Friday, October 25, 2013

Conformed Consent

Yesterday in a conversation about ethics a turn of phrase occurred to me, and the more I've thought about it the more sense it's made. Let me make it in context.

The specifics of the conversation had to do with informed consent and the decisions of patients and/or families - perhaps especially families when the patient can't participate - regarding goals of care and possible treatments. Now, there have been many discussions on what "informed" consent might mean, and whether we can really and accurately inform patients and families. Those discussions are important, but I was struck in the conversation by another point. Even when we try hard and do our best to provide information that is accurate, and try to provide it in a form comprehensible by the person in front of us (usually someone who would not comprehend the word "comprehensible"), people make decisions or ask further questions that seem to us as professionals as if the person didn't understand. With some further conversation the person might completely and accurately recount back to us the information provided, and then still ask for information or, more importantly, for an intervention that seems to us unhelpful. Once again, we wonder whether the information has really been comprehended (understood more deeply than simply the level of definitions and concepts).

Most of the time over the years I have noted and pointed out to colleagues that this is one consequence of the principle of autonomy, and especially of how in our American context (by which I mean specifically the United States, and not including Canada or Mexico) autonomy has become the overwhelming principle applied in making health care decisions. If we allow folks to make the decisions, we need to be prepared for them to make decisions we find foolish. As I have often said after a difficult family conference, "It's not that they don't "get it." The problem is that they don't want it."

It occurred to me, though, that this reaction doesn't do justice to the families of patients, because it doesn't claim our part in our own frustration. It occurred to me that we expect that informed consent will in fact be conformed consent - that is, that the information that we find compelling will also be found compelling by the other party.We have been persuaded by our own information and logical reflection, and we expect it to be persuasive to any other rational person. Ergo, if it isn't persuasive the other person must not be rational.

And that is our sin. That dishonors the other persons' values and frames of reference. It is also as much a cause of our frustration as the other persons' responses. It's the unclaimed, usually unrecognized prejudice - literally, our pre-judging of what constitutes reasonableness, if not of the person specifically - through which we set ourselves up to be disappointed.

In that light I'm humbled by how often we aren't disappointed or frustrated - that it doesn't happen more often than it does. That is, in fact there is enough of a shared social frame of reference that much of the time the "best medical advice" that we offer is persuasive for those who listen. Let me be clear: it is also part of that, and a part that we need to be self-aware about, that some of that social frame of reference has to do with the status of the expert and of the physician (in these instances combined in one), so that it is not the information or the logic that is persuasive but instead the perceived authority of the physician. Still, even recognizing that caveat, it is a fact (one that we don't appreciate often enough) that there is enough shared sense in our culture of what constitutes "reasonable" that we don't have more moments than we do when we project that the patient and/or family are "unreasonable."

Nonetheless, these encounters happen more than we like, and perhaps should happen more often than they do. That is, we are too hasty to present our information and our reason from our context without taking the time to step into the other person's. We think what we find compelling must surely be compelling for others. We expect an informed consent process to result in conformed consent, and get frustrated when it doesn't work out that way. Unfortunately (and this is not really news), our expectations are as much an issue as another's lack of understanding or unreasonableness; and our frustration with the situation and with them is in no small part our own fault.

Monday, October 21, 2013

Sermon for Saint Luke's Day, 2013

I have the privilege of preaching this sermon for the Celebration of the Feast of Saint Luke at Saint Luke's Hospital, October 18, 2013. I note above that these are my words and my reflections, and not a reflection of or from the hospital where I work. I especially want to reiterate that here, since for once in this blog I make specific reference to it. 

It is the feast of Saint Luke; but let me begin with Ecclesiasticus. This is perhaps the only Scriptural book for which we know the author’s name: Jesus ben Sirach. Ben Sirach wrote: 

Honor physicians for their services,
  for the Lord created them;
for their gift of healing comes from the Most High,
  and they are rewarded by the king.
The skill of physicians makes them distinguished,
  and in the presence of the great they are admired.
The Lord created medicines out of the earth,
  and the sensible will not despise them.
And he gave skill to human beings
  that he might be glorified in his marvelous works.
By them the physician heals and takes away pain;
  the pharmacist makes a mixture from them.
Then give the physician his place, for the Lord created him;
  do not let him leave you, for you need him.
There may come a time when recovery lies in the hands of physicians,
  for they too pray to the Lord
that he grant them success in diagnosis
  and in healing, for the sake of preserving life.

The scholars that put together today’s readings began with this one because it is one of our few references specifically to physicians, and the only one I recall in which the physicians are actually the subject. Those scholars noted this because, of course, Luke was, as Paul called him, “the beloved physician.”

Now, physicians can get a bad rap. You know the reputation: arrogant and self-important. My broader experience is that physicians know quite well that they are part of a network of care, working with and dependent on the skills of others. That’s how the world is, really: none of us in our work is self-sufficient. All of us have to rely on others to some extent for our own work to be effective.

Ben Sirach was quite aware of this. Let me read something else that he wrote.

The wisdom of the scribe depends on the opportunity of leisure;  
   only the one who has little business can become wise. 
How can one become wise who handles the plow, 
   and who glories in the shaft of a goad, 
who drives oxen and is occupied with their work, 
   and whose talk is about bulls? 
He sets his heart on plowing furrows, 
   and he is careful about fodder for the heifers. 
So it is with every artisan and master artisan 
   who labors by night as well as by day, 
those who cut the signets of seals, 
   each is diligent in making a great variety; 
they set their heart on painting a lifelike image, 
   and they are careful to finish their work. 
So it is with the smith, sitting by the anvil, 
   intent on his ironwork; 
the breath of the fire melts his flesh, 
   and he struggles with the heat of the furnace; 
the sound of the hammer deafens his ears, 
   and his eyes are on the pattern of the object. 
He sets his heart on finishing his handiwork, 
   and he is careful to complete its decoration. 
So it is with is the potter sitting at his work 
    and turning the wheel with his feet; 
he is always deeply concerned over his products, 
   and he produces them in quantity. 
He moulds the clay with his arm 
   and makes it pliable with his feet; 
he sets his heart on finishing the glazing, 
   and he takes care in firing the kiln. 
All these rely on their hands, 
   and all are skilful in their own work. 
Without them no city can be inhabited, 
   and wherever they live, they will not go hungry. 
Yet they are not sought out for the council of the people,* 
   nor do they attain eminence in the public assembly. 
They do not sit in the judge’s seat, 
   nor do they understand the decisions of the courts; 
they cannot expound discipline or judgment, 
   and they are not found among the rulers. 
But they maintain the fabric of the world, 
   and their concern is for the exercise of their trade. 
(Ecclesiasticus 38:24-34a)

I love the phrase in that last verse: “they maintain the fabric of the world.” Without all those other trades – without all those other professionals, really – the city falls apart. They may not get the attention that city leaders get, but they are critical to the city’s survival.

That’s also true of a hospital. We all know that if we give it only a moment’s thought. Small steps have big value. There are things that are required of physicians, and also required of all of us, that don’t make headlines and yet are very important to our care of patients and their families. So, good hand sanitation is a standard precaution, required of all of us; and not just part of the scrub-in for surgery. Good communication is a standard of care for all of us, and not just for the physician or the nurse. Some of us will remember when Saint Luke’s South [Hospital] opened, with a hide-a-bed couch in every room. One of the things the Kansas inspectors were most concerned about was how well our environmental services staff could sanitize the inner workings of those couches. That was because they knew, and we know, that excellent housekeeping is important for the safety of our patients; and how a lapse in how we clean our beds or our tools or our hands can undo all the good accomplished by physicians and nurses and others. So in modern health care we do honor the services of physicians - and also the pharmacists mentioned with them – and we also honor the care taken by all of us who serve, professionals and staff and volunteers alike.

Which is really appropriate when we think of Luke. Luke was a physician, but like so many physicians he had real concern for the poorest and most vulnerable around him. Think about how Luke understood Jesus’ mission, given to us in today’s Gospel lesson:

"The Spirit of the Lord is upon me,
because he has anointed me
  to bring good news to the poor.
He has sent me to proclaim release to the captives
  and recovery of sight to the blind,
  to let the oppressed go free,
to proclaim the year of the Lord's favor."

The poor, the imprisoned, the blind, the oppressed – that’s not an exhaustive list, but it does lay out a theme. Luke understood that good news for those who were vulnerable and suffering was central to what God was accomplishing in Jesus. This was, really, what the year of the Lord’s favor was about. Luke was probably modeling this on the year of the Jubilee, when every 50 years debts would be cancelled, land would be returned to its original owners, and slaves, or at least Israelite slaves, would be freed. The good news, according to Luke, was about setting the world right so that the vulnerable were restored.

That’s really something of a theme for Luke. Think of how he differed from other Gospel writers. Matthew wrote, “Blessed are the poor in spirit.” Luke wrote, “Blessed are you poor.” Matthew wrote, “Blessed are those who hunger for righteousness.” Luke wrote, “Blessed are you hungry.” Luke’s sense of God’s care for the suffering was quite concrete. It was Luke who described how a Samaritan cared for the wounds of a beaten man with oil and wine. It was Luke, too, who wrote in Acts of the first Christians who were communal, where “all gave according to their means and all received according to their need.” Like so many physicians today, Luke was concerned about the real needs of individuals and the communities in which they lived.

And for Luke this was not simply professionalism. It was holy work. This is clear again from his record of Jesus’ vocation. His concern for the vulnerable comes because “the Spirit of the Lord is upon me;” and his understanding of God’s goal is “the year of the Lord’s favor.”

All of this is what we claim when we associate ourselves and our institutions with Saint Luke. More than 100 years ago a group of Episcopalians picked up the pieces of an earlier unsuccessful effort and started a hospital in Kansas City. They named it for Saint Luke, the physician who proclaimed God’s care for the sick and the vulnerable. Naming it for Saint Luke they claimed for it the conviction that God’s work is seen when the sick and suffering are made whole. They claimed for it the heritage that care for the poor, the blind, the trapped, and the oppressed is holy work.

And we continue to claim that heritage. That’s why we honor Saint Luke and with him all physicians. And with the physicians we also honor all the other members of the team, professionals and staff and volunteers, whose contributions great and small make this hospital and this health system resources for healing and wholeness, for relief and rescue and restoration.

Now, I know we do not all understand God the same way. It is one of the privileges of my job that I work where we appreciate, and even celebrate our diversity. I’m happy to be able to say to one and all, “Your spirituality is welcome here.” So, I know that Saint Luke as a model will be compelling for some and not for others. At the same time, in almost twenty years in this System I have seen again how many of us, coming from many different perspectives, still reflect the convictions of those who founded Saint Luke’s Hospital: that whatever “holy” might mean, care for the sick and the suffering is holy work; that however Spirit might be experienced, it was Spirit that calls us to care for the poor and the vulnerable. From every bedside to every office to every closet we continue to see how we all work together to see for our patients recovery and restoration. And as long as we continue in that work together, we share in the heritage of Saint Luke – of Saint Luke the Physician, and of Saint Luke’s the hospital.