Sunday, 19 May 2013

You Can('t) Find Him in the Vegetables Section

I wonder who first thought of calling a person a “vegetable.” Certainly, some people may have minimal or undetectable consciousness, and these situations pose challenging clinical and ethical questions about whether to continue life-sustaining treatment that will unlikely provide any chance of recovery.  But how did we ever get to a point where we would call a human being a vegetable?  I eat vegetables.  Even vegans eat vegetables.
In Toronto, the situation of Mr. Hassan Rasouli, who underwent surgery to remove a benign brain tumour but then suffered a massive brain injury because of post-op infections, is being considered by the Supreme Court of Canada.  Very briefly, Mr. Rasouli’s physicians believed that their patient was in a “persistent vegetative state” with no realistic chance of medical recovery.  They decided to remove mechanical ventilation that was likely “futile” – an F word that some may find contentious and subjective.  Mr. Rasouli’s family fought against the decision based on their religious beliefs and their perception that Mr. Rasouli was gradually more aware of his surroundings.  They took videos of him clutching a ball thrown to him and making a “thumbs-up” gesture in response to his family’s requests.  As medical professionals continue to assess Mr. Rasouli’s neurological status, the Court’s task is to determine whether patient or family consent is necessary to withdraw life support. 

As mortal beings, there are times when even critical care will not reverse fatal conditions.  In some of these situations, aggressive treatment may cause more harm than benefits, and medical professionals have good reasons not to prolong the dying process or aggravate suffering with these interventions.  Mr. Rasouli’s medical team probably wondered if his family just didn’t get it or couldn’t let go, his wife being trained as a physician notwithstanding.  

From my experience as a clinical ethicist working with clinicians and families in similar situations, families often do recognize that the end is near.  But for many families, clinical indications are not the only considerations.  Many families also consider other relational and emotional issues when making treatment decisions, such as how various decisions may affect the family dynamic, symbolize their relationship with the patient, or honour their memories of their loved ones.  In times of unexpected medical tragedies and grim prognoses, many families also need time to process what’s going on to make sure that they are doing the right thing – after all, they will have to live with how their loved one dies for the rest of their own lives.  Many families want to hold on to hope, and advocate for their loved one who may not be able to speak for themselves anymore.  They want to remind those of us on the medical team that their loved one is not dead yet, so that we should not give up on them.  In their mind, stopping treatent equals abandonment.

Clinicians can be the best technicians and care providers they can be, but they are not miracle workers and should not be considered as such.  So keeping hope and not giving up cannot be about trying to do the impossible.  But they can be about remembering that, regardless of their recovery potential or neurological status, the patient in front of us is somebody’s partner, parent, grandparent, child, friend, or sibling with rich stories and relationships.  Keeping hope is also about reassuring families that we will honour their memories, relationships, and  grieving process, and that whatever the prognosis and treatment decision, we will never abandon the patient.  As my colleague and I regularly explain to clinicians and families, care is and will always be 100%.  Even when critical care may no longer be clinically appropriate, there is a lot that we can and will do to help the patient live as well as possible for as long as possible, as a palliative care colleague would often say.  We will continue to treat the patient with dignity and provide symptom management and pain relief as appropriate for the patients’ specific situations, and we will recognize the relational identity of the patient and help ease the family’s distress in these heartbreaking moments. 

Being involved in research regarding medical decision-making and bedside consultations, I contemplate how we can best serve the dying and their loved ones in the most distressing times on a daily basis.  My grandmother just passed away at the age of 98.  She was the gentlest soul, and yet her body was most resilient, making some of the care decisions very complex.  Lamentably, I could not communicate with her the last couple times I visited her -- she was not rousable on the days I visited, although my family assured me that she was more alert on other days.  In the past few years, there were times when I had to discuss with my family what care pathway would best honour my grandmother and promote her well-being if and when her health declined.  But most importantly, having worked with numerous compassionate and devoted clinicians, I hung on to one hope.  It was the hope that technologies had not desensitized us into thinking of human beings as mechanical body parts, and that regardless of the treatment decisions and my grandmother's (in)ability to communicate, she would never be treated like a broccoli, or a carrot.  She was my grandmother, and would and should always be remembered as such. 
Image Sources:
(1)    Carrot All
(2)    Mr. Rasouli

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