Saturday, March 11, 2017

How Lawyers Can Screw Up The Way You Die

When I was a practicing attorney, my colleagues and I would often sit around at lunch, arguing about whose sandwich was better. As a beleaguered single soccer mom, I sometimes welcomed the opportunity to fight about anything. It was habitual, and sort of a stress reliever like a good gym workout. Alone in our world of books and “right and wrong,” (as in “I’m right and you’re wrong”), we spent hours creating problems to solve so we could make money. Lawyers – like many professionals – form their own little bubble, but unlike say, IT guys or architects, our bubble is filled with righteousness. And our bubble’s better than your bubble. I was a litigation attorney for 15 years and the very qualities that made me a really good lawyer made me kind of a lousy human. Arrogance, aggression, a niggling persnickety obsession with every little thing…. these are highly valued in the legal profession. Of course, when you’re a girl lawyer and you act like a guy lawyer you’re considered a “real bitch” which is a badge of honor in my former profession. But I digress, which I often did in Court, to direct the judge’s attention away from my client’s crummy case, for instance. It worked pretty well, but there’s only so much smoke you can blow up a judge’s robe before you run out of hot air. Litigation wore me out, grated my soul up like cheese. I billed my last hour in 2004, gave away all my stuff, and left the East coast to be a cowgirl in Colorado. Turns out lawyers, the human equivalent of gnats on a summer’s eve in Jersey, are everywhere, even out here in the Wild West. Like the old horror movie, Night of the Living Dead, you can’t escape them. I hung up my chaps and headed back into civilization to make a living as a healthcare consultant in an area called Advance Care Planning. This is the process of having individuals, families, and their healthcare tribe talk about what they want their lives to look like as they get sick or old. Lo and behold, who shows up to weigh in on this? Yep. The lawyers, laying claim to the reams of fussy paperwork around “estate planning” (which is about Dead You, not Living You) and not even understanding that humans – while alive and making decisions about future medical care – actually need space to talk to each other and their doctors. What they don’t need is check boxes and legalese. In the 90s there was a series of very sad cases, three 20-something year-old women who ended up in chronic vegetative states due to accidents or overdoses. Parents and spouses argued in court while their poor corpses stayed alive on machines. These cases (Karen Ann Quinlan, Nancy Cruzan and Terry Schiavo) led to the passage of the Patient Self-Determination Act, a law that allows folks to determine their future on life support (or not) via the “Living Will.” Will? Did someone say ‘will’? Cha-ching! Another document we can create, own, and scare people about. And this is how lawyers stepped in to own your dying process. Without a heart for the work or an understanding of the doctor-patient-family triad, the suits jumped in and decided they would own the process of documenting death. Lord, they are such a pain in my ass. Lawyers have no business in the field of Advance Care Planning. None. Zero. You don’t need a lawyer to appoint a healthcare agent (through a Medical Durable Power of Attorney) and Living Wills are no longer worth the paper they are very expensively printed on. Lawyers don’t get this because they don’t get healthcare in the trenches. Understand that I’m committing heresy here and as we speak some very tight sphincter somewhere is preparing to sue me for the unauthorized practice of law or something. Whatever. I’m on a mission to wrest the dying process from the lawyers and give it back to the people and their healthcare team. It’s noteworthy that lawyers actually can kill us in many ways – death by a thousand subpoenas – but still, this is none of their business. Here’s what happens when a lawyer gets involved in Advance Care Planning: they tell you to appoint a healthcare agent, but don’t stress that you must talk to that person and all other loved ones about your values and range of decisions. They have you check the boxes on a living will (DNR, DNI etc.) but don’t disclose that it’s basically a useless document. Clients leave thinking they have a Do Not Resuscitate Order when in fact they have a document that will likely be lost in the system somewhere and no one will even invoke until the patient is (1) unconscious; and (2) declared brain dead or terminal by two physicians. Trust me, by the time that document comes into play you are already “machined up,” in the ICU, tubes and vents everywhere. Lawyers have no idea how ineffective this document is. Then, after having you sign forms prepared by their paralegals, in addition to charging you too much and not informing you enough, they often just have you pack the whole bunch of papers into some obscure place where no one knows about them. Totally useless, but worse, the whole scenario gives you a false sense of security, I’ve taken care of that now, when in fact you haven’t done it correctly or effectively. At all. Lawyers are important if you’re in trouble or you have a lot of money. Death and dying are trouble, alright, but not the kind a lawyer can anticipate or avoid. It’s not a medical emergency either. Death is just a natural process that we have altered through technology. Unable to keep our minds on pace with medical progress, we tend to hide our heads in the sand and then act horrified at these awful endings created by medical aggression. This can all be avoided by some pretty simple steps – like talking to your loved ones, filling out your own Medical Durable Power of Attorney (here’s a guide to state documents), disseminating them to everyone involved from family to physicians. And then talking some more. My ER doc friends tell me there is no document that comes close to the help of a well-informed family at the bedside. And with the current chaos in electronic medical record systems, chances are no one will ever know of or see that $500 document you signed in some lawyer’s office. You may not be able to keep lawyers out of your life, but you can surely keep them out of your dying process. You don’t need a lawyer to make a future healthcare plan. Just talk to regular people – your family, friends, and healthcare team. Talk early and often about what really matters to you. You’ll only be in a “to pull or not to pull the plug” scenario after a hundred smaller decisions made by doctors and family. If you want to end up tethered to a machine you certainly can be, but it doesn’t have to be that way. You can empower your people to make sure that you remain in control of your dying process even if you can’t make decisions at the time. Give others the power to do that. Just make sure they don’t have “esquire” after their names.

Thursday, March 2, 2017

I Am an 800 lb Gorilla

I don’t believe in hitting kids but as the single mom of three boys it’s not like the thought didn’t cross my mind. Children are so adorable and nerve-wracking – like heaven and hell in the same package. Yet despite what I thought was restraint on my part - I never laid a hand on them - my beautiful, hulking sons were apparently scared to death of me. Here’s the thing. As a second generation Italian mother I’m pretty sure I managed to telegraph a lot of bad ju ju without being a physical menace. An Italian mother has an arsenal of threats that involve evisceration with spoons, coupled with decibel levels that put the Air Force to shame. This kind of mother is an 800-pound gorilla. Where does she sleep? What does she eat? Wherever, whatever she wants. I’m not proud of this. But like we say in Jersey, I’m just sayin’. Now, don’t get me wrong. We are a fiercely devoted tribe, my boys and I (and now their amazing families), and we definitely put the “fun” in “dysfunctional,” but as I watch young mothers in public places gently give their demonic two-year old “choices” around behavior I realize that was not my style. I’m almost a little grateful that my boys feared me because that came in handy in the teenage years when they were jumping off the roof (onto a trampoline) and the cops knew me by my first name. Their knucklehead, adorable teenage friends apparently feared me as well, though they loved my open fridge and the fact that I used the “F” word with impunity. Once I discovered a son smoking weed out of a huge bong with a couple of his buddies and when they saw all 5’3” 115 pounds of me the kids fled in abject terror while I pulled my boy out of the house by his ear, took him into the back alley, and threw his $200 bong into oblivion. We watched it explode into pieces and he looked at me, comprehending. “Capisce?” I asked. “Yeah, yeah,” he was sweating, “Capisce.” An Italian mother doesn't pause and search for the right words. We are raised on impulse and anger is like mother’s milk. This all has pretty disastrous consequences in the regular world but is the everyday landscape of an Italian family where love is never doubted and loyalty is so fierce you want to be a part of our clan. We can close ranks and protect and help each other like an army of love but often, as my oldest reminds me, it’s “a slap and a hug.” We’re all grown up now and the boys are bravely facing parenthood and work-life challenges with the kind of openhearted humor that defines us as a family. But there are still conversations to be had, crucial ones at this point as I head into my sixth decade. Italians don’t consider themselves “’Medicans” (read: Americans, that is, non-Italian white people) and frankly we often feel a little sorry for those whose ancestors stepped off the Mayflower. They can’t seem to talk about a thing, other than their portfolios or whatever. When an Italian mother wants to talk about what’s going to happen should she gets old, maybe loses her mind and her body goes south, it goes something like this: “Boys, I have to talk to you about what happens when I get old and sick.” “Ma!” “NO!” “You’re never gonna die!” “Shut up. Sit down. Listen to me. And if you don’t do what I want I swear to God I will come back from the grave and kill you with a spatula which will be a long and painful death.”
Then they listen, bless their ever-loving hearts. It’s excruciating to watch people get flustered and sweaty at the thought of talking to their families about anything, let alone illness and death. When I worked briefly as a chaplain on an ICU I saw families standing like statues around a deathbed, unable to touch, talk, or navigate this inevitability with any skill at all. I guess when you’re raised in an environment where your mother repeatedly reminds you of your mortality, talking about death is not such a big deal. But for non-Italians it’s apparently complex and nearly impossible. And many other cultures and immigrants have no problem talking, loving, and singing to their dying family members. How boring this country would be without our huge and varied cultural landscape. If Trump was president back when my grandparents came from Naples maybe he would have tried to keep them out too but it wouldn’t work. We find a way. The tenaciousness we bring to this scene is a welcome relief and a catalyst for great fun, great achievements and brilliant authentic living. Lordy, if exclusively white people lived in the USA – with their carefully raised two-year olds who get to decide things – can you imagine? Havoc, I tell you. Because underneath all the yelling my boys knew and still know that they are the center of my world and I would tear limb from limb for them. At a little league game, when some asshat father was yelling at my son I got right in his face, immediately. The bleacher parents sat in stunned silence as I explained to this man what I would do to him if he didn’t shut up. Afterwards, a big guy came up to me and said, I wish you were my mother. My own mother’s fierce devotion makes me look like a wimp. Her love for us was sometimes bigger than we could handle, but we never doubted her devotion. When she was diagnosed with Creutzfeldt-Jakob (“mad cow”) disease at age 66 we were unprepared to lose her, but as spastic paralysis and blindness took her into a vegetative state there was no conflict when the next medical step was a feeding tube. She would have killed us if we went that route, and we knew it. She came to my house where after a few weeks she died at two a.m., in my brother’s arms. I am okay being the 800-lb. gorilla if it means my kids felt safe and loved. And I’m 100% sure that when this big gorilla starts to fade they will lift me up, stare down aggressive doctors, take me out of some bad medical situation immediately and love me big, right to the end of my loud and wonderful life.