Breaking bad news is never easy. A patient and oncologist share their thoughts on helpful approaches to life limiting diagnoses and care.

“When I first heard the news it was shock more than anything… and then disappointment... But I guess I'm a little bit odd in a way because after the initial shock and disappointment… I guess I realised that… it's not a shock really at all. Most people in our culture don’t want to talk about death, but it's one of those things that happens to people and why wouldn't it happen to me?”

Les Forester was diagnosed with stage four oesophageal cancer in March of this year just three months after experiencing symptoms. His diagnosis coincided with the beginning of lockdowns all around the world due to Covid-19, which added more uncertainty to the experience. In the space of a few short weeks, Les went from being a prominent semi-retired Anglican Minister to a patient grappling with a life-limiting cancer diagnosis. Les is also my father-in-law and a much loved dad to my husband and grandfather to my two small children. He agreed to chat to me about the journey he’s been on with his illness as an opportunity to share his experience and hopefully have a positive impact on the type of doctor I and my peers become.

For all who enter medical school and embark on a journey into healthcare there is a desire to help, to heal, to problem solve and understand how a body works so that patients in our care can recover from their illnesses and thrive. The natural antithesis to this is that death is the hidden figure with whom our curative dance circles. While our efforts are often focussed on wellness and prevention, there is an inevitability that, as practitioners, our patients will sometimes die. Some doctors encounter this behind surgical drapes, others may care for elderly patients through a general practice, but some specialists must look a patient in the eye and deliver that shocking news that their newly discovered illness is, in fact, ‘life limiting’. For those still studying or in the early phases of their career, how do we learn how to break such devastating news to our patients and care for them on that journey? 

Dr James Lynam, who has been a medical oncologist at the Calvary Mater Hospital in Newcastle, for the past six years, and also Les’ physician, says it doesn’t get any easier. “It feels horrible... It’s emotionally draining doing it.” 

“My shortest new patient appointment was five minutes, where I saw a young couple with a woman who had been diagnosed with a very advanced cancer... She came in expecting to talk about ovarian preservation prior to her curative chemotherapy... The first thing I said was ‘this is not curable’.” 

The Medical Journal of Australia published an article in 2007 acknowledging that expert opinion varies, and high-quality evidence on how best to discuss prognosis and end of life issues with patients and their caregivers was limited. This investigation produced a set of clinical guidelines to assist health care professionals caring for patients with progressive life limiting illnesses. The acronym PREPARED was developed and suggests the following be adopted as an approach:

• Prepare for the discussion;
• Relate to the person;
• Elicit patient and caregiver preferences;
• Provide information tailored to the individual needs of the patient;
• Acknowledge emotions and concerns;
• Realistic hope should be fostered;
• Encourage questions;
• Document the discussion.

Others still may be familiar with the SPIKES protocol for breaking bad news:

• Get the SETTING right;
• Find out what the patient knows of PERCEIVES;
• Get an INVITATION from the patient to share the information;
• Give the KNOWLEDGE and medical facts;
• Address the patient’s EMOTIONS and empathic responses;
• STRATEGY and SUMMARY.

While these clinical recommendations are useful, Dr Lynam suggests that a practitioner needs to develop their own authenticity when it comes to relating to and communicating with patients. For some practitioners this may involve a more distanced and traditional ‘patient’ and ‘doctor’ relationship, but for Dr Lynam it involves really trying to connect with a patient in a personable and equal way.

“When first meeting people...reiterate that this is incurable but that doesn’t mean untreatable.”  - Dr James Lynam,  oncologist, Calvary Mater Hospital, Newcastle.

Having key phrases that can be used at certain stages along the journey can be beneficial in honing your communication skills and boosting a patient's understanding of their experience, he says.

“When first meeting people...reiterate that this is incurable but that doesn’t mean untreatable.”  

Dr Lynam also highlights that a key turning point for a patient is when they need to move from active cancer treatment to supportive (palliative) care. He says that at this time, choice of words is very important, not only to ensure that patients understand that their treatment is changing but also to imbed some optimism into this very difficult moment. 

“As opposed to trying to make you live long, I’m now wanting to make you live well. We want to concentrate on that quality.”

Perhaps one of the most challenging aspects of caring for patients with a life limiting illness is the balance between hope and reality. Dr Lynam sites that nearly every patient asks him the same first question:  How long am I going to live? 

“My answer is, I’m not going to answer that question. I could give you an average based on clinical trials [but] you're not an average person, everyone's unique.”

So what does this feel like from the patient’s side? I asked Les what aspects of these types of conversations he has found beneficial and he immediately said that frankness and openness from the medical practitioners that he has encountered helps. Les has been in and out of hospital several times since March with a variety of serious complications including a bowel obstruction and a gangrenous gallbladder which had to be removed. He told me that the difficulty that he has encountered with medical personnel has been during these times, when he has been at his most unwell and most vulnerable. 

While this sits outside of the ‘breaking bad news’ scenario, it’s important to consider that for a patient with a life limiting illness, various ‘close calls’ and emergency procedures may be par for the course and that their overall experience of this journey plays out across a variety of settings, and, most likely means, encountering many individuals working in the medical field. Les mentioned that even small things can go a long way in helping a patient to feel more comfortable, for example, taking a step or two back from a bedside when a patient is prone allows for more equal eye contact and always asking permission rather than directing a patient to allow you to examine them provides a sense of personal control for a patient that can so easily be lost. 

I asked Les what advice he would give to medical students and his answer, I believe, speaks to the heart of the dilemma.

“This is a human being, not a task. This human being has fears. This human being is in a powerful, overwhelming and at times intimidating system.”

During our training we are taught an innumerable amount of tasks that can be performed on a body. This is, of course, as it must be. There is a practical necessity for this knowledge to be gained by students before they embark on their careers and an assumption that, when in the field, our innate ability to relate to our patients will present itself. Les wanted me to understand that too much of his experience through the medical system to date has seen him approached as a task first and a person second, most noticeably when he was critically ill and at his most vulnerable. 

He told me that it was easy to spot the medical personnel who were ‘compassion fatigued’ and that genuine care and empathy was also obvious within the staff he encountered. So how do we prepare ourselves to be able to provide genuine compassion to our patients over years of service? How do we get trained sufficiently to prevent burnout and ensure that we are not only highly informed with medical knowledge to assist our patients but also that we have reserves of compassion and empathy for each and every patient we encounter?

“Finding your own ways of coping with that and dealing with that is very important because one of the key things in being an oncologist is that you have to remain compassionate and empathic. No one wants to see their cancer doctor who is… not getting engaged in their care and is dispassionate,” Dr Lynam says. “Very few oncologists are dispassionate and if they are, they shouldn't be oncologists.”

Dr Lynam says that during his training this need was only specifically addressed quite late in his advanced qualification but that he is aware that today’s doctors are being trained in this type of compassionate communication much earlier on. He also feels that simulations of practicing medical tasks can not really be reproduced adequately when it comes to honing a practitioner's approach to breaking bad news. 

“Doing things in a simulation lab like resuscitation or cannulas that’s pretty… good… but simulating these sorts of conversations is a lot more challenging. So no matter how much training you're doing it's always different to when you do it yourself the first time.”

When I asked Dr Lynam what the most positive thing about his chosen speciality was he immediately answered that it was the unexpected surprises that were the most rewarding.

“I always feel I make a difference… every patient appreciates what you do for them... And the other thing about being an oncologist is that you still get to see the miracles... Those people who shouldn’t be alive that are... That's extremely rewarding... The aberration, the outliers...”   

Just this week Les heard that his cancer markers are down following his most recent bout of chemotherapy and he’s been granted a month break from treatment. Everyone in our family is overjoyed and we’re making plans for lots of quality time. Despite what we all know about the stats and the likely time frames, the news this week feels like a weight lifted for now.