Review of "Proof of Heaven"

Here on this blog and recently, at a medical appointment, while speaking to another patient, the book, "Proof of Heaven" by Eben Alexander was mentioned. Dr. Alexander is a fellow neurosurgeon who has experienced being a patient.

His illness, from which he has made an excellent recovery, was meningitis. He was in coma for about a week. He describes his memories of the experience interspersed with the medical events that were happening. While, this is an excellent technique for telling his story and making sense of his experiences, I wonder if the timing was really as he described. The experience of time when one is unconscious is likely very different than when awake. Recently, there has been research that suggest that there is a burst of electrical activity in the brain just before death (http://www.telegraph.co.uk/health/healthnews/7785944/A-cascade-of-brain-activity-as-people-die-could-explain-near-death-experiences.html). So, I wonder if many of his memories are either from the time that he was just lapsing into coma or emerging from it. But, even so, one has to discuss the issue of what he experienced.

Clearly, many people have electrical activity of the brain when they are dying or almost dying. It is from this latter group, the survivors, that we hear about near death experiences. For Dr. Alexander, they involve two major groups of images, first that of a soup in which he sees faces, first grotesque animal faces and later recognizable human faces; and second that of riding on a butterfly with a woman who is acting as his guide of heaven. Only after his recovery does he learn that this woman appeared to be his biological sister who had died, though he had never met her since he had been given up for adoption as an infant. By the time of his illness, he had met other biological relatives.

Many other survivors of near death experiences have reported a light filled tunnel or images of a deity. Others report a sensation of floating above their physical body. It seems probable that prior life experience and belief systems may influence the near death experience. For example, Dr. Alexander mentioned his love of  skydiving, describing two sunset dives, including one where his quick reactions saved another skydiver. While there are similarities in some near death experiences, there are also differences suggesting that something more individual influences the experience as well.

As people are dying, there is also a surge in endorphins (natural opiates in the body) which helps to make people feel more at peace. This has been proposed to be a way that animals developed to lose connection to the pain of being attacked by a predator. No matter the reason, it does seem that as death nears, both humans and other animals seem to become more peaceful. To me this is a suggestion of a kindness of nature or a creator.

I have never had a near death experience, though I have experienced things I cannot explain. The first was many years ago when I was struggling with life choices. I felt a presence and a light and a peacefulness telling me that I would know what to do. At that time, my mother was recovering from cancer surgery nearly ten years before her death due to another cause. The second was in the months leading up to my mother's death. I would rehearse running a code (resuscitation) nightly in my dreams, knowing that I was running it on someone I knew and loved, though I never saw the face. These dreams ended abruptly after I ran the code on my mother in a Spanish hospital since they routinely did not resuscitate patients there who were dying. After her death, I have felt her presence many times. (Much of this experience was described in an article I wrote a couple years ago: http://www.physicianspractice.com/work-life-balance/content/article/1462168/2041808.)  For me, the  rehearsal dreams are the most difficult to explain. They started several months before her death. How could I know that I would need to run a code on my own mother? We were living on separate continents at the time. She had recently been given a clean bill of health by her oncologist with respect to her breast cancer. Why did I know to memorize doses of medications which are usually ordered as "an amp(ule) of ..." in the US during code situations? Yet somehow I did know those details.

While I find Dr. Alexander's book to be an interesting read and I have learned more about him as a person, I am still left with the sense that the interpretation is dependent on a belief system. For me, this is better as I think the mystical is not fully knowable or provable. Yet, for those of us who have experienced it in some way, it is certainly real.

Death

There is a common joke among physicians, "No one gets out of this life alive." This joke hints at the discomfort many physicians feel about death. Being a patient or a family member of a patient helps us to be better physicians. Because of going through the experience of suffering helps us to learn to be more empathetic. Unfortunately, too often, being a physician does not prepare us to be either patients or family of patients.

A few weeks ago a friend died after a brief illness. Because he had been relatively well until a few days earlier, it was unexpected. Even, once he was admitted, I was hopeful that he would recover. But as I was considering going to the hospital to visit, I learned that he had died. This death, like each other, reminds me of the deaths of my parents and my own mortality. And it is that personal connection that helps us to feel empathy for our patients.

As physicians, we must shield ourselves from becoming too connected since it would be difficult to continue to function if we become overwhelmed with grief. Rather, we must continue to be rational in the care of patients, rather than becoming lost in our own emotions. Otherwise we would not be able to be good physicians and provide the best care we can for our patients. But we must allow the human connection to be seen by the patient and their family. That human connection is empathy. A few tears (at least from a female physician, though I think this may play differently for a male physician in American culture) or a touch can help to convey that connection. I think this connection can help heal both the family and the physician.

During my last year of medical school, my mother died very unexpectedly while we were on vacation. It was very traumatic for me, but also helped me to become more empathetic.  I even had to learn again to shield myself, as I began to cry when I had to run a code a few months after her death. The emotions were still too raw. Fortunately, the patient was one who had no chance of survival, so my emotions did not alter the outcome. A couple years ago I wrote about my mother's death. Here is the link:  http://www.physicianspractice.com/work-life-balance/content/article/1462168/2041808 Even all these years later, it was a difficult and painful experience to write about since the emotions again resurfaced.

As physicians we see death far more often than the average person, yet we are affected in similar, human ways. Yet, we must both control our emotions and show our empathy. That is a very difficult balance, but one I hope more physicians strive to achieve.

Delivering Bad News

Even as a student, I realized that it was important to deliver bad news honestly but with a bit of hope, if at all possible. I watched my mentors. Some did this well, some poorly. I tried to emulate those who did it well. As my career progressed, I became more comfortable with delivering bad news to patients and families, whether it was the family of the brain dead trauma patient or the newly diagnosed brain tumor patient. Clearly, these were very different situations and I realized that my approach differed in the two situations.

First, in the case of the unexpected, irreversible situation, I don't think a brief encounter is adequate. It is just too much for someone to process. It seems that it takes about three encounters to get the family to the stage when they can actually process the news.  The first usually involves discussing the severity of the injury and poor prognosis. The second involves a reexamination and discussion of the likely irreversibility and the plan for further evaluation. The third also involves reexamination and giving the results of the further evaluation. In the case of brain death, this is when I say the patient is "dead." Most people don't understand the term "brain dead" so I try to avoid using it. It is at this time that I bring up the discussion of "what comes next." I try to arrange to have the chaplain or social worker there for this discussion. In the case of brain death, I also like to arrange to have the organ procurement personnel available, so that I can introduce them once the family has had a bit of time with their feelings, with a support person if desired. In this way, the "hope" can be the opportunity to give another the chance to live, since unfortunately this is not possible for the patient.

The case of cancer is much different, in that sometimes the discussion takes place in an outpatient setting, but rarely on a one encounter basis. First, the patient learns there is something wrong, then gets a scan, then usually has a surgery, then gets the results of the pathology. Similar to the trauma situation, this series of discussion helps to prepare the patient and family to hear the news. But, still, there has to be some hope, here in terms of suggesting treatments that make offer some chance at quality, even if there is limited potential of prolonging life.  

I think my early sensitivity was because of seeing how my mother was initially affected when she was told that she had breast cancer. She was initially destroyed, but then came to realize that she still had a life to live. She died years later of unrelated causes while traveling. Her cancer had remained under good control throughout. I also observed others with cancer who kept going and even took on new projects such as remodeling a home or taking on a new career, and continue to do well many years out. It seemed important to encourage this focus on continuing to live, not preparing to die. There had to be the flicker of hope in the midst of the bad news lest the patient fall into despair.

Any of these discussions take time. Sometimes, it's just necessary to be available while the family processes the information. But, other times, the discussion itself can be more lengthy. Simply delivering the news and leaving may devastate the patient or family. They may not know what happens next and so it is helpful to offer some guidance, even if it is limited.

And, in my experience, touch is very important. Not the impersonal, clinical touch of an examination, but a gentle hand or even a hug might be appropriate, and reassuring that, even in the absence of being able to offer a medical solution to the problem, the physician will be available in a human, caring way. As physicians, we have been taught to be objective, but distancing ourselves at this point may serve more to protect our feelings than to help the patient. Even shedding a tear with the patient and family will show that the physician cares, and they have often been appreciative in my experience.

My experiences as a patient being given bad news have at times left me in tears, while at other times given me hope for the future. The sense of caring and hope which I have at times been given make me want to go forward. Even more than the details of the news being delivered. I don't think it is false hope, but rather motivation to survive.

Loss of Control

When we become patients, we are no longer in control. One must do this to undergo surgery, and even for some other treatments. So one must be able to trust that someone else will make the best decisions for you. For physicians, who are frequently "control freaks," this surrender of control can be quite difficult. We often do what we can to try to maintain the semblance of control of self, the semblance of normalcy. And, I would suggest that this is something good if it doesn't interfere with necessary treatment.

Many years ago, I cared for one of the faculty members at the institution where I trained. He was a neuroradiologist and an excellent teacher. I had really enjoyed learning from him. One weekend he suffered a subarachnoid hemorrhage. He was brought to the emergency room and underwent multiple studies over the course of the day. He insisted on seeing each of the studies himself. I held the films up for him to look at as he was flat on his back on a gurney. As he reviewed them, he would talk to me about the findings like he was teaching about any other patient. Later he went to the intensive care unit and I put in lines for monitoring. He calmly tolerated the days of being tethered to the monitors. After he was freed from the tethers, he found the stash of films that the neurosurgery residents kept on the unit to show to the attendings at the time of rounds. He would review them and call me with the results. Many of these calls were in the middle of the night, about problems which had already been addressed. But, it was important for his sense of self as a physician, as a radiologist, to do this. It gave him a familiar sense of control over his position. He was not just a patient. Instead he was helping to care for patients.

Similarly, on a visit to an expert on my problem, we spent much of the visit discussing research and implications for treatment. As my friend who accompanied me on the visit and was the note taker commented after we left that it wasn't a normal consultation since the expert knew that I was also a physician. Very early in the conversation, the expert commented that there was no data available on what the best treatment in my situation is. He then went on to discuss the available data on my problem and related diseases and suggest a treatment plan by extrapolating from what was known. He also mentioned chemotherapy agents that have not been shown effective yet in my disease but have benefit in diseases with similar genetic aberrations. This sounded promising to me, since tumor genetics seems to be a good way to design therapy regimens. But, he reminded me there is no data there yet. Overall, I found the consultation quite helpful, though little new was suggested for the near term. But one possible modification of treatment he suggested may be helpful in the future.

As my friend suggested, this discussion would not have been appropriate for an average patient. But for me, it helped to give me more understanding of my disease and a sense of control, since some of the research he discussed paralleled treatment approaches for diseases I treat in patients. Even the sense of extrapolating from other diseases seemed familiar and comforting since one disease in which I have been interested for some time is also quite rare. I felt like a colleague rather than a helpless patient. It was the right approach for me. It gave me a sense of control.

It is important for all patients to have that sense of control, at least to the extent possible. To not be in control is to be a victim. To be in control is to play an active role in one's life. This is not only good from the psychological perspective, but also people who have a more positive outlook seem to live longer and certainly have a better quality of life. This may be related to activity of the immune system, which seems to be less active in depressed people. It is important to have something to live for.

Religious Differences

Many years ago, medicine was a priesthood. There was little that the physician could offer the patient beyond compassion and prayer. Now western medicine it is increasingly scientific and technological. This has made some diseases more treatable. Many patients survive who might not have without the knowledge and innovations we now have. But, not everyone opts for the same treatment. Why? Because everyone has their own belief system.

Several months ago, I had a patient with a malignant brain tumor that I operated on. She regularly did juice cleanses. Yet, despite the fact that this had not prevented her tumor, she thought it would be able to treat it. Her tumor has continued to progress at a rate consistent with that of  patients receiving no treatment. I've had many other patients who have tried a variety of other "alternative" treatments for their cancers. So far, I have seen little benefit. But, I have seen several patients bankrupted by some of the "alternative" practitioners who demanded payment in advance. Yet these same practitioners accuse conventional providers of scamming the patient to make money. I have never seen conventional practitioners demand payment in full in advance except for purely elective services. I do not deny that medicine has become a business, but most of the physicians I know are not seeing their patients simply in terms of how much they pay. And most hospitals seem willing to work out payment plans if needed.

Recently I read Paul Offit's book on "alternative" medicine. It makes a lot of good points, the most significant being that there is medicine that works and medicine that doesn't. Once something is established as having benefit it is added to the armamentarium of those who practice scientifically based medicine. Many standard medications evolved from herbal remedies once data on their effectiveness became available.

Do You Believe in Magic? The Sense and Nonsense of Alternative Medicine
by Paul A Offit MD

But even within conventional medicine, there are differences in opinion. This is most common where there is a lack of data. But, we all have our biases. I am a neurosurgeon who has additional training in neuro-oncology. I have been involved in treating and following patients who have been treated with chemotherapy, immunotherapy and radiation in addition to surgery. While each of these treatments has risks, they also have benefits. Only when we treat enough patients does the optimal treatment become clear. And even so, that is statistically the best. Individuals may still have side effects and complications. 

A close friend who had accompanied me to several appointments. He, too, has faced cancer. But he is a medical toxicologist. He has seen patients who have had complications of chemotherapy. So, he is more reluctant to consider it unless there is data showing a real advantage. But, where there is such data, he is cautiously in agreement. I have experienced a similar bias in another area. Female hormones such as those in birth control pills may lead to strokes. Sometimes these require neurosurgical intervention. So, I know that I have had a bias against hormonal birth control methods. Yet, millions of women take these without ill effect. 

So, each of us comes to our decisions based on our experience. That gives us a set of biases in terms of deciding on treatment for our patients or ourselves. Sometimes these biases seem absolute, almost like a religious belief. For myself, I would like to have what has been shown to work the best in the most patients with similar disease. And that is what I recommend for my patients. In the absence of such data, one has to extrapolate from what is known to make the best choice. And still, I would ask experts for their opinions. 

Fear of Surgery

As a surgeon, it is difficult to be a patient. Perhaps this is why there are so many comments about doctors and nurses being 'bad' patients. We know too much.  Enough to be scared. We know about risks.  After all, we talk about them everytime we consent a patient for surgery. We review complications and deaths with our colleagues in the attempt to improve care for future patients. And perhaps some of us went into medicine in the hopes of cheating death. But, everyone of us is human and subject to illness and death just like every other living being on the planet.

The fear is not limited to health care professionals. About a year ago, in a Morbidity and Mortality Conference, we discussed a patient who has had a bad outcome.  He seemed to be doing well before a routine surgery, and only hints of the problems to come immediately after.  Everyone on the surgical team agreed the surgery was appropriate and indicated for the problem at hand.  Everyone agreed at the conference today.  But, before the surgery the patient was resistant until his family talked him into it, then he wanted to proceed, and asked that it be done.

Many times I have had patients initially afraid of surgery then change their minds and ask to proceed.  Most of the time things go well, but sometimes not.  It seems reasonable to be a bit afraid to undergo surgery.  I know I was afraid before my knee surgery, but it went well.  I wasn't actually as afraid of the surgery as of the anesthesia.  I was afraid of losing control.   I had some with my appendectomy as well, but fear of a repeated rupture and the associated pain pushed me to proceed. As a General Surgical colleage said, "So pain and fear is what's pushing you to surgery?" I responded, "Absolutely. Is there any other rational reason to have surgery?" With my last surgery, I was even more afraid. Afraid of dying. Either due to the surgery or the disease. I felt that I still had much to accomplish on this planet, but still I was afraid. My children were too young. They weren't ready to be on their own. And, while most things are settled, I hadn't had the time to settle everything.

So some preoperative anxiety is probably normal. Anesthesiologists often premedicate the patient with an anxiolytic (a drug to block anxiety) before they even come to the operating room. This certainly makes sense. Seeing some of the tools we surgeons use might be even more frightening to a patient.

But what of the patient who is so afraid that he is prepared to sign out against medical advice.   What does that mean when things do go bad?  Did the patient have some sort of premonition?  I have seen it often enough that I sometimes wonder.  One place where I worked had the informal policy that a patient who cancels three times needs to see another surgeon before being rescheduled.  I have tended to follow that policy with my own patients since.

Likewise, I have sometimes had a bad feeling before surgery when I am the surgeon.  It doesn't happen often, but when there is a problem, I think afterward about my feelings.  Was I ignoring something that I should have paid attention to?  Or am I simply over thinking the problem?  Remembering my own anxiety in the situation of a less than perfect outcome?  Are premonitions something real?  Something we should pay attention to?  Is intuition just a subconscious processing of an observation that can't easily be described?

When I think of the topic of premonitions, I remember the series of dreams I had for months before my mother's death.  She was not ill, though had some chronic conditions.  And she was well enough to travel and walk for hours on cobblestones.  Hardly, someone I would have thought on the verge of death.  Yet, I had dreams for months before her death of trying to resuscitate a family member.  The dreams stopped immediately after her death.  It was as though I was rehearsing resuscitation techniques in my sleep for when I needed them to try to save my mother.  More of the details are published at:  http://www.physicianspractice.com/work-life-balance/content/article/1462168/2041808

Yet, as I think about this topic, I am left with more questions than answers.  Premonitions certainly seem real to me at times, yet I cannot come up with a scientific explanation.  The closest I can come is to say that I simply cannot put my observations into words, so get intuitive feelings about something.  Yet this doesn't apply in my mother's case, since she had been living on a different continent for eight months and I did not see her until about a week before her death.  So what kind of subtle observations could have prompted my dreams to begin two months before her death.  Yet, that is when they did.

So what do I do when I feel such a sense about surgery as the surgeon, or when a patient expresses more than the typical anxiety?  I listen.  I recheck everything to see if I am missing something.  I don't rush to the operating room.  But, if I can't find a reason not to proceed, I usually do if I think the procedure is indicated and the patient agrees.  And, most of the time everything is fine.

And, how do I feel as a patient? When it seems to be the best approach and I trust those caring for me, I have gone under the knife. But, still, I do so with some trepidation.

Experiencing the Sharp End of the Knife

Years ago, I had my first surgery and recently a second and then a third, though I am soon to have another more major surgery than either of the previous two. Each time, I have known that there was really no other reasonable choice. The day before my first surgery, I was talking to two colleagues. I commented that, up to that point, I had maintained a 'double standard' about surgery. One of my colleagues, looked stunned. He was Black and thought I was referring to race. I explained that it had nothing to do with race. I tried to treat all patients the best I could, but rather it had to do with the fact that I had done surgery on thousands of patients but no one had ever done surgery on me. I felt scared. I really didn't like the thought of being on "the sharp end of the knife." Or at least, I didn't feel comfortable as a patient, I didn't know how to feel, while I had become quite used to being a surgeon. His expression changed and he said that he certainly could understand that. That surgery went very well. I was home the same day and back to exercising within the week.

Over the past few months, I have had three more hospitalizations. During the first, I had a bedside procedure, while the last two have had more major surgeries. The most recent was the most major.

Since my recent hospitalizations, I have seen several of the people who took care of me. All have commented that I seem to be doing well. Again, during the hospitalizations, I had some times that I was scared. While in the emergency room, I was placed in a private room. I'm sure it was done to give me some privacy since I was a staff member. But it was scary for me to be alone. I was in pain and my blood pressure was quite low. I had yet to have any significant treatment. I thought they would just leave me there alone as things got worse. I thought that I might die. I worried about my children, still far too young to be on their own. I called for help, more than I truly needed it, but I didn't want to be alone. I was happy when friends and colleagues came by to visit.

My second surgery didn't go as smoothly as anticipated. Hospital stay and pain were both far more than I had anticipated. But it was still necessary and has helped to heal me.

Similarly with my most recent surgery, I had far more pain than was expected. I had an epidural placed for pain control. But it didn't work. Medication could be pushed into the catheter with no resistance, but it did not relieve the pain. And then I got a rash over much of my back, which only added to my discomfort. The first few days it seemed my pain was always 10 out of 10. I didn't want to go on. I thought about my kids. I knew that I had to survive for them. Finally, they gave me a PCA pump which helped with the pain, but didn't eliminate it. I was glad that a friend who is a nurse stayed with me through the first night and came to visit several times to help me with things as mundane as bathing. In my pain, these things just didn't seem important, but I know that I felt better each time she helped me.

Being a patient, or the family member of a patient, is certainly important for medical professionals. It can teach us a huge amount about how the patient feels and how the family feels. It can teach us how to be more compassionate as caregivers. It can help make our care better for future patients. But, the process is far from enjoyable.

Appendicitis or something more?

Seventy one years ago, my grandmother had appendicitis. She was one year older than I now am. Her presentation was not typical, leading to initial misdiagnosis and thus delay in treatment. Her appendix ruptured. She developed peritonitis and died. 

While I never met her, I feel close to her from the stories I heard about her and the photos I have of her. I recall meeting her youngest sister when I was nineteen. She had not seen my grandmother since she left Poland for America in her late teens. My great aunt insisted on calling me by my grandmother's name, which is my middle name, because I looked so much like her, though she said it looked like I had been dunked in bleach since I am a bit fairer than she was. She also commented on similar mannerisms and speech patterns, though I knew little Polish at the time and my grandmother knew no English when she left Poland. Others, too, have commented on the similarity, mistaking a photo of my grandmother and mother for my mother and me. 

A few months ago, I almost followed my grandmother. I thought I simply had the flu. Unfortunately, my appendix also ruptured. But, fortunately for me, antibiotics are now available to treat the resultant infection. While I was in the hospital sick with the infection, I thought of my grandmother who died of the same disease. I recovered from the infection. An appendectomy was scheduled two months later.

The delay was to allow the infection to quiet down in the hopes of being able to perform the appendectomy through small laparoscopic incisions. At the time of the surgery, the appendix was too large to come out through one of the laparoscopic ports, so I needed to have a longer incision anyway. I even discussed this with surgical colleagues, since I am in a different specialty. So, we waited for the infection to quiet down. I had the interval appendectomy.

Unfortunately, this is not the end of my story. The appendix contained a tumor, which was not identified until two months later when I had an interval appendectomy.At the post operative visit, I was told that the enlargement of the appendix was not simply due to the infection. That it contained a cancer. What had been a simple problem suddenly became a life changing one. I wonder if the wait allowed the tumor to grow. Was it the right thing to do in my case? I don't know, but it made sense at the time.

I had been thinking of not taking any more time off work this year due to the amount of time I took off for the first two hospitalizations. Now, time at work seemed less important. Time with my family seemed more important. I wondered how much time I would have with them. My children are still in elementary school. They still need their mother for many more years. I worried that I might not see them grown. Time to travel and show my children the world seems more important than another week of work.

The Sharp End of the Knife

Many comments are made about what 'bad' patients health professionals are. Thirty years as a surgeon have taught me how to function in the medical realm. I have learned how to care for patients, how to do a range of surgeries, how to teach others to do surgery and interact with patients. Over the years, I became comfortable in my role. But it did nothing to prepare me for being a patient. Perhaps, it even made it harder to be a patient.
I have been fortunate to have been relatively healthy until recently. But, over the past few months, I have had three hospitalizations. I had a relatively minor procedure on the first admission and surgeries on each of the next two. Facing these surgeries has been a source of stress for me, though has also taught me much.
It is very different being a patient. It is scary. For those without a medical background, I sense that it is a fear of the unknown. For health professionals, it is a fear of the known. We know what the risks are. While we work to try to make health care as safe as possible for our patients, not everything goes according to plan. Complications occur. Some patients even die during treatment, a few as a result of treatment. The risks overall may be small, but for those affected, they seem to be 100%. Despite health professionals doing their best for the patient. Despite reviewing each unexpected bad outcome to see what can be learned from it to improve care for future patients.
This blog is about of my experiences and musings of being on the sharp end of the knife.