by Dr Noreen Chan
Head & Senior Consultant, Division of Palliative Care, National University Cancer Institute, Singapore
The COVID-19 situation has hit some harder than others, but everyone has been affected by the rapidly changing circumstances and the need to self-isolate. At the start of the year, phrases like #socialdistancing, #flattenthecurve and #circuitbreaker had not entered our lexicon, we could not imagine what it would be like to stay at home all the time, not to be able to see friends and family, and to wear a mask when outside.
The infection control requirements have imposed an unprecedented level of isolation on all levels of society, exposed fault lines and inequalities, and turned long-cherished customs and beliefs on their heads. For example, when Work from Home (WFH) and Home-based Learning (HBL) became mandatory, it became evident that being forced to stay together at home was not only uncomfortable and inconvenient for those in cramped accommodation, but even harmful for victims of domestic violence.
Social conventions and practices have been drastically altered. We have been told not to shake hands, children are asked to stay away from seniors, grandparents are unable to cuddle their grandchildren. Palliative care and social work professionals who pride themselves as “low tech, high touch” now find that they cannot touch, and other ways must be found to connect. Suddenly we are all forced to stand apart, to embrace solitude.
This is so different from 17 years ago, during SARS. It was a different disease, a different time, a different world. Yes, we were all in PPE in the hospital isolation wards, but outside it felt much like normal. No one wore masks, you could go shopping or to the cinema, it was not taboo to meet your friends. In fact, hanging out with friends and families was a vital form of respite for us healthcare workers, who were grappling with an unknown disease that was killing our colleagues.
I was actually handed a HQO or Home Quarantine Order—one of my patients had developed SARS—and in order to ensure that I obeyed the roles, a CISCO officer came to my house to install a webcam, which was the height of IT sophistication at the time. The internet was not a new thing, but there wasn’t even “1G”, only dial-up internet access, so the webcam had to be connected to the telephone line. Every day at a random time, someone would ring the house phone and I would be told to go and sit in front of the webcam for 5 minutes.
All of us healthcare workers felt that people did not generally understand what we were going through, but we supported one another and we knew we had to keep going, because it was the right thing to do. So although there was a sense of isolation, I do not think we ever felt lonely or disconnected.
Yes, there is a difference between isolation (being alone) and feeling lonely. Susan Pinker, psychologist and author of “The Village Effect” calls loneliness “a subjective feeling of being alone against your will” … “a feeling of being excluded and of existential angst”. All over the world, people have been reporting increasing stress and anxiety as a result of COVID-19, and part of that distress comes from the enforced isolation. Humans are a social species, we use cooperation and connection to survive and thrive, so when we cannot do what we are hardwired to do, this makes it even more difficult to deal with the existential challenges of the pandemic.
And the challenges are enormous, especially for two groups of patients: the thousands of migrant workers affected by COVID-19 and isolated in hospitals and community facilities, away from their support networks; and patients at the end of life, whose loved ones cannot be with them for a variety of reasons.
For the terminally ill patients, measures such as lockdowns have resulted in family members being “stuck” overseas, unable to travel back. Or visitor restrictions in hospitals that allow one or two visitors at a time for patients who are critically ill.
Ironically, this has had a positive outcome of increased usage of community hospice services, as patients and families choose to avoid going to the hospital.1
Within the Isolation or COVID wards however, no visitors are allowed, not even if the person is dying. As a result, healthcare staff are the ones to ensure that the patient does not die alone, and that their families know that. Even after death, the grieving families have to deal with restrictions—on which funeral directors they can use, what the funeral wake can be like, how many mourners can be present.
While we can treat physical symptoms like breathlessness or pain, the psychological, emotional and spiritual distress of isolation can be harder to deal with. International and regional palliative care bodies have recognised the pandemic as causing significant problems for isolated palliative patients and families.2
Healthcare professionals have turned to technology to allow patients the comfort of seeing and speaking to their loved ones, and innovations such as robots or virtual/ augmented reality may allow isolated patients to “experience” the outside world more vividly. Some might say it is cold comfort, but in times like these, even the smallest comfort has value.
What about the healthcare professionals, the frontline workers putting their own health and wellbeing on the line for others? We have had to continue to go to work, and many serving in high-risk areas have isolated themselves from their families. The media has reported that hundreds of healthcare staff from all over the world have died as a result of COVID-19—including at least one doctor by suicide—and many more will be infected and affected in one way or another. How do you run a marathon when you do not know where the finish line is? How can we prevail through these dark days?
Maybe we should learn something from the Stockdale Paradox. This term was coined by author James Collins in his book “Good to Great”, following his interview with Admiral James Stockdale, on how he survived seven brutal years in a Vietnamese POW camp. Stockdale had said, “This is a very important lesson. You must never confuse faith that you will prevail in the end—which you can never afford to lose— with the discipline to confront the most brutal facts of your current reality, whatever they might be.”
This apparently contradictory—hence the term paradox—ability to balance optimism and reality, what some would call a “hope for the best, prepare for the worst” mentality, is what I see in some of my patients. They hope for more time, but they also accept the reality that they might not have that time. So they speak of miracles and also make practical preparations; they plan for future holidays (that likely won’t happen) yet do not forget to cherish the present.
What lessons can we take from COVID-19 and the enforced isolation, and how do we re-connect in new and meaningful ways? Technology can help, but we have to find ways of bringing ourselves to the interaction as authentically as possible. Even if our patients and families cannot see our faces, nor even hear us clearly behind the masks, they can still see our eyes, they can hear what is in our voices, and they can feel what our presence, intention and empathy bring to the conversation. Even separated by distance and time zones, we can be together in our shared humanity.
The former USA surgeon general, Dr Vivek Murthy, has written a book (soon to be published) called “Together: The Healing Power of Human Connection in a Sometimes Lonely World,” and to him, “Relationships are what make our lives worth living.” Our relationships are being challenged and re-defined by the pandemic, which is not a bad thing if you have been taking your relationships for granted, including your relationship with yourself.
Healing is not about curing. Healing is about restoring, making whole. When the worst of the pandemic is over, the new “whole” that we as individuals, communities and humanity co-create, will be different from what we had before, what we had thought was important and worthwhile. The healing actually has to begin now, because amongst the hurt are the seeds of tomorrow’s wholeness. We need to help ourselves, and one another, to reconnect and restore.
1 https://www.straitstimes.com/singapore/more-terminally-ill-patients-staying-at-home-or-in-hospice-not-hospitals
2 http://globalpalliativecare.org/covid-19/uploads/briefing-notes/briefing-note-the-psychological-and-social-implications-of-physical-isolation-for-patients-and-families-during-the-coronavirus-pandemic.pdf
Times Like These
by The Foo Fighters
(David Grohl, Taylor Hawkins, Nate Mendel, Chris Shiflett)
I, I’m a one way motorway
I’m the one that drives away
Then follows you back home
I, I’m a street light shining
I’m a wild light blinding bright
Burning off alone
It’s times like these you learn to live again It’s times like these you give and give again It’s times like these you learn to love again It’s times like these time and time again
I, I’m a new day rising
I’m a brand new sky
To hang the stars upon tonight
I am a little divided
Do I stay or run away And leave it all behind?
It’s times like these you learn to live again
It’s times like these you give and give again
It’s times like these you learn to love again
It’s times like these time and time again
It’s times like these you learn to live again
It’s times like these you give and give again
It’s times like these you learn to love again
It’s times like these time and time again
It’s times like these you learn to live again
It’s times like these you give and give again
It’s times like these you learn to love again
It’s times like these time and time again
It’s times like these you learn to live again
It’s times like these you give and give again
It’s times like these you learn to love again
It’s times like these time and time again
