When The Going Gets Tough, Organizations Circle Their Wagons

The good news first: Harvey is doing well. He is able to keep food down better, even though he is still limited in what his sensitive stomach allows him to eat. Every day he puts in a minimum of 30 minutes on the treadmill, getting in 1+ mile of walking. As for me, I am in the process of coming to terms with what happened on DAY ZERO. It is a huge help that my very strong and capable daughter is here to help me cope. Grown up daughters are among the best things in creation, don’t you agree?

Now for the aftermath of DAY ZERO dust-up. While I did not get to see the actual bag and the infamous nick in it (I was told they had already discarded it and it would take a major case of dumpster diving to retrieve it), we are told it was not a really serious nick, most likely there was no contamination, we should just try and get over the whole thing. This whole incident raises series of ethical questions for me and I thought I would share them with you, hear what you guys have to say. The specifics of this particular case may be unique to Harvey, but I am willing to bet similar things happen to any patient dealing with health issues on a regular basis.

There are all these displays around the hospital, titled “Patients’ Bill of Rights” – several pages of small print. Each patient room has a placard that says “You are the most important member of your health care team“. And yet, when something went wrong, the immediate response was we are smart, we know what we are doing, we have done hundreds of transplants before, please relax, trust us and get out of our hair why don’t you. At some level, I can understand and even empathise with that sentiment. Hospitals would be tough to run if the inmates take over control of the loony bin. But it is not as simple as trust. There are bigger issues here and no easy answers.

A Very Different Perspective

Over the years of my involvement in CLL patient advocacy I have been fortunate in developing close personal friendships with some of the best and brightest doctors in this country and elsewhere. I got feedback from one of them yesterday, a doctor that is right up there on my short list of good guys. Not only is this man competent, he is also one of the most compassionate, generous and dedicated of researchers and physicians that I know. I trust his expertise, I trust his goodwill, I trust his sincerity. So, when he said he was less than thrilled with my DAY ZERO post, his feedback was something that I took seriously. I spent a great deal of time thinking about his perspective. As my friend said, do I know too much for my own good, am I making trouble for myself and Harvey precisely because I am more aware how the process works? You know the old saying, never watch while sausages are being made, you will never be able to enjoy eating them again.

How much should patients be told? When is it information overload that interferes with good quality patient care? Is it better if the doctor keeps mum about distressing information and made decisions on behalf of his patient? I am afraid there are no easy answers here and I am certainly no fail safe oracle on the subject. Each of us have to struggle with these issues and come up with answers that best fit our needs.

A Wide Spectrum

Let us take one extreme end of the spectrum: a wise old doctor, a veritable “Marcus Welby”, someone who combines professional training with experience learned from treating countless patients; a doctor that is not just smart but also wise when it comes to making human decisions; a doctor that knows this particular patient well, knows what works for him and what does not, how much information he (and his family or advocates) are able to process without going into a blue funk. He is told about the nick in the bag, perhaps even went the extra step and examined the bag for himself and therefore knew it posed no threat to the transplant. Why bother the patient with this stress inducing but otherwise non-critical information? After all, the end result would be the same, the patient has already been preconditioned, past the point of no return and not doing the transplant is not really a viable option. In this best foot forward rosy scenario, would you vote for the patient not being told about the nicked bag (or some such similar issue)?

I confess, even in this best possible scenario, my preference would be for the wise doctor to come in to the patient’s room, report the facts as they are, give his strong recommendation that the transplant go forward as planned since there is really very little additional risk. His personal credibility with the patient, not to mention his personal awareness of the details of the incident (the nick was tiny, it did not really go all the way into the bag etc) would certainly have made it easy for the patient to accept the recommendation, go forward with the transplant with confidence and equanimity.

Now let us look at the other end of the spectrum, the way it actually happened on Harvey’s DAY ZERO. Cell processing noted the nick in the bag and flagged it as they are supposed to do. Best as we can tell right now, a very nice but young nurse practitioner was told about it directly on the phone. Perhaps due to pressures of work or plain lack of experience on part of the Nurse Practitioner, that is where the process fell apart. No conscious decision was made, either by her or anyone higher up in the chain of command. Attending doctor was not told, resident on call was not told, and most definitely, the patient was not told. The transplant went ahead as scheduled, not because someone actually thought about it and decided it was safe to proceed, but because no one connected the dots, institutional brain was not in gear.

This is a far cry from the wise old physician making the decision on behalf of his cherished patient. Perhaps in this particular case Harvey has missed the bullet and indeed there is no real risk. I fervently hope so. But what if it had been otherwise? What if the nick had been a serious one and the cor blood product had been dangerously contaminated? What if the better choice would have been to put things on hold until they got hold of the back-up cord blood units on a priority basis, thawed them out and then proceeded with the transplant?

Even if things had happened the way they were supposed to and the attending physician had been informed of the flag raised by cell processing lab, how valid is it for a physician who just happened to be on call for rotation that week to make a judgement call on what level of information the patient can or cannot deal with? Some one who has met the patient for no more than the few minutes it took to get his vitals perhaps, some one knows nothing more about the individual? Do they teach sufficient clinical psychology in medical school for oncologists or transplanters, can a patient’s intellectual and emotional competence be judged so quickly?

Even if the patient is old and getting a little long in the tooth, obviously unable to deal with complex medical issues, does it mean he should be out of the loop? What if he has smart-as-a-whip daughter, son, wife or patient advocate whom he trusts to make decisions for him? Where in all the patient consent forms did he sign away his rights to information that may make all the difference between life and death? Can anyone wearing a white coat (we hope a clean white coat) trump patient’s right to information and being involved int he decision making process?

Institutional Responses Frequently Differ From Personal Responses

We met with several layers of the chain of command here, after the proverbial shit hit the fan. In person, they were reassuring, sincere and fully apologetic, across the board. I was most impressed. When it came to putting things in writing (such as in responding to an email from yours truly), the incident was demoted to a case of miscommunication. I was told they will do all they can to make extra effort to give me access to information, because of my special needs on account of my role as patient advocate.

Reading between the lines, there was the hint that what happened was not such a big deal, a mere case of miscommunication. Joe Blow walking off the street without the benefit of a “Dr” in front of his/her name and press credentials as a patient advocate may not get the extra effort that I have now been promised by the hospital. I may not quote the hospital’s response to me, confidentiality rules are in effect. Below is a quote from my email back:

Actually, not telling the patient that the cord about to be infused into him may have been contaminated until after the fact is neither garden variety “miscommunication” nor “a great level of detail” to help me advocate. I would think this is the bare minimum requirement for informed patient consent. I hope that that is the light in which Fairview sees it.

What do you think? How do you see it? Miscommunication or major process failure?

A Bad Solution, But The Best We Have

Some one said that democracy is a bad form of government, except that it is better than all the other forms of government. I make no bones about my perspective on the issue of informed patients. We may not always understand all the details, we may have to struggle to deal with the fear of intimidating complexities of modern medicine, but when all is said and one, we have more skin in this game than anyone else. We need to know.

My gentle and generous doctor friend said I was too personally involved, my heart is too deeply committed because it is Harvey lying there with the cord blood getting infused into him and that makes me less dependable as a patient advocate. Guilty as charged, I most definitely have a dog in this race.

But then, do you really think anyone would spend the kind of time and effort that goes into this process if they did not have a personal stake in it? Just about every advocate and advocacy effort that I know of, including the likes of Mahatma Gandhi and Martin Luther King, involved people who were deeply committed at a gut wrenching personal level. I wonders if MADD (Mothers Against Drunk Driving) would have started without a couple of broken hearted moms that lost their beloved children to drunk driving. Sorry, personal involvement goes with the turf. I do not think any of the no doubt sincere officials working for a salary at the Lymphoma & Leukemia Foundation would bring quite the same level of passion to the subject. Would you trust their more detached perspective because it is less personally involved?

The modern age of democracy and patients rights to information access is here to stay. Paternalistic “don’t worry your pretty little head about it” attitude that shuts us out of the loop does not sit well with me, any more than elitist or aristocratic forms of government. We get worked up when our elected officials act too big for their britches. When exactly did we elect doctors in white coats (or their assistants without the benefit of medical school) to make big decisions for us without informing us?

I will be the first to admit the system is complicated, frustrating, scary and very prone to inefficiency. Excellent clinical trials are languishing because of the difficulties in recruiting patients, because of all the paperwork involved in getting informed consents. Medical information is growing so fast this is a case of not just “Future Shock”, it is a case of future whiplash. CME programs not withstanding, local oncologists can’t cope with the gusher of information, what are the chances mere patients can?

But what is the alternative? Would you rather that decisions are made (or more precisely in this specific case, decisions are not made) by any one wearing a white coat, and you are told about stuff after the fact?

What say you? Enquiring minds want to know.

Be well,

Chaya