Cancer and the Monolith, Addendum: Navigating Cancer and End of Life in the US
My mother was diagnosed with stage four cancer at the beginning of 2019. She’s lived at least 1.5 years at the time of this writing. Here are some of the most important practical lessons I’ve learned from the experience.
Recommendations for the Sick and their Caretakers
1. You have to project manage your own health program. The American healthcare system is a monolith and a labyrinth. Even if you have the resources to afford and wherewithal to access world class treatment, it’s entirely on you to figure out what to do next and who needs to do it. You can’t rely on any person in a hospital to do the work for you — they’re too busy.
2. If you have cancer, go to MD Anderson in Houston, Texas immediately. The difference between #10 and #1 in the US is the difference between the pros and the minor leagues, from an organizational and administrative standpoint. The doctor’s everywhere I’ve been are world class and heroes. Some are more distracted than others due to the organizational burden thrust on them by weak administrations (though some can also be disorganized ;) )
3. Get the family member’s finances straight immediately. If you don’t, their assets go to Probate and I’ve been unanimously told they’re a f****** b**** and take a long time to deal with through the courts. This means naming yourself jointly as a beneficiary on bank accounts, retirement accounts, investment accounts, and real estate. Name backup beneficiaries just in case something happens to you. You’re even able to name spouses and kids that don’t yet exist. Put a Will together asap. Rocketlawyer.com is fine — just get the job done.
4. Advanced directives. Make sure someone has Medical Power of Attorney to make decisions for the person if they become too sick to make them themselves. You don’t want the people you love in a semi-comatose purgatory at the hospital, God forbid, they enter that state.
5. Collect your loved one’s stories. Here’s the slickest and easiest way to do that: https://www.storyworth.com/friend/charles65. It sends email prompts to your loved ones to write their stories and turns them into a book at the end of the year.
6. Collect “eulogies” to give to your loved one before they pass. Too often when a person dies, their survivors’ biggest regrets go along the lines of, “I wish I’d told them how much they meant to me.” For us, this was a video collage of my mom’s closest family and friends telling the story of their first or favorite memory of her. Thank you Brandon Na and Nancy Huang for helping put the whole thing together. My mom doesn’t cry but she almost did when she saw this video for her birthday.
7. Talk to people who have gone through a similar situation. The peace and reassurance that came with those conversations were second to none for me.
Recommendations for the Perfectly Healthy
1. Plan for your own death by making your will. I’m 35 years old and have *personally* known 6 people under the age of 35 who have passed to diseases, car accidents, and sporting accidents — a couple as early as 16 and 18 years old. All you have to do is assign your physical and digital assets to people you trust. RocketLawyer.com makes this easy and costs < $100. If you want something more thorough, ask around for an “estate lawyer.” Pricing on this is $2–5k. Digital assets are tougher — get a paid 1Password or LastPass account and give a couple of people your “emergency kit” so they can take control of your emails, files, and social media accounts when you pass.
2. Consider planning for the messages you want to leave for your loved ones who survive you. A friend and father of two is kicking up a service to help people with this very goal: https://www.indiegogo.com/projects/whenileave-com-safeguard-life-s-treasured-moments#/.
See Also: Cancer: How We Got Here