Dad and Hospice Care
A young Dad
Dad and Hospice Care: Navigating the Weirdness
This past Sunday, the great Jon Oliver talked about hospice care on his show Last Week Tonight. Based on my personal experience with hospice care for my dad, I felt his show did an excellent job examining this important topic. However, if I have one complaint or suggestion for Oliver, it would be that they should have mentioned the utter weirdness of the first meeting with a hospice provider. For some reason, no one seems to want to discuss this first meeting.
As a good e-patient advocate, I gave Oliver’s segment on hospice care a signal boost on my social media. Although Oliver did not discuss the "utter weirdness," as I call it, I firmly believe that we need to discuss hospice care in more detail and have a national conversation about this type of care. Responding to one of my social media posts, the great Susannah Fox (you should buy her new book Rebel Health: Buy Rebel Health Now) asked if I had ever written about hospice care, which I hadn’t until now.
My hope for this post is to provide you with a clearer definition of what I mean by "utter weirdness." Due to my dad’s combination of strokes, heart issues, and kidney disease, my younger brother and I had to learn by doing when it came to decisions related to his hospice care. From what I understand, that is common in the world of hospice care. By sharing my story and perspective, I hope to help prepare someone else for this experience so that it may be just "weird" instead of "utterly weird" for them.
Understanding Dad
Often, hospice care is explained to both the public and caregivers on a high level or from a program perspective. Hospice care is usually talked about in terms of care, comfort, and quality of life as it relates to a loved one with a serious illness who is approaching the end of their life. These concepts are designed to appeal to our highest ideals and compassion. After all, the people in need of this type of care are our grandparents or parents who have spent much of their lives caring for and providing for us—the least we can do is make sure their last moments on this earth are as peaceful as the life they provided us.
However, hospice care can sometimes feel more akin to removing liability so the company can help us end our parent’s or grandparent’s life. That might sound harsh and cold, but you'll better understand why I say this in a moment, so bear with me. Since there is a huge difference between hospice care on a program level and hospice care on an individual level, I think it’s important to have a better understanding of who Dad was as a person. After all, my job was to make decisions based on who Dad was, not on who your parents or grandparents are.
Dad was a retired one-star general who flew fighter planes for a living, but he was by no means a typical soldier or even general. Dad was an introverted cowboy at heart with the intelligence of Einstein, who applied military discipline to the phrase "live and let live." I’ll give you a minute or 12 to process that sentence.
Due to the classified nature of his work, I don’t know much about what he did daily. That said, he once told me about discovering that a well-known and highly respected enlisted woman had been a victim of domestic violence by her husband, who was a junior-grade officer at that time. Apparently, this jerk didn’t understand his junior officer status and was bragging on base that he was going to beat his wife up again the next time she was at work. Dad found out about this through the base gossip grapevine, which, since he respected this woman, made him very angry. Not only did Dad publicly fire and dishonorably discharge this man before the first cup of coffee was finished, but he also had the power to ban him from all military bases, which meant the husband wouldn’t be able to pick up his last paycheck or file for what little retirement Dad wasn’t able to take back. In addition to ending this guy’s career and making sure that even if he applied for a restroom cleaner position at Taco Bell they would find out about his domestic violence crimes, Dad also ended the career of the junior officer’s immediate supervisor that same day. He was most definitely proud of his work that day. Protecting the enlisted from stupid officers who thought they were more important than they were was common for Dad during his career as a senior officer from what I understand.
Dad applied his cowboy-at-heart soul with his Einstein intelligence to his idea of what quality of life should mean. According to Dad, living meant enjoying a good bottle of red wine with a 30-day dry-aged ribeye steak, sitting on a rock near a river in the middle of the forest with a good baloney sandwich, while listening to and observing all the wildlife—or spending time with my brother and me. He was okay with the idea of assisted suicide because he believed there was a big difference between living and just existing, and that the patient, along with their family, was the only one justified in determining that difference. Under no circumstances would he allow anyone to shove their religious or moral views onto him or someone he cared about. Protecting a patient’s right to determine the difference between living and existing was paramount for him.
Explaining the Utter Weirdness of Hospice Care
Now that you have an idea of who Dad was as a human, it’s time to discuss my introduction to hospice care.
After his initial hospital stay, Dad was discharged to a local Memory Care living facility. Shortly after moving in, the facility determined that Dad needed to be put on hospice care, so they arranged a meeting for me. On the surface, hospice was presented as compassionate care for Dad while he was transitioning into death; however, the reality was that it was time to admit that he was dying quickly and that we were powerless to stop it.
At this point, Dad was suffering from dementia. Part of his delusions included him eating meals in his head, so he would refuse actual meals. This meant his weight was declining at a rapid rate. My brother and I both knew and understood what this meant: Dad was starving himself to death. Much of the meeting with the hospice company that day consisted of them asking me to sign documents stating that it was me, and only me, authorizing Dad’s death by starvation. The meeting and paperwork were about removing any legal liability the hospice company might have and placing his death on me. In their eyes, I was killing my own dad. Like I said, the meeting was "utterly weird."
The second part of that meeting was authorizing the company to focus only on managing Dad’s symptoms, not on what we often call curative medicine. In simple terms, this meant giving Dad a powerful painkiller, and that’s about it. Maybe if he got the flu, they would give him some NyQuil, but that was it. If his cancer came back or his kidneys got worse, that would mean a higher dose of pain reliever, but that was it. On an intellectual level, I understood and accepted this as valid. Dad was adamant that his money and estate go to my brother and me; wasting money on care that would not raise his quality of life was something he did not want to happen. That said, mentally it was hard to process that we were not going to take Dad to the doctor anymore. Even as adults, Dad would gladly walk through walls or make an MD wet their pants if they refused to treat my brother or me in a manner he deemed appropriate—why weren’t we doing the same for him? Like I said, the meeting was "utterly weird."
From our first visit to the Memory Care facility, my brother and I had a bad feeling about the place, but we were out of options at that point. The hospital wanted to discharge Dad, and we were having trouble finding a facility that would accept him. It turns out our bad feelings were justified; shortly after my meeting with the hospice company, the Memory Care facility almost killed Dad through their negligence. Luckily, my brother and I don’t listen and obey rules very often (joys of having a general as a father), so we called 911 to get him out of that place. Long story short, Dad never returned to that facility, and we ended our agreement with that hospice company shortly afterward. I’ll probably share this story sometime in the future.
After Dad was stabilized in the hospital, we moved him to a local rehabilitation facility that happened to have a bed available. The catch was this facility was the most expensive in the state—their assessment, not mine. By most expensive, I mean about four times more than the Memory Care facility he was in. My brother and I know for sure Dad would have been upset that we were spending so much of our inheritance on this facility, but it ended up being worth it.
Dad was still relatively young for all this, only in his late 70s. Because of this, the facility and eventually the new hospice company became almost protective of my brother and me. They agreed that the Memory Care facility was incompetent and helped protect us from them. Not only that, but they also encouraged and facilitated Dad’s care so we could take some time for ourselves—we needed a chance to process and recover from recent events. The hospice company even offered mental health benefits to my brother and me.
This new hospice company was great. I did have to go through another weird meeting with them, but instead of focusing on liability like before, they focused on options. Yes, Dad was still starving himself to death, but they presented options like feeding tubes or other dietary alternatives we could try to lessen the pain of starvation. The damage was already done, and Dad’s fate was pretty much sealed, but that didn’t mean the company wasn’t willing to try to make the transition less dramatic. They fully understood the difference between living and just existing; unfortunately, for Dad, just existing while he didn’t recognize my brother and me anymore was not quality of life.
On Monday morning, January 8th, 2018, dad finally lost his battle with death. The Hospice company and facility were incredibly kind and respectful of dad that day. They also checked in several times with my brother and I after his passing. What started as “utterly weird” ended with compassion for both my brother and I along with dad.
Final Thoughts
While Dad probably would not want this story to be repeated or shared, he was one of my biggest blogging fans so he might have given his permission this one time (I am not the writer in the family at all, that tittle goes to my brother). I think it’s important for people to know that hospice care does have its "utter weirdness." We’re not talking about a TV show you can change the channel on; we’re talking about the real-life final chapter in your loved one’s life.
This does mean as a culture that we need to change our romantic notion of time equals quality. Sure, the second facility and Hospice company might have bought my brother and I an extra few days with dad because of their excellence. However, dad got no joy or reward for that time. In fact, I’m willing to bet dad would even argue we extended his suffering because he couldn’t spend quality time with us due to the damage his multiple strokes did. According to dad’s logic, his life pretty much ended that previous August when he had his second major stroke which started his eventual march to death.
Now, the last thing dad would have wanted is to watch that Hospice company cover their collective asses so his death would be on me like their paperwork stated. I’m guessing General Brewington would have caused hell that day. Part of capitalism is the liability associated with it. End of life care should be about one’s end of life and that’s it. Death has a 100% success rate with no chance of seeing its record blemished in the future. We can’t innovate, profit motivate, or change this, what we can do is offer the shoulder of health care as comfort and support to make the transition a little easier for all involved.
P.S. While stationed in Texas, Dad had to eject while on a training flight. He wrote a letter to his buddy in Boise describing the experience which became legendary. If you are curious to know what it’s like to eject from an plane at 1,000 feet, please feel free to read Click Here
Dad refueling but I'm not sure where