I work in end-of-life care.  More and more these days I hear stories about situations that run amok.  When sickness and dying are emergent for us or a loved one, all sorts of power struggles can arise. We wrestle at all cost, to maintain the illusion that we (patient or caregiver) will have the final say.  And it’s not just the families that are falling into the trenches in this losing battle of control when contending with death.  Many health care providers are equally susceptible – witnessing their carefully cultivated, core beliefs flatline in the face of ethically mind boggling drama.

Not too long ago, we in this field coined the phrase “a good death.”  When boiled down, this simply means crafting an image of death that closely echoes our own values and preferences, then projecting this image, either consciously or unconsciously, onto our patients and their families.  That’s not to say our intentions aren’t honorable.  Our desire for a more comprehensive approach to address intractable pain and suffering led to significant advances in end-of- life care and palliative medicine.  But the underbelly of our need to more thoroughly manage the dying process oftentimes masks a plethora of unexamined fears around our own mortality.  The drive to direct a situation based on our predilections of what is best for the patient and, if necessary, to revert to emotional manipulation if our advice is unheeded, speaks to this overpowering craving to control what is ultimately uncontrollable.  This tendency can be frequently observed in physicians, whose egos are fortified by being “the Best, Brightest and most Bombastic” in hospital hierarchy, but really anyone with an invested interest in the patient – nurse, social worker, caregiver or family member – can and do fall prey.

In previous generations, most individuals were all too ready to abdicate to the physicians’ directives, as were the nurses who worked under them.  Nowadays, roles and expectations have shifted considerably, creating a winding wake of ethical chaos and moral distress in patients, families and caregivers alike.  Health care decisions are far more complex as our capacity to sustain life does not offer any guarantee that such a life will be desirable, once the medical arsenal has been exhausted along with the toll it has taken.

Recently I listened to a mother recount the story of her teenage son’s diagnosis and ultimate death from cancer. This mother is a nurse and her life- changing journey began when she brought her son in for a routine kindergarten check up.  Prior to the visit, her son had appeared pale for a couple of weeks but with no obvious signs of illness.  She was met with this remark from the doctor:  “You nurses; you know how to care for everyone but your own family.”  I am paraphrasing, but this was the spirit of his remark, as the mother heard it. This was the message that framed the news of her child’s cancer. 

Fast forward to the end of her story.  After being in remission for a number of years, the boy’s cancer came back with a vengeance.  Her son was exhausted after failed rounds of conventional treatment. As a last ditch effort, the oncology team wanted to do a bone marrow transplant.  The family wanted to look into alternative healing modalities, and the boy was in favor of this.  The oncology team advised against this, conveying that if the family didn’t agree to the transplant, the best shot the boy had in their estimation, they would have to involve their legal team to insure that responsible choices were made for their minor son.  The family was fearful, as neither treatment option was guaranteed to save their son's life. Choosing between the negative side effects of bone marrow transplants and the undocumented successes of holistic treatments was crippling. It was decided to play it safe by staying in good standing with the oncology team.  After two weeks of the heaviest doses of chemotherapy he'd ever had, in preparation for transplant, the boy developed Adult Respiratory Distress Syndrome and died very suddenly. 

We don’t know if alternative medicine would have saved her son, bought him more time, or given him and his family a “good death.” We just don’t know.  I’m not suggesting that the circumstances that unfolded were somehow wrong or that they should have been different.  This kind of thinking places an unbearable and unnecessary burden on the family.  What happened was supposed to happen, because that’s the way it happened.  Period.

But I will suggest that there’s a lot we can learn from their experience and how it portrays the shadow side of Western medicine and those who practice it.  At both the beginning and ending of this mother’s journey with her son, the doctors’ lack of mindfulness in their communications with the family negated their Hippocratic Oath to do no harm.  The truth is, the pediatrician who reacted harshly to discovering the son's cancer was efficient and able to obtain a diagnosis quickly and accurately to which the family was appreciative. That being said, how could he possibly have known it was the mother’s negligence that had contributed to her son’s illness?  His callous remark was a knee-jerk reaction and that’s what causes unnecessary harm - when we react to situations instead of taking a moment to respond mindfully and with compassion.  The physician’s emotional outburst and biased generalization had more to say about his lack of awareness than of the mother’s care for her son.   

What about the oncology team’s stance with the family?  Did they absolutely know that another invasive, high-risk round of chemotherapy was the right course of treatment for their patient?  Of course not.  But their own sense of authority, sanctioned by the medical kingdom over which they preside, seems to necessitate this unequivocal posturing more often than not.  It’s one thing to recommend an evidence-based course of treatment and something entirely different to be so completely attached to this outcome that any manner of manipulation is not only deemed justified, but ethically mandated.

Before we go any further, let me just say loud and clear that I have had the good fortune to meet many, many physicians who do not fit into this mold.  A precious few are sprinkled throughout all specialties and departments.  However as a subculture unto themselves, the majority can be found working under the auspices of hospice and palliative care medicine.  So what do these doctors have in common that sets them apart from the norm?  They are surprisingly comfortable adopting a “don’t know” frame of mind.  This has nothing whatsoever to do with their level of competency in their field.  They can diagnose and successfully treat with the best of them.  These are the critical differences as I see them:

1)     They invest time with patients and their families.  They intuitivly know when to engage in being as opposed to doing.

2)     They have examined their own fears and beliefs around death.

3)     They invite input from outside sources, i.e., nurses, social workers, patients, caregivers, etc., and are able to care for the whole individual and not simply address a collection of symptoms.

4)     When patients and/or family members make decisions that run counter to their own opinions and recommendations, they don’t take it personally or attempt to manipulate in order to achieve a certain outcome. 

5)     Practicing “don’t know mind” and having presented all viable options of care, (evidence-based and otherwise), they are comfortable allowing people to stake out their own journey, accompanying them with unconditional support and respect each step along the way.

Sickness, dying and death can be a messy, chaotic and unpredictable business.  Those of us who have been called to this vocation have our caring hands full of emotional muck much of the time.  It is never straight forward, never black and white.  This is true of living, as well, and is why I love this field so much.  Working within the context of death teaches me how to live more mindfully, more compassionately.  And when I am able to step back and let go of my judgments and perceptions, I can say with all certainty: not knowing has been very, very healing.

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