In the midst of a global pandemic, it is time we normalize discussions about medical interventions, quality of life, and end-of-life care.
In the worst-case scenario if you are sick, you may end up where I work: The intensive care unit (ICU). You may be there because you cannot breathe on your own and need mechanical ventilation via an endotracheal tube, or because you are in shock and your body cannot sustain adequate blood flow to vital organs. No matter why you are in the ICU, the practice of medicine can often sustain your life, keep you alive, and give you the chance to get better, when in the past you might not have survived.
We have machines that can function as almost any vital organ in your body. We can pump you up with fluids, blood, and electrolytes, while giving you medications that increase your blood pressure, regulate your heart rhythm, provide pain relief, and sedate your nervous system.
In the best-case scenario, you get better, as many ICU patients do, and go to a regular hospital floor, or to a long-term care or rehabilitation facility, and hopefully someday go home. However, medicine still has its limitations, and surviving these interventions in an ICU can also result in many different complications.
Being on a ventilator for extended periods of time can cause your lungs, throat, and vocal cords to weaken or erode, and you are more prone to infections. Even if you are able to wean off the ventilator, you may be left with difficulties swallowing, eating, and decreased lung capacity. If you are unable to wean off the ventilator, you would require a tracheostomy, a surgically created opening in your neck which allows air to enter your lungs; however, even with a tracheostomy you may still require a ventilator.
Laying in a hospital bed for extended periods of time means you are more prone to have skin breakdown and pressure injuries, your muscles can atrophy as your body weakens, and you will be more prone to blood clots, which may travel to your lungs causing you to be more ill or possibly die.
These are just a few of the scenarios we face with our patients in the ICU. There are thousands of other complications that may arise. Each scenario and each complication can land you in a state of being or quality of life that you may not want, but without direction being provided by you or your family, a state to which you could be permanently confined.
With all these interventions, machines, and medications keeping you alive, at what point does it become “Enough is enough?”
Only you, as the patient or your family designee can decide if you are no longer capable. But how can you or your family possibly understand what each intervention means in terms of not only your survival, but your chances of recovery, and the quality of life that you could possibly expect? As medical professionals, we must fulfill our obligation to help you and your family understand. We need to do the best we can to have these conversations, which are not easy.
In spite of how difficult it may be, I am advocating that we, as a patient’s medical team, need to take the time to explain to you as the patient and your family what each medical intervention, medication, line, tube, and drain means. We need to take the time to explain outcomes of procedures and life-sustaining measures. We need to take the time to discuss what is important to you, how you want to live, and to understand what your goals are for the quality of your life.
There are options, and we do not always have to do every possible intervention, because the end result may not be the life you want to live. We need to do better and take the time to have these conversations with you as our patient.
However, before you become seriously ill, the first step should be for medical professionals to encourage you to have conversations with those you love. Death and dying are difficult topics for every one of us. However, it is much harder for you or your loved ones to make a decision for you, when the time comes if it was never discussed. Have the hard conversations now. Discuss what you would want if you were intubated and on life-sustaining machines or medications. Discuss what you would want if your heart were to stop, or if you were critically ill. Discuss what you would want if it meant you could never breathe on your own again, or walk again, or eat again. Discuss what quality of life means to you.
I work in the ICU now as a nurse, but soon I will be a family nurse practitioner (FNP) working in primary care, which focuses on preventative healthcare and health promotion. My promise, as a new FNP, is to take the time to have these difficult discussions with my patients prior to being in the hospital or the ICU. I will encourage my patients to also have these discussions with their loved ones.
I will start with my patients, but my hope is that all providers will take the time to have these difficult but important conversations throughout every level of care.
Rebecca Pieper Esposito lives in Haddam.