Worth It

"Patients, doctors, nurses, and others may not share a common set of beliefs around the meaning of life, value of extended life, significance of suffering, or the appropriate use of technology... To truly benefit patients, the health care team must ask, 'In what ways does this patient need our assistance and support to achieve the patient's desired outcome?'" Roots of Interdisciplinary Conflict Around Ethical Issues, Sarah E. Shannon, PhD, RN

I read this article as part of a packet I'm supposed to read for a Moral Distress Consult Service I'm joining through the hospital. I thought it was going to be a service where we basically went through and heard people's issues with a particular ethical debate about a patient. Based on this packet, however, it doesn't sound like we'll be educating people on the actual ethics of any situations, but rather their own personal p.o.v. and how it is playing into their distress.

I don't think it'll come as a surprise that sometimes nurses and doctors disagree. Basically, the conflict boils down to nurses feeling like they really know the patient and the situation better than the physician and should therefore play a larger role in the decision-making about the medical plan for said patient. Physicians, on the other hand, feel more of a responsibility for the medical plan because they sign off on it with their license, earned through mastering the information. The picture is this: physicians sign off on orders that nurses carry out, so if nurses disagree with the plan of care, they feel that they are literally going against their beliefs when they act out these orders. Nurses often forget, however, that physicians sign off on these orders, and are generally held to a higher legal obligation than nurses are.

Even this summary is biased-- it paints doctors as being mostly concerned for themselves and ensuring they can keep their license, while nurses care more about the actual patient. This isn't so; everyone in the health care team prioritizes the patient... but I don't know how to paint a different picture because of my job position. This is what I experience in my job and what I hear other nurses experience. I'm sure if I was a fly on the wall of a doctor get-together, I'd hear their frustrations in a different light.

But you get the point.

The quote at the top is trying to make a different point, though. Not that it's RNs vs. MDs, but person vs. person. Every individual has a different set of values. And in America, it's your own individual values that determine your medical treatment. This means that, almost inevitably, your medical decisions will conflict with your medical team. And the different members of the medical team will conflict with each other.

I can hear it within myself all the time.

Situation: Patient is unconscious, family is indecisive on what to do, and physicians offer them many options, including many extreme life-sustaining measures with little percentage of a meaningful life, even with recovery.
My P.O.V.: I can think of 100 patients who die and/or recover to a minimal quality of life for every 1 patient who has a meaningful recovery. I also paint the physician as having an attitude of "Because we can do tests means we should do tests".
Problem: I base my opinion on my experience, not on statistics or the values of the patient and family. I also undervalue the use of technology (compared to the Md's perceived value of technology). I also use my own beliefs to determine what a "meaningful life" looks like, rather than the patient or family.

Situation: Patient has terminal illness, has been hospitalized a dozen times for the same issues related to the progression of the terminal illness. Each time the patient is discharged home with less and less ability to lead a "normal" life. Their quality of life exponentially decreasing, and inevitably this patient will code and we'll bring them back for maybe a day or two before they code again, and again and again, until finally we are unable to help them. The medical team conveys this likely course of illness to the patient, but the patient still insists on "having everything done" for them to prevent (or, realistically, barely delay) dying.
My P.O.V.: The patient is afraid to die and is being cowardly about his/her own mortality. Or this patient clearly doesn't know what they're getting themselves into! They don't know how painful it is to have CPR multiple times, be electrically shocked multiple times, or have a plastic tube inserted into their lungs multiple times! They don't really understand that they won't recover. They don't really understand how miserable their life will be when they have a permanent breathing machine attached to the surgically-implanted breathing tube, have a surgically-placed feeding tube placed in their abdomen, and have multiple sores from being bedbound and vulnerable to infection. They just need more education.
Problem: I am undervaluing the value of extended life (compared to the patient). In most cases, patients have been educated to the likely course of the illness and make an educated decision to have the full plan anyway. Another problem is that I have a different understanding of the meaning of life, and therefore the meaning of dying, and that makes me feel superior compared to their meaning. Yet another problem is that I am overvaluing the significance of suffering (compared to the patient). It's not that that patient doesn't understand how uncomfortable life will really be (especially because most of these patients have been intubated and resuscitated before, so they have more experience in those areas than I do, seeing as my heart and lungs have never stopped functioning before...), but that patients really do want every opportunity to recover and extend their life, and the suffering is therefore worth it.

Oh that phrase... worth it. This is the silver bullet when arguing with physicians, patients, and families. We all view our priorities and values as a set-in-stone hierarchy that determines if something is worth it. And if someone else's values differ, it's because of ignorance or fear of dying or over/undervaluing something (technology, quality of life, suffering, the financial cost of the care, the cost to the family for extending care, etc).

Everyone has a set of beliefs about these things, mine just happens to come from the Bible and from hospital experience. I have seen too many people die in pain to ever want undue pain in my own hospital stays-- if it doesn't have a definite outcome to benefit or save areas of my life that are important to me (i.e. having kids, rehab from surgery, etc), I don't want it. I also have a different sense of quality of life. I love my brain and listening to music and stories, so if I lost the ability to appreciate any of those things (i.e. major brain damage) I would have a strong hesitancy to extend my life... but I'm not all too-attached to my physical abilities (like an athlete might be, for instance) so the loss of those functions would be less devestating (still devestating, but still worth it to keep living).

But the biggest determinant of my values is my confidence in salvation and knowing that there's something more for me. I know that when I die, whether through disease or disaster or natural lifespan, I'm going to the same place. I know that I have been put on this earth, in this life and this job and this community, for God's purposes; so when He calls me Home, I can go Home. I can suffer to preserve my role in His purpose (i.e. continuing to raise children, or continuing in a career or vocation), but not for the sake of preserving my life. I don't need to keep living to solidify an identity for myself, or leave a legacy, or answer life's questions... I can die and gain all those things in Heaven. And I have a larger fear of suffering than I do of dying for this reason-- which is why I probably overvalue suffering (even from a Biblical perspective, suffering is necessary and I drag my feet to accept that) and undervalue extending my life.

My perspective isn't perfect because it still comes from my sinful heart and is acted out by my sinful body and is thought-through by my sinful mind. But other people have perspectives that can come from the wrong foundation-- from fear of dying because they don't have salvation, or fear of losing their current quality of life because they don't have anything else as a base for their identity. And, as a Christian, these are the foundations I'm supposed to rattle. I'm supposed to make you think about Eternity and the Purpose (and gift!) of life.

... but I have to admit, sometimes even that battle with people doesn't feel worth it.