When my mother-in-law Audrey Lienert died peacefully in a Michigan hospice on June 23, 2016, she was dressed in a new lavender nightgown and had freshly manicured nails. Her room was filled with objects that defined her, including a flowered straw hat and a picture of her looking like a young Judy Garland in her World War II Navy uniform. The focus in the final days centered on her quality of life, which meant keeping her comfortable and pain-free.
It was a dramatic change from her stay in a local hospital for a broken hip as a result of a fall following a series of strokes. There, she seemed to be little more than a faceless patient clad in hospital-issue garb whose pain and suffering were being managed poorly.
Since that day, I’ve been trying to come up with the perfect word to describe our family’s journey through hospice care and I’ve finally settled on this: swaddled. It’s a word most often used for wrapping an infant to keep it calm, but the care we all received largely was settling and soothing, with a focus on less emotional trauma for each family member.
Because dying is a business, some of the most painful parts for our family during this time revolved around money, talking about how to pay for Audrey’s care and whether to make funeral arrangements before – not after – she died. These end-of-life discussions seem to be among the most taboo subjects for any family, including ours. But financial discussions can’t be put on hold, even during a deathbed vigil.
The decision to move Audrey from the hospital to an inpatient hospice “home” came just hours after her family met in a hospital corridor and made the decision to forego surgery for her broken hip. The young orthopedic surgeon had argued vehemently for it, saying she would insert a metal rod from hip to knee to fix the fracture. Rehabilitation would take months and there was doubt that Audrey, a 92-year-old widow, would even survive the operation or understand a physical therapist’s directions afterwards. She had been in a memory-loss unit for dementia for years and had trouble with simple tasks, such as grooming and using the toilet.
Long before the dementia, she had requested, verbally and in a written note, that we take no “extraordinary measures” to keep her alive. After the fall, she had refused all food in the hospital, even a tiny crumb from a blueberry muffin. She even fought against a priest who gave her the last rites and tried in vain to get her to take Communion.
Once the decision against surgery was made, the discussions began with the hospice about money. A social worker walked us through the financial part of the decision and Medicare eligibility requirements. The Medicare rules are complicated. We were told Audrey would qualify for coverage if she had only exempt assets, plus $2,000 or less in cash. The social worker sat with us in a conference room and asked us a long list of questions, such as whether Audrey had any lottery winnings, cars or a prepaid burial plot.
We were told the family would have to pay for Audrey’s “room and board,” something that was not covered by government benefits. An upfront one-week payment was required at the time of her admission to inpatient hospice, with the daily rate amounting to around $275, about the same as a stay in a boutique hotel. It was clear that the cost of her care could wipe out some of her children’s retirement savings if she survived for weeks or months. Her limited income, including veteran’s benefits, would not pay for her entire end-of-life expenses here. Most of her assets had been wiped out by the years spent in a private nursing home.
No one could predict how long Audrey would live or what the ultimate cost of her care would be. The surgeon and the social worker said some patients in Audrey’s condition live six months or longer. According to the most recent statistics from the National Hospice and Palliative Care Organization, half of hospice patients received in-patient care for fewer than 17 days in 2014.
Those were the difficult dollars-and-cents discussions. But there was lots of talk about what would honor her the most and preserve her dignity. There is no way to put a price on that. We talked about the woman she was before her illness, one who led Cub Scout troops, worked at the local newspaper and made fantastic Christmas cookies and award-winning pickles. The choice seemed obvious, especially since the level of care she needed was greater than any of us could provide at home, even with the help of home hospice services.
The social worker at the hospice home promised to help us with the paperwork to recover any costs possible from Medicaid/Medicare and other insurance and urged us to contact the funeral home immediately to discuss arrangements and costs in the event of Audrey’s death. That seemed ghoulish to some members of the extended family, but looking back, it was one of the best pieces of advice we received. Two of us spent 90 minutes on the phone with Audrey’s hometown funeral home, finalizing everything from the Catholic service to the playing of taps to honor her military service. Scrambling to make that call after her death and deal with the details would have been unthinkable.
The hospice itself was a surprisingly cheerful 20-room place, with a gazebo and a playground. There were two cozy “family” rooms with wi-fi and coffeemakers. Local farmers hold a “green market” in the lobby once a week in the summer to sell honey, candles and produce, helping to create a feeling of community and normal life. More and more hospices like this one are allowing pet visits and spa treatments, including massage therapy. One hospice expert told me later that if a patient practiced Pilates all her life, there’s no reason why that shouldn’t be part of her final days, even in a rudimentary form. And a beloved dog or cat could cuddle on the patient’s bed for an afternoon.
The intensive-care transport, an ambulance ride of a few blocks from the hospital to the hospice for Audrey, cost around $800. Once the nurses and doctors made Audrey comfortable in her room, the discussions turned to medical and spiritual matters. We were introduced to the phrase “terminal sedation,” basically a cocktail of medications that induce sleep until death occurs. A chaplain asked what the family needed and said he was there to help. And the waiting began.
Because I had writing deadlines, I set up my “office” one morning just down the hall from her room and was working on a story as my husband sat with his mother. A social worker making her rounds stopped by for a few minutes and talked to me briefly about how it’s difficult to handle any death, even one that you know is imminent. Every death brings up memories of other losses, as well, she said. As a longtime reporter who had spent time covering tragedies, I figured I was tough enough to get through this without a lot of help. I was wrong.
In the minutes that followed, two people in Audrey’s section of the hospice died, including a young man suffering from cancer. The keening and weeping of the families unnerved me. I ran out of the hospice. My husband left his mother’s side to ask me what was wrong. “I have to go home,” I said. My sister-in-law Jean was just arriving and we met in the parking lot. She would stay with her mother and told me to get some rest. A half an hour later, Audrey died, with Jean holding her hand. She had been a hospice patient for six days.
Within minutes, the hospice staff notified the funeral home and turned their attention to the family. We all gathered around Audrey’s bed and a nurse brought in a cart laden with cookies and lemonade. We were encouraged to stay and talk. There was no rush to leave. If anyone needed to talk to the chaplain or social worker, they were available. In the ensuing months, we were contacted on occasion by the hospice and encouraged to participate in support groups for “living with grief” and candlelight memorial services. We learned that the grieving process typically takes about two years and that friends and family help you to climb out of the dark trough and back to wholeness. The social worker helped us to tie up the financial loose ends.
Looking back, in-patient hospice care for Audrey was the best decision for our family. Now, we now have realistic expectations about care at the end of life and how important it is to talk about advance planning. And we have comforting memories about where and how Audrey spent her last hours.