public affairs for HospiceCare, Inc. "Or when they call, they learn when they will be [eligible], and that's really important because the number one concern on our patient satisfaction surveys is that they wish they had heard of our services sooner because it was such a huge benefit, spiritually, emotionally, but also financially."

Typical Caregiver
Business executives are among those who assume the role of chief family caregiver. The typical caregiver is a woman, age 46, who is employed full-time. More broadly, about 40% of adults are doing some kind of caregiving for their parents, and almost half are employed full time. In many cases, they aren't getting any younger themselves — the first of 76 million baby boomers started turning 60 in 2006.

For the patient to be eligible for hospice care, a physician must officially certify that the patient has a life-limiting illness and has only six months to live. For anyone that suddenly find themselves caring for a parent in an end-of-life situation, their first move is to work with their primary physician, and work with the physician of the individual you are caring for, "to understand the nature of the condition," said Pam Peterson, vice president of employee and volunteer services for HospiceCare.

HospiceCare provides teams of caregivers for each patient, teams comprised of everything from a grief counselor to a pharmacist. In all, there are about a dozen people, including the attending physician, involved in the care if you don't count the family member and the patient. They complete the required circle of care with the patients directing things from the center.

"Our teams are set up by physical location — a north team, a west team, and a south team — and so depending on where the patient lives, we assign them a specific, targeted team," Peterson said. "Our missions group goes in and they assess the initial needs of the patient, and then they are assigned a team, and then the team assigns the care group."

The typical HospiceCare patient remains in the home, as do 96% of Americans in an end-of-life situation. Members of the care team go out individually to the home based upon the needs of a patient who wants to be at home surrounded by their loved ones in their comfortable surroundings.

There are times in a patient's condition, as they approach the end of life, when their symptoms require a medical-coded environment, so the patient would come to HospiceCare's Fitchburg facility to get their symptoms managed with the goal of returning back home. Such acute-care situations typically last three to five days.

HospiceCare also has patients who come in for five-day stays for respite care, but that's typically to give the caregiver a break.

Medicare and Medicaid take most of the worry out of financial considerations. Hospice care is the most comprehensive Medicare benefit, and the Medicaid hospice benefit mirrors the Medicare program. Most private insurance plans have a hospice benefit, though it is not as comprehensive as Medicare, which pays for everything care related.

Patients who reside there full-time pay $270 a day for that service, which is comparable to other local long-term facilities. Medicare — just as it wouldn't pay someone's rent or mortgage — won't pay for hospice room and board. In their pre-planning, some individuals will purchase long-term care insurance to cover the cost of hospice residency.

As far as the length of the relationship, it varies. "We do have some patients who are with us for five or six years and continue to qualify for the services," Chin said. "However, more than half of our patients are with us for two weeks or less."

Emotional Wear
It's difficult to quantify the emotional impact that caregivers face, but the best advice is to be prepared for a variety of emotions. The emotional stress can cause increased blood pressure, a weakened immune system, and mental health issues like depression.

"An individual will experience a wide range of emotions, even as far as getting depressed because they are facing the fact that a loved one is facing the end of life," Peterson said. "So in addition to dealing with that emotionally, they are also dealing with the emotions of the person they are caretaking for, and facing that. If there are children involved, they are dealing with that.

"So the caretaker tends to take on a lot of that emotional support, and they may not always support themselves emotionally."

One of the benefits of hospice care resources is that they can prevent the health issues, including depression, that might otherwise develop. HospiceCare has grief support groups, for caregivers and their families, which meet at the Fitchburg facility and out in the community.

The key, however, is the constant communication that occurs throughout the caregiving process. "Usually, when people are in those bad emotional states, it's when they don't know what's going on with the care," Chin noted, "and so throughout the care, there is a lot of talking. There is talking with the nurse or social worker, talking about what's going on, helping people to know what's going to happen, answering their spiritual questions, maybe repairing relationships within the family, and getting everyone ready for what's about to happen. That knowledge really settles people."

Employers Invest in Long-Term Care, Too
The Madison business community has been instrumental in the development of HospiceCare. The two buildings on the HospiceCare campus, the Don and Marilyn Anderson and Peter and Ellen Johnson buildings, were contributed by business executives whose families had used hospice. Marilyn Anderson, who passed away last year, received cared there.

Often in a hospice situation, employers must replace caregivers because they get 12 weeks of leave to care for a dying loved one under the Family and Medical Leave Act. In many cases, it's unpaid leave.

For those who remain on the job, employers can do a great deal to alleviate the health impact their employees feel just by knowing the warning signs. They include exhaustion, irritability, and a lack of concentration. Many organizations, as part of their benefits packages, offer employees flex time where they agree to compress the work week if an employee has to travel to see a dying parent.

Businesses also can get involved in the volunteer arena. About 30 Greater Madison businesses take part in HospiceCare's Corporate Ambassador program, including the likes of American Family Insurance, Midwest Family Broadcasting, and Smart Motors.

J.R. Smart, president and CEO of Smart Motors, said his late father, Jim Smart, convinced his fellow Madison-area car dealers to partner with HospiceCare through the annual donation of a car. The car is raffled off in a campaign that has raised more than $500,000 for hospice over the past 10 years.

Ironically, Jim Smart spent the last evening of his life with the organization he admired so much, passing away at HospiceCare's Fitchburg facility in December of 2006. "Our family was around him at the time, and we just admired so much and appreciated the great care and time that the staff gave to us and offered up for his end-of-life experience," said J.R. Smart.

According to Chin, business support for hospice care usually filters down from the top. "Typically, it starts with someone at the executive level who has received care from us who now fully understands the benefit of hospice care and how it can help everyone," Chin said, "and that gets their senior leadership team behind it. Then the [business] organization really gets our organization involved with their employees as an added resource through human resources, or just educational opportunities, or even fun events for the staff."

Volunteers are part of every care team, and HospiceCare has about 950 volunteers in all. They are needed to take someone out for a car ride for ice cream, play cards with the patient, or help with house cleaning or lawn duties. HospiceCare employees, themselves, volunteer by making Thanksgiving and Christmas dinners and then delivering them to patients.

To educate the business community about the impact of care-giving on employees, HospiceCare recently conducted a four-part series for area employers. More than 50 people attended — enough to considering doing it again, Peterson said. Individual employers have talked to HospiceCare about coming in and doing the four-part series at their respective companies, "like a lunch and learn," Peterson said. "We're starting to have some of those conversations."

As published on IBMadison.com: http://www.ibmadison.com/healthcare?id=181