The author of this guest post, Mauricio Berrio Orozco, RN, is a graduate student at the Hunter-Bellevue School of Nursing. Last spring he attended a writing course for graduate nursing students co-taught by Jim Stubenrauch and Joy Jacobson, CHMP senior fellows. Click here for a post about a previous semester’s class.
As a nurse, I have experienced plenty of difficult situations that patients and their families go through during hospitalization. But nothing can compare to the suffering that results from prolonged mechanical ventilation, the long-term placement of a breathing tube that’s needed as a result of conditions such as anoxic brain injury or massive stroke.
By Hfastedge from Wikimedia Commons
Most of my patients are elderly. Many of them are conscious, but a good prognosis is basically impossible. They do not have even the slightest chance of recovering their previous level of functioning. Instead of getting better or at least being stable (normal vital signs, no signs of cardiac or respiratory distress), they develop problems related to mechanical ventilation. For instance, their muscles atrophy from inactivity, which then progresses to severe muscular and joint contractures. In addition, huge pressure ulcers can develop, as can ventilator-associated pneumonia, rapidly making the situation worse. No matter how excellent the care these patients get, their quality of life will only worsen if such complications are present.
I strongly believe that these patients’ families should be better informed by doctors about the patients’ poor prognosis and not led to false expectations. It is extremely sad and frustrating for me to see a wife, a husband, a son, or a daughter spending days by a patient’s bedside waiting for a positive sign like a grimace. I see this often in my practice; it is heartbreaking to see them fighting for their loved ones’ recovery, when most likely there is nothing to be done for them beyond providing comfort measures. It is also hard for me when the patient’s family asks me about how soon he or she will recover; I just tell them that everything is in God’s hands.
I feel like I have my hands tied: I cannot tell them about the reality of the patient’s condition and prognosis. That is the task of the doctors, and in most instances they do not do it properly. Doctors should consider the suffering that the patients and their families go through and perform a holistic assessment and speak with the family about the prognosis and probability of recovery. I strongly think that in an event like this the medical staff and family should think about palliative care instead of aggressive care and the high doses of medications and frequent tests the latter requires. Clear communication between clinicians and patients’ families, focused on reality, is the key.
People need to be aware that events like these can happen at any time. Very often we are not prepared for these situations, as noted in a study that evaluated patients with advance directives. Letting our families know what to do in these cases is very important. I am confident that most of us would not choose to be on mechanical ventilation for the rest of our lives.
Well, at least that is true for me. I do not want to imagine myself in bed and connected to a respirator forever. We can do better. A good medical system is not one that treats patients aggressively, regardless of their prognosis; it is the one that treats patients with dignity and does whatever is best for the patients and their families.
Barbara Glickstein / August 28, 2012
Thank you for sharing your personal and professional insights on prolonged mechanical ventilation. Your description of the family members.”.. spending days by a patient’s bedside waiting for a positive sign like a grimace” made my heart ache. I could see the faces and feel their anguish. You have added to the public conversation about death our culture needs and cries out for. I will be sharing this with my family and friends hoping it sparks important conversations in their homes.
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Liz Seegert / August 29, 2012
Having recently written my own advance directive, your post certainly hit home and mirrors many of my own thoughts. Without an advance directive or health proxy, both patients and families will endure much needless suffering, Physicians and patients need to have these conversations long before it’s too late.
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mandanderson / August 29, 2012
Thanks for your thoughts. They are similar to ones I think regularly, as I work in a busy MICU here in NY. Not only is poor communication about prognosis distressing to patients and families, but it’s also distressing to me, their nurse. From my experience, I know that most times, a ventilator (and much of the non-evidenced-based, hyper-aggressive care we give) is simply a band-aid that will never cure the underlying problem at hand. The culture of aggressiveness in the face of medical futility not only brings suffering to patients, but to nurses as well. Why aren’t we talking frankly about these things – to our patients, and together, as a profession?
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Jim Stubenrauch / August 31, 2012
Thank you for your thoughtful and insightful post, Mauricio. It’s important that voices like yours are heard in the contentious debate about how much and what kind of end-of-life care is appropriate. Please keep talking and writing about this issue and adding to the public dialog about end-of-life and palliative care.
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AngyN / August 31, 2012
Hi! Mauricio,
I am excited to see one of us advance beyond the class room assignment and exams. It is motivating to me. keep it up.
There is no doubt that the economic cost, as well as the physical, emotional and psychological burdens of such terminal and hopeless cases, on the patient, family and healthcare workers are enormous. This not withstanding, we still have to respect the cultural and religious inclinations of our patients and their families. As a nurse, I personally would not want to encourage or participate in ending any ones life no matter the situation, because I did not in any way particpate in the making of that life.
People have recovered from illnesses and lived many years even after their doctors had prononunced that they had only a few weeks or months to live. The same God your had told the family that everything is in His hands,is the same way nothing is impossible for him to do. This is definitely a tough decision to make.
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