Beyond the veils: hope, hospital curtains and Family Centred Care

What do you first say to parents of a baby with a serious medical condition? Same as you would to parents of a healthy baby. Mazeltov. My brother in law told me this on an elevator ride to get coffee at Sick Kids as he visited Sasha. I remember him three years ago sitting squeezed beside his wife's bed, his new borne daughter's glass crib and the yellow curtain separating the next family. They were exhausted first parents who had just heard their child had a hole in her heart and suspected Downs Syndrome. They were both processing a lot of unknowns, focused on their daughter. Later, with Sasha, many people could not get beyond the jaundice, wondering if she was sick, tanned, or was maybe adopted. Her pallor varied by the day. Many people got it right. Congratulations. She is so feistey. She is a gift.

Typically I have little time for white lies but it seems to me this is about growing up and being nice while being there. A little mindlessness amidst a lot of mindfulness. Yet you have to watch the mindlessness or it bites you. Here is a conversation that repeats over and over. 'She is so cute. Thanks. Is she your first? No, Mia is our second. Oh, where is your first? Sasha died in June. Oh, I am so sorry, I did not know. That is ok, you couldnt know. I am so sorry. Thank you, it is ok, we are happy to talk about our little peach.' We have exchanges like this when buying kids clothes or standing outside a toy shop. Looking for bigger tops to cover Sasha's 56 inch girth, a very young sales associate asked: Why is your daughter so green? I prefered questions to looks away. Mom could get incensed. For me, even the 'Will she get better?' was better than nothing. The answer was: we didn't know. We talked for a long time about a mother in line with her son at Dairy Queen: she was nudging him to look over at Sasha and was making a face, Pam caught the nudge and the face but what she remembered most was the embarrassment of the young teenager and him nudging her back. Speaking can be heartfelt or mindless and to speak the truth always runs a risk of causing offense but we get better with practise. Speaking, or simply being there in support, is about being a mensch, doing the right thing. Its also about finding your own power. There is nothing more powerful than getting busy with a little messy emotion. Often its about listening, an extended wait that allows someone, if there is time or inclination, to share the truth. Too much small talk can be dangerous to your emotional health. A little small talk with a receptive open ear and heart can go a long way.

These were some of my thoughts after reading Rabbi Landsberg's web log Behind the Veil [in memory of Sasha Bella Stein Blumberg] where she shares newfound new mother emotions and likens web logs to processes of personal revelation. Imagining God's thoughts is an awesome lifelong endeavour. Imagining a bereaved person's thoughts when a loved one slips through a crack in their world may be hard but we can ask the bereaved. And then over the next few days the symbol of the veil expanded to touch on so many areas of life.

It has potent religous and philosophical meaning. Judaism, Islam and Christianity all controversially call for women to veil their heads. The temple was divided into 3 areas: for the public, for the priests, and behind a veil was the holy of holies. Christians believe this veil was broken with their revelation of Jesus of Nazareth as the messiah. As the Rabbi writes, the expression 'behind the veil' attempts to understand how God sees the world. Or to try see God acting behind 'nature'. A bedrock of modern capitalism is the "corporate veil". Within philosophy, there is the "God's eye view" as the answer to the subject-object dilema. The radical "veil of ignorance" from John Rawles holds that a just system requires those making the rules to be ignorant as to their own final status so that outcomes are fair whatever your social position. Where those making decisions know their place then "veil rules" can hide the impact of the decisions. And surely veils are as much about revelation as about deception as the destructive and positive power of states and supra national corporations are veiled with self serving propaganda and mythology. Boston University titled a 2002 conference "Behind the Veil: Reporting on the Drug and Biotech Industry".

I have never experienced more emotion and spiritual wonder than at SickKids Hospital, hoping for a medical miracle, another intervention that would help Sasha more than harm her or threaten her already fragile quality of life. I now see hospitals, like many other institutional spaces where lives are saved and others die, as holy ground. And like all institutions, hospitals have their own institutional veils, foremost to protect patient confidentiality but also in the highly specialised knowledge and language of the doctors and nurses. Formally, SickKids is committed to empowerment of the patient and an evolving ideal set of core principles termed Family Centred Care which we experienced. It is continual work to embed them within the practise of all interactions with patients and families. They appear in For Families > Coming to SickKids and in a more potent and ideal form in Volunteer > Family Advisory Committee section

  1. families receive the information and support they need throughout the course of their children's treatment;
  2. each family's beliefs, traditions, and ways of coping are respected;
  3. families are invited to share their knowledge of their children and their suggestions for their children's care, to ask the question they want and need to ask, and to help identify the goals for their children's care;
  4. families participate actively in all of their children's care and become full members of the care teams

These empowering guides are missing from the Strategic Directions call to action.

Toward the end of Sasha's life we met with palliative care workers and they pulled aside another veil which challenges the seemingly uncontroversial urge to intervene and hope for a medical miracle. In some cases, hope can be a four letter word. The natural state is the damaged and deceased and compromised body, our surgeons acting as the hands of God is not recent but the tremendous success are less than a 100 years old. We benefit from hearing 'curative' and palliative options throughout. With Sasha, we were clearly told by her cardiac surgeon that he would do his best but that based on the specific circumstances he could not be optimistic and there was no cure. We did not factor sufficiently the state of her liver into that conditional equation. Ultimately the final veil was Sasha's own physiology: she was not only beyond perfect knowledge but also complex enough to challenge multiple care teams at a world class paediatric hospital. Our hope is that we can see some institutional lessons together to strengthen the hospital in tiny but meaningful ways as a tribute to Sasha's memory. And so we humbly explore this veil and the family centred care principles that push aside this veil as every moment with careworkers are moments away from sick children.

1 comment:

  1. there are great lessons here in this post and i wanted to thank you for them. your experience and wisdom was hard earned, but it also came with a Great Love, rare in this life, and i hope that helps to balance it. i'm so appreciative for this avenue of sharing, and the growth it hopefully allows you, and all of us who read.
    hugs to your wife and daughter and self,