Living Better with Advanced Illness: Crafting a Specialized Plan of Care

A family vacation at the beach was the turning point for Cynthia King.

Hoping for a week of downtime, she instead gained nearly 40 pounds during the seven-day period. The fluid accumulation brought on by her congestive heart failure (CHF) not only caused the weight gain but also pressed on her lungs, restricting her breathing until it became distressing.

When her family contacted Catawba Regional Hospice through Dr. Sanjeev Shah at the Sanger Heart & Vascular Institute, their hope for Cynthia was trifold: to find immediate relief, to better manage her disease, and to rediscover her quality of life.

The initial step was to provide her with IV Lasix to remove the fluid and make her breathing comfortable. Once that was accomplished, her care team began to teach and monitor, involving Cynthia and her family every step of the way.

CRH began attending to Cynthia at her Lincolnton home in January of 2015. Prior to that, she had been admitted to the hospital eight times in the previous year. Practically every occasion began with a trip to the ER and resulted in an admission for monitoring. Two of those eight times, she remained in the hospital for two weeks.

Based on her nurse, Madessa Willey's, urgings, Cynthia currently keeps detailed records of her day-to-day health, charting her weight, blood sugar, heart rate, blood pressure, and swelling to see if anything indicates reason for concern.

Catawba Regional Hospice nurse Madessa Willey examines Cynthia King

Catawba Regional Hospice nurse Madessa Willey examines Cynthia King

She keeps her legs elevated whenever possible, sweetens with Splenda, limits her intake of bananas, and has given up salt in favor of onion powder and black pepper. All of these alternatives are for a good cause, however, since Cynthia loves to cook for her family. In fact, she's quite proud of making a sugar-free banana pudding that folks rave about and that even her artificial sweetener-averse son, Darrell, can't praise enough.

The upshot of Cynthia's new regimen is that she hasn't needed to go to the ER in the three months since CRH began caring for her. Her weight and fluids are managed, her vitals are controlled, dialysis is not being considered, her outlook has brightened, her quality of life is much improved, and her wheelchair mobility has significantly increased.

Before participating in CRH's specialized program for cardiac disease, Cynthia couldn't get out and about without concentrated effort. When asked if she's now able to do more, she grins shyly and says there were only a few days during the past week that she didn't leave the house. Her newfound freedom allows her to visit friends, to get back to church, and to feel involved again.

Her family is also much more at ease. Instead of being tethered to her house, they're able to leave her alone on occasion without worrying. They're comfortable with the stability she's achieved, and she's delighted not to have them hovering over her and attending to her nonstop.

(l-r) Darrell King, nurse Madessa Willey, and Catawba Regional Hospice patient Cynthia King

(l-r) Darrell King, nurse Madessa Willey, and Catawba Regional Hospice patient Cynthia King

Part of CRH's goal in managing patient symptoms is to encourage folks to think ahead to the care they'd like to have as their disease progresses. By including advance care planning in the conversation, the clinical team gets people talking about what's best for themselves and for their families, preferably at a time when the urgency to act is low and the emotional pressure is mild.

For Cynthia - whose history includes three strokes, five heart attacks, multiple eye surgeries, oxygen use, and a bout with MRSA - it's a worthwhile dialogue to have with her loved ones, as well as her care team. She's willing to spell out her wishes to ensure that everyone involved has a better sense of what she ultimately wants, but with one caveat: "If Jesus comes for me and you bring me back, I'll whip you!" she tells Madessa, her eyes bright with laughter but only half joking.

While CRH has helped Cynthia achieve a heightened state of physical ease, it's perhaps the opportunity to regain control of her emotional life that defines her present-day calmness. In fact, she's firmly philosophical about her condition and understands - as her doctor phrases it - "that you can dye your hair black, but that doesn't change the fact that it's still grey."

If nothing else, she's practical-minded and focused, seeking ways around any limitations that exist. According to Cynthia, when you can't go to church, you can still pray for others. When you can't see to write, you can still sign your name beautifully as long as your hand is positioned at the right place on the page. And when your health seems as if it might be irretrievable, you can still find a care team to offer something better - with just a little faith.