Do you want to Live, or do you want to Die?

I had been working as a Respiratory Therapist for over 20 years. Over those two decades there were many advancements in medical technology, and by and large the technology was good and saved many lives such as the advent of better Infant Ventilators for the treatment of babies born pre-maturely. But as the technology made possible to extend and save lives, there was a downside. It seems that as the technology boomed, the Doctors, Nurses, and other allied health professionals lost sight of the purpose of the technology while also losing their ability to communicate with the patient, the family and clergy about "end-of-life" decisions.

The last decade of my practice of Respiratory Therapy saw so many occasions of what I would call "very inappropriate use of high technology medicine", applied to extend end of life situations. More tubes, more drugs, more monitors, and often all of this while increasing the physical distress to the already greatly suffering patient when palliative care would have been the proper course. This at great financial and emotional expense to family in order to only extend the suffering of a patient that is dieing.

Now I am not putting all the blame on hospitals, doctors, and health care workers, as I put equal blame on family and clergy. There is no longer the communication channels that we counted on so often to help make decisions. Families of course want to do all that may be possible to help a loved one. This is natural, but there are times when it is no longer appropriate to pursue more technology that may only increase the suffering, while there is really no chance of surviving the end stage disease. But without communication between patient, family, doctors, nurses, and clergy, we are often left with the patient having technology applied simply because it is available, and the family has not been properly informed of the impact that this technology will have on their loved ones last days.

I will tell of a particular personal experience of mine while working the Intensive Care Unit. I will call the patient Mr. Jones, (not his real name) and the doctor, Dr. Fredricks, (not his real name). The Hospital Facility and State remains anonymous as I have worked in a number of facilities in a number of states and have witnessed similar situations in each.

Mr Jones had been transferred to the Intensive Care Unit. He was suffering from end stage Emphysema and I had seen him on many occasions over a number of years doing what we could to help him through tough times of this progressive disease. He was a kind gentleman, and was stoic in how he managed with his illness. But, it is a progressive disease, and at some point in time in the near future it would be the cause of his death.

In the Intensive Care Unit, we would be better able to closely monitor Mr. Jones, as his breathing was very labored and his blood pressure was unstable. We all pretty much new that this very well may be his last visit to the hospital. As the night went on, he became worse. His breathing was so labored he could barely speak. He could no longer maintain proper blood oxygen levels with oxygen mask. Checking the chart, the nurse noticed that there was no statement as to whether he would be coded if his breathing failed. Calling a code (implementation of artificial resuscitation) provides ventilation by artificial support.

Calling a Code would mean the application of artificial breathing devices as well as external cardiac message if needed, (CPR). In a hospital setting the Respiratory Therapist may have to intubate the patient of which the code has been called. This is the placement of a tube into the airway by way of the mouth or nose. It is a very painful procedure for the patient that is awake and aware to endure. The therapist positions him or herself at the head of the bed, and a laryngioscope blade is inserted into the mouth and is advanced deep into the back of the larynx. The blade is lifted pressing the tongue against the floor of the mouth and lifting the jaw until the vocal cords can be visualized. A tube that is about the diameter of your thumb is inserted through the vocal cords and into the airway. A balloon at the end of the tube is inflated to seal the airway, and we are able to hook up a ventilator to force air into the lungs.

This a very common procedure and is frequently used in emergency situations and surgical settings. It does save lives, young and old and is required anytime a mechanical ventilator is put in use.

Back to Mr. Jones...

Without a Code Status statement in his chart, we will be required to perform a code on Mr. Jones. The Nurse placed a call to inform Dr. Fredricks of the worsening situation with Mr. Jones, and to hopefully get a "No Code" order written. When the nurse hung up, she stated the Dr. Fredricks did not sound very pleased having to come in at 2:00 in the morning. When the Dr. arrived we updated him on the situation and hinted that we were needing a "no-code" order as the nurses as well as myself felt that it was very likely that Mr. Jones would not recover despite all our efforts. Dr. Fredricks called the family and the conversation went something like this.... "Mrs, Jones, your husband is having more difficulty with his breathing. Do you want us to do all we can to help him?" We could not hear the conversation of Mrs. Jones, but when the Doctor hung up the phone, he said that the family wants us to do all that we can. We were greatly dismayed about the manner in which he confronted the family as he did not fully explain the impending crises, nor the procedures that would be put into place. He then went in to talk with Mr. Jones. Now Mr. Jones was hard of hearing, so Dr. Fredricks got close to his ear and was almost yelling to Mr. Jones.

"Mr. Jones... Do you want to live, or do you want to die"?
"Mr. Jones... Do you want to live, or do you want to die"?

It was very difficult for Mr. Jones to talk as his breathing was so labored. Each breath was a gasp. He finally was able to say with a raspy voice in-between gasps, "I.... gasp.... want...... gasp.... to.... gasp.... LIVE... gasp".

I looked at the nurses and we could not believe the heartless manner in which the Dr. handled this. Neither the family nor the patient was informed of what was to transpire when Mr. Jones's breathing failed. I wanted to make sure of what Dr. Fredricks orders meant specifically, and he did state that if his breathing fails, we are to intubate and ventilate. And with that the good doctor was off for a good nights rest.

Mr. Jones's night would not be so restful. His breathing finally did fail and we had the crash cart standing by. I was able to intubate fairly quickly and had him hooked up to the ventilator to support his breathing. He had to be restrained with his wrists tied to the bedside as he was frantically trying to pull out the breathing tube. He was medicated to ease his apprehension. And thus our technology was now prolonging his life. I went home in the morning feeling just terrible. For the next two weeks we pumped air into his failed lungs, while his wife anguished at his bedside over the obvious suffering of her husband of more than 50 years. She would ask over and over... "Is there not anything you can do to help him?" All I could think of in my mind was "Unfortunately, we have done everything we can". A very sad situation. He lived on the ventilator for two weeks then his heart failed. I was not present at his death, but full CPR was performed to no avail on the Doctors orders.

It seems in this situation, that the Doctor simply had lost all ability to communicate with patient and family. The families decision was based on limited information. If all had been explained and also if they had been presented with the very low odds of his surviving despite extreme measures, I am sure they may have chosen a different set of options. Unfortunately those options were not made available to the patient nor to his family.

I am not sure what has happened to our society. It seems that we cannot accept the fact that we are all mortals, and we will all pass from this earth at some time. Nobody has gotten off of this planet alive to the best of my knowledge. The question is not "Do you want to Live, or do you want to Die?", instead we should be asking how can we better face the inevitable, and pass on to the next realm with some dignity and course of action based on sound advice.

Mr. Jones had suffered for many years with his disease, and the last two weeks of his life was pure Hell for him and his wife as well as those that had to care for him. It was because of so many situations such as this that I finally retired from the practice of Respiratory Therapy. I could not any longer play a part in this all to often practiced ritual of High Tech Death. Too often the skills that I had at my disposal were inappropriately applied, and was used to prolong suffering rather than to relieve suffering. One does have to go home at night, and live with the knowledge of what you have participated in.

I have great respect for those who serve in the care of the sick. They are often working long hours, crazy work schedules, on call at times, for poor wages while having to deal with moral dilemmas on a daily basis. I have known many skilled nurses, doctors, and other allied health care workers who dedicate themselves to this somewhat less than perfect health care system.

Valuble Links

End of Life Issues- MedlinePlus
Sometimes, in spite of treatment, a condition or illness will cause death. In those cases, patients can decide what they do and do not want done. They can decide whether they want aggressive treatment that might prolong life or whether they prefer to stop treatment, which could mean dying sooner but more comfortably. They may want to plan their own funeral. Advance directives can help make the patient's wishes clear to families and health care providers.

Care at the end of life focuses on making patients comfortable. They still receive medicines and treatments to control pain and other symptoms. Some patients choose to die at home. Others enter a hospital or a hospice. Either way, services are available to help patients and their families deal with issues surrounding death.

The above courtesy of MedlinePlus.
Visit MedlinePlus for more information on Advanced Directives.

Also a very good on-line resource to assist with end-of-life decisions is
www.doyourproxy.org