I’m super excited that this essay was just published on KevinMD.com. Not quite NEJM or JAMA, but I’ll take it! Due to word count restrictions on KevinMD, I had to modify the original version quite a bit. Here is the link to the KevinMD post with my unabridged essay below. Enjoy! https://www.kevinmd.com/blog/2019/06/how-to-have-an-exciting-death-5-tips-from-a-palliative-care-physician.html
We’re all gonna die.
This is a simple and uncontested truth, however I’ve encountered a number of people who forget that this truth applies to them. Some people die sudden and unexpected deaths, but most of us eventually fall victim to chronic or terminal conditions like COPD, heart failure and cancer. As a palliative care physician, I often have the opportunity to meet patients who have had robust conversations with their families about end of life wishes. Some of these people have completed legal documentation reflecting not only their wishes in terms of medical care, but also establishing surrogate decision makers. While I certainly appreciate the forethought and the effort, these patients and their families are, well…boring. They typically get along well, are united in the medical plan of care and are exceedingly respectful of each other. They almost never yell at each other, show up at the hospital intoxicated, punch walls or get escorted out of the hospital by security. These patients are usually comfortable and content, knowing that their wishes are being honored and that they are calling the shots. They take advantage of the time they have left to say their goodbyes, hug their grandchildren and savor that delicious slice of coconut cream pie. Now this is all good and well, but as a Palliative Care doctor, this scenario poses me absolutely no challenge. It makes my job far too easy. Like most physicians, I’m a pretty competitive person and I prefer difficult cases to keep me sharp and on my toes. And extra drama makes me feel like I’ve just stepped onto the set of Grey’s Anatomy!
So, for the sake of my job satisfaction, I would like to offer the following suggestions to help make your dying process as dramatic, confusing and uncomfortable as possible….and to make my job way more exciting!
- Under no circumstance should you ever establish a DPOA (durable power of attorney). This will only serve to clarify surrogacy and simplify the decision-making process. Super boring. If you are absolutely compelled to appoint a DPOA, make sure it is the craziest, most unreliable and emotionally unstable person that you know. Perhaps your co-dependent son Todd or your wakadoozie sister Martha. Better yet, make them co-DPOAs so they have to reach a consensus about your care. That should be fun!
- Never ever ever fill out an advance directive or a living will. Why do today what you could put off indefinitely? And along those lines, for the love of Pete, do not consider telling your family about medical interventions you would or wouldn’t want. When you eventually lose consciousness, it will be so much more interesting to try and guess! I can assure you that half of your family will think that you would want to go home and be allowed to die comfortably and the other half of your family will insist on poking you with every needle in the hospital and hooking you up to every possible life support contraption we can drag into your room. This disagreement will eventually lead to shouting and, if it’s a good day, a physical altercation! And then Martha will show up with her essential oils, certain that her lavender/eucalyptus vapor will cure you. Now we’re having some fun. I will say, if you feel badly about not sharing your wishes with your family, do me a solid and at least wait until $#!t is hitting the fan to try and have that conversation. There is nothing like trying to have a good goals of care conversation while the crash cart is being steered in by a brand new nurse, the intern is about to pass out in the corner and the critical care fellow is ordering rainbow labs and a massive transfusion protocol. This is when things start to get exciting! I feel a STAT Palliative Care consult about to jolt my pager! Wait, let me fix my hair!
- Please casually mention to at least one family member that you would want your doctors to “do everything” to save your life. You could even throw in “I want to live.” Now I recognize that this is a bit counter to #2, but allow me to explain. If you say “do everything” or some iteration of that phrase, your family will declare at every opportunity “SHE’S A FIGHTER!” and will cling to this with every shred of their being. They will interpret “do everything” as definitive, no exceptions, caveats or qualifiers. We all know that if you are dying of a terminal disease, doing everything makes no sense at all…but hey, allowing your body to shut down naturally and comfortably is boring. Life support machines are FUN! If you are dying of metastatic cancer, even if your lungs are full of blood clots and cancerous masses, my pulmonary friends would love to put you on a ventilator. When your kidneys have completely shut down, my buddies the nephrologists would be stoked to put a big catheter in your neck and start some dialysis. When your heart is so weak that it can no longer beat normally, we’ll have the intern try to shock it back into rhythm. Undoubtedly Todd and Martha will be standing by your unconscious body, which is now on the verge of decomposing, shouting “KEEP GOING! She wants to LIVE! She’s a FIGHTER!” Rocky Balboa has nothing on you, baby! Your dialysis machine will hum, your ventilator will alarm and your medical team will stand by, awaiting the moment when your heart stops and they will send the medical student to pounce on your chest. If the student does effective CPR (thus solidifying her grade for the rotation), she will break your ribs. Now, does it make sense to do all of these things to you? Why, absolutely not! But that’s what I call going out in a blaze of glory! And your memory will live on in many psychiatry appointments when that poor medical student recounts the feeling of your bones crunching under her hands.
- Object to the use of any medications that could potentially ease your suffering. The most tried and true medications to manage pain as well as the feeling of suffocating are opioids. Yup, that’s right…morphine, fentanyl and hydromorphone. Your doctors know that these medications are completely appropriate to use for uncontrolled symptoms and that they will not kill you, but please, Todd and Martha do not need to know this. I want them to look at me and say “we don’t want her to suffer, but DO NOT use any of those narcotic medications…oh, and keep doing everything…because she wants to LIVE! She’s a FIGHTER!” That’s like asking me to go to Mars, but not letting me use a spaceship. This is the part where the social worker grabs my wind machine, the camera zooms in for a close-up, Eye of the Tiger plays in the background and I say, “Challenge accepted!”
- Please hold out for a miracle until the bitter end. If there is a surefire way to prolong your death, it’s insisting that your doctors continue to give you fluids, antibiotics and artificial nutrition because you are waiting for God to heal you from your widely metastatic cancer, kidney failure, stroke and bowel necrosis. I know for a fact that God is completely powerless when it comes to performing miracles without a little D5 ½ NS running. And you are way more likely to get a miracle with some Zosyn on board. Even my next-level palliative care ninja skills can’t overcome that line of reasoning.
So, to reiterate, if a painful, drawn out death is your jam…follow steps 1-5. If you’re one of those boring, thoughtful people who prefers to die peacefully and comfortably, spending your final time somewhere other than an intensive care unit, establish a DPOA who has good coping skills and will honor your wishes. Complete an advance directive and discuss your wishes in detail with your family members. Preferably the rational ones. Be open to the use of medications to manage your symptoms if necessary. Continue to believe that God or a higher power has your back, but acknowledge that the miracle you are hoping for isn’t necessarily the one He has in mind. And should you need extra help, please don’t hesitate to ask for a palliative care referral.