Doctors, Death, and Alfie

Unless you're brand new, you guys know how i feel about end of life issues. 

But I see that lately, there's some confusion about ethics when it comes to these issues. So, I thought I'd work them out here, from a Catholic perspective, and also from the perspective of someone who has lived with death, intimately, many times. 

The first thing we need to understand: hospice care/ palliative care is not the same as assisted suicide.

Hospice/palliative care is used when a definitive diagnosis of death has come down--usually, it's going to happen soon (the "six months to live" thing), but it doesn't have to be. Hospice is a legitimate choice. Here, the patient has decided that the only thing she wants is comfort care--she doesn't want heroic measures take to preserve her life (meaning, ventilation, ICUs, etc.) The patient wants to die, peacefully, at home or in a hospice care center, with family around. 

I could have chosen hospice care instead of going for a transplant, and it would've been a legitimate choice, because there were no other medical options left. This is what Barbara Bush did at the end--she decided, I don't want all this. I just want to die peacefully, with my family around me. This is totally legitimate. Now, this might involve IV fluids, for comfort, or medication, for comfort. But the person has come to grips with death, and has decided she doesn't want any more medical treatment. Again--this is legitimate. 

When hospice is taken, it means that the patient knows there isn't going to be a cure. Curative treatment has generally stopped. 

But hospice is truly death with dignity. 

Assisted suicide is not. Assisted suicide is when someone gets a medical diagnosis and decides that, instead of dealing with this by the hospice route, it would be better to die now. I have little sympathy for this view. You can read about my feelings here.  

Assisted suicide means what it says--the person wants death, and wants it immediately. This is legal in some states in America. That makes me very sad. 

And this brings me to Alfie. 

I love doctors. Doctors have saved my life. But doctors have also almost killed me. 

Doctors are not infallible. Doctors can be wrong. 

Now, this is where a fine line exists--there are times when families want doctors to be wrong, desperately. They want to believe their loved one is still alive. However. 

If a person is dead--there are tests that prove this. For brain death, there is criteria. 

If a person is dying, then we generally know this. But this is where it gets tricky. A doctor can say a patient is past the point of no return. Doctors told my parents that, when I was 18 and in the ICU. The doctor, clearly, was wrong. Sometimes doctors don't do the digging. They don't commit to the patient. They just write a patient off. And that leads to, well, she's going to die anyway. 

(We're all going to die anyway....)

But--just because a person is suffering or very ill--that does not mean we move in to kill them. 

Denying air, hydration, food, to a person in a coma, a persistent vegetative state, or what have you--that is unconscionable. That is not the same thing as hospice. That is killing someone. It's no different that putting a pillow over someone's face.

In case you're new to the Alfie case, quick summary--the boy has a neurological disorder that the doctors haven't figured out. It's destroying his brain. The doctors have decided that nothing more can be done, and so they took him off his ventilator. Alfie is breathing with only the assistance of oxygen cannulas now (no mechanical ventilation). He is continuing to breathe. The hospital has now given him oxygen and hydration, I think.

The parents wanted to take Alfie to another hospital for treatment. The courts in the UK have denied the parents this, because in the UK, the parents aren't the final arbiter of the child's best interest--the doctors are.  

Guys, this is terrifying. I love doctors. But doctors can be wrong. Three doctors, at least, were wrong with me--and almost killed me, three times. 

Doctors have also saved my life--three times--because they didn't listen to the first doctors!

The doctors decided that Alfie will never get better. That he is suffering. So it's better to end his suffering....by killing him. Because they don't think he can get better. So...it's better than he's dead. 

That's the same thinking that undergirds wrongful birth suits. And we know how I feel about that.  That a life with suffering is not worth living. 

I wish I didn't have to write about this stuff. But I do. And it makes me sad that I do. 

Guys, please, don't think that these things are all the same. They're not. End of life issues are complicated, but please educate yourselves.

Ordinary Joy

I have to start by saying: I am so humbled--and so surprised, honestly--at the reaction I received over my last piece. I am so honored to have received so many beautiful comments, both here and throughout social media, regarding it. Thank you for your lovely response! 

A lot of the writing I do here chronicles my daily life--ordinary joy. I write because that's what I do. It's my main creative act, the way I focus the lens of life. I write about books, and knitting, and travel, and theater, and my faith. And generally, my posts are pretty small. They go out into the world and a few people read them, and I get a few comments here and there. 

But Friday's post really clarifies why I write about the small. I write about the ordinary joy. I write about my constant use of the knit stitch and Jane Austen and sometimes I write about hospital stays and problems with insurance and IV woes. Because those tiny, ordinary things are what make up a life. It's a life I'm blessed to live, and to share with all of you. 

"Earth's crammed with Heaven", Elizabeth Barrett Browning wrote, " and every common bush afire with God; but only him who sees, takes off his shoes."   

I want to see, and I want to share those moments here in this space. I want us to take off our shoes. 

Ordinary joy, ordinary faith, ordinary life--and how extraordinary it is, that I get to live it at all. That any of us get to live it, at all. 

Deciding who lives and who dies

First, we have some OP Power, from Fr. Thomas Petri, who is the Academic Dean of the Dominican House of Studies in D.C. 

A sampling: 

Do we lose something, as a people, when it not only becomes legal but also expected that those with terminal illness should “choose” to die? If the European experience tells us anything, it is that those expectations willinevitably come. As clinicians morally coerce patients to end their lives (or impose that choice themselves) they will say that such is the caring thing to do, to free the friends and family who would otherwise be bound by responsibility. Yet no one is an island. It’s okay to be dependent. And though it’s difficult, we each know we owe constancy to those who need us the most.

This is one of my hot topics, obviously. In some countries, I'd have been aborted, using today's technology. I am genetically imperfect in a variety of ways. I have CF. I have thalessimia minor--and in Cyprus, babies with thalessimia are aborted, to the extent that there aren't new babies born with it. * 

I've been dependent on other people for most of my life, and I will continue to be so. I can't use a phone, so my parents have to make any necessary phone calls for me. My parents pay for my medications that keep me alive, because my salary is so low that there's no way I could pay for all my health care and live independently. My mom accesses my port every month. My life is totally dependent on the drugs I take. Without them, I'm not here. Heck, I'm only alive because someone decided to donate her organs. Like Blanche Dubois, I exist on the "kindness of strangers." 

Is it great, all the time? Well, no. I'd really like to be able to use a phone, but I like being alive more, so I don't begrudge--too often--the drugs that made it necessary for me to have the bionic ear. 

By my count, I've been close to death about five times. I've had some pretty unpleasant hospital experiences. (pH probe, chest tubes--I'm looking at you!). But never have I wished, in those moments, that I wasn't alive for them. 

"Princess, life has it all over death!", The Engineer tells Kim in Miss Saigon. And that's true. Life is the greatest gift we have. It's not perfect. No one's life is perfect. There will be pain. There will be suffering. It's guaranteed. We cannot prevent it. We cannot remove it. 

A fulfilling life isn't about what you can do. Life is precious because of what it is. We are created in the image and likeness of God. The angels envy us. No matter what we can or cannot do, physically or mentally, the most vulnerable among us need protected. Not snuffed out. 

______________________________

* for the Cyrus stat, from Wikipedia: A screening policy exists in Cyprus to reduce the incidence of thalassemia, which, since the program's implementation in the 1970s (which also includes prenatal screening and abortion), has reduced the number of children born with the hereditary blood disease from one of every 158 births to almost zero.[