I BEAT the odds. Twice. A car hit me, a pedestrian, in April 1993. I had undergone 2 brain surgeries to repair the damage. A stranger attacked me in October 2016, throwing me on my head, leaving me bleeding from my head on the street.
Both times, my doctors predicted bad things for my brain and me. They anticipated either death or a permanent confinement with serious brain damage. Moreover, the post–car accident doctors told me that brain-injured patients are not self-aware enough to be sure about what they know or what they are doing.
Instead, both times, I went back to work. Academic work. Writing and teaching. Once at the beginning of my career and the second time when I already held a chaired professorship at a public university's law school.
My experience has taught me that patients should always come first. That is our legal and moral right.
THE PRINCIPLE OF AUTONOMY HAS REAL MEANING FOR THE PATIENT
There is nothing good to say about beating brain injury. An injured brain is a fierce opponent, and defeating it can be a hellish experience. There is more chance of victory, however, if medical caretakers listen to their patients. There is not 1 brain injury. Each one is personal. Neuroimaging scans don't tell the whole story. Each patient has a unique and distinctive voice and injury. The more one listens to him or her, the more the patient's odds of success increase. This listening includes all the technological means that some doctors now use to communicate with patients with disorders of consciousness.1* The patient's brain often knows best.
I know this from my own experience. Twice some of my medical caretakers kept warning my family and me of my grim future. They wanted me to accept my damage and limitations. Throughout their good and bad news, however, I believed that my PhD- and JD-trained brain would be okay. And I was right.
It was not always easy for me to stay that positive. Even after I left the hospital, I had to work very diligently to cast off the negative thoughts and the fear. I remembered the first set of doctors' view that I was damaged and could not recognize my injuries. Yet I, correctly, kept my confidence in myself throughout the whole ordeal. Patients do better if all those entrusted with their care do everything they can to listen to their patients and remain positive about their patients' prospects. Even when the patient's picture looks grim and hopeless to caretakers, the patient may still have a lot of progress ahead of her.
This is what patient autonomy should mean. I teach bioethics, which always prioritizes autonomy as 1 of the 4 principles of medical care.2† The principle of autonomy requires patients to give consent for their treatment and does not let the doctor simply rule the patient's life. It also recognizes the centrality of personhood and the importance of self-determination, when it is possible.
Unfortunately, with brain injury, medical personnel often think that they know the most and the best. They are also inspired by new technology, which makes them more confident that they know the status and health of someone's brain.3‡ You can look at my scans to see how negative my pictures looked. But the pictures don't tell the whole story. Clinicians didn't know the details of their patients' lives and their determination for recovery. Ill-informed, they can call for less and not more treatment, hindering the possibility of recovery.4§
After I was released from the hospital after my attempted murder, I listened most carefully to my 2 preattack personal doctors, 1 in Las Vegas and the other in Houston. Why? Because they knew me before I was attacked. I was ready to listen to whatever they told me and take their advice, good or bad. Why? Because I knew that their opinions were based on knowing the person inside my brain and the reality of my health and life history.
Not always so with my brain's caretakers. They knew little of my background and were not interested in talking with me about it. No matter how many times I raised bioethical issues and legal cases and tried to talk about my academic background, many rehabilitation specialists changed the subject. They had a formula that they wanted every patient to follow. Many of them never spoke of a positive future because they did not believe I had one.
I had to work to show them a different story. Because of my first round of postaccident hospitalization, I knew in my brain that I had to figure out which clinicians were allies with whom I could partner. These were the people who would help me get released. I tried to work with these clinicians. And that was how I kept my patience most of the time, no matter what others said to me about my prognosis. Sometimes this was really hard especially when no one is really listening to you. My task was to find caretakers who would listen and who were deeply committed to returning me to my usual life.
THE LITTLE THINGS ARE ENORMOUS TO THE PATIENT
My next remarks may seem petty unless I remind you that my only goal as a patient was to get out of the hospital and go home. I do not even remember the attack, the 3½ weeks in a Vegas hospital, or being flown to a brain hospital in Houston, Texas. I did not have any magical awakening. One day I was simply awake in a Texas hospital, astonished at what had happened to me, and ready to go home, back to Vegas.
An experience like mine is disorienting and overwhelming. Being told that a stranger had tried to kill me. Learning that my family, friends, and colleagues had been cheering me on while I was unconscious after being attacked by a strange young man. That they had visited me repeatedly and even had me flown across the country. Despite all their help, the fear of attack and the impact, whether physical or emotional, of the injury stayed with me for a long time, even after my brain was working properly. For that reason, healthcare workers need to pay attention to their patients' basic needs, including our fundamental fears for our own physical safety and well-being and also on how we want to live.
The experience is worse if your caretakers ignore your physical needs. For example, I was always cold, as I have been throughout my life. The staff told me to change the thermostat in my hospital room. I found out at the end of my stay there that the thermostats were in fact controlled by the hospital's administrators and did not change the room's temperatures. With the room always cold, I wanted to spend more time outside in the sun to warm up. But, terrified that I would run away, my staff locked everything so that I could not get on the elevator. Some of my friends and family picked up on the fear that I would run away. If anyone had listened to me, they would have gotten me extra blankets and clothes, as my family finally did after several weeks of hearing me complain that I was cold. Incredibly, when one of my former students stopped by to visit me after I had left the hospital, the nurses who heard my name laughed about how they kept me captive.
Another issue ... my medical personnel kept giving me prescriptions to take throughout my time in the hospital. They never explained what the prescriptions were or asked for my consent. It turns out that they were giving me several laxatives. But they wouldn't talk about why. When I finally forced them to have the conversation with me, at my request they finally and unhappily stopped the prescriptions.
As my time at the brain hospital ended, 1 nurse excitedly told me that she was going to give me a brain drug that would heal me. That surprised me, as I knew I was being dismissed because I was much better. When I asked what the drug was, she did not know and could not tell me anything about it. So much for scientific healing or informed consent!
It is hard to stay positive when your world has been shattered by an attack. It is even harder when there is a lack of basic respect or sensitivity. Things that look so trivial to outsiders—heat and drugs, both parts of physical comfort—seem like they should not be so important. However, being respected as a full adult on such caretaking issues would have made a crucial difference to me and my confidence in my caretakers. Although I had suffered brain injury, I knew what was going on and they should not have treated me like they did. They should have listened to my side of the story. Again, that is what patient autonomy is all about.
PATIENTS ALWAYS NEED ADVOCATES
Faced with these challenges, patients with severe brain injury need advocates. They need people who will question everything they hear. My health got better because my people knew how to keep their eyes on the care I was receiving and understood when it fell short.
Some patients who were in the hospital with me did not get the attention that I received. Hospital personnel later told me that those patients had few caretakers and fewer visitors. So a bit of advice: Be sure to visit friends and acquaintances whenever they are hospitalized. Your presence can make a difference in the quality of care.
Fortunately, in my case, many people chose to help me. My life was saved by the generosity of both friends and strangers—those who got out of their passing cars to help stop my bleeding, witnesses who saw the murderous attack, the police who arrested my attacker, the medical personnel who worked to heal me, and the friends and colleagues who found me when I was missing. Others contacted my brother Joe, my designated medical decision maker, so that he could travel into town to make medical choices for me. My team of colleagues, friends, and relatives repeatedly visited me at the hospital to make sure that I was getting the best care. They were skeptical about the doctors' early prognostications and rejected their assumption that I had no healthy future ahead of me.
ADVANCE CARE PLANNING
Fortunately, as a lawyer who taught bioethics and had been nearly killed by a car's driver, my legal documents were up to date. Everyone should fill out their state's legal advance directive forms, identifying who should make medical decisions if you cannot, and what medical decisions you want made.
A durable power of attorney for healthcare is an important document. It is a legal document that picks a healthcare decision maker if you cannot make your own choices and spells out what procedures you do and do not want.5 Many people avoid completing these forms for all kinds of personal reasons. I can tell you honestly, that is always a mistake. Those documents need to be in place in case anything happens to you.
My durable power of attorney was on file with the Nevada Living Will Lockbox so that anyone could find it. As they eventually did. The forms named my brother Joe as my medical decision maker and my law school classmate Joan H. Krause as my financial decision maker.
An accident, attack, or other medical crisis could happen to you. I know that's hard to believe. I still can't believe that it happened to me TWICE. Yet, even though I had filled out the forms, nearly everyone was worried that he or she needed to know more about what I would want and not want. So filling out the forms is not enough. Every individual should tell his or her family or friends who are named in advance directive that they're on the documents and what that means. Fill out your documents and talk through with your chosen representatives about what you want done. Everyone disagrees on medical treatment, so it is imperative that you pick someone who will make the choices that you want. Avoid choosing someone who will do the opposite, chosen just because he or she is a close family member or friend. This is important. I speak from experience.
Medical caretakers need to be aware of what the documents say and who is in charge. Otherwise they wind up making their own paternalistic decisions for the patient instead of the one the patient wanted through her representative. That happens far too often. I prefer the patient-centered approach of Dr Adrian Owen, who explained,
What began as a scientific journey more than twenty years ago, a quest to unlock the mysteries of the human brain, evolved over time into a different kind of journey altogether: a quest to pull people out of the void, to ferry them back from the gray zone, so they can once again take their place among us in the land of the living.1
INSURANCE AND MONEY SHOULD NOT MAKE ALL THE CALLS
Unlike many of my fellow patients, as an employee of the State of Nevada I had good health insurance. Fortunately, most of my more than $500 000 in medical expenses was covered by my insurance, and the state's crime victims' center repaid some of my own expenses.
Even with good benefits, it was an ordeal for me to have to check and follow so many hospital bills postrecovery. This remained a burden long after I had left the hospital. Some were correct but others were not. Imagine how terrible it is for people who have to struggle to pay their whole medical bill by themselves without adequate coverage. That financial burden could be life-shattering.
Having lived through 2 brain- and life-threatening incidents, I believe that everyone should have health insurance. Life's medical events can surprise anyone, as they have now twice upended my life. Rich or poor, young or old, healthcare coverage is essential when things go wrong. Healthcare needs can arrive as a complete and unprepared-for surprise. Believe me, they can and do, no matter how great your life is up to the moment when disaster strikes.
The insurance company is not as committed to recovery as the patient. Even though I had good insurance, I received adequate coverage only because one of my law school colleagues is a health law professor who has worked extensively with healthcare providers. In Las Vegas, my insurance company tried to move me from the Vegas hospital to a local rehab home because I had not “improved” in my first 2 weeks of coverage. In my colleague's words,
a hospital case worker attempted to discharge Professor Griffin to a local nursing home at the end of the second week, stating that insurance would not cover the scholar's transfer to a specialized brain rehabilitation facility because she was not improving fast enough.6¶
In contrast to the insurers, my family and friends wanted to get me admitted to a specialized brain rehabilitation facility, where I would have a much better chance of thorough, brain-centered care than in the nursing home. My colleague, UNLV health law Professor Stacey Tovino, spent tons of time speaking on the phone with insurance representatives. Without her help, I would not have gotten flown to a top brain hospital in Houston, Texas. She later wrote an article noting my initial “disorder of consciousness,” and how insurance laws keep many patients from full treatment based on a limited understanding of how fast a patient's health can improve.7∥ Two weeks is much too soon to give up on a patient. I am fine today even though I had not improved much over the first 2 postattack weeks. Still, my friends and family had noted slow improvement that the insurance company could not see.
Caroline Schnakers and colleagues8 have demonstrated that more than 40% of patients in chronic care who are thought vegetative are minimally conscious. Without accurate diagnosis and full care, their lives would be much more restricted than they should be.9# They lived, “isolated and abandoned,”10 without the medical care that is every person's civil right.11 Brain recovery can be a long and slow process, and we need to work with it instead of against it. Trying to heal everyone is a much better choice than sending them off to chronic care thinking that it is too late for them to benefit from full care and comprehensive rehabilitation.
Moreover, insurance disagreements affected how much time I had to spend in the Houston brain hospital before being transferred to an inpatient rehab center there. Patients and their representatives have to control their own healthcare and keep careful watch on what the insurance companies do.
With help from the Houston hospitals, I was back in Vegas within several months. But even I did not recover as fast as insurance's rules, which would not have allowed me to recover in a center devoted to brain rehabilitation.
FROM INPATIENT TO OUTPATIENT STATUS
Fortunately, my autonomy was promoted by some medical personnel. On 1 occasion, I chose to attend a sociologist's lecture at Rice University, which was not too far from my inpatient rehab facility. I went with an aide who quickly appreciated that I knew how to get around town and, more importantly, understood what the lecturer was talking about. She joined the list of other experts caring for me who advocated my move to outpatient status. She realized that I was well enough to move on and heal. I didn't need to stay confined in an inpatient setting.
When I was discharged from inpatient to outpatient care, I lived in a Houston hotel and then with friends. Getting outpatient appointments was difficult because it was just before the Christmas holidays. My first appointment was over 2 weeks after my discharge. My family doctor assured me that this was due to the December end-of-the-year business cycle and not, as I worried, due to my inability to make effective telephone calls. It would have been much better for my inpatient rehab hospital to pay more attention to scheduling. As I waited for that date, I went to the gym every day, even hiring friends' trainers for scheduled workouts. I was using my hard-won autonomy in the service of my own recovery.
When I did see the rehab therapists, none could find anything intellectually wrong with me. They all agreed that my brain was okay and that my usual, daily intellectual work would not be impossible. My balance did need more attention but they believed that I could relearn balance at home, standing on 1 foot in front of the TV. I agreed with them about that. I also agreed with them that I would have to work hard to regain the 10 lb of muscle mass I had lost. Happily, we all agreed that my Nevada trainer—not a Houston rehab person—could help me achieve that restrengthening goal. So it was time to go home. I flew alone back to Las Vegas a couple of months after I was assaulted.
POSTDISCHARGE LIFE IS STILL HARD
A week later, my athletic coach taught me to stay positive every day, recognizing that physical strength and fitness are developed 1 day at a time. I appreciated his constant support. His advice to stay positive, not negative was critical. After brain injury, it can be very hard to stay positive. Living alone, postattack, is much more frightening than living alone preattack.
Staying positive can be a difficult endeavor for brain injury patients. I have met patients with all sorts of brain injuries: traumatic brain injury, aphasia, stroke, dementia, and Alzheimer disease. Some of them are recovering fully and some are not. Some of their family members and friends have abandoned them, not wanting to live or work with someone who has brain damage. Their ordeals, and those of their family or medical caretakers, can be awful to endure. Many of them do not see much hope in their circumstances. We need to take more positive efforts to ensure that they are living and not just safe.
Trauma afflicts people who face all kinds of illness and attack. For example, California Congresswoman Jackie Speier, who was seriously shot in 1978 while visiting Jim Jones' Jonestown Peoples Temple in Guyana, writes that, even today, “a car backfiring or a violent scene in a movie still reverberates through me. Fireworks continue to make me tremble. Twenty-one-gun salutes terrify me.”12 While living with such trauma, Speier has had a fabulous postattack career. Trauma influences all of us former patients in numerous and different ways.
I understand and share their suffering. After a brain injury, one has to start life over, in many ways. In a sense, one has to prove that one can really work and that the injury has not left a permanent impact. In many ways, I felt like I was restarting my academic career, just proving to everyone that I was really okay. People with more serious brain injuries have much harder lessons to learn and lives to live.
Although my story ended with me well and healthy, I endured many terrible and terrifying moments. While I was hospitalized and awake, I spent every minute calculating what I could do to get out of the hospital. In both hospitals, I dealt with a different caretaker almost every day. I had to determine who would listen to me and who would not. I had to figure out what actions would prove that I was healthy, not brain damaged. I had to gauge what to do when some of my caretakers ignored my steady requests for relief. I had to constantly beg medical personnel to deal with me, that is, with this specific patient. These tests continue once you are released.
But 1 group of people best understood what I went through: my fellow brain injury survivors, both inside and outside the hospital. They have had the same experiences and endured the same crises. Together we shared the traumas we had faced and continued to confront. We best appreciated the enormous effort it takes to get better and how much easier it is to get through all this when you have family, friends, and caretakers by your side. But not everyone was so lucky. A lot of people lose these relationships when they confront brain injury. We all understand that healing is easier if people stay with you through thick and thin, good health and bad.
My advice to patients and their caretakers: keep talking and fighting for your recovery. It may get you out of the hospital sooner. To caregivers: please listen carefully to your patients' needs. They should come first.
1. Owen A. Into the Gray Zone: A Neuroscientist Explores the Border Between Live and Death. New York, NY: Scribner; 2017.
2. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 7th ed. Oxford: Oxford University Press; 2013.
4. Hirschi R, Rommel C, Hawryluk GW. Should we have a guard against therapeutic nihilism for patients with severe traumatic brain injury? Neural Regen Res. 2017;12:1801–1803.
6. Tovino SA. Right to care. Ala L Rev. 2018;70:183, 185.
7. Tovino SA. Right to care. Ala L Rev. 2018;70:183.
8. Schnakers C, Vanhaudenhuyse A, Gicino J, et al Diagnostic accuracy of the vegetative and minimally conscious state: clinical consensus versus standardized neurobehavioral assessment. BMC Neurol. 2009;9:35.
9. Fins JJ. Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness. Cambridge: Cambridge University Press; 2015:5.
10. Fins JJ. Why Advances in Treating Those With Brain Injuries Require Advances in Respecting Their Rights. Mid-Atlantic Ethics Committee Newsletter, 1 (Summer 2017).
11. Wright M S, Fins J J. Rehabilitation, education, and the integration of individuals with severe brain injury into civil society: towards an expanded rights agenda in response to new insights from translational neuroethics and neuroscience. Yale J Health Policy Law Ethics. 2016;16:233.
12. Speier J. Undaunted: Surviving Jonestown, Summoning Courage, and Fighting Back. New York, NY: Little A; 2018:167.
* Dr Adrian Owen explains how he used fMRI and communication with patients to learn much more about the brain activity that he did not expect to find in vegetative patients. See Owen A.
† See, for example, Beauchamp and Childress for an analysis of the principles.
‡ Dr Adrian Owen and Dr Joseph Fins and his colleague Dr Nicholas Schiff and their colleagues have used technology to uncover more about their patients' brains and communicate with them. See Fins JJ and Schiff ND.
§ See, for example, Hirschi R et al, observing “great variation in practitioner aggressiveness in different regions and even within the same department of a single hospital.”
¶ See also Fins JJ. Why advances in treating those with brain injuries require advances in respecting their rights. Mid-Atlantic Ethics Committee Newsletter, 1 (Summer 2017), who explains that patients often don't get as much rehabilitation care as they need. As he puts it at 2: “many patients who are thought to be permanently unconscious or vegetative—and thus ignored and neglected—are in fact conscious and aware.” Science is discovering the difference between vegetative states and minimally conscious—and still getting it wrong most of the time. Fins also describes Margaret Worthen's brain rewiring. See Fins JJ. Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness. New York, NY: Cambridge University Press; Fins JJ. Brain injury and the civil right we don't think about. New York Times. August 24:2017. Fins writes that patients with disorders of consciousness are “segregated, isolated and abandoned.”
∥ On Medicare policy and the improvement standard see also: Fins JJ, Wright MS, Kraft C, et al. Whither the “Improvement Standard”? Coverage for severe brain injury after Jimmo v. Sebelius. J Law Med Ethics. 2016;44(1):182–193.
# “Recent data reveals that the diagnostic error rate of patients with traumatic brain injury in nursing homes diagnosed as vegetative may in fact be as high as 40 percent, with those patients actually being in the MCS. This is troubling.”