I chose two weeks in quarantine to see my aunt in palliative care

Daniel Byrne

5/05/2020 2:29:20 PM

Doctors often learn more as a patient or carer within the medical system. Dr Danny Byrne reflects on one such example.

Palliative care patient looking out the window.
Doctors can often learn more as a patient or carer on the receiving end of the medical system.

I have recently been working full time in the COVID-19 GP Liaison Team in SA Health.
One of the benefits of working in the nerve centre is that I was fully aware of the South Australian border restrictions, which are equal to the strictest rules in Australia. Anyone entering from interstate has to undergo two weeks’ quarantine.
Exemptions are few and far between.
For example, there is no exemption for an interstate doctor to come and do rural locum work in SA – they must also do two weeks’ quarantine before starting a placement.
This meant that overnight SA lost almost 100% of its rural locum workers who had gone home to NSW or Victoria for the weekend and were caught up when they tried to return for their Monday shifts – no exemptions were granted. None at all.
Last week I was informed that my aunt in Melbourne had been admitted to a hospice. She has a lymphoma that has become treatment-resistant.
The lymphoma had grown in her neck and caused a laryngeal nerve palsy, affecting her voice. On top of that, she has severe heart failure – exacerbated by the past few years of chemotherapy. She is short of breath and her voice is terribly hoarse. Speaking via FaceTime was not feasible for anything more than a minute or two.
I knew that I should go and see her but, if I did, I would have to enter two weeks’ quarantine on return to Adelaide. Those two weeks, plus the two weeks of leave I already had scheduled (for a trip to Japan) meant the next month was wiped out as far as work was concerned.
On one level it was a dilemma, and on another it was not. I was only on a short-term contract for the COVID-19 liaison job and SA was doing unexpectedly well in terms of fighting the virus.
My aunt is special to me because my parents and grandparents all died in the 1990s. She was my ‘special’ elder and she was dying. She was keen for me to come and wanted to tell me something in person.
Once I made the decision to go everything fell into place quickly.
I had to resign from the COVID-19 liaison job; that was hard, but everyone was supportive. ‘Family first’ became a recurrent mantra. Such clichés are thrown around, but we have them for a reason – because they are true and help us to make sense of the decisions we make in the moment.
Next was the permission to visit the hospice. My aunt is allowed one visitor per day for a maximum of two hours. I was given a slot for two days’ time for a maximum two-hour visit. This meant her three sons in Melbourne had to give up a day of visiting for me to come. I felt bad then, but they were all in agreement that I should come.
Flights to Melbourne and back were only operating once a day. The schedule meant I had to fly over late on a Wednesday, have my visit on the Thursday and fly home on the Friday morning to begin my quarantine. Two nights in Melbourne, in isolation in a hotel, for my two-hour visit. It was worth it, and I could afford it – but for how many other families in Australia could this have been a deal breaker?
My appointed time slot arrived. I was greeted at the hospice by a bank of staff members checking temperatures, plying me with hand sanitiser, asking me the same set of questions we have been asking our patients for weeks now (all answered ‘no’) and plonking a nice green ‘visitor’ sticker on my jacket.
The hospice was very quiet. Three quarters of the beds were empty – cleared out in advance of the COVID-19 tsunami. My aunt had a room designed for four patients all to herself (note to palliative care, can we try to have single rooms for all patients as a goal?).
In an instant, the COVID-19 restrictions became real. I had to keep 1.5m away and no hug was allowed. I desperately wanted to give my aunt a hug, even a squeeze of the hand, but nothing was allowed. This was probably the hardest part of the whole visit. At least they did not make me wear a mask.
I had asked my wife, Linda, who is a palliative care specialist in Adelaide, what the best gift for the nurses would be – surely they have had enough chocolates to last a lifetime. ‘Hand cream’ was the answer. The good stuff. I bought a small fortune, some for my aunt and some for the nurses. That went down very well.
I have heard it said that funerals are for the living. This visit to my aunt may have meant more for me than for her. During the visit I heard stories of my childhood that I had never heard before. I did not get on with my father that well after my teenage years. My aunt told me about how much he loved me as a baby, my unofficial baptism by him in the Murray River, how hard boarding school had been for him, how they had to cope with the death of their father (my grandfather) from bowel cancer at age 50 when no one would tell the children the truth.
My aunt let me record all of this on my iPhone, as her son was after as much oral history as possible. She was top of her class at school, but the boys went to uni and she didn’t. She talked of the feminism battles and stories of the 1970s. So many stories came out. I listened, and she talked, still breathless and hoarse, but so keen to tell me these stories.
Time flew and I had been there for two and a half hours. We both knew our time was up. She had hit the wall.
Almost at the same time we both said, ‘I think that’s enough’.
I have had to walk away from a hundred patients’ homes knowing I won’t see them again. It’s something you get used to – some are sadder than others, but by the time you get home you are wondering what’s for dinner. Walking away from a loved one is impossible – but you do it. And you don’t forget.
In the time of COVID-19, restrictions are in place that make an important rite of passage difficult, and in some cases impossible. I won’t see my aunt again.
She is too weak now for even a text message. Her sons will let me know when she dies. I won’t be able to attend her funeral with the limit of 10 people in place.
More than most, we understand the greater good of these public health restrictions, but please do not underestimate the pain and hurt that go along with them.
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Dr Trinh Tran   6/05/2020 7:15:05 AM

Thank you for sharing your personal experience Dr Danny Byrne. It is so true that the best understanding results from walking the journey yourself.
‘Family first’ - thanks also for not only ‘talking the talk, but also walking the walk’ and providing insight into how that itself does not come without sacrifices.

Dr Jessica Suk Yin Ho   6/05/2020 7:36:08 AM

I was very touched by your article . It reminded me of the sufferings people have to go thru during this exceptional times. How lucky both of you had this precious time together which some of us were deprived of.

Dr Meredith Irene Frearson   6/05/2020 8:30:56 AM

Danny thank you for sharing, the dilemmas we face as doctors are real. Family first always. Thank you for all the hard work you undertook on the covid task force. I hope you can enjoy some peaceful time during your quarantine.

Dr Richard William Try   6/05/2020 8:54:08 AM

Thank you for sharing, Danny. Beautifully told. Best wishes to you and your family

Dr Kerry Hancock   6/05/2020 10:05:50 AM

Beautifully written Danny and from deep in your heart, as always. Thank you for sharing.

Dr Ira Pant   6/05/2020 9:01:51 PM

Just reading this Danny Byrne and it was very very moving. Such difficult and unusual times . Thanks for sharing the perspective from the other side.

Dr Seshu Krishna Boda   7/05/2020 6:46:33 AM

Thanks for sharing Danny. We miss you here in SA. Yes, Family comes first. best wishes to all of you.

Dr Gillian Anne Riley   8/05/2020 2:20:19 PM

Miss seeing you round, Danny. Lovely to hear your voice. Love to you and the fam bam.