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t m c » p u l s e | j u ly 2 0 1 7 22 would have a minimal effect on hospice care. Both the Senate and House bills, though, propose deep cuts to Medicaid. Limiting the expansion of Medicaid could reduce the number of Medicaid recipients, said James Faucett, president and CEO of Houston Hospice. The National Association for Home Health and Hospice voiced a similar concern about per-capita caps and the elimination of an important Medicaid option—the Community First Choice benefit—which encourages states to shift spending to cost-effective home care. Perhaps the biggest threat to hospice care is increasing regulatory demands by the Centers for Medicare & Medicaid Services, said Jon Radulovic, vice president of communications for NHPCO. Increasingly, hospices must allocate already mini- mal resources to additional administrative efforts. "Hospices generally have a relatively tight profit margin, so their operational costs are usually just covered," Radulovic explained. "You don't want to have to take dollars away from patient care for regulatory compliance." — VI — A faded pair of black track pants sagged around Alan's thinning waist. It was mid-morning on April 28, a Friday, and Alan was wearing his new medi- cal alert necklace. He was un-showered; his skin sunken, his shoulders wilted with exhaustion. Pal paced the room, growling at his Kong dog toy and nudging Terrie to play. She picked it up once or twice while she and Alan discussed his will and applications for an in-home caregiver she'd submitted through the VA and the Department of Aging and Disability Services. She said she was hopeful he would be able to stay in his apartment when the time came. "Soon," Alan said. "You think it's soon?" "I think so." "Are you having more confusion?" "Yeah, a little bit." Terrie said his oxygen would help. When it drops too low, she explained, the brain can't func- tion at capacity. "I've been on oxygen all morning," Alan said quietly. "Maybe I should go use it now." When he returned to the living area, he said he was ready to call Ann to come pick up Pal. "It's too much," he said. "I don't want to fight it; I don't want to fight it anymore. My son fought it for six years." He found his cell phone and started typing on the keypad, then stopped abruptly. "I'm losing it," he said, under his breath. "I'm really losing it." "Are you OK?" Terrie asked. "Yeah." "Do you think you need to get some rest?" "Getting close to it." Alan tried typing Ann's number again. "I keep forgetting what I'm doing." "You're getting sleepy." "Yeah." Terrie helped Alan leave a voice mail, then led him into the bedroom where he settled in on his right side, facing the wall. She checked his oxygen and noticed that the machine was bone dry. Without water, nothing had been flowing through the tubes—there was no telling how long he'd been without oxygen. Terrie refilled the machine and hooked up her patient. Alan closed his eyes. A few hours later, Ann arrived and Alan got up to say goodbye to his best friend. He gave Ann an old sweatshirt with his scent on it and told Pal that she'd be his new mistress now. Alan was stoic. Although he was broken inside, he did not cry. — VII — Brad moved in to Alan's living room with a large air mattress and his Maltese, Casey. By Wednesday, May 10, Alan was sleeping for the better part of the day, always on his right side, always under a red sleeping bag. His body had grown skeletal, his mouth slack-jawed. Each breath was accompanied by a constant gurgling rattle, a final stage of the body shutting down. Karen taught Brad his father's medication rou- tine and the basics of changing diapers and urine drainage bags. In the absence of a hired caregiver, Brad had stepped in to honor his father's wish to stay put. Through hospice care and family support, Alan would be at peace in his final days. Over the weekend, he had experienced a surge, a common phase in the dying process during which a person undergoes a wave of clarity, hours or days before death. Terrie described it as a final gift to the family. Brad took advantage by setting up a Clint Eastwood movie marathon and buying ice cream. By the end of the day on Sunday, though, Alan had grown lethargic again. "I feel like I'm running around like a chicken with my head cut off," Brad told Terrie after return- ing from a quick trip to Wal-Mart. He unpacked bags of V8 juice, butterscotch pudding and sippy cups like the kind he used to give Matthew. (continued) Alan said he was picturing Gale, who was cur- rently under hospice care herself in California. His biggest fear, he said, was that he would end up like his sister: over-drugged, slurry and incoherent. "I think it's safe to say we really do a very progressive end-of-life medication routine," Terrie said. "Our purpose, our goal for you, is comfort. OK? That doesn't mean you have to be gaga." "Actually, I just want to die," Alan said, looking at her. "I know you do. We've talked about that. But you're not suicidal." "No." "You're just tired of the fight." — V — By mid-April, showering had become difficult for Alan, sometimes insurmountably so. The worst part, he said, was putting water on his head and trying to breathe at the same time. Father Raphael, the chaplain on his hospice care team, paid him a visit. Alan wasn't Catholic, or anything for that matter, but he valued their conversations. "I believe that we're all connected," Alan said. "We're all a part of everything. Is there a God? Yeah. We are God." Alan's hands shook as he squirted morphine under his tongue. He was taking a dose once an hour to ease his breathing and the pain knotted throughout his back. There was also methadone, gabapentin for peripheral neuropathy, albuterol for breathing, Senna and Colace for constipation caused by the pain medication, lorazepam for anxiety. He was sleeping more each day and had all but ceased activity outside his apartment. Occasionally, he managed to take Pal outside, letting him roam as far as the leash would take him. Alan and Brad talked in earnest. Alan did not want to be a burden in Brad's home. He did not want to live under the same roof as Carol. He did not want his grandson to know he was spending all day in a bedroom, dying. So he was staying in Apartment 1513. The vast majority of hospice patients—nearly 60 percent—are treated in the place they call "home," which could be a private residence, a nursing home or a residential facility. Alan fit the hospice profile in other ways, too. Close to 85 percent of hospice patients are age 65 or older, and the same percentage receive services through Medicare, which started covering hospice programs in 1982. Hospice was added as an optional benefit under Medicaid in 1986, but in recent years several states have proposed cutting optional Medicaid benefits, according to the National Hospice and Palliative Care Organization (NHPCO). Although health care in America is poised for change under the Trump administration, the recent iteration of the American Health Care Act, released by Senate Republicans on June 22, " I believe that we're all connected. We're all a part of everything. Is there a God? Yeah. We are God. " — ALAN DICKSON Houston Hospice patient