The Right to Hope

[dpgRN]

I'm a nurse.

I see a patient. I see a human blanketed in white hospital linens, and adorned by more wires than an electrician can handle. I listen intently to the rhythmic tunes emanating off the monitors, I examine their awkward, dancing lines. I scrutinize the rise and fall of a chest, managed by a machine nearby, as its oscillating movements mimic a real, independent breath of life.

I see a monitor with its colors, lines and numbers. I hear it beeping. I view the chart, and its whole list of diagnosis. I stare at the labs and test results and I understand the severity, and the magnitude of their values. I read the doctor's notes and comprehend their impression of the prognosis. I then go about my tasks hoping to prove that prognosis wrong.

I am a nurse, but I am also just a regular human being. I stare back the the human opposite me, in the bed, under the blanket, wearing the wristband. This human battling a complex version of health, stares back at me. What they see at this time, I do not comprehend, but I imagine them before they lay in this bed.What did they do? What did they sound like? What were their passions? What gave them joy? Who were they before they were succumbed to 12 hours of my care each day or night?

I say health because as I see it, there is a line of health and a line of illness, and then there is medicine. Thus, my job as a nurse is bridge each of those parallel lines, so that I can help the human under my care cross those lines from illness to health, via the interventions of medicine.

So, I see this complex picture and I wear both of my heads, my nurse head and my human head. With my nurse head, I fear what the numbers and prognosis are telling me, and with my human head, I hope to paint a cleaner picture and a sturdier bridge for this shambolic, fragile, effigy of a human being.

With my human head, I stare at the image again, and I spy a tiny flicker, coruscating from the dark walls once enveloping the glim aura of a dark, chaotic, glim prognosis, with a glimmer of light. That flicker is the family and friends at the bedside, holding onto the human wearing the wristband, who appears to be lifeless, under the wires, tubes, and lines. They carry an instrument that I often, inevitably lose as don my nurse head and manage a patient to help them battle their illness. They may not wear a stethoscope, green scrubs, hold a needle, manage the maze of wires and tubes, or understand the jargon of medical terms, but they carry a vital instrument that is often lost to a human in the battle that succumbed them to this messy picture of health. It's their instrument of hope.

I am familiar with this instrument, of hope. I have used it before. But as a nurse, to get my job done, to help fulfill that beacon of hope, I must lay that instrument aside and deal with the reality of the numbers, rhythms, and complications that are alerted to me with the alarms emanating from the blaring monitors. I must educate the patient and their family of the reality on my side of the parallel lines. I must intervene when needed, even when it may hurt. I must deal with the unwanted bumps in the road, and reveal it with its sharp and painful reality. When on the other side of the parallel lines of health, illness, medicine and the human roadmap it crosses, I am intentionally blinded to the hopeful outcome, because I understand the meaning of their values and the denotations of the jargon it speaks.

I am a medical provider and yet I am human. I understand, and I want the outcome you want. But, my hope, while wearing the provider (nurse) head, is blinded by knowledge and experience. I think I know the only possible outcome. Providers often challenge that hope, and wonder why the family won't let that patient give up. Won't let that patient go more peacefully. We as providers know the outcome from medicine. What we don't know is the person; who they are, what they would want, and what they are leaving. We also don't know when a miracle might happen, and as much as we may doubt the ability for that miracle. We provide our care via science, research and with medicine, not with miracles; and so we can leave that up to family and the patient, and then we must support their hope for that miracle.

The reality is that many of us want to live, and we choose life. As providers we help reach that choice of life, within our medical means and capabilities, but until we feel we can. Once we feel like our ability to provide the means of life have been worn out and limited by medicine and scientific evidence, we succumb and offer the patient and their family to allow nature to take the patient on its own inevitable journey in a more peaceful way, if that is what they want. The challenge we face, is when our medicine mind sees the ineluctable outcome, but the patient still holds on to the one last string, to keep that straggly line on the monitor from falling into a dreaded straight line.

Do we push our harsh medical reality out there, or we do keep fighting with them and allow them to hold on and hope until there is nothing to hold?

I used to have an opinion on this. The patient is suffering, is it even fair? Why "waste" interventions if we know the outcome?

That right of hope, is for the patient, but it is also the right that lifts the family through the process and allows them to continue living even when the battle of their loved one has been lost. For without it, what do they have when that life has gone?

You see, as a medical provider, your patient is not just the human that the charts, numbers and monitors are slandering about. Your patient is also the people who care for them, who know what we don't about them, other than their physical features and medical history. Sometimes we must consider the other part of the patient in the clinical picture, the one sitting on the side, and holding the hand of the human wearing the wristband with a medical record number. As clinicians we must also uphold to certain standards, and a code of ethics; to do good, do no harm... We must also respect and uphold to our patients rights.

This right to hope, is a patient's right. When I say patient, I mean their family too. Sometimes a patient is too sick, and too busy fighting to hope, and then there is their family who must cope. How do they cope, when there is a strangulating sense of unknown, looming before them? When the fear of loss consumes them? When the trepidation builds up and then falls with every setback throughout recovery? With the frightening new appearance of their once vivacious loved one, now consumed by wires and machines, only a ghostly image of their vibrant lively self? It is with that thing called 'hope'.

With illness, a human may lose everything; independence, ability to care for one's self or others, to wear the clothing they choose to style, travel to places they wish to explore, taste the flavors of food, and the freedom to live the life that living has to offer. What most patients and their family can choose to hold onto, despite every bump and obstacle along the journey towards health, is the hope that they will make it there.

It is hope that allows them to get up each day and be there for their family member. It is hope that guides their decisions for care. It is hope that allows them to comfort their loved one and support their journey to wellness. It is hope that leaks onto the patient themself and helps them put up a fight. But then, when if the fight is not won? Has all that hope been for naught?

Something in my personal reality, recently clarified this. I have recently witnessed the greatest undeniable faith, hope and belief, that was so admirable, it changed the way I think in this regard within my profession. I have witnessed the faith of family, friends, a community and even strangers. Some even saw the fragile proximity to the straight line, understood the severity of the prognosis, and still held on to hope. They held on even when they were told it was hours, they held on even as the the angel of death loomed over them like a crazed enemy, ready to strike and win a fight. They didn't let go of that hope as the angel of death struck. They didn't blow out that flicker of hope even when there was no breath to prove life; they transformed that flicker of hope into a fire of faith, to carry them forward when death had its way. Their hope was not for naught. Without hope, death may have won the battle over many, with hope it managed to win the battle of one, everyone else won with a flaming fire of faith, to keep them going even when the sheets were drawn and a stone replaced the living human in the bed.

When a person is sick we hope for them, when they are gone, we hope for us; the people who love and care for that person. Once they are gone, they aren't pained, and they have no battle to fight, of which hope can serve as their armor. Once they are gone, it is the hope that helps those that hoped for them while they were living, to win the battle of their absence. It is this same hope that helps heal those they left with the living.

As human being and also a nurse, while my medical knowledge helps me save lives with the interventions I perform, that same knowledge strangles the power of hope from within me, as it gets blinded by the facts and numbers of the many unfortunate realities I encounter daily. I lose sight of that right to hope from time to time, and I've judged it from my nurse head, even as I empathized from my human head. While I have challenged that level of hope with my medical head, I now envy that hope as I see it transformed into a valiant leap of faith and strength that helps the living humans left, to cope. Sometimes, I wish not to be blinded by my medicine head and share that hope and belief that things will turn out ok for every patient I care for. When fate has its way despite the sweat and toil of any medical intervention, and when that hope does not transcend to the patient, let it also transcends to those who struggled to save the life and so that they can stay strong and continue to fight more battles to save lives.

My journey as a nurse is exactly this. To see every challenge in the light of a possible, "hopeful", road towards recovery and life, rather than a road to death, despite what medicine tells me. Treat each human with the harsh knowledge of medicine, care for that human with the fiery warmth of a human heart.[

[klone, MSN, RN]

Great article. Really well-written. I loved the visual of the parallel lines between health and illness, and medicine as the bridge.