hypanis.ru March 2014 - Having Your VoiceHaving Your Voice

Some thoughts on Ventilators and the fragility of our decision making…

In most end of life documents you are asked whether you would like to have assistance with breathing if you can’t breathe on you own.  The process usually involves inserting a tube down your throat through which air is rhythmically pumped to inflate your lungs and oxygenate your blood. 

Because of their size, these devices are not pleasant to experience and have a number of side effects including (1) not being able to talk and (2) having to be provided with water and nutrients through a tube.  In some cases, heavy sedation and paralytic agents are introduced so that your body will not fight the rhythm of the breathing machine.  You can read more of the details in an article by McConnell who has declared that she sometimes considers having “Do Not Intubate” tattooed on her upper lip!

If you are unconscious or in a deep coma and someone is making decisions for you, these decisions will be made by your proxy and your physician. 

Consider the following actual examples with special attention as to what you would do if you were this person.

·        A 77 year old, who had executed end of life documents indicating that he did not want to be placed on a ventilator, contracted a severe lung infection.  Lying on a hospital gurney, a physician approached him, told him of the grave diagnosis and asked whether he had advanced medical directives.  The man’s instant response was to lie and say that he did not and that he wanted everything possible done to save his life.  An operation was performed after which he was placed on a ventilator for two weeks.  In his recovery he stated that he had no clear notion as to why he was so quick to respond as he did – he just knew that he wanted to survive.  Although he lived another two years, he was tethered to nasal tubes and tank which provided supplementary oxygen for his badly damaged lungs.

 The drive to survive is powerful.  Be aware that we cannot be too glib and that many factors contribute to decisions that are made about treatment when we are very sick.

·         Robin Henig wrote a cover story about a 70 year old man who experienced a catastrophic injury to his spine in a biking accident.  Even though he had completed end of life forms stipulating that he did not want to be sustained in a diminished state, he subsequently revoked that expressed intention and asked to be continued on a ventilator  He lived four more years in this severely paralyzed state at a cost of $250,000/ year. 

S   NOTE:  Soon after Henig’s article was published, the patient concluded that he did not want to continue living because he felt his mind was failing.  He stopped the life sustaining treatments that kept him alive.  You can read about him elsewhere on this web site. 


·      A NY Times article written by a doctor addresses the complex ethical environment in which he practices.   He describes a case of a man who had completed advanced medical directives that specifically said that he did not want to be placed on a ventilator.  When the man became unconscious from severe bleeding into his lungs from being on a blood thinner, his doctor diagnosed that the patient was drowning in his own blood.   Knowing that there was a good chance that the patient could recover if he were placed on a ventilator, the doctor chose to intubate him and the patient recovered.  Afterwards, the doctor apologized for violating that order and the patient who survived thanked him for doing so.

     What meaning does this have for you as both a proxy holder and a proxy grantor?

·       Here is an alternative response to the ventilator.

:    A 32 year old hunter who had climbed a tree for a better view, fell and sustained a spinal injury such as Henig describes above.  He had been very clear with his family that he never wanted to live in a diminished state.  His sister was a nurse and asked the hospital to bring him out of a medically induced coma to ask him if he still did not want be on a ventilator for the remainder of his life.  He affirmed that decision and the family gathered for a period of praying and conversation with him prior to his dying.  You can watch a conversation about this case with a Medical Ethicist on CNN.  

     This is a most courageous choice.  Would you be able to do this?  If you have adult children, do you know what their choice would be?


1.     We may be more courageous when there is no eminent threat to our life.

2.     The probability of recovering is critical to consider as are the side effects and compromises that the treatment will impose. 

3.     Ventilators, while unpleasant, may allow you to recover and live many more years.

4.     As a person who wants to have your voice at the end of life, you may want to consider stating that you want a trial and if there is no improvement, you want the ventilator removed.  How long would you want the trial to last? A week? A month? Three mnths?

Your doctor, your family, and your proxy need to know what you want.

Your comments and personal opinions on these dilemmas are welcome.








Lost in Clinical Translation… communicating and understanding when you’re scared

Theresa Brown, a nurse, describes the problems of communication between the medical personnel and the patient.  It addresses the role that fear and anxiety play in making it difficult for patients or their families to hear and process information.   The article was provoked by witnessing what Ms. Brown thought was a clear and effective communication with the patient who then asked her what all of it meant after the medical team left.  It became clear that the patient was terrified and unable to grasp what had been said.

The article addresses the importance of empathic conversations with both patients and loved ones as a way to encourage making sense of difficult and complicated diagnoses and treatments.

The implications for both patients and their proxies are clear. 

1.     It is obvious that we should have physicians who are willing to take time with us and who encourage questions. 

2.     We should have others in attendance when conversations about treatments and their implications are undertaken. 

3.     We should ask physicians to use familiar words to describe what is ongoing, and to explain other medical terminology or procedures in simple terms.


How Long Have I Got Left?

Paul Kalinthi, a 36 year old neurosurgery resident, was diagnosed with cancer.  Even as he describes an overwhelming desire to know what his chances are for recovery, he recognizes how imprecise the statistics can be in a rapidly changing medical research field and how quickly they can become out of date.

Our quest for information, regardless of how inaccurate, speaks to the vulnerability we experience when told we may have a serious or fatal disease.  Psychologically, we are likely to latch onto the “survival” rate rather than the death rate because it is less uncomfortable.   If we are asked to focus on the probability of death, we are inclined to avoid it.  This is in part our “drive to survive” and is well illustrated in this article.

The author quotes a very wise comment from his oncologist as he attempts to gain reassurance which his doctor is reluctant to provide.  When he asked how long he has to live, she replies, “I can’t tell you a time.  You’ve got to find out what matters to you.”  Based on that response, he elected to pursue a passion – writing

Dr. Kalinthi did not survive his cancer.  His wife published a posthumous memoir he had written entitled WHEN BREATH BECOMES AIR – a beautifully written book.

The article provokes some important questions…

1.    If you are ill, what probabilities would influence you to not seek treatment?  You might consider quality of life, side effects of treatment, cost, impact on family, loss of dignity, your age, etc.

2.     Despite the suggestion that we be wary of the accuracy of “probabilities” do you have a sense of what you would ask your medical proxy to do if you were unconscious and the probability of recovery was 5%? 25%? Or 50%? 

3.     If you have had a previous experience with this dilemma with a friend or relative, does it influence how you think about it now?

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