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

Let Them Eat Pigeon*

Or perhaps they would rather “Eat The Rich,” as a protest sign said.

My friend Terry** and I had made plans to have dinner one night a couple weeks ago.  A much anticipated email arrived that afternoon – Terry made a reservation at PiDGiN.  The name perked my interest.  I recently started using the open source system, Ubuntu, and Pidgin is its nifty default instant messaging (IM) program that allows people to connect to multiple chat networks simultaneously.  Ubuntu is not just software – it’s also about the community, which is what attracted me to it.  Would there be any connection between Pidgin the IM program and PiDGiN the restaurant?  

I didn’t have time to find out much about the restaurant.  I only knew it is in the Downtown East Side (DTES) and which bus to take by glancing at the address.  This infamous and highly stigmatized neighbourhood is home to many low-income residents, especially those plagued with mental health and addiction issues.  These problems are particularly acute among Aboriginal people, who are disproportionately represented in the area and continue to face discrimination, cycles of difficult circumstances, and barriers to care.  

Terry and I have explored eateries in this and other areas – we both believe in supporting local establishments.  However, as I approached the restaurant, unexpected protestors and picket signs awaited.  A woman explained that this new eatery across the Pigeon Park -- a hangout place and makeshift home for many without sustainable shelter -- is pushing people out of their homes.  (The building had sat empty for decades.) One picket sign said, “Do the right thing – don’t go in.” Seeing through the glass door that Terry was already at the bar, I explained that I had to meet my friend.  I asked the protester if she had flyers with information about their concerns.  She didn’t, but recommended that we dine elsewhere.  She probably meant in a different neighbourhood.  The protesters believe the area should not be open for business until everyone has affordable housing. 

In my clinical ethics work, my colleague and I are regularly confronted with how to ethically and safely discharge patients who have longstanding mental health and addiction issues back to a neighbourhood frequented by drug dealers and drug users, which can reinforce people’s cycle of problems.  Safeguarding cheap housing in an enclave when the real estate in the rest of the city has become a speculative commodity may keep the residents there, but without some form of revitalization or upgrade, preserving a squalor would unlikely evoke hope or promote health and wellbeing.    

The closure of Woodward’s department store and other businesses during the early 1990s contributed to the downward spiral of the neighbourhood, challenging the over-simplistic assumption that shutting down businesses would promote better housing options.  Ironically, such closure may exacerbate the problem by preserving the “ghetto” character of the gritty enclave.  Protesters argue that the residents want to stay in DTES because they feel accepted there.  I’m not recommending forcing people to move, especially in the absence of affordable options elsewhere.  But confining impoverished people to and resisting refurbishment of a squalid area is an antithesis to equality and acceptance.  Such strategy also easily allows those living in other neighbourhoods to turn a blind eye.  People should feel accepted anywhere.

Terry and I decided to stay, recognizing that we could be branded with other diners and the restaurant owners as villains.  Paper was taped to the lower parts of the windows, but the protesters tied flashlights to poles to shine inside.  (The windows have since been frosted.)  

So in a few short minutes, I went from looking forward to catching up with a friend after a tough week to being shamed for allegedly contributing to gentrification.   Based solely on our location choice for one meal, we were pigeonholed as part of the presumably one-dimensional, selfish, and uncaring conglomerate called “the rich.”  Certainly, any impact on the shamed diners, albeit unfair, is likely minimal compared to the damage that many residents in DTES face because of systemic marginalization and discrimination.  But would the harassment actually help to bring people together to collaborate on sustainable solutions? 

After the meal, Terry and I chatted with some protesters to learn more about their perspectives.  Occasional comments of “shame on you” by some picketers to patrons entering or exiting the restaurant aside, our discussion was cordial and somewhat informative.  But instead of pestering diners, some of whom may want to be part of the solution in various ways, I wonder if the protesters could instead pass out flyers that can give patrons and passersby information.   Yelling at people would likely provoke defensive, dismissive, and divisive reactions rather than encourage collaborative responses.  But well-rounded information can help people be responsible consumers and engaged citizens.  And rather than harassing business owners, protesters and activists can perhaps partner with them to help train and hire area residents or to coordinate opportunities to support the community.  After all, a healthy neighbourhood is good business.

Certainly, the protesters may balk at the suggestion of niceties when moral outrage for persistent problems in the DTES is required.  Nonetheless, their tactics sidestep larger system problems that cannot easily be put on PiDGiN or its customers.  The problem isn’t that an upscale restaurant opened in the DTES.  High-end stores have been in the neighbourhood for decades, and mixed neighbourhoods can help promote vitality that is often necessary to promote healthier lives for all.  Much of the problem lies with the inability of the municipal and provincial governments in effectively managing multi-faceted issues in integrated manners. 

When I first heard of the restaurant’s name, I thought of the IM program on Ubuntu, which promotes community and tries to minimize elitism or the “us versus them” mentality.  New restaurants often have difficulty surviving even without protesters, and whatever PiDGiN’s fate, I only hope that Vancouverites, rich or poor, could unite as part of the same community in petitioning policy makers and service providers in finding sustainable solutions.  Protesting in front of the restaurant, while provocative, would likely further marginalize people who can benefit more from integration rather than segregation. 

Image Sources: PiDGiN protest (day), PiDGiN protest (night), See the Rich, Ubuntu

*Young pigeon, or squab, is often considered a culinary delicacy.
**Terry is a pseudonym for my fellow dining villain :)
Acknowledgement: A special thank you to a co-conspirator, who encouraged me to write about local issues and shared ideas with me on this topic.  

(Normal?) Family Day

Salute to British Columbia, which celebrates its first Family Day today!  That is just the day after the Lunar New Year, which is another big family-oriented holiday in many countries, and a few days before Valentine’s Day.

They say money can’t buy love.  Well, tell that to the American men and women who will be set back for about $175 and $89 respectively.  That’s when the average credit card debt already stands at $7,194.  But if you feel bad for people who have to buy for a lover, just think about those single women in China who have to rent one.  Apparently they feel the need to hire “boyfriends” to take home for new-year gatherings to combat family pressure.  My own moral judgments of this enterprise and the families’ expectations aside, the ploy is obviously non-sustainable.  I wonder what these women would rent if their families expect them to get married and have kids.

Those who live outside of China aren’t immune to the pressure of being in a traditional relationship and having a family either.  The world is filled with the message that one better has a very good justification to be single.  And even though the nuclear family is no longer the norm in Canada or the United States, people in heterosexual relationships are expected to have children.  I know of a woman whose (then) husband told her that there was perhaps something pathological about her resistance to bear children, since he thought a desire to procreate was simply “natural.”  People (particularly women) who don’t want to procreate are often accused of being “just plain selfish,” as if all children are born as a result of reflective decisions or unwavering commitment of lifelong selflessness and altruism.

It would take a whole other blog entry to get into all the reasons why people may (not) want to procreate.  Suffice to say though, whatever one’s procreative decision might be, some reasons are carefully deliberated while others are not.  But I have the most admiration for many, biological parents or not, who love and care by adopting, fostering, nurturing, and educating children in whatever ways they can.  On a social level, any pro-family or pro-children stance can’t simply be about procreation.  It has to be also about advocating for access to affordable childcare, quality education, paid parental leave, and support and recognition for hired and familial carers.  It also has to be about allowing everyone, regardless of their sexual orientation, to experience the same joy and misery (!) that marriage and family life bring forth.  It is troubling that in 2013, many people in various parts of the world cannot even reveal their sexual orientation to others without being prosecuted or persecuted, let alone marry or have children. 

As a philosopher, I’m often concerned about definitions, particularly those that can affect people’s identity, political rights, and access to services.  But when it comes to love and family, I would rather let people define that for themselves.  Love and family ties can be manifested in many different ways, but they generally require long-term reciprocal investment that will make the $175-gift seem cheap.  People ought to have the freedom to negotiate with each other what arrangements work best for them given their contexts.  This requires not simply freedom from government sanctions.  It also demands freedom from social pressure.

May your February be filled with love, however defined.

Image Sources: Normal family, I love you