Full Code

by Matthew Cramer

“Lord, to whom shall we go? You have the words of eternal life.”
(Jn 6:68 RSV)

Cheryl and I stood in the large ICU room watching a medical team minister to my wife and her mother — our beloved Ruth Ann. It was 2:00am and our appre-hension was rising.

The team had been working for an hour or so. The ambiance was surreal — a dimly lit room, jammed with equipment and staff. Strategically placed spotlights focused on Ruth Ann, highlighting her form.

I counted at least ten “trees”, each supporting several bags of medication whose contents dripped down through long tubes into my wife’s body. The many monitors in place flashed her vital signs and other crucial data. It was deathly silent in the room, except for the beeps and squawks of the apparatus, the sinister hissing of a lung machine and hushed conversations of the medical team.

The team included four doctors of diverse specialties and six nursing staff — all highly skilled. A live video-conference was in progress with offsite specialists at the University of Minnesota.

I turned my gaze back to Ruth Ann. She was heavily sedated and in serious jeopardy. Three stents had been implanted in her heart. The femoral artery used to accomplish the procedure had ruptured and profuse internal haemorrhage was taking place. Blood transfusions were being given frequently to counter the heavy bleeding. Her heart and lungs were in danger of drowning from excess fluid in her body.

Time seemed to stand still. And then the lead doctor approached us. If they couldn’t turn her condition around soon, prolonged attempts to do so would almost certainly lead to severe and permanent damage — even if she did survive. He asked for authorization to call a halt to their efforts, once he was convinced she would not recover. Ruth Ann’s heart would then fail.

Full Code

The first rule in medical ethics is: Do no harm. In practice, this translates to using the best medical equipment, medications, and techniques available to prevent or heal without bias physical maladies in every human being, and to respect and sustain life to the fullest possible extent.

The achievements of medical science and practices that heal and prolong life are now breathtakingly advanced. So is their complexity. Human life can be extended beyond what we might describe as its normal longevity with the help of breathing machines, resuscitation, and medications. As long as a person’s heart is beating and there is evidence of brain activity, life is said to be present, regardless of the irrevocable mental and physical damage his or her body may have suffered.

These complexities have spawned important issues related to abortion, euthanasia, assisted suicide and in vitro fertilization, to name a few. Termination-of-life issues are especially troubling, steeped as they are in highly charged emotions about the imminent death of a loved one. They are intensely personal and there are few ground rules to guide us.

Every individual deserves all possible treatments available to prolong life at its optimum level. This status is labelled Full Code. It is the default preference for anyone requesting medical care, unless a formal document exists modifying the terms of Full Code with specific instructions.

A will codifies decisions about the disposal of our material possessions after death. In medical land today, we’re asked to provide a Health Care Directive (in other words, a “living will”) that defines the type and extent of medical care we prefer or are willing to allow in life-threatening and end-of-life situations.

Two of the most familiar terms that modify Full Code are: Do Not Resuscitate (DNR) and Do Not Intubate (DNI). Resuscitation involves attempts to restart the heart if it stops. The procedures include electric shock, an injection directly administered to the heart, and chest compression. Each of these methods is used regularly and entails its own unique risks.

Intubation involves the insertion of a flexible tube in the windpipe, keeping the passageway open to facilitate other operations. Typically, it is used to administer anaesthesia during surgery and connect a lung machine to support breathing. Food is provided during long-term lung support through a tube snaked through the nose into the stomach and sometimes through the abdominal wall.

Decisions By Somebody Else ?

You can hardly seek any medical treatment today without being asked if you have a “Health Care Directive” or its equivalent. Conceptually, it all seems simple and of great practical value. All you apparently need do is consider major emotional and complicated end-of-life decisions ahead of time, decide your preferences, and codify them in a document. There are even instruction forms and lawyers to assist you in this endeavour. When end-of-life issues do occur, your wishes regarding your medical treatment are already on record — considerably easing the stress of complicated and emotional decision-making on family and administering doctors.

There is significant utilitarian value in the Health Care Directive concept. Make all the key end-of-life decisions ahead of time, devoid of intense, real-time emotions. But the devil is in the details. Modifications to Full Code call for speculation. With a good martini in hand and a hale-and-hearty mind set, you might hypothetically decide that two resuscitation attempts are all you will allow if your heart stops. But later, if you find yourself in the throes of an actual heart attack, and the first two attempts at resuscitation fail, you might desperately want to change the resuscitation number to eight.

Professional pressure approaching the intensity of evangelistic zeal confronts those who don’t have a Health Care Directive. This is especially true of older folks. In Ruth Ann’s case, doctors selling the merits of a Health Care Directive accosted us during every one of her most serious complications in the hospital. These encounters could last from half an hour to forty-five minutes. We sensed an agenda to break through the Full Code wall and authorize more medical discretion in end-of-life situations to limit procedures and treatments.

Late one night, during one of her hospital stays for an acute medical crisis, Ruth Ann and I sat talking as we contemplated the city from the windows of her room on the eighth floor. Shattering the tranquillity of the moment, one of her regular doctors burst into the room with a friend. Highly respected in their field, both launched into a tirade against our insistence on Full Code.

For more than an hour, they insisted that given her advanced years, and the number of Ruth Ann’s prior admissions to hospital for serious medical issues, she had no chance of full recovery to live a long-term full life. On the contrary, the severity and frequency of her problems would rise rapidly. Full Code would merely extend the process and prolong her suffering. More realistic and effective for Ruth Ann, they suggested, is switch to DNR and DNI.

I’ll never forget the doctor’s parting shot: “If my mother were in your condition, Ruth Ann, I wouldn’t risk the pain and suffering she’d endure, while her body failed one piece at a time. I’d put her on DNR/DNI.”

A brutally unambiguous message had been conveyed to both of us with the unerring accuracy of a skilfully aimed bullet: Ruth Ann had no chance of recovering sufficiently to carry on with her life and more suffering would ensue in a protracted process that would lead inexorably to her death. If we knew what was good for her, we should bow to the decision of the doctors and let them determine when to end it all.

I was infuriated by the man’s shocking arrogance and his deliberate attempt to snuff out all hope as he tried to lend substance to our worst fears. But sorely tempted though I was to do so, I didn’t eject him from the room. Instead, I sensed a clear and chilling apprehension deep in my spirit: One way or another, very soon after a change to DNR/DNI, Ruth Ann would be dead.

I am not trying to disparage the medical profession as a whole or any of its members who administered to Ruth Ann. The medical care she received during her three and a half-year Odyssey has been excellent, exceptional, and frequently, awe-inspiring. The professionals have consistently prioritized her needs as their highest concern. I am the first to acknowledge that many, many highly skilled professionals, well motivated to serve those in need, populate the medical field. Nevertheless, creeping into the process are agendas at odds with the Hippocratic Oath, motivated by utility and cost-effectiveness.

Whose Values Rule?

There is a ubiquitous and pernicious concept lurking among these issues — what some refer to as the “quality of life”. This too sounds very simple at first glance. Who wouldn’t want to, say, rid themselves of arthritis, get a raise, buy a new car, or cure their asthma? Clearly, improving or protecting the quality of life is a good, a target to aim for.

But the quality of life can also be a subterfuge of sorts, justifying actions that break with traditional values about the sanctity of life: for example, abortion, euthanasia, termination of foetuses afflicted with Down’s Syndrome, and denying Granny medical procedures because they aren’t cost-effective. Every one of these travesties of justice and fair play, along with many related others, are justified as improving someone’s quality of life — often on specious grounds — but to the devastating detriment of another’s.

There are practicing medical professionals who support or, at least, do not object to these travesties. My hope is they are a small and hopefully declining minority. But when Full Code is breached, every one of your specifications authorizes medical agents to exercise their own judgment, not yours. It’s possible some of those agents don’t share your particular set of values. Unfortunately, their badges don’t indicate which of them does. Your authority and principles risk being diluted, even subverted, by an ever-increasing emphasis on utilitarian factors and what is bandied about as the “quality of life”.

A doctor had entered Ruth Ann’s room one evening during yet another crisis situation. He had sat down and explained in a kind, gentle voice that she was now old; her body was failing. The number of crises her body was enduring was escalating, certain to increase and put her through still more intense suffering in the future. To bypass this inevitability, all she needed to do was decline Full Code and tell the doctors that she wanted to stop fighting for her life. Ruth Ann politely declined his suggestion, bade him goodbye, and once he had left, struggled in private to defeat the intensely negative thoughts that now had her in their grip.

To stay with Full Code opens you to the risk, in some instances, of prolonged and needless suffering. Setting up a Health Care Directive, on the other hand, involves blind, unreliable speculation of future developments. These speculative risks beget gambling with the transfer of control of your life and body to others; whose agendas might not be consistent with your own set of values. Not exactly a win-win situation.

God And Full Code

Christians confronting end-of-life situations find no easy answers. Only Almighty God can take a life. We are required to pursue all available medical expertise to heal ourselves. The Church has identified an exception for end-of-life situations: We are not required to prolong life through the use of machines and medication past the point of a reasonable expectation of recovery.

My first end-of-life decision during the episode I described above was fraught with angst. I remember looking at Ruth Ann lying there in her hospital bed. If there was any dominant feature about her, besides love, it was her indomitable will to keep going. She had been ill all her life. And yet, she pushed on.

I had every sense in my spirit that the doctor in charge was a straight shooter with no agenda other than the Hippocratic Oath to guide him. I consulted with Cheryl and Our Lord as best I could. I submitted my discernment to Him and did not receive a check in my spirit.

After agonized prayer, and in full knowledge that I might be signing her death warrant, I changed Ruth Ann’s code to DNR and DNI. The doctor acknowledged my decision and continued his efforts with his team.

Cheryl leaned over her mother and said: “Goodbye, Mom.”

Soon, the medical staff’s body language suggested Ruth Ann was beginning to respond. A bit later, the doctor announced she’d passed the danger point. There was still much work to do, but she would recover without permanent damage. Sensing that Our Lord had given my wife another shot at life, I quickly changed her status back to Full Code.

Ruth Ann and I discussed end-of-life issues with our children a number of times after her odyssey began. We considered the validity of inputs we sensed from Our Lord, the risk of speculative mistakes, and the utilitarian approach of certain doctors.

We did try to construct a Health Care Directive, but the assumptions and speculations it called for overwhelmed us. Which end-of-life issues should be specified? What circumstances should we imagine surrounding each? Did a combination or order of occurrences matter? Not trusting our ability to predict future developments with any certainty, we were forced to keep our analysis at a more general level and simply rely on a doctor’s decision to do justice in the details.

The link to peace and wisdom in end-of-life situations is (as always) our relationship with Our Lord. Ruth Ann and I have aggressively pursued a personal relationship with Him, and He has been an active participant in our lives for the last sixty years or so. Many of our encounters are recorded elsewhere in The Sandbox.

Our Lord never treats us like puppets. Free will is always unencumbered. And His guidance is always available. He is faithful, even when we are not. However, to hear and understand Him, we need to pursue the relationship regularly and aggressively, as with anyone we love.

Our experience with The Lord over many years is a significant factor in our life decisions. Slowly, over the years, our relationship has deepened. We’ve been deceived by false inputs and made human mistakes. But steadily over time, in ways unique to each of us, we’ve grown to recognize His leadings through the Holy Spirit. Different for each, I like to call His mark in my life a quiet, confident “Yes”.

One Approach

Retaining Full Code and trusting Our Lord to guide us on a case-by-case basis seemed a much simpler and more peaceful approach to our end-of-life decisions. True, it relied significantly on our ability to hear and correctly interpret His inputs. Ruth Ann had always addressed life head on, full speed ahead, pursuing His will. Her desires and attitude seemed more consistent with Full Code.

The fact that Ruth Ann didn’t need DNR or DNI on that first occasion, and that I was prompted in my spirit to quickly change her status back to Full Code, augmented the direction of our discernment. Thus we decided to let Our Lord guide our end-of-life decisions on a case-by-case, real-time basis.

In some ways, the doctors’ negative predictions did come true, at least in part. Since that initial heart attack in September 2013, there have been nine life-threatening events over twenty-six hospital admissions. Ruth Ann suffered a great deal over long periods — affirming her Full Code status every time.

In her first twenty-five hospitalizations and eight visits to death’s door, I sensed in my spirit that the episode was not an end-of-life event. Each time, I conveyed that discernment to her and she remained affirmatively on Full Code. Each time, she recovered.

The final, twenty-sixth admission and ninth visit to death’s door was different. Ruth Ann fell, broke her pelvis and was admitted to the hospital under heavy pain sedation. Holding my hand in Emergency, she looked me in the eye, searching for the discernment from me that she had received many times before — confirmation from Our Lord that this was not an end-of–life situation — that she would recover yet again.

But this time, unlike before, I did not receive any such insight and it was obvious in my face and gaze as our eyes met. Words from me were not necessary and she displayed acceptance without comment. As they wheeled her out of Emergency, she expressed her love for me and added, “Matthew, don’t let them hang me out…” This was a truncated reference to the laundry metaphor “hung out to dry” we had used many times, i.e. extended life support with machines and drugs and no hope of recovery. I responded by reiterating my love for her and pledged to “watch her back”.

Continued efforts with medications over the next few days proved fruitless. It became obvious her body was failing in one organ after another. The doctors said there was little hope of recovery, and the chances of long-term damage were increasing. Ruth Ann received the Sacraments of Penance, Eucharist and Anointing of the Sick. After family discussion, prayer and discernment, we decided that Our Lord was calling her home.

On 1 February 2017, surrounded by three generations of our family, she returned to Our Lord.

Ruth Ann was home with us for almost twenty-five months during the Odyssey, scattered as they were over the three and a half years. Those times were precious and full of joyful memories for the family and me. Thanks to Our Lord, medical skills and the prayers of many, she healed and recovered every time, to our great delight — until the last. She was in full possession of her faculties, walked with an aid, cooked, dressed herself, did light housework — and seated beside me in the car, routinely and accurately corrected my choice of streets to take.

During the sixteen and a half months she was in hospital or in rehab, Ruth Ann endured severe, overwhelming pain, intense suffering, loneliness, anxiety and despair. We know in faith that Our Lord will put that suffering to good use. But even in the midst of such terrible sacrifice, her great love moved her to serve others.

She was on a first-name basis with everyone in Emergency, in the ICU and Heart Unit, and on the sixth and eighth floors. She was known to all as the “miracle lady”. Often, during the less hectic hours, one or more of the staff would visit in her room so that she could regale them with her many stories — all true, though slightly embellished. Single nurses were targeted with grand statements about our handsome grandsons. After a couple of those grandsons visited their grandma, a couple of nurses even took the initiative to offer their telephone numbers.

Always a night person, Ruth Ann was frequently up between 2 and 4 a.m., reading her Bible, writing or praying. It was not uncommon for staff discuss personal things in those early hours, share problems, and hear her comforting words. The morning after one of these interactions, a staff member revealed that Ruth Ann’s stories about love and God had not only allowed her to come out of despair and find peace, but had saved her from committing suicide.

No one likes to think about death. When we’re young, we behave as though we’ll never die. We’re alive, vigorous, rooted in the present. The promise of life ahead drowns out consideration of an end that seems too far away. From a spiritual standpoint, thoughts of God, Heaven, Hell and Judgment travel this same road. We delay, deny and obfuscate, until life throws up confrontations that simply can’t be avoided.

Many thoughtful and well-intentioned people are convinced a Health Care Directive is an effective tool to ease the burden of decisions that end-of–life issues demand. Some may think that our decision to maintain Full Code in Ruth Ann’s case was naive, silly, inconsiderate, unloving, or even a disaster. I don’t recommend that others blindly adopt our approach. At the end of the day, each one of us must make end-of-life decisions based on our own unique relationship with God.

“For who is God, but the LORD? And who is a rock, except our God?” (Ps 18:31 RSV)