Monday, June 13, 2011

Lessons I learned by Examining Miracles



"If it is a Miracle, any sort of evidence will answer, but if it is a Fact, proof is necessary”

Mark Twain

If you were tasked to take an evidence based approach to miracles in medicine, where would you start? Would you search Pubmed, Web of Science, or PsychInfo? Would you start off asking your colleagues and experts in the field? Would you just give up and say that miracles are based on faith, so one cannot explore spiritual beliefs and practices from an evidence-based approach?

In a journey that I started a little over a year ago, I stumbled along many different paths to try to use scientific evidence to answer the question of how one should approach patients and family members who hope for a miracle. Luckily, I had some of the very best minds helping me along, including the likes of Ken Rosenfeld, Erik Fromme, Dan Sulmasy, and Bob Arnold.

I began my journey with trying to answer the question of what constitutes a miracle and whether they actually occur in medicine. You can try to separate these questions, but to answer the latter, you would need to first define the former.

I first stumbled upon Littlewood's law of miracles, which fit perfectly with my representation of the world and meaning of the word miracle. Littlewood defined a miracle as an exceptional event of special significance occurring at a frequency of one in a million. Littlewood estimated that, if an awake human typically experiences one exceptional or unexceptional event per second over the course of the 8 hours they are awake, then in 35 days he/she will have experienced about one million events (both exceptional and unexceptional).  Therefore, a miracle using Littlewoods definition would be commonplace, and should be expected to occur on average every 35 days.  For an ICU operating 24 hours a day, miracles would be even more common, happening every 12 days.

I was thankfully quickly redirected by my team of mentors, who highlighted the central difference between my (the clinician's) view of a miracle as a very rarely occurring event, and many patients' & families' view of a miracle as something that occurs not by chance but as a function of divine intervention. "Crap", I thought to myself, how do I tackle the divine using evidence based medicine?

Taking the standpoint of the patient and family, rather than the clinician, helped in finding a way to deal with this question.  The question for the clinician isn’t really whether miracles happen, but rather what they mean to patients & families and how we can support patients & families with their meaning. So, together, we came up with a different plan, one that attempted to answer the following questions:
  • Among the general public, what is the prevalence of the belief in miracles or divine intervention?
  • Among patients with advanced illness or their surrogates, what is the meaning of “hoping for a miracle” in the context of medical decision making?
  • Among patients with advanced illness or their surrogates, does the belief in miracles or divine intervention influence medical decision making?
  • Among patients with advanced illness or their surrogates who hope for miracles, does the support of spiritual needs by medical teams decrease the likelihood of aggressive end-of-life care or improve bereavement outcomes?
  • Among patients or surrogates who hope for miracles, is there a communication approach that decreases the likelihood of aggressive end-of-life care or improves bereavement outcomes?

The answers to these questions were not easy to come by, and often, there was a dearth of good literature on the subject. However, from the literature that we did come across, I learned some very important lessons. The most important to me from a clinical standpoint is that all of the evidence points to the fact that belief in miracles is not only common among those we care for, but this belief plays a crucial and under-recognized role in medical decision-making. 

You can read more about the answers to these 5 questions in the paper we just published in the Journal of Pain and Symptom Management titled: "Approaching Patients and Family Members Who Hope for a Miracle."

This paper was probably one of the most challenging for me to get my head around, so I'd love to hear your feedback. Specifically, would you have taken a different approach & would you ask different questions than the ones we asked?

Thanks,

Eric

8 comments:

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Cyndi, RN, OCN, PCRN said...

After 32 years as a nurse, I have seen miracles. But very few...

To me, a miracle is where everyone is shaking their heads saying, "This is terrible. They should stop this. There is no hope... (the nature of hope is a whole other discussion)
And then the patient somehow turned around and got better (sometimes even totally better--coming back to thank the ICU nurses after graduating college or some other big event)

But I've also come to the personal conclusion that we just can't kill some folks! Some people just get better against all odds. With or without our interventions! I think that if we hadn't kept doing all of our aggressive interventions, these are the folks that would have survived anyway...

Miracles are all about faith. If you believe that God is intervening, why does He need us to do dramatic, painful, expensive "stuff" to make it happen?

But that's just my opinion...

Lindsey Yourman said...

I like the way that William Placher, a theological scholar, tries to reconcile how people conceptualized miracles in the far past vs. today. He argues that those living 2000 years ago would not comprehend today's notion of a miracle, namely when God causes something to happen beyond the laws of nature. For these ancient people, there wasn't a "law of nature" to violate and miraculous events weren't "supernatural" in the way we understand the term. Rather, they were part of the natural order of things, an order controlled at every level by the will of God. A miracle was when God did things differently or more dramatically to draw attention towards Himself. In this way, miracles could bring people to faith. Placher then argues that if those people from ancient times were living today, they would define a miracle as "something extraordinary that happens in life which opens our eyes to the presence of God in a new and profound way." In other words, Placher is arguing that a miracle is an EXPERIENCE, not a causal explanation or prediction of a scientifically improbable event. He concludes that to operate with an ancient understanding of miracles in our world today is anachronistic and missing the true significance of a miracle as it was originally described in religious texts.

It seems like this way of thinking has potential to help doctors that are athiest or don't like to put faith in improbable events, find common ground with those who are religious or believe that God can override scientific principles. Not sure how this potential common ground (which is a bit semantic) can facilitate medical decision-making, but at least everyone can agree that a miracle does not have to involve defiance of scientific principles . . . rather, at its essence, a miracle is an experience of something transcendent that leads to a more peaceful, enlightened, or spiritual state of being . . .

George Handzo said...

As a chaplain, part of the issue for me is how one looks at suffering. We often think of suffering being directly related to pain. However, I've seen many patients who suffer more if they have to do something against their religious beliefs even if they then have to endure more pain. So, for many people "giving up" is a denial of their faith and, they believe, shows God that they are not really faithful which they believe can put them in mortal danger. In their dire situation, the only thing that keeps them together is their faith and they will hold on to it at all costs.

Jim Siegel said...

“Do you believe in miracles?”

That’s what sportscaster Al Michaels cried out when the United States hockey team defeated the Russian team 4-3 in the 1980 Winter Olympics for one of the greatest upsets in sports history.

That call still gives me chills 31 years later.

You can here it on YouTube: http://www.youtube.com/watch?v=QTev5pSuYLk

I think many of us want, at least at first, to believe in miracles when confronted with a terminal diagnosis.

But reality intervenes.

On December 26, 1968 my father, at the relatively young age of 59, suffered a devastating cerebral hemorrhage. The neurologist told our family that the damage was so severe that Dad would never be able to function beyond a vegetative state. We held out no hope for a miracle. On February 1st Dad died.

In 2004 my mother was diagnosed with her third bout of non-Hodgkins lymphoma. She had survived it twice, and this time her oncologist, whom she trusted very much, was not hopeful. She and the rest of us envisioned no miracle. Mom decided to forego treatment. After two months of home hospice care, and her final day in a hospice facility, she died just short of her 90th birthday.

This point from the abstract is, I think, very important: "There is a growing amount of evidence that suggests end-of-life outcomes improve with the provision of spiritual support from medical teams, as well as with a proactive approach to medical decision making that values statements given by patients and family members."

Thank you to Dr. Widera and colleagues for probing into and writing about this important issue, and for those who got me thinking even more with your comments.

Julie Thai said...

I think the greatest miracle in medicine would be my acceptance to a medical school...

...but on a more serious note, this was a thought-provoking post that hit upon how healthcare decisions may be made; that is, with the belief that miracles - a thin sliver of hope transformed into an odds-defying event - can happen.

Albert Einstein said, "There are two ways you can live your life - one as though nothing is a miracle. The other as though everything is a miracle."

Many people who possess strong spiritual beliefs tend to live life in the latter mindset. They see miracles on the most minute levels and consciously choose to believe that what some people deem conincidences or flukes are indeed divine interventions. It is these people who take more risks when making healthcare decisions whether as the patient or as the surrogate decision maker. They make the decisions believing God or some higher power will intervene and answer their prayers.

Miracles don't happen without effort and risks, though. That is, they only tend to appear when hope is minimal and when the desired outcome (i.e. the miracle) seems most unlikely. That is when people feel this inexplicable push to make major decisions that they would not make otherwise. Medicine offers hope, but terminal diagnoses can greatly diminish that hope. This is when miracles are needed and sometimes occur.

lindaingalls said...

Hmmm, interesting post and study. I have been an RN since 1975 and began ICU in 1981; my sub-specialty is end of life in ICU. From my experience, people’s religious beliefs most definitely impact plan of care and the bereavement process afterwards. From my “experiential evidence” there is no carte blanche answer on how to approach this. For me, it is best to listen to the patient and surrogate(s) on the verbal level, the non-verbal-physical level, and the non verbal – non physical level and go from there. I have found that people have religious beliefs for a variety of reasons and paying attention to their issues and what they need allows me to “Flow” within the parameters of their beliefs in order to support them, meet their needs, and guide them to making decisions based upon Love. In this way I have been able to help people reframe the entire dying and bereavement process to a more favorable outcome for all.

In order to do this, I have had to be aware of ME; what I believe, where I may have matching pictures, am I grounded and centered, am I mood matching, what is my intent? Knowing all of this enables me to act rather than to react and to try to control.

Evidence says that fire burns and, yes, it does; but, dude, I have walked on fire six times after getting into a successful communication with it. I did notice a small burn afterwards but immediately sat on the ground got back into communication and the burn disappeared. Evidence says that an untreated, humongous cold sore will take days or weeks to heal, but, I have sat in front of a mirror and using my intent and imagination watched that cold sore disappear in a matter of hours. Evidence would say that being in Costa Rica during the rainy season when the bugs came out and infested everyone’s hotel rooms that it was going to be a sucky week, but, after communicating with the bugs, dealing with my fear and setting an energy of Love, my room alone was bug free for the entire 7 days.

My experiences with my patients have made me evolve even when I didn’t want to. They, coupled with my personal experiences have made the ME I am today. I can utilize evidence based practice as a starting point, but I do not allow “Common Sense”, “Collective Agreement and Perception of Truth”, or anything else to create a box that limits me professionally or personally. I am grateful to have learned that I can merge all of that “framework” with “possibility”. Having done this enables me to flow to great extents with my patients and their surrogates; and it makes a difference.

I applaud the work you and others who read this blog are trying to do. It is awesome! I don’t know if anything I have said will help you or not. If you do find it helpful, I am happy to discuss it more with you. All of my information is based upon experience and not research, however, I have written and recently published my memoir of the work I have done with my patients. I also published, in 2003, a small, informational guide book, written in lay language for anyone, regarding end of life issue pre and during critical illness. Both of these books are available on Amazon.com. I also wrote the featured article in the Home Health Care and Management Practice Journal’s issue on end of life care.

I look forward to following this blog and reading the posts.

Thanks,

Linda Ingalls RN CCRN
imlindai@hotmail.com
www.lindaingalls.wordpress.com

mdsilverman22 said...

A friend of mine suffered a terrible accident when he was 15 (this was back in the 60s) and he was burned in a gasoline fire so badly that 80 percent of his skin was burnt. The doctors initially didn't think he would live. Fortunately he survived, but the doctors then said that he would be badly disfigured for his entire life, with scars all over his body. Over a period of several years, God miraculously healed him so that all of his scars disappeared. I recently created a short documentary on his story you can watch for free at http://bit.ly/vtFs1g - You can click on the image and determine for yourself whether this was actually a miracle.

After directing, editing the video, and talking with the people involved, I think this case is either a miracle, or at least someone who experienced a healing that is a mystery to everyone who witnessed it. It didn't happen in one moment, it happened over several years, and it shows that these events (whether miracles or mysterious healings) do occur even today.