Talk about death, with loved ones!
Published : Tuesday, 7 April, 2020 at 12:00 AM Count : 369
I have known my colleague Shawn, a man in his seventies - who has been on a ventilator, for almost two weeks. His heart, lungs and kidneys are failing. As a knowledgeable person, I know these facts about physiology, but I also wish to be by his bedside. For, pure solidarity! Rules of social proximity have changed. Therefore, I will never see him up close. I can only glance at him through clear glass doors, the ventilator and dialysis machine obscuring his face. The coronavirus has limited the number of physicians who can enter his room.
I cannot sit with Shawn's distressed wife and children, to ask what sort of medical care he would want. I cannot read their body language, lean in toward them or offer a tissue....as they cry. Today, because of the coronavirus, most hospitals don't allow families to visit.
Courtesy of family friends, I met Shawn's wife and children on a Zoom conference call, a popular social-connection tool, in the updated world we live in.
'I want to apologize to you today--for being a face on a screen,' I began. 'Wish we could talk about this in person.'
They nodded together, their eyebrows furrowed.
'Wish that I had better news to share,' I said. 'Unfortunately, despite our very best efforts to support Shawn's heart, lungs and kidneys, his body is showing that he is getting sicker.' I watched, disembodied from a distance, as they hugged each other and cried
His wife has expressed that Shawn had never talked with her about what he would want in this sort of situation. 'l don't know what he would say,'she said. 'We didn't think this would ever happen'
Americans are not good at talking about death. But we need to be prepared for when, not if, illness will strike. The coronavirus is accelerating this need.
In Italy, doctors have had to make excruciating decisions about which parents receive ventilators (which are in short supply). In the United States, we are already facing shortages of life therapies; doctors will need to make these same difficult decisions.
Obviously, our collective silence about death, suffering and mortality have all placed a tremendous burden on the people we love, and on the doctors and nurses navigating these conversations. We should not be discussing our loved one's wishes for the first time when they are in an ICU bed, voiceless and pinned in place by machines and tubes.
Talking about death is ultimately talking about life - about who and what matters to us, and how we can live well even when we are dying. Rather than being motivated by fear and anxiety, we can open these discussions from a place of care and concern.
Not many years ago, I opened a conversation about death with my own mother while she lay in semi conscious state, on a bed at the Aga Khan Hospital. 'I see a lot of people here getting really sick with their old age. None of us knows what's around the corner, and I want to be sure I know what you would want for yourselves when you get really sick,' I told her, rather shakily. 'I want to be your voice so that I can make decisions for you, not for myself.'
She was alert and responded bravely:' I needed a ventilator for a short time, or dialysis, that would be OK, but I would only want treatments that would not make me dependent'. Partially in pain, mother had quickly got her message across!
My sister, who had joined us, nodded in agreement. 'My main hope is to be with all of you. If I will lose my ability to be myself, if my mind will never be clear, please just let God take me," Amma had told me, staring blankly.
Though it is a daunting task, talking about death offers opportunities for grace and connection with our loved ones. Last summer, I watched as a coworker's brother, perhaps tell her for the first time how much he loved her, just before she told him she was choosing hospice instead of a clinical trial.
'This was what she always wanted, my late mother had confided. when we discussed what was most important to her. I put it off for so long, but I have to do it before I die.'
In a world full of suffering from the coronavirus has made me ask myself the questions I hope you may now need to ask yourselves and the people you love:
What is most important to me, in my life? Perhaps, my family and loved ones and my ability to write and talk!
What makes my life meaningful?
Obviously, my work, walking by the beach...being outdoors; being with my loved ones!
What sort of quality of life would be unacceptable to me?
I will certainly be unhappy if I am permanently bed-bound or neurologically devastated; indignity and suffering; totally depending on others for personal care.
Who is best positioned to speak on my behalf?
It is my son, Yasir!
Would I want to undergo C.P.R. should my heart stop?
Yes. Only if the issue leading to the cardiac arrest is reversible. If my heart stopped even when I was being sustained on life support machines or dying from an incurable disease, then I'd prefer to die peacefully rather than with C.P.R.
What would bring me comfort if I were hospitalized?
I believe, the old Pictures of my parents and my loved ones. Perhaps, a little soft music ....and, yes, prayers!
This is by no means an exhaustive list of questions. The Conversation Project offers many more, as well as guidance on how and when to begin these conversations.
It is time to be serious. Confronting our fears about death--having a conversation about it in open and candid terms--can be alternately terrifying and tender. Yet knowing how to honour our loved ones' wishes when they can't speak for themselves is one of the bravest and most loving things we can do.
My good wishes to all those who are going through personal crisis, in their lives. Stay blessed!
The writer is a former educator
based in Chicago