Death, Dignity and the Decisions that Trouble Us – Dr Joel Winney

A pandemic perspective

13 MINUTE READ

From Luke’s Journal 2021 | Dying & Palliative Care | Vol.26 No.2

“Quick, call his wife to come in!”

“What should I tell her?”

“What do you mean?”

“Well, is she even allowed to come in to see him? She’s supposed to be self-isolating and has no way to get here without exposing someone.”

“Just call her. She should come in.
He’s not looking good. We’ll figure out the logistics.”

That was the conversation, as I remember it in my head at least. It’s all a bit of a blur. To be honest, it was more like fifteen or twenty conversations by the end of the night – a dozen phone calls with at least three specialists, infection control, and the hospital executive. And then there were three other doctors and myself, all trying to work out what to do when the one thing that should be allowed to happen for the patient before us isn’t allowed to happen.

He was dying you see. That was the most obvious conclusion. As for how that would take place, that was far less clear.

The Day Reality Set In

The instinct to call a patient’s family to be close by when their loved one is near death’s door is very fundamental. It is certainly tragic when you are required to be the messenger of such a call, still worse for the person receiving the call. However, as a junior doctor, I have found that it feels like one of the most beautiful human things you get to do when working in a hospital. You are entrusted with being the bearer of bad news and helping shoulder the grievous burdens of those hearing it. It is a careful and precious moment to be dealt with sensitively and compassionately.

Yet, on this night I found myself at a loss when asked to pick up the phone to call the family of a rapidly deteriorating patient. He was an elderly gentleman with little to no English, and his breathing was becoming increasingly laboured. He had recently arrived home together with his wife from Hong Kong. Soon after his return, he had fallen ill with a respiratory illness. I was first introduced to him in a flurry at the start of another night shift. Everyone wondered if he might have COVID-19 (all signs pointed in that direction) and in his current state he probably wouldn’t last the night. 

“You are entrusted with being the bearer of bad news and helping shoulder the grievous burdens of those hearing it.”

As a matter of good public health policy, his wife was now isolated at home as a close contact of a suspected case. But right at this moment, at the time when her husband was close to death, good public health policy felt like awful patient care.

As a junior doctor, this was the first time I’d come face to face with the decisions that mark the dying process under the shroud of COVID-19. Like an invisible wet blanket, all of a sudden every good intention and desire was snuffed out by the need to weigh and re-weigh infection risk; to avoid potential spread of the virus to otherwise unknown people; and to find my (as yet undefined) role in simultaneously caring for individual patients and also the community at large. 

Competing Interests – The Individual vs The Community

By now, for most healthcare workers, I’m sure the competing responsibilities to individuals and communities in the midst of the COVID-19 pandemic have been brought to bear in some way, shape or form. 

There exists an often-times counterintuitive tension between acting in a way that most benefits the common good, whilst also doing no harm to the patient at the bedside. Although as a junior doctor I’m reluctant to make firm assertions on this, it seems that within the context of this pandemic, public health ethics have largely been aimed at reducing harms while maintaining proportionality – keeping in view a primarily consequentialist approach to decision-making. To do this we use our best estimates of the epidemiological risk within a community and work backwards from there. 

In this case, this man and his wife were at ‘high risk’ of having SARS-CoV-2, both because of their recent travel history and this man’s symptom profile. And so to allow this man’s wife to come to the hospital via the taxi she would inevitably need was tantamount to promoting the spread of the disease – both along the unassuming taxi-driver’s course that night, as well as putting the taxi driver himself at considerable risk. It was untenable and I was told that in no uncertain terms.

Photo Los Muertos Crew Pexels

Many of us healthcare workers, myself included, sit at least one or two steps away from where that decision-making occurs. We are merely conduits of received wisdom handed down from the powers that be. That was the case when we had to tell this man’s wife that she must not under any circumstances get in a taxi, or on a bus, to come to the hospital. Her family would have to weigh up the risks and take her if they were willing and then self-isolate for two weeks as yet another close contact. 

We operate under the assumption of trust in the moral integrity of otherwise-unknown decision-makers and stakeholders in our local health areas. Whilst not being privy to the motives behind policies for infection control or visitation may irk some of us, I myself am buoyed by the long heritage of Christ-inspired and Christian-influenced virtue upon which much of our Western healthcare system stands.1 

“Many of us healthcare workers, myself included, sit at least one or two steps away from where that decision-making occurs.”

Thankfully, here and in most healthcare settings, public health decisions are typically made with a view to providing exceptions in order to preserve virtue ethics such as beneficence, justice and respect for autonomy. At no point was the desire for her to see her husband ever called into question. The logistics of fulfilling that desire were the impossible hurdle to get over.

However, here in this season, I am reminded that in the Scriptures we are nowhere absolved of our civic duty to our broader communities (1 Thessalonians 4:10-12; Jeremiah 29:7). Nor do we have the liberty to ignore the suffering of the individuals whom we meet on our way (Luke 10:25-37). To hold these together
is the present difficulty.

So what of people who are dying? 

I have seen this year an unspoken but implicit understanding that the last moments of life carry profound significance. As a Christian this is readily understandable as a common reckoning that eternity is written on the hearts of all.

“He has also set eternity in the human heart”
Ecclesiastes 3:11

It is not surprising then, that each and every person we encounter wishes to be known and loved, and have their dignity preserved, even up to (and perhaps especially at) the point of death. They understand the value of life and the common grace of God that persists to the very last moment.

So, for the individual, as well as doing no harm and seeking their good, there is also a righteous requirement to preserve the dignity of those who are in their last hours or days, and to provide connection with their nearest and dearest. 

The Labour to Preserve Value 

As an intern, this year I spent more time than I anticipated on the phone. Calls were made to state public health units, embassies of various nations and to family members stuck in quarantine trying to arrange for family to be close to dying relatives. Alongside some phenomenal social workers and other health staff, letters of support for travel exemptions, emails to administrative and executive hospital staff, and other seemingly mundane tasks all served to promote the wishes and values of our individual patients.

One encounter with the wife and son of another patient was particularly illuminating. During a long illness course, I looked after an elderly gentleman for the better part of six weeks. Over the course of his stay it became clearer and clearer to us and to him that he would slowly decline due to very severe emphysematous disease. He wished to see his son, who at the time was under lockdown in Melbourne. So I wrote a letter of support for his son, gave it to the family to go through the appropriate channels and went on my way. At the time, it did not seem like a big thing at all.

“…it is the image of God in man – that intrinsic, unquantifiable value gifted to us in creation – that ought to be loved and cherished.

The son’s request to travel was rejected, and his father eventually passed away – a grief many have sadly had to face this year. In the final days of caring for him, his other son (who was able to be present), a lovely Christian man, thanked each person involved in his father’s care. I was surprised when he thanked me specifically for trying to help his brother to come to see him. He was not angry at the request being denied or my unsuccessful attempt to help. Rather, it seemed he was moved by the labour to give value to the things most important to his father and his family.

It seems, therefore, that whether it be making provision for family members to visit, providing for spiritual needs, preventing unnecessary physical suffering, or the myriad other components of good quality end-of-life care, it is the image of God in man – that intrinsic, unquantifiable value gifted to us in creation – that ought to be loved and cherished. And it is our high and holy privilege as health workers to do so, even at the same time as we contend with the pandemic before us.

The Hidden Toll of Our Decisions Around Dying

These decision-making processes are rarely as simple as we wish them to be. It would be remiss not to mention that there are untold costs and harms to our decisions that are almost impossible to hold together at the same time, and of which we may not readily see the effects. I have been mindful of the delayed consequences after the 2011 earthquake and tsunami that affected the east coast of Japan. Whilst the immediate damage and death toll was profoundly felt, it wasn’t until two, three and even five years years later, that related rises in the rate of cardiovascular disease and suicide deaths in those evacuated from the area were seen.2,3

In regard to this pandemic, it still saddens me that the first-mentioned man’s wife, rather than being able to focus purely on comforting her husband, had to contend with a force of doctors, nurses and administrators who (it must have appeared) were trying to prevent her from doing that very thing. It still saddens me that the later-mentioned son never got to say goodbye to his father in person. For these and many other events of this pandemic, it has been a point of seeking God’s grace and comfort for harms outside my control, and forgiveness for those sins of which I am as yet unaware (Psalm 19:12). I pray for His mercy in the years to come as we deal with the aftermath of deferred grief and undignified deaths.

It strikes me as instructive that Jesus was at one and the same time the feeder of thousands (Matthew 14:13-21) and healer of individuals (Mark 5:25-34). He was the teacher of many (Matthew 5-7), and the justifier of one (John 7:53-8:11). In the face of death he spoke for the crowd’s benefit (John 11:42) and wept with the sister of the deceased (John 11:33, 35). So I think it appropriate that we are to aim to do the same. Learning to hold these competing values in tension this last year has been both a challenge and a joy of profound significance.

Reflecting On This Holy Privilege

We never did find out if that first gentleman had COVID-19 or not. But I still remember his face. Behind the mask and oxygen supply, he had the weary and well-told eyes of an elderly gentleman whose body had suffered all but its final onslaught. Although it was complicated, messy and unsatisfying in its brevity, a way was found for his wife to see him. There was no question in our minds that, although it looked different to how we might envision it with time limits and personal protective equipment and the rigmarole of it all, his dignity would be best protected in death by his being near the wife he had loved for so many years. Stories of family members talking over a video call or singing to their loved ones over the phone have a similar weight.

And so I am reminded that despite the volume and complexity of decision making that must occur in this season, particularly around the dying process, there exists a dignity in each patient that must be preserved, must be upheld. It is a dignity that is intrinsic to each person, made in the image of God, and therefore worthy of our advocacy and labour for their benefit. 

But I do not decry that this peculiar and precious labour of caring for the individual feels at times in tension with the curtailments of broader-based policies and generalised ethical frameworks that don’t meet every individual requirement. So long as these big-picture frameworks are just and compassionate, and we are free and willing to advocate for our patients, this seems to me for the most part like a dance where the push and pull of the desire to protect and care for one and
for many must find its rhythm. 

The prophet Micah’s summary of the law captures it well:

“He has shown you, O man, what is good;
And what does the Lord require of you
But to do justly,
To love mercy,
And to walk humbly with your God?”
Micah 6:8

We are called to love mercy, and so desire the good of the individual before us. We are to do justly, and so perform our civic duty with more than merely the individual in mind. And we are to walk humbly before our God, trusting His providence and seeking out wisdom for each and every one of these difficult circumstances. This we are called to do with patience and integrity throughout our whole life. And in death, it seems that this makes all the difference. 


Dr Joel Winney
Dr Joel Winney is a junior doctor based in Sydney at Concord Hospital. He graduated in 2019 from the University of New South Wales and has completed his recent intern year almost entirely during the current COVID-19 pandemic.



References

  1. The origins of Western healthcare – Centre for Public Christianity. Centre for Public Christianity. (2021). Retrieved 13 January 2021, from https://www.publicchristianity.org/the-origins-of-western-healthcare/. 
  2. Orui, M., Suzuki, Y., Maeda, M., & Yasumura, S. (2018). Suicide Rates in Evacuation Areas After the Fukushima Daiichi Nuclear Disaster. Crisis, 39(5), 353–363. https://doi.org/10.1027/0227-5910/a000509
  3. Ohira, T., Nakano, H., Nagai, M., Yumiya, Y., Zhang, W., & Uemura, M. et al. (2017). Changes in Cardiovascular Risk Factors After the Great East Japan Earthquake. Asia Pacific Journal Of Public Health, 29(2_suppl), 47S-55S. https://doi.org/10.1177/1010539517695436 

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