Meet one of the most inspiring people I’ve ever met. I’ll call her Daphne for the purposes of identity protection. Daphne is in her late 50s, she’s been married for 30 years, has 3 children, and 2 grandchildren. Daphne is tough as nails. I first met her to go through the health care planning (HCP) process with her and her family. She had terrible heart failure and had already survived two cancers. She hunts wild boar and she directs historical battle reenactments. Big ones! Thousands of people participate. And she leads them. Not by speaking gently but by roaring at them. When she roars people listen. I listened. I heard a story of someone who’s already overcome the odds twice with serious cancers and wasn’t going to let heart failure get in her way.
Daphne was being considered for a heart pump (LVAD) that would be surgically implanted into her chest. While she and her family were getting outstanding care from the heart failure team there were many things that were left unsaid at those office visits and hospitalizations. As Daphne was strong willed and opinionated, so were the others in her family. Not everyone was clear on what Daphne would want should there be complications. Not everyone had heard the information about the benefits and burdens of treatment from the doctors because two of her children lived several hours away and couldn’t come to her appointments while holding down a job and taking care of their young kids. Importantly not all the words used at the appointments were ones that everyone understood. What’s a thrombus? What’s a chronic driveline infection? What do they mean when they say she’s failed some therapies? These were the types of issues that lead them to HCP.
We had a number of HCP sessions to get everyone on the same page. Many of these took place outside normal business hours so everyone could join using technology. At the end conflicts were unwoven, stresses relieved, and while everyone didn’t agree with Daphne’s treatment preferences for future care they all supported her.
Daphne went through with the surgery and came out with a wonderfully working LVAD. She was out of the hospital in no time. In wasn’t long until she was back on the battlefield directing muskets and marching. Everyone was hoping that what they were witnessing was her new normal.
After a few months of what she describes as “good living” she had a stroke. She was hospitalized. She had another stroke. After being seen by neurologists and her heart failure team it appeared that she had multiple strokes. This is a known complication of the LVAD. They can be devastating and Daphne’s fit into that category. She was barely able to communicate and when she was it was nonsensical. It appeared the end was near. We had an urgent HCP session with the family, including those out of state, and everyone agreed to follow Daphne’s wishes she had previously expressed. If she had an outcome where she couldn’t communicate with those she loved she wanted to enroll into hospice care.
Hospice took excellent care of her at home. And it was at home that Daphne showed everyone who loved her that she was able to, once again, beat incredible odds. Slowly, over months, she recovered. Hospice was asked to step away. Rehab services came to the house where everyone was amazed to see her feed herself again and use a wheelchair on her own. It was during our second to last HCP session that Daphne said her goal was to walk the entire course of this year’s American Heart Association’s Heart Walk. Her family and her clinical team were on the sidelines cheering her on as she crossed the finish line. Daphne is a hero to all of us that know her.
Her story is a highly unusual one, and not just in the sense of having almost no long-term problems from the stoke. Daphne, her loved ones, and all her doctors and healthcare professionals benefited from her undergoing HCP. Studies show that heart failure patients in particular have little-to-no access to HCP despite the majority of their cardiologists wanting them to have it. And even the best physicians in the world use too many big words, spend more time talking then listening, and don’t have the time to go over the information they provide multiple times. With HCP, patients receive better care, are more likely to get the care they want, can live longer, and have much less family conflict or disagreements. At Iris Plans we provide the best HCP available. We do so in conjunction with your doctors and the hospital you use. The earlier someone with heart failure goes through HCP, the better the results. Like Daphne and her family, start HCP before problems or complications arise.