I hate hospitals.  Have I mentioned that before?  A million times or so?  It starts with navigating a frustrating labrynth of buildings/elevators/hallways/offices.  I'm not even in the doctor's office and already the smell, as though every hospital in New York sprays itself with the same disinfectant made to smell like stale paper and bleach, tightens my lungs.  The nauseating fluorescent light, the click-click-click acoustics on the tile floors, walking, looking, until you find the office with cheap industrial carpeting and polyester furniture.  

There's always a sad stack of worn books and toys slumped on a table somewhere. You are handed a clipboard.  The minute I start filling and signing, filling and signing each paper, the feelings I had being here with Lula pour back into me, filling me from my toes upward. It is a place so devoid of life and joy and decent lighting.  It drains your personhood. Everything looks frightening from in there.  

I used to have to mentally recover from every doctor's appointment, even if there was no bad news (there was never good news, so no bad news was good news).  It got quicker over time but in the beginning it took a full day to feel the warmth of the world again.  I could never imagine how doctors and nurses could stand to work in that environment.  My own mom, a nurse, would strip off her scrubs the minute she walked in the house and immediately put them in the wash.  Of course this was mostly because of all the super-germs that hospitals carry, but I think also she wanted to bring no part of the aura of a hospital into her home.  

Most people think they hate hospitals because seeing sick people makes them sad, but I think it's more than that.  Life is reduced to science, distilled to it's most basic functions and elements and whether or not they are working properly.  No one thinks of themselves in this way in their normal life.  As in, "What do you do for a living?", "Oh I inhale then exhale, then inhale then exhale, and my blood flows and my heart pumps and then I'm a graphic designer with a wife and two kids".  The actual space itself - devoid of anything but science- creates that very sense of distance from your meaningful life.  I have wondered how differently these interactions would be if the doctor had to come to your house to give you bad, or complicated, news. 

Obviously, it's a doctor's job to see all those little functions, molecules, genes,etc. That's how they can find the things that ail us.  But the disconnect between their science and your life means that mentally you have to join the two together to make any sense of it all.  

I am thinking of this now is because I have been following the two recent cases of brain death and families at odds with doctors of Jahi McMath and Marlise Munoz, which are both discussed in this article in the New York Times. While Jahi McMath has been declared brain dead and therefore technically fully dead by her doctors despite her families wishes,  Marlise Munoz has been declared brain dead but not technically dead by her doctors because she is pregnant and therefore being kept alive against her families wishes.  I feel such agony for these families.  Regardless of who is "right" or "wrong", nothing could be worse for a family than to have to work through end of life care with a medical team that they don't feel respects their views. 

The first thing to note is, as my geneticist would say is, "the more you know, the more complicated it always gets, never simpler". The medical establishment can no longer even agree on what death is.  All of their brilliant scientific discoveries have led them to this grey area, but rather than acknowledging that it is indeed a big fucking conundrum they have created, each doctor (in different states) decided to make a non-negotiable decision despite the real life implications for the families. Even if it's proven that everything they did medically for their patients was perfectly sound, the hospital teams should see themselves as failures in both cases.  

It is absolutely imperative that the family feel that they are a team with their doctors.  It is impossible to feel right about letting your child die with people you do not trust.  If a doctor cannot get to that place with the family they should have the confidence and humanity to pass the case to another doctor.  If a doctor or a hospital just overrules a family they traumatize them all over again.  As a standard things like intubation should be discussed with families and patients beforehand, no matter how "routine" the procedure.  Living wills should be discussed and encouraged (and free) at every opportunity (how about, for example, signing up as an organ donor entitles you to a pro bono living will?)

When we were at the PICU with Lula trying to decide whether or not to put in a tracheostomy tube,  I don't think I ever could have signed her DNR if her PNP Betty Keating, who had been with us since the early days, hadn't literally been holding my shaking hand.  And were it not for Dr. Howell the attending at the Weill Cornell PICU, who was so gentle and maternal and warm while being so professional, who never ever made us feel like there was any rush, and Dr. Phillips whose soft southern voice and quiet temperament stayed with us throughout the hours that her breathing slowed and slowed and slowed, the experience would have been torture for us no matter how much we were assured that the morphine drip in her arm promised a painless death.

These words "soft, gentle, maternal, quiet",  I think are not usually the traits that make somebody want to become a doctor.  But they are every bit as crucial to care as being good at science. The chief attending that day, a sauntering self-assured doctor who led his pack of residents around from patient to patient like a tour guide, came to use a few hours after we decided that we would, at some point, take Lula off of oxygen to let her die and asked us "are you going to do this thing now?  Because my shift is done soon, but I'll stick around if you're going to do it now".  I didn't have the energy to tell him what a fucking assholish thing that was to say.  I wanted to snap, "thanks but I think my daughter can die without your help".  Though he was a perfectly good clinician I couldn't wait for him to leave.  I didn't want him and his type -A energy around at all. And yet I think he really thought he was doing us a favor. Once he was gone I felt safe enough to let her go.

This is probably the one time in my life I had wished I was religious.  We were offered a minister or priest or rabbi many times.  I don't believe in any of their scriptures but I yearned for someone who had really thought about how the living experience death of a loved one.  I feel like doctor's need a staff philosopher.

The truth is that ultimately the families are not the doctor's patient and therefore they are not paid anything for dealing with them. There is no financial incentive, and since medicine is still an entirely for-profit venture, and not a basic service of a functional society, this is unlikely to change much. But there is a glimmer of hope. A recent article in the New Yorker (which, unfortunately you can only read online if you are a subscriber) describes an emerging field in pediatric medicine called a PACT team (Pediatric Advanced Care Team), described as "a diverse team (made up of doctors, nurses, case managers, bereavement specialists and others) that can address the physical, spiritual, and emotional needs of chronically ill children".   Oh my God, how we could have used this from the very beginning of Lula's diagnosis! Really every family facing chronic illness needs a team like this.

Until our method of compensation to doctors and hospitals is no longer contingent wholly on medical procedures and interventions this is unlikely to become a standard.  One doctor who was a founder of the PACT concept was told by another doctor "you are throwing your career away".  WTF?  That right there shows how fucked up this system is.  Shouldn't the goal of all doctor's be making patients lives easier, healthier, less painful rather than sticking them with sharp objects and filling them with drugs? They can argue about the definition of "death"  all they want, but I think that until doctors are taught a holistic approach to medicine and then are compensated for care as much as for procedures, families and doctors will be in two separate universes, struggling to meld them together.