Back in Vienna, I ask Hlavin how hospice has benefited him. He considers the question at length.
Not long after graduating from Johns Hopkins at age 19 with an engineering degree, Hlavin designed, built, and managed Fairfax County’s public schools. The 12th-largest school district in the country, Fairfax has myriad challenges, and Hlavin’s designs in ameliorating these were so effective and economical that the State Department hired him immediately after his retirement and sent him to 75 countries to build and monitor American schools abroad.
Hospice for Seniors
In recent years, the dramatic growth of the assisted-living industry, coupled with an older average entry age of 85 years, has fostered stronger relationships with local hospice providers. The partnerships make sense: Andrew Carle, founding director of the Senior Housing Administration program at George Mason University, says about one-third of assisted-living residents die in their communities. What's sometimes unclear, though, is how hospices and these facilities function together.
The preferred-provider relationship, in which an assisted-living facility recommends a hospice that it feels works well with its residents, is most prevalent. There are also inpatient hospice-care units—typically wings reserved for hospice patients. According to Carle, this type of arrangement is rarer because it requires a special license; it's generally available only in continuing-care retirement communities that offer nursing services as well as assisted living.
Regardless of how the relationship works, Carle says there's never any shared ownership or financial partnership between the two: "Families and residents living in assisted-living communities are allowed to utilize any hospice they want and should be ethically informed of such."
It's important to do your own research and make sure the hospice you choose offers the services your family member needs. Here are some questions to ask:
- What services are you able to provide within the community?
- Are there any services you can't provide? If so, what are they?
- How much experience do you have working with assisted living? For example, how many communities and patients have you worked with? For how many years?
- How will I be billed? How much is covered by Medicaid and/or Medicare?
- How often do your nurses visit?
- Can I expect volunteer support? If so, will volunteers work with the patient, family members, or both?
- What's your after-hours staffing policy?
- Do you offer spiritual care for the patient?
- Do you offer bereavement support for the family?
But about six years ago, Hlavin’s health began to deteriorate. Because corticobasal degeneration is so rare, it took doctors years to diagnose. Hlavin struggles to form the words to answer my question about the care he has received.
“When the words are taken away, who are you?” Martha says at last. “How do you live your life? The ability to communicate gone, independence gone, but the life and love still there. Who are you behind all this?”
Hlavin has been in hospice for nearly two years, much longer than expected, as his unusual disease has an unpredictable progression. “He’s on a lot of pain meds today,” his wife says.
He suddenly looks me straight in the eye. “It is a beautiful process because I have a chance to correct all the mistakes,” he says.
And then he’s gone again.
• • •
Though Western medicine can trace its roots back to ancient Greece, modern hospice care in America is little more than 40 years old. Most of its guiding principles were developed in the 1950s and ’60s by Cicely Sanders, a British nurse who brought them to the States in a series of lectures, and by the Swiss-born, Chicago-based psychiatrist Elisabeth Kübler-Ross, who in 1969 published On Death and Dying, identifying the stages of grief and advocating treatment that focused on the patient, not the disease.
Internist Matthew Kestenbaum, Capital Caring’s chief of medical staff, was ready to leave medicine altogether soon after finishing med school because he was frustrated by, as he describes it, the field’s “piecemeal, fractionized, and impersonal” flavor. Then he met a physician working in hospice. Now he could never imagine doing anything else.
Says Kestenbaum: “Someone’s in pain—and then they’re not. Someone’s scared—and then they feel at ease. What more is there?”
Which raises an interesting question: Is hospice’s true value in patient comfort and economic benefits or in addressing a deep longing for connection and reassurance? Perhaps nowhere in the country is the need for simple comforts as strong as in Washington, a city of unending conflict and striving and enormous responsibilities.
Or maybe hospice is about something even simpler.
“Dignity,” says Capital Caring CEO Malene Davis.
“Dignity,” says Martha Hlavin.
“Dignity,” says Dr. Kestenbaum. “If patients can keep that . . . .”
Or as nurse Linda Cooper puts it: “The best part of this work is when we can help people live until the end. It’s a road we all have to walk someday.”
• • •
The next time I visit the Hlavins, Al is bedridden and noncommunicative. His health has rapidly declined, precipitated by a fall at 3 in the morning. Family members have arrived from all across the country, including his five other children as well as grandchildren, neighbors, and church members. They go into the bedroom. They leave the bedroom. They disagree with aspects of his care or agree with them. But he is home.
In an alcove of the kitchen that Hlavin long ago designed, his wife reflects on all of this.
“What I see,” she says, “is how little we truly know of what’s inside each other. Is he in pain? Yes. Is it sharp and stabbing or dull and throbbing? Is he nourished by his faith or does he feel betrayed? Nobody knows.”
Linda Cooper emerges from the bedroom and stops to give Martha a hug. “Sometimes we can’t help as much as we’d like,” the nurse says.
A week earlier, when Al could still speak, Martha had asked him, “Do you want to talk about it?”
“What’s going to happen.”
“No,” he said.
Martha felt frustrated because she wanted to share in this last step, but she realized that the frustration was her issue, not his, and didn’t push the point. In the end, hospice can bring dignity, comfort, and quality of life but not always closure.
Says Martha: “It’s humbling.”
• • •
On July 3, 2011, Al Hlavin passed away peacefully at home surrounded by his family.
Freelance writer Josh Swiller can be reached at firstname.lastname@example.org.
This article appears in the November 2012 issue of The Washingtonian.