End of Life Care and Moral Distress

Wanderer (@Wanderer_RN) over at Lost on the Floor is pretty well on the mark writing on quality of life at the end of life:

Case in point…a 90-something year old patient, recently had a pacemaker implanted for mild tachy-brady syndrome.  They had some occasional mild tachycardia and rare episodes of bradycardia which were non-symptomatic for a big reason: they were never out of bed or chair.  Yes, this lovely patient was completely dependent upon others for every aspect of their care, not to mention completely demented.  If your idea of quality of life is being 100% dependent on your family and having absolutely no meaningful interaction with them, then this is great.

I can understand doing procedures on folks with whom it will make a positive outcome. . .  It makes sense.  But to do these kinds of procedures on those with poor quality of life is just cruel.  It only delays the inevitable.


End of life costs are avoidable if we as society realize the death is a natural part of life and accept it.  Instead we claw and fight to eke out the last painful years many have, enduring lives of bed sores, PEG tubes, nursing homes and hospital admissions.  For what, a couple more years?  Years that can’t even be enjoyed because of the multitude of illnesses?  It doesn’t make any sense to me.

It doesn’t make much sense to me, either. Nurses are supposed to validate and support the health care choices patients (and by extension, families wielding powers-of-attorney) make, even if it’s cruel, wrong-headed, or flies in the face of nursing values. We’re supposed to ameliorate suffering and yet we’re compelled to acquiesce in treatments which objectively perpetuate it — especially when those procedures seem to be principally for the well-being and benefit of patients’ families, rather than treatment of the patients themselves. It’s an enormous, and usually unresolved, ethical conflict. Can you say cognitive dissonance and moral residue?  One article* on this topic suggests

[t]he stakes are very high in [end of life care] since, ultimately, nurses who suffer moral distress and residue run the risk of loosing their moral integrity and with it their moral identity. Unfortunately, studies indicate that nurses often do in fact experience both these moral difficulties and that in fact they represent a main reason both for nurse burnout and of nurses leaving either the hospital setting or the profession entirely. Perhaps more unfortunately still, there is some evidence to suggest that this loss of (or change in) moral identity begins very early in a nurse’s career, and is in fact part of her defacto ‘professionalization.’ In a couple of fascinating studies on nurses just beginning their professional lives, Kelly (1996, 1998) found that the new hospital nurse typically goes through a six stage process as she moves into the hospital work world while trying to retain a sense of moral integrity. These are: “vulnerability,” “getting through the day,” “coping with moral distress,” “alienation from self,” “coping with lost ideals,” and “integration of a new professional self-concept.”

The author goes on to say:

The fear, and at times the reality of the situation, however, is that nurses have lost their perspective of care. If and/or when this happens, crucially important elements of end of life care may be absent and patients, along with their families, will receive inadequate care. To avoid this, then, we must ensure first that nurses retain this caring perspective and second that their caring voice be heard and acted upon in decisions about and practices engaged in end of life care.

The take-away almost seems counter-intuitive: by expecting and demanding extraordinary or heroic  — and most often pointless — treatment and procedures for patients, families are virtually guaranteeing diminished engagement from their health care professionals. But how do you explain any of this to family members who are convinced beyond all reasoning their 94-year-old demented, stroked, contractured grandmother is somehow going to be restored to a reasonable health and quality of life?


*Stewart, Robert Scott (2007). Withholding and withdrawing life support: moral dilemmas, moral distress, and moral residue.  Online Journal of Health Ethics, Vol 4, No 2. Retrieved from http://www.ojhe.org/index.php/ojhe/article/viewArticle/79/104


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  1. #1 by onlinenursing on Wednesday 04 May 2011 - 1327

    Excellent post and points. Thank you to all three writers! I would just add that nurses incorporation of ‘professionalism’ and burnout, that is learned from culturation into their work place and unfortunately from educators as well, includes the fear of retaliation of physicians, administrators, and families. Thus many of us, as so clearly pointed out, do ‘keep quiet’ and disengage in such situations.
    I remember working in the Neonatal ICU over 15+ years ago, that we routinely tried to save premies with grade 4 intercranial bleeds, failing kidneys, and multiple of other problems. Often, we unfortunately did save them and gained sometimes no more than vegetative humans. This does not show value for human life, but in my opinion, quite the contrary.
    Hopefully, the inability or power of nurses to speak openly with families, as peers on the health care team, or the demand for nurses to cow to physician orders ‘no matter what’ days are waning. At least… I hope so.

  2. #2 by Terri C on Wednesday 04 May 2011 - 1341

    My brother took action in the case of my uncle, for whom my brother was caregiver. My uncle was in a nursing home which he hated, and had developed a health issue for which he was hospitalized. After a workup a surgeon wanted to place a PEG tube. Upon hearing that the goal of this was to improve nutritional status so he’d be strong enough to go back to the nursing home my brother asked for a hospice eval–the docs grudgingly said, yeah, that would be appropriate too, and my uncle died peacefully under hospice care. What if my brother hadn’t known to ask? Families need to know all the options…

  3. #3 by Jenn Jilks on Wednesday 04 May 2011 - 1928

    I totally blame the physicians, who are unable to explain procedures, if there are side effects, what the survival rates are, the value of the procedure, whether it will improve quality of life.

    We need a treatment plan for each patient. This is truly not happening.
    Once they do create one, whether the patient is operable, or palliative, or whatever, they must allow the patient, and their family, to discuss and to determine if it is appropriate for the individual patient.

    My late mother was convinced to have chemo. The first treatment killed her. She developed a blot clot, due to lymphedema, before the 2nd treatment.

    I blame these physicians who are not treating patients with this respect, by providing all of the information we require to make good decisions about our treatment plans.

    As a family member, I can imagine how upsetting it must be for you, as nursing professionals, to watch poor treatment plans, or no plans, as physicians do not fulfill their responsibilities.

    I told you about the doctor who entered the room in which I was sitting with a palliative client, in a coma, with a morphine pump (CAD, is it?!), and he said, “She just won’t die!”
    Shaking his head. Could have slapped him upside the head.
    I told him that she wasn’t ready to die, or didn’t think her daughter was ready.
    Shudda slapped him…
    /hospice volunteer

  4. #4 by http://shift-Control.com on Thursday 03 July 2014 - 2116

    Hello there! Would you mind if I share your blog with my zynga group?

    There’s a lot of folks that I think would really enjoy your content.

    Please let me know. Thanks

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