Living and working with chronic illness

Grief in the ED – personal lessons from loss

By Dr Caroline Macari

Caroline Macari headshot
Dr Caroline Macari – Emergency Physician

 

Fore and After word by Una Harrington

 In early 2019, I travelled to Sydney to take part in the NSW ED Wellbeing day. While I was there, I heard this honest and poignant story from Dr. Caroline Macari. The effect this story had on those in the room was palpable.

 There was such power in her message that I asked if she would publish her story. She kindly agreed and has written her story down here for WRaP EM.

 Over to you Caroline…….

Two years ago something happened that, not to be overly dramatic, changed my life, including my everyday experience of my job as an emergency specialist.

My older brother, Martin died of a rare and aggressive form of Non-Hodgkin’s Lymphoma that spread despite every treatment that was thrown at it.

When he was dying I managed to unleash in myself a raging anxiety, which caught me by surprise. In the year after his death I was forced to look at everything about my life – my work, my loves, my practices – to figure out how I could not only cope, but thrive.

I know many of you have been through the same thing. I would notice your names crossed off the roster. And then there you would appear, back on shift a couple of days later. Not a word would be said. When it was my turn, I wondered how everyone else had done so well, whilst there I was crying all the way to work every day in my car. But I guess the reality is: you probably weren’t doing okay; we just didn’t ever talk about it.

I want to share just a few of the lessons I learnt about my experience of doing our job while living through personal grief. There is no shame in struggling to do our job when we are raw and in pain. I would love to start a conversation where we are allowed to admit this.

Have compassion for yourself so you can have compassion for others.

It is very hard to care with grief in your heart. As a doctor it is our job to care. We need to show compassion to those we treat, even though we may think their complaint is ridiculous. To them this is their worst day and they have come to us to seek reassurance.

One evening shift I received a phone call from my mother, distraught that my brother was on three infusions of drugs that were ‘ keeping him comfortable’ and she was begging for them to treat him, not just drug him. We felt his death was imminent, and yet still seemed premature. After this extremely upsetting phone call I sat alone and cried. I then walked downstairs to immediately be reemerged into a world where my juniors were lining up to ask for advice about their patients with sore throats, a stubbed toe, or a rash they’d had for a week.

It is extremely hard to care, to show compassion, when your heart is at full-to-bursting point with fear and sorrow. However, as a doctor, especially one in charge of a department, we just get through it. We lock off the pain and keep going. But this is not fair to our patients. You must look after yourself. Take time off if you need it.  Your department will survive without you, no matter what you think.

You cannot work our job when you can’t care at all.

Don’t be afraid to talk about grief.

I would love to talk about my brother more than I do.  There is nothing like ending a story with ‘but he’s dead now’ to bring an abrupt and overwhelmingly awkward end to a conversation. The pity face comes and then the ‘I’m sorry’ will follow. And then that is the end of that. No more questions. My brother may be dead but I still have a relationship with him. He is still my brother. He is still part of my life. More and more it feels like this part of my life never gets spoken of.  More and more it feels as if he is truly gone.

It is a common feeling in those grieving that they can’t find anyone that will listen. No one will bring up their loved one’s name for fear of upsetting them. Don’t feel like you have to say anything useful – just listen. A simple ‘tell me about your grief’ or asking them to tell you something about their loved one is all that is needed. It helps to bring their loss into the open and make a seemingly impossible event feel real.

If the grief or loss is carried by a patient, taking this approach helps our patients to feel like we care about them as a human, and helps to keep their loved one alive.

It’s okay to cry.

I don’t know at which point in our career we become completely hardened to what we see. It’s not like we get taught to be emotionless – it is just a learned survival skill. We simply don’t think about the vicarious trauma we see every day and tend to have a ‘Next!’ policy. But when you stop to think about this, isn’t it unbelievable that we can do this?

Shortly after my brother died I experienced the humiliation of publically crying after my second resus of the day ended in an unavoidable patient death. I was treated like I was broken and escorted by worried staff off the floor. I was mortified. I saw myself as weak and an embarrassment.

I told this story to someone external to medicine. Their response inspired me:

‘I am so glad you cried, it makes you a human being. If you could see what you see everyday and not be affected then I would worry you are a psychopath.’

Palliative does not mean do nothing.

As soon as we see the word ‘palliative’ in a patient triage, we immediately downgrade our concerns and go into ‘comfort mode’. Palliative to me now means I know their destination, but they still have a journey before they get there. They still have life and they still have hope.

My brother was palliative and living in a hospice for five months. In fact, it got a bit awkward. We used to joke he would have to start paying rent soon.

But in these five months he got to see the new Star Wars film with his son. He got to have one more Christmas with his children. He even managed to sell the rights of a book he had written to a television production company. He may have been labeled ‘palliative’ but he continued to live a fulfilling life. Multiple times he was almost sedated to death and ‘kept comfortable’ for completely reversible causes.

We watched in horror, for example, as he was increasingly sedated and given analgesia for constipation without bothering to treat the cause. I’m not suggesting heroics in our management, but perhaps pause to ask what the patient and family want in this moment. For many, pain relief is what they want; for others it’s just a reversible bump in their path and today is not their time.

Eventually my brother was ready. He told everyone he was done. In the end he was hoping for death and faced it with the grace and bravery he did his entire illness.

Afterword:

 This is what this story says to me………..

 We are humans first. We are sisters or brothers, mums or dads, daughters or sons. Only then, somewhere thereafter, we are medics.

 Our role as Emergency Doctors and Nurses does not ‘protect us’ from heartbreak and grief, no matter how much we wish it could. It also does not limit our joy or love, or our hope.

 Our own experience of illness, and that of our family, can change and help us hone our compassion and clinical acumen with our patients.

 Sometimes, just like we would say to our patients, it’s okay to cry and ask for help.

About Caroline Macari

 

2 thoughts on “Grief in the ED – personal lessons from loss”

  1. Having nearly gone into Pall care, rather than Emergency Medicine your story really touches my heart. I Ve spent countless hrs with people in the last few months, weeks, days and hrs of their lives with and without their families. …. sometimes people are alone by the time they reach the end. While having had more sudden loss and grief experiences in ED, it can be heard to do both – be the hard core ED doc and cry when we need to. – as we all need to cry at some stage in our lives. Thank you for sharing your story, I hope it helps give many people the acceptance to acknowledge that we as ED docs are all humans with things happening around us too.

    Like

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