The story of a teacher who fought against the odds of his terminal diagnosis, and now faces the complex decision of how (and when) to return to work.
Brett was climbing up some stairs at the school where he works as a teacher and found he wasn’t able to reach the top without becoming short of breath. As a fit and healthy man in his 40s, this was unusual.
After visiting his GP, he was told he had a lung infection. Antibiotics would clear that up. But after a few more days, he wasn’t noticing any improvements. The next day he drove himself to the local hospital to get a second opinion, just to be safe.
“I just thought I was a bit crook. I didn’t think it was anything bad,” says Brett. But his examination showed that things were in fact very, very bad.
“I had to go to a different hospital by ambulance. If you avoid peak hour traffic, it would have been a two hour journey. We made the trip in 40 minutes. At one point I think we were travelling at about 160km/ph.
“I basically just made it to the hospital in time. I wouldn’t have survived had I gone to a different hospital or if we didn’t get there when we did.”
Fifteen minutes after arriving at the Prince Charles Hospital in Queensland he had passed out. He would be in a coma for four weeks. He had terminal heart failure.
“I was the sickest person in the ICU. I entered the hospital on the 4th of February this year and on the 19th of February I started dying; I was given hours to live.”
While it has been by no means an easy road, Brett fought against the odds and has started making a wonderful recovery.
“I was implanted with a left ventricular assist device, an LVAD, which I still have now. It’s a pump that bypasses my left ventricle and sends blood around my body.
“I was the sickest person in the ICU. I entered the hospital on the 12th of February this year and on the 19th of February I started dying; I was given hours to live.” – Brett
“If they disconnected the LVAD now, I would probably live. But I’d experience a sudden drop in blood pressure and there could be blood clots in the pump. My heart is working really well at the moment, but there’s a catch. After some testing, it turns out I have a first generation genetic mutation which means my surgeon is too uncomfortable to take me off the LVAD. Now I have to go on the heart transplant list.
“So now my life is a little bit like, how long is a piece of string?”
Returning to work
“We need our work. It’s such a big part of our identity,” says Jessie Williams, CEO of the GroundSwell Project, an organisation that helps workplaces to create compassionate environments around death and grief in all its forms.
“Our work lives are our lives. For many people, work is a lifeline. What we need is a compassionate workplace. We need the community that we call ourselves part of to respond to our needs.”
The median wait time for a new heart in Australia is 220 days, says Brett. Once he’s on the list, he needs to be ready to go into surgery at any point in time. After his recovery, he’ll want to go back to work. It’s incredibly important to him.
“I’m getting really bored at home. I’m really motivated to work again.”
But there’s another catch. After a heart transplant he would have to go on immunosuppressants. These are designed to prevent the body from rejecting a new organ but also lower an individual’s general immune system. So an environment like a school, where kids often get sick and diseases are easily spread, is not ideal.
“I think the department is just going to have to find me something that’s not school-based. I will need reasonable accommodations made. Take the flu for example. You don’t know you’re contagious until after you’ve started having fluey symptoms. If I’m on immunosuppressants and I get the flu, that could be the end.
“We previously had a teacher who was medically retired because he had cancer and he was terrified of coming back to work and getting sick.”
Life after a terminal diagnosis can also mean a change to your skillset. Brett is a highly-educated teacher, with expertise in supporting students with disabilities and learning difficulties, but his condition means that his brain doesn’t work in the exact same way that it used to.
“We need our work. It’s such a big part of our identity.” – Jessie Williams
“In the afternoon, my memory and executive functioning isn’t as good as it is in the morning. Initially, I thought I might return to one day per week, but now I’m thinking it might have to be one morning per week. After testing that out, maybe I could try and extend it to a full day. It’s going to take a long time.”
During his recovery, Brett says his colleagues and students at the school have been “extremely supportive”.
“HR have been great in processing all my leave while I was in a coma for four weeks and while serving out my waiting period for Income Protection Insurance,” he adds.
A new age
Williams says there are many people who are working with a life-limiting disease, especially now that medical advancements have meant that we’re physically able to survive longer following a diagnosis.
“The way we die is very different in today’s age. We generally live with our disease for much longer than we used to. We decline and die. Our working lives will span that length of time,” she says.
Employers should also be conscious of those who are working while caring for a loved one, or those who are working through a grieving period.
During her own loss (which you can read more in this previous HRM article) Williams said her team came together when she was off work to discuss what had happened to her.
“It really set a new standard for the culture of that team. It creates that invisible compassion that you feel as a grieving person. That’s an extraordinary safety net.”
Williams says another important thing to keep in mind when terminally ill staff return to work is compassion fatigue.
“People aren’t too bad at responding to grief within the first few weeks, but after a few months they don’t ask you how you’re feeling anymore. The way we combat that is by having a resilient workplace made up of open, candid conversations that involve everyone who is willing to be part of that conversation.”
Where possible, compassion levels need to match individuals’ grief levels, which go up and down and can be more intense down the track. HR should encourage and help managers and trusted colleague to schedule time with the affected person, even a long time after they’ve returned to work.
What else does HR need to know?
Brett is very keen to let everyone know that, even if you’re not sick, you need to have a will and an enduring power of attorney in place.
“My insurance company hung up the phone on the hospital social worker, who was with my wife who was too upset to speak at the time. The social worker was just asking very general questions but she was stonewalled. They refused to answer any questions because I didn’t have an enduring power of attorney or a will.
“When I purchased insurance and signed up to a superannuation fund, no one disclosed that if you’re ever unable to communicate and you have a terminal illness – or will be sick for long enough to claim – that I’d need these things in place. It might have been somewhere in the very fine print, but it needs to be more obvious.
“I think that’s deceptive conduct by omitting essential information.”
He says that HR professionals should consider including this information in the employee onboarding process.
“They should be saying, ‘here’s your payroll and superannuation information’ and then ask staff, ‘Do you know there’s a death and terminal illness benefit associated with your super account? Have you got a will and enduring power of attorney in place? Because that way your family will be looked after.’ It’s the kind of stuff HR can be advising on before someone even gets a terminal illness.”
“So now my life is a little bit like, how long is a piece of string?” – Brett
This importance of workplaces having a strong death literacy is one that Williams also stresses. (You can find out more about how to do this at the GroundSwell website.)
Nikki Shah, the founding director of MyMuse, an organisation that helps cancer patients and survivors return to work, says that employers need to dismiss the assumption that terminally ill employees will “look sick” and “make other staff uncomfortable” as a result of this.
“I always mention to clients that they could have walked past three or four people from the train station to their office who have cancer and are having ongoing treatment, and have no idea.
Shah adds, “depending on an organisation’s size, it may have to engage external organisations to help make this employee’s transition back into, or out of, the workplace as smooth as possible.
“It is also vital that the employer looks at the support of the team, managers and leadership team close to the individual. Having a staff member who is terminally ill can bring up emotions for people and also they may not know how to deal with the situation. Looking at the wider circle of people who are affected is crucial,” says Shah.
Transitioning out of the workforce
In one way, Brett is lucky. Recovery and a long and healthy life is on the cards for him. Because for most people who receive a terminal diagnosis, there will come a time where they need to medically retire from the workforce. This can be an extremely emotionally charged time for the individual, their supervisor and colleagues.
If you’re a manager and a staff member discloses that they have a terminal illness to you, Williams offers this advice.
“Pause, listen and lean in. Notice what comes up for you as a listener. For a moment, take off your boss hat, put on your human hat and be in the moment with this person. Your job is to read what they say, and also what they don’t say, so you can come up with a question that’s open, curious and will get the best response you can hope for in that moment.”
Often that question is something like: “How can I best support you today?”
“They might not know what they need in a week’s time, they may not know what they need tomorrow, but they’ll probably know what they need right here and now. We need to attend to that person, in that moment. That’s a really useful starting point.”
It’s a good idea to treat the departure of someone with a terminal illness as you would anyone else who was retiring from the workforce. With the person’s permission, throw them a farewell to honour their contribution and the value they’ve added to the workplace over their tenure.
“The power of ritual can remediate our relationship with each other through loss. Having a ritual which is natural and organic, and matches the values of the person who is leaving, is really important,” says Williams.
Since the news that he’ll need to get a heart transplant, Brett has been working hard to get himself as fit and strong as possible. The precious gift of an organ is one that he most definitely won’t take for granted.
“The donor’s family and the hospital want to know that the recipient will have a long and healthy life, and that’s what I’ll work towards doing.”