On a tale of two caretakers

Halfway through my palliative consult service rotation. I’ve gotten into a good rhythm. I feel like I know what to expect when I walk into a room with the team to discuss goals of care.

Until I don’t.

This week, we consulted on a case involving a Ghanaian immigrant and her adult son. She is in her sixties and served as a congregation leader in Ghana for the Pentecostal Church. From her son, I find that she is heavily involved in faith healing and has cured cancer, reversed paralysis, and restored fertility. A powerful woman in the spiritual world.

Her son, “Jason”, is a powerfully built example of Ghana. M’Baku, the Jibari tribal leader from the 2018 movie Black Panther, is a spitting image of the son: both in physical stature and in his wonderful accented English. Because the mother is essential non-verbal at this time and he is the power of attorney, Jason is the point of contact to discuss goals of care regarding his mother.

The first meeting occurred on Wednesday. The attending and I found a small conference room for the meeting with Jason. We went into the meeting with the knowledge that the family wanted to pursue all options of care, primarily due to their religious beliefs.

She had been transferred from an outside hospital to our network for consideration of a kidney transplant. With her numerous co-morbidities, including numerous strokes and a recent brain bleed, she is not eligible to undergo such a demanding surgery and recovery. Now, with our nephrologists feeling that she is overall terminal and should be transitioned to end-of-life care, we walked into a tense conversation.

The attending and I took the usual route. Asking about DNR/DNI, with specific details related to the consequences of chest compressions and intubation. He immediately responded on the defensive, not giving an inch and crossing his arms in the process. With most families, when we go over the morbid details of resuscitation, they decide that this is not what the loved-one would want. However, Jason seemed to only dig in further.

Feeling the tension, I changed tactics and asked him, “What level of suffering are you willing to put your mother through?”

He answered tersely, “Yes.”

I paused. I probably made a face. My question was not a yes or no binary question. I rephrased. “On a scale of one to ten, ten being the most suffering imaginable, how much are you willing to put your mother through?”

Without hesitation, he responded, “Ten.”

Feeling that the conversation had reached the point of diminishing returns, the attending shortly wrapped up the discussion. We would not make any headway here. Pushing the issue further would only drive a deeper wedge in the therapeutic relationship.

The attending and I debriefed afterwards. She felt that the conversation went about as well as she had expected from reports regarding the son. I felt that there was a different tact, one of understand instead of confrontation that might yield more fruit.

So the next day, I visited Jason alone and requested the opportunity to speak with him and learn about his beliefs.

Initially, he presented very guarded body language. Understandably so. I opened with a sincere apology for the conversation yesterday: I felt that it was not constructive and forced him on the defensive.

He loosened up and accepted my intention, telling me that he was very upset afterwards. I told him that we would not be making any decisions during this conversation. I simply wanted to understand his beliefs which result in such different treatment values from the majority of families we see on the palliative service.

Jason smiled and nodded. He knew that his spirituality is incredibly foreign to our western medical ears and sensibilities. So I began asking questions out of curiosity, instead of attempting to change his mind or reach a conclusion that I desire.

His mother came to the United States two years ago to receive treatment for her kidney disease. He arranged the paperwork for the visa, he jumped through all of the hoops necessary to get her stateside. When here, she did not have insurance and did not receive the care she needed as a result. Maybe she wouldn’t be nearly as sick if she had been treated with the respect she deserved.

Jason quit his job as a manager of a rental car company in order to spend more time at home and care for his ailing mother, to bring her to appointments, and to navigate the complicated medical system on behalf of his mother who only speaks her native language. He now drives Uber and manages to pay for her medications and her insurance on his own.

His support system is his loving wife. He has siblings around the world, who all trust him to make decisions on behalf of the family. He has a RN sister and an MD father, so he is far more medically literate than I initially imagined.

His mother is a powerful woman. She told the family that she would get a stroke and fall very ill, but that she would recover. A few weeks later, she suffered her first CVA. The entire family believes that she will battle through this illness. She has demonstrated too much of a connection with God for them to think otherwise.

And if she does die? Jason will know that it was her time and that God will take her when He deems it appropriate. It is his job as son to ensure that she receives all the care possible to leave that door open to recovery. We call it blind faith. He calls it trust.

The family believes in the power of voodoo. He tells me while leaning in that he has seen this himself. An uncle died and he haunted the remaining family members because they wronged him. In his afterlife, he caused great sickness and even death.

Jason worries that if he withdraws care from his mother, leading to her death, then she would cause him and his family great suffering. He desires to fight on his mother’s behalf until his back breaks and his fingernails give way. He feels this is a test of his faith, both in his mother and in his God.

We end the conversation with wide smiles and a deeper understanding of one another. I write a short note in the chart detailing the two-fold reasons for his pursuit of aggressive care: that she has too much spiritual strength to not recover, and that if he did not fight on her behalf, then she would haunt him from the afterlife. Later that day, a case worker detailed in her note that she is thankful for mine, because I helped to clarify the family’s reasoning for their approach to her care.

I feel much better about this encounter, until the next morning, when we have the Interdisciplinary Team Meeting. Every Friday morning, the hospice inpatient team and the palliative consult service convenes in a large conference room to discuss difficult or troubling cases. These sessions remind me of Balint Groups: someone presents a case, the group takes on the various perspectives, and then we close and move onto the next one.

This week, one of the fellows who currently rotates in the Pediatric ICU presented a case. A mother, probably in her mid-fifties, who cares for a 15yo daughter with mosaic Trisomy 18. Also known as Edwards Syndrome, this inborn chromosomal disorder is usually fatal before birth. However, because this child only partially exhibits the anomaly, she has survived with the help with incredible medical care.

The fellow described meeting with the mother, who has given up her entire life to care for this medically fragile child. She sleeps in the bed with the daughter, resting a hand on her chest so that she can wake up if there is a change in the respiratory rate and adjust medications or positioning. This mother spends no more than an hour away from her child at a time since birth fifteen years ago: she does not feel like anyone else would give her the proper care necessary, so she shoulders the burden of care-taking alone.

The mother, upon interview, was tense. Used to playing defense against medical professionals who use code-words like “quality of life” to imply that her daughter would be better off dead than living in this fugue state supported entirely by medical care. The fact that this child made it to her teens is a testament to the devotion of the mother: when the fellow mentioned that the 6 admissions this year to the LVHN PICU was a lot, the mother countered with, “That’s nothing. This year, we had a dozen at CHOP in addition to here.”

Moving to a place of understanding instead of confrontation, the fellow discussed spirituality with the mother. Her deep Catholic faith has translated this experience into a test: she must support this child for as long as she can and she cannot give up on her. The mother is well-past menopause and her entire life is caring for this child. She conceived with advanced maternal age, in the late thirties, which likely contributed to the chromosomal disorder.

Before I heard about the Catholic faith, I felt strongly in my psychiatrist bones that this woman is a major suicide risk once the child dies. And the child will die, it is only a matter of time. However, upon hearing about her religious devotion, I felt I had been handed a major piece of the puzzle. This woman’s faith brings her to do things that we might not understand or even agree with, but these are her values. As medical professionals, we can advise and educate. The final decisions are truly up to her.

When the presentation finished and the team took on the case, we all felt deep sympathy for the mother. The last best chance of having a child turned into a decades-long struggle to simply keep this daughter alive. Doctors and nurses never understanding why she endures this challenge, almost always advising the ‘easy way’ out of this test.

However, when we finished the Interdisciplinary Team meeting and moved onto the normal morning rounds to discuss the cases of the day, I felt a deep hypocrisy.

About halfway through the list, I presented Jason’s mother. The complicated reasons why she was brought to the hospital, the poor prognosis from nephrology, and the religious and spiritual reasons for pursuing every avenue of aggressive treatment. With my explanation, I thought they would all understand why this loyal son remains steadfast in his beliefs.

Instead, they scowled.

“Unbelievable!”

“We should consult ethics on this, this isn’t right.”

I had trouble forming a response, so I remained silent in the wake of their strong reactions. With some time to reflect, I think I understand some of the reasons for a different tone to similar cases presented only minutes apart.

First, Jason’s mother has lived a full life. Within the culture of hospice and palliative medicine, we err on the side of comfort rather than aggressive treatment. We ask: does this give them more quality years of life, or does this prolong their death?

Second, the child with Trisomy 18 is the mother’s last hope of biological parenthood. A room full of mothers and fathers can easily empathize with her struggle. And many of these providers have experienced the death of a parent through hospice and could not imagine putting their mother or father through such a painful and suffering-filled experience for no apparent benefit.

Third and possibly most likely, is cultural. We can understand the values of a white Catholic mother who believes in the sanctity of her child’s life. We have no reference point for faith healing and voodoo, for a rich African tradition of earth-based herbalism and animism.

The world of medicine does not respect the power of the spiritual. My peers may nod their heads politely while hearing about the destructive potential of ghosts. I feel alone in my empathy with the son.

And a final reason, which I hope is not the reason, is racial bias. An African immigrant yields a different reaction than a white Catholic, especially in a monochromatic room where I am one of the two humans of color.

We espouse the importance of values-based patient-centered care. It is far more difficult to live this approach than it is to verbalize. We, as the treating team, may have ethical conflicts of interest when it comes to a patient’s care, but we need to be mature and self-aware enough that the patient’s values are not ours to change. If Jason believes his mother needs all possible avenues of treatment and our nephrologists are not comfortable offering dialysis, then we should refer them to other hospital systems that will.

We will not agree with the spiritual beliefs of every patient we meet. It is, however, our duty as care providers to prevent our individual emotional reactions from interfering with the sacred doctor-patient relationship. We serve our patients and while we may change their lives, we cannot tell them how or where to change.

I keep coming back to this idea of voodoo and haunting from the afterlife. Thankfully, on Friday when I checked in on Jason, the nephrologists had just stopped by and offered dialysis. They seemed to understand that the values of the family would not change. But what if we didn’t offer all of the treatment we had in our arsenal? If we surreptitiously moved his mother to end-of-life care against his explicit wishes?

Who would she haunt? Would she see that her son did everything that he could on her behalf? Would she see the nephrologists as the ones that wronged her? Would she see that initial palliative consult and feel that we didn’t understand Jason and their culture?

And maybe that is why I went out of my way to meet with Jason that second time, alone and in a sense of understanding. Maybe I didn’t want to test her spiritual strength from the afterlife. Did my conversation and my short note move things in the direction we needed to go? Did I act as a pawn of God on behalf of this family?

I like to ask a philosophical question, “Do we know 95% of what there is to know, or do we know 5%?” Where you land on that question says much about your personality. Are we at the 95% and fine-tuning the last remnants of knowledge? Or are we at the 5% and feeling like kings when we are truly paupers?

I know where I land on the question. And that helps me put this case to rest.


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