I HAVE spent the past month conducting palliative care research in the Gaza Strip, part of the occupied Palestinian territory. In the past 2 years, traumatic injury from violent clashes between Israel and Gaza have created overwhelming health needs. Palestinians also face a non-communicable disease crisis. Health services in Gaza are on the brink of complete collapse after years of blockade and protracted conflict.
I was there to listen to the stories of Gazan people: women with breast cancer whose access to chemotherapy is impeded by drug stock-outs, patients injured by gunshots and enduring severe neuropathic pain or facing limb amputation, families of children with leukaemia struggling to afford healthy food for their sick child, and health workers overwhelmed and overworked, many not receiving wages for their service. The stories were filled with sorrow and pain. The storytellers often cried. Sometimes I cried with them. Other times, I sat in silence and held their suffering in the intimate space between us. Through these illness narratives, I learned the significance of knowing a doctor who cared and communicated, a nurse who would offer a smile, or a social worker who could spare the time to listen.
As I left Gaza, the already fragile health care system was ramping up their preparedness to tackle COVID-19.
My journey to Australia was a race against border closures, flight cancellations and cities in lockdown. I made it safely back in good spirits, ready for self-quarantine. One day after my arrival, I began to feel a sore throat, chest tightness and a mild fever. I presented for COVID-19 testing.
This is where I finally came unstuck. The foreboding reality and impacts of this virus were there in stark view, mostly in the intimidating nature of personal protective equipment (PPE) and the effect PPE has on behaviour, the delivery of health care and the normal clinician–patient exchange.
Each clinic attendee is met on arrival by a health worker in full PPE – an N95 mask that covers the mouth and nose, goggles, gloves and full-sleeved gown. Each attendee is instructed to don a face mask of their own and then make their way to each point through the clinic – from the health worker in PPE taking personal information, to the health worker in PPE performing vital observations, to the health worker in PPE whose job is to triage people to the screening room. The final destination is to a single chair, still slightly damp from the cleaning disinfectant used after the previous occupant, carefully placed at a safe social distance from the next. There, each attendee must sit and wait. Eventually, some will be classified by the doctor in PPE as qualifying for testing; and will receive an uncomfortable swab down the throat and up the nose. Then they will wait again back in the solitary chair for the doctor’s certificate, further instruction, and release out of the clinic.
Within seconds of putting on my face mask, I realised that I am claustrophobic. I don’t like things covering my face or mouth. I’ve never been able to snorkel or dive. The sensation causes me to panic. I absolutely understood the importance of the mask to protect myself and others from contagion. I had to persevere, but I expressed my angst about the mask as my breathing sped up and my head spun. Each health worker responded by pulling the mask tighter across my nose to get the right seal and getting on with the job. I tried to catch their eyes, searching for something small in their glances to put me at ease. I couldn’t find what I needed. I felt anxious and awful. Two deaf patients followed me in. I wondered how they were coping through the unfamiliar barrier of masks which conceal the lips and render invisible much of our ordinary facial expression.
I spent 3 hours at the screening clinic that day. When I finally made it back to the car, I sat and sobbed for many minutes. I was grieving. There was a steady but manageable flow of people seeking testing. The process was a bit clunky. But it’s early days for Australia in the course of this pandemic. There will be time to improve the process and the systems. What caused me to become unstuck wasn’t the process. It wasn’t even the thought of having the virus – my result was negative. It was an idea far deeper and yet seemingly so simple. And something our frontline health workers must get right as we move deeper and with greater uncertainty into this crisis: how to project small acts of compassion.
I have previously written on the power of “small but potent acts” of compassion in health care in humanitarian crises. The Gazan stories made clear the devastating impact on a person’s journey where kindness in health care was absent, and the profound effect compassionate acts – good communication, a passing smile, offering sips of water – had on alleviating suffering. Small acts of compassion are critical in a pandemic of the kind we now face to help us manage our discomfort and our grief. And yet on that clinic day, I couldn’t find it.
The whole experience of face masks and PPE is alien to most of us. The chairs carefully laid out at a distance from each other is unfamiliar and confronting. I’m sure for many of us, it instils disquiet. For some, it might be outright terrifying. This was once a scene from ET, the extra-terrestrial (1982), or the stuff of distant images of an epidemic in a far-off country. Unfortunately, it is now becoming an all-too familiar picture on our TV screens.
Our health workers operating on the frontlines of the coronavirus response are going to experience huge workloads and immense strain. Many of them may fear for their own health and mortality, and that of their families and friends. “We are asking great things of them,” writes humanitarian author Hugo Slim. We thank them, and we salute them. Donning PPE may be just as foreign and disconcerting to them as it is to those on the receiving end. So what will make for compassionate health care in such a time of crisis? To each health worker, whether in the screening clinic or in treatment services, or those supporting very ill patients who may die despite best efforts, I suggest the following:
The PPE may conceal expressions and smother words. Do not forget that each person is human. If you cannot read their face, listening carefully to the words they are saying becomes ever more important. What I needed in my mask-wearing agitation was someone to hear me and validate my feelings. Someone to simply say “I understand this isn’t normal. Try and slow your breathing. You will be okay”. To offer some small words of comfort, to spend just a short moment bringing me out of the anxiety, helping me ground my feet, or supporting me with basic mindfulness.
The PPE may disguise countenance, restrict normal human touch, and create an unfamiliar gulf between you and your patient. Your eyes, your voice and your body language become your greatest assets. Use them to spread warmth and kindness. Make your eyes dance, your voice sing, your body show caring through the simple gesture of a thumbs-up sign, a pat on the shoulder or a little wave – even through your blue-gloved hand.
The PPE may not only cause physical unease but may aggravate your own fears of this crisis. Show courage and spirit to aid the morale of those you serve. Draw comfort from your colleagues. It will be easy to lose connectedness as this crisis worsens, and easy to hide behind your protective barrier.
In the wake of the 2014 West Africa Ebola crisis, much was written on the practical limitations of PPE in performing health tasks adeptly, and on the role that protective clothing played in intensifying distress for patients. A study in Singapore during the 2004 SARS epidemic explored the disruption of human connectedness between patients, families and health workers as a result of disease containment and isolation practices.
Our humanity is about how we connect with others and the environment around us. In an era where “air-hugs” are commanded — going against every grain of our deep human need for touch — and a time when we may not even be able to see clearly the faces of those we love or those who support us, deliberate “small but potent acts” of compassion will go a long way to ensuring that we can find comfort in someone who cares.
The palliative care community in Australia are readying themselves for a worst-case scenario in the COVID-19 pandemic and are mobilising to provide guidance to any health professional across the country caring for a seriously ill or dying patient. With expertise in addressing psychosocial and spiritual needs during times of crisis, palliative care teams have much to contribute in suggesting ways to improve human connectedness, supporting health workers to work compassionately through PPE, and helping health workers deal with stress and fear.
The ways in which our health workers behave amidst our panic and fear of the future, whether those operating at the level of screening or those working with the seriously ill, will play a huge role in steering a course of kindness and integrity in crisis. “Small but potent” acts of compassion delivered through the barrier of isolation and PPE can help remind us of the preciousness of every human and ensure that we truly can all get through this together – this is true as much in Australia as it will be when COVID-19 strikes in Gaza.
Rachel Coghlan is a health professional and PhD candidate at the Centre for Humanitarian Leadership. Her work focuses on the role of palliative care in humanitarian emergencies and crises such as wars, natural disasters and disease epidemics. She is a member of the Palliative Care in Humanitarian Aid Situations and Emergencies (PalCHASE) network, and a member of the Australian Palliative Care COVID-19 Working Group.
The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.