Hollywood tells us that love stories are about the beginning -- catching an eye across a crowded room, a first date, a dramatic proposal. We see little, if anything, after the fairytale wedding. But for many, the greatest testament to love is not the first moments, but the last.
And, for some of us, navigating the last moments means asking for help.
Yet people in Appalachia can be suspicious of end-of-life care, especially hospice care. There’s a perception that when hospice comes in, it’s only for the last hours before someone dies, rather than easing the last weeks or months of life. That was certainly what Sheila Brown thought.
Sheila and Waitman Brown were married for 50 years. They were high school sweethearts and raised two children in rural Wyoming County -- in southern West Virginia.
“He was a coal miner,” said Sheila. “We got married in ‘67, I graduated high school in ‘68. And then I got pregnant with my son in the latter part of ‘68 and he was shipped to Vietnam.”
There, Waitman was exposed to Agent Orange. Combined with later years in the coal mines, Waitman struggled with his health. He had three bouts of cancer. The last time he was diagnosed with stage four lung cancer.
“I would walk him down the stairs and put him in the shower and I’d have to get in the shower with him and bathe him and stuff,” she said. “I’d get him out and sit him on the commode and by the time I’d get him dried off I was worn plum out. I stayed real tired all the time and they said ‘this is what hospice is for -- hospice will help you with all this stuff.’”
At Sheila’s urging, Waitman decided to try treatment, which the doctors told them would not cure the cancer, only prolong his life. He couldn’t keep it up. So someone at the hospital recommended hospice.
Sheila was pretty resistant at first. She said she was scared because she had always been told that when hospice comes, you only have a few days left.
And hospice doesn’t always have the best reputation. A 2017 joint investigation between Time Magazine and Kaiser Health News found over 3,000 complaints filed over a five-year period against the nation’s 4,000 hospice organizations. The complaints referenced everything from hospice workers failing to show up to unreturned phone calls and broken hospital beds.
Medicare now has a link on its website from which you can compare hospice agencies in your area. Most, like the one that served the Browns, are non-profits and rate well. And most people, like the Browns, have a good experience. In fact, hospice worked with their family for almost a year.
“It helped my husband [with] what time he had left when he felt good,” said Sheila.
Landon Blankenship is the chief nursing officer of Hospice of Southern West Virginia,the agency that worked with Sheila and Waitman. He said from his perspective, the point of hospice is exactly the benefit that Sheila described.
“Our goal is to make the last days, the best days. A lot of people think hospice is for the dying. We tend to think hospice is for the living.”
Blankenship said when hospice staffers come in, they aim to help the patient live their last days as comfortably as possible: with no pain; able to breathe freely; able to accomplish that last bucket list item -- attend their daughter’s wedding, go to the family reunion, make one more birthday. Yet in southern West Virginia, he said there are a couple of hurdles for getting people to use hospice in the first place.
“Well, we [West Virginians] take care of our own,” said Blankenship. “Getting in the home is the problem. Once you’re in, you’re treated like family, so it’s just breaking through that barrier there to actually have some to accept you into their home.”
He thinks the hurdles start with late referrals from medical providers
“A lot of physicians are hesitant to make referrals earlier on,” he said. “Our rule of thumb is if you have a patient and you think that there’s a possibility that they can pass in the next year, that’s probably an appropriate time to make a hospice referral.”
Yet doctors are taught to treat. They often try and “save” the patient no matter the cost, which Blankenship thinks is the wrong tactic.
“I don’t think there’s a lot of framing of goals,” he said. “Everybody wants hope. Everybody wants that next best treatment. Everybody thinks it’s in that next chemo, it’s in that next pill, but it’s in that next surgery. The unfortunate thing is sometimes there is no hope in another treatment. So we need to get to the point in my opinion that we do a better job in the medical community of reframing our goals.”
Which may mean teaching medical providers to sit down with patients and their families and to truly talk through what their goals are for the next phase. For Waitman Brown, that was getting to his 71st birthday, which he did. Sheila threw him a huge party and the community, including one of the hospice nurses on her day off, turned out to celebrate his life.
“It was snowing that day,” said Sheila. “But my house was packed out full. I mean we had him a big birthday party and he was tickled to death, but he didn’t have hardly enough oxygen to blow his candles out.”
Two months later, he was moved to the Bowers Hospice House in Beckley, where he could receive even more attentive care. He passed away shortly thereafter.
Blankenship continues to check on Sheila periodically. She’s got health problems of her own and her son moved her from Wyoming County to just outside Charleston to be closer to him and her doctors. But she said when her time comes, she won’t have any problem with using hospice herself.
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from Marshall Health and Charleston Area Medical Center.