Another problem with the U.S. healthcare system: dying shouldn’t be thought of as a war.

Question: What prompted your novel “So Much for That”?

Lionel Shriver: It came down from a newspaper article and then a big personal event in my life.  The newspaper article was in The New York Times, detailing the fact that not only was the leading cause of bankruptcy in the United States medical bills, but that the majority of these people who were going bankrupt from medical bills had health insurance.  And that floored me.  I mean, how is this?  What is the bloody insurance for then?  And I thought, that really sounds like a novel.  And then following on that, then why don’t you write it?

I was interested in medical issues in general thought especially because in late 2006, I lost one of my very closest friends.  We had known each other for 25 years.  She was just barely older than I and she was diagnosed with peritoneal mesothelioma, when she was only 50 years old.  And she lived a year and three months after her diagnosis.  Her prognosis was only about a year, so that despite $2 million being lavished on her treatment, she died pretty much on schedule.  Mesothelioma is almost always caused by exposure to asbestos, and my friend was a metal smith, and she would have worked with materials that were laced with asbestos, especially back when she was at arts school.  And since I was also trained as a metal smith, I may have been exposed to the same thing.  That’s frankly, not something that I look at very hard because I just don’t want it to be.  I don’t want that disease.  But it was very upsetting to watch her go through that, it was upsetting to watch her deteriorate, to see her go through a period of extreme hopefulness when a CAT scan came in and it looked as though the cancer was retreating and then to watch her plummet again. 

And what was especially difficult about that experience and this is something I duplicate in the book, is my friend Terry, refused to admit she was dying.  And so my character Gwyneth who is another one of those loosely based characters that ended up achieving an independence of my friend also refuses to admit she is dying.  And I think it had to do with this business of regarding cancer as a war, as a battle that you try to win so that you use an arsenal of drugs at your disposal.  You know, all that language of the military.  I’m very uncomfortable with this way of thinking.  I don’t think illness has anything to do with battle.  I don’t like the way that puts the onus on the patient to win.  Right?  Because when you lose implicitly, it’s your fault.  It’s a failure of will.  My character embraces this way of thinking and therefore will not concede that she is dying because she associates dying with personal defeat.  And she is a person who has a ferocious will.  And therefore she believes that if she applies that will to her cancer, she can overcome it. 

This wouldn’t seem to matter, except that it puts the people who love her in a very uncomfortable position.  And this certainly happened to me in relation to my friend, Terry.  It injects an artifice in the relationship because when somebody’s dying, it’s a pretty big elephant in the room.  And if you can’t mention it, like oh by the way, I have a feeling you’re not going to be here next year, it’s a big thing not to be able to talk about it.  It also precludes any number of conversations.  I know that her own husband was never able to talk to her about, what was next for him after she died because they could never acknowledge the fact that she was going to die.  So, he was never able to discuss his own grief to address his future without her.  And all of us were denied the opportunity to have that, perhaps mythical, I don’t know if it’s possible to have this, but that last conversation. You know, the saying of last things.  I have this notion; I nursed this idea that when you acknowledge with someone that you are never going to speak again, that maybe it is possible to say some things that you would never say in any other circumstance. 

To me, that’s the one opportunity that a terminal illness presents you that getting run over by a bus doesn’t.  You know, there’s no warning with the bus, you’re there one moment and you step off the curb and you’re gone.  And you don’t get to put your affairs in order, and the most important of those affairs is your relationships to other people.  And then you leave – you know, you leave a spouse behind grieving not only that you’re not there, but that you just had a fight.  

I like this idea that you can use disease as an opportunity to set the record straight.  And to maybe breakdown certain emotional barriers that will always stay up unless you strip away the pretense that there’s always some later time when you can redress things.  That’s the way we relate to each other always.  We always assume that we will see each other again, and even people that we know perfectly well we’ll never see again barring some bizarre coincidence, we tend to say, “See you later.”  You know?  And I would have liked to have that last conversation with my friend, Terry. 

In the book, Gwyneth is refusing to admit that she is dying, denies that last conversation to her family and friends until finally, her husband breaks her down and rams the doctor’s prognosis down her throat until she concedes, no this is not a war, it has never been a fight.  Dying is not losing.  It’s just going to happen and this is an opportunity to say goodbye.  And therefore she is finally able to say goodbye in a way that is fittingly elegant.  She is an elegant woman and understated and dry.

Question: What, in your opinion, is wrong with the U.S. health care system?

Lionel Shriver: In the United States, our answer to the finitude of healthcare resources is to spend disproportionate amounts on single people with very good coverage and then to spend practically nothing on people who don’t have the coverage or essentially we discriminate according to how much people earned.  Or just how unlucky people are because you can actually earn a fair amount and just happen to have a health insurance plan that drops you when you get sick, or be very well-off and not be able to keep working because you’re sick and then your health insurance lapses.  So, it’s no exclusively an issue of the uninsured and the poor. 

Nevertheless, a single-payer system like the one in Britain, and I’ve lived in Britain, so I’ve experienced a national health service, is capable of making some of the hard decision that we make on a commercial Darwinian level in the United States in the UK they are much more systematic about it and I think much more fair.  There’s an organization called NICE.  Not very appropriately christened, The National Institute for Health and Clinical Excellence, and they are particularly responsible for looking at drugs and various therapies and how much they cost, and assessing how much more extra life these drugs or these therapies are going to get for an individual patient.  And if they cost too much for too little life, then those drugs and therapies are simply not approved.  The NHS will not pay for them.  Now, there’s a brutality to that.  NICE is not very popular in the UK, but I believe that that kind of an organization and those kinds of determinations are necessary evils.  I, personally, do not want millions of dollars spent on my living maybe a couple of extra and probably miserable months.  And by the way, I would add that that’s easy for me to say now because I’m in good health.  And I may feel differently later.  But I would think that it would be quite reasonable and maybe merciful for a higher power were I in that situation to say, “Okay Lionel, now you’ve changed your mind.  You’re desperate to stay alive, but no, we’re not going to spend $2 million on a couple of extra months for you.  You know, you’re not worth it.”  And certainly from this vantage point of a healthy, rational person, I don’t think a couple months of my life are worth $2 million of someone else’s money.