The Dangers of Uninformed Autonomy

“There is a dignity in dying that doctors should not dare to deny.” [ Anonymous]

Today, a patient I have been helping to take care of died. I and the medical team knew that she would die soon, but for the past 18 days, we have been sticking little bandaids on various components of her rapidly declining health. Multi-organ failure is a beast to treat, especially knowing that it most often leads, inevitably, to death. Irreperable renal failure? Dialyze it. Bone marrow not churning out red blood cells? Transfuse it. Spleen eating up platelets? Infuse more of the fleeting and questionably effective stuff. Too weak to breathe? Mechanically ventilate it. Too sick to eat? Tube feed it. Too malnourished to even absorb that? TPN it. Skin breaking down from weeks on end of lying in a hospital bed? Dress it. Spiking fevers? Culture everything from sputum to stool, and kill every living bacteria in the body until the only ones that are left are of the nasty multi-drug-resistance persuasion. Each day, we repeat this point-and-shoot approach to a dying patient. And why?

Well, there are many reasons (read: excuses) for this. It takes too much time to have an end-of-life discussion with a dying patient and his or her family. It is too difficult and emotionally draining. It is scary to say the “D” word — death. It is someone else’s job to prognosticate. It is the patient’s fault for choosing this treatment. It is the family’s fault for saying, “Do everything to save my family member.” It is the healthcare system’s fault for putting us in ethically disturbing situations. It is technology’s fault for producing medical advancements that prolong life but do not deal with allowing death. It is everyone’s fault, including our own.

In medicine, we are taught the four basic principles of medical ethics: Beneficence, Non-maleficence, Autonomy, and Justice. One is not more important than another, but each weighs a different amount in every individual situation. The Western ideals of independence push Autonomy to mean something that I feel is not what it was intended to mean, in the ethical sense. When I consider a patient’s Autonomy, I see it as their right to choose the care they receive from me, the server. The crux of this right, however, lies in the patient being fully informed of what the treatments and options are, including the option to decline treatment. It is not adequately promoting Autonomy to tell a lay-person which medications, surgeries, etc. they need, and then letting them “decide” to go through with it or not. By not providing all feasible courses of action, we are inherently taking away a patient’s Autonomy. This is starkly portrayed in the film Wit, which I remember watching with my medical school class as part of our orientation almost seven years ago.

It can be challenging, of course, to explain complex disease processes to anyone who is not in the medical field. Mix in factors such as illiteracy, poor education, poverty, language barriers, mistrust of the medical system, and cultural differences in perceptions about health care, and it may sometimes seem impossible to truly “inform” our patients. However, cases like this specific patient remind me of how important end-of-life conversations are. In this specific situation, my patient was in fact in multi-organ failure due to a very advanced form of cancer. She was afflicted with all of the things I mentioned above. Her body was trying to die, but the “life-saving” machines were continuing to prolong her suffering.

Which brings me to another point. It is a sad truth that most people do not fully comprehend what life support is. I recently was part of an end-of-life discussion with the mother of a critically ill patient with liver cirrhosis. He was also in multi-organ failure from his liver disease, and even though she had seem his body connected to the ventilator and the dialysis machine, she completely fell apart when I said the words “life support.” She had no idea that the picture of her son in the ICU room, connected to these various machines, meant that he was on life support. It was a lesson to me that we need to always explain things in the simplest of terms so that the families (and patients, if they are still aware and able to understand) fully perceive the extent of someone’s disease. And even once they understand life support, it is important that they understand when “life support” no longer equals “life-saving.” Machines can prolong the life of a person’s organs and tissues, but they do not always prolong the meaningful moments of one’s life.

Going back to my patient — I had a lengthy discussion with the patient’s daughter regarding her medical condition, trying to be gentle yet truthful in telling her that her mother was dying. I told her that none of the current treatments would change the course of her mother’s disease, but we could change how she died. We could allow her to be comfortable, free from the invasive, painful, and unnatural machines that were fighting against her body’s will to succumb to disease. I encouraged her to view withdrawing life support as a dignified death surrounded by her loved ones in the last moments of her life, rather than a painful death during a code blue, surrounded not by family but by a medical team of strangers attempting futilely to bring her back to “life.” I encouraged her to consider a “Do Not Resuscitate” status so that when (not if) her heart stopped, she could pass peacefully rather than have people compress her chest and potentially break her already frail ribs that had been infiltrated with cancer. I encouraged her to understand that despite all of our best efforts, her mother would not survive her cancer. The daughter had tears in her eyes as she watched her mother take agonal breaths, see the wasted muscles, and talk to an unresponsive mind. I left her alone to be with her mother, offering to return at any moment to answer her questions or talk with her more. Unfortunately, nothing changed and the patient ended up coding today. She underwent CPR and resuscitation efforts to bring her heart back to a viable rhythm. The first code was successful, if success means the heart was able to pump on its own, pump blood to the failing organs in her body. The second code was not, and the patient died, in the most unnatural and disturbing manner that remains unsettling to me as a physician, no matter how many times I have seen or will see it again.

Perhaps I should have called her daughter on day one when I took over the case from the previous team. Perhaps I should not have assumed that the specialists on her case would have discussed her prognosis adequately. I know I should not have presumed that comfort care or hospice had been presented as options for this unfortunate patient. This and so many cases like it motivate me to be more proactive in practicing the other ethical principle of Non-maleficence, to “First do no harm.” We must all strive to give our patients a fair and informed chance at choosing what is truly valuable to them — what Autonomy should be.

“Do not seek death. Death will find you.
But seek the road which makes death a fulfillment.”
[Dag Hammarskjöld]

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