Denial.

There’s a silly saying used by GenZ’s a lot: “Denial is a river in Egypt.” I think it’s funny because they are perhaps denying the concept of denial… either way, we can’t get around the fact that denial is very real. We see it frequently in our line of work.

Diagnoses often come with terrible news that people don’t want to or cannot really take in. Sometimes it’s not the sick person themselves who can’t come to terms with their prognosis or treatment plan, but the loved ones that live in denial and in so doing, often cause the patient further anxiety.

In the vast tapestry of human experiences, few events are as universally unsettling as the contemplation of one’s mortality. Not everyone gets the opportunity to reflect on their death when it is imminent, but for those who do, the mere suggestion that our time on this earth is finite can trigger a complex and often overwhelming emotional response. Denial is often one of the first responses, which is understandable considering that it is a mental and emotional defence mechanism that aims to protect us from the harsh truth that we too, are susceptible to the inexorable march of time and that bad things actually do happen to good people.

Kubler-Ross put forward her five stages of grief decades ago, and while we know that grief is often not as linear as she theorises, and that the stages don’t always follow neatly in order, denial is usually a first response to unwelcome news. The hopeful part of us hopes that it simply isn’t true.

When June came to us after repeated hospital stays and unsuccessfully fighting cancer that had spread like wildfire, she was still gung-ho on going for chemo. Doctors repeatedly told her that her cancer was not curable, but every Monday she would have blood tests to see if she could have more chemo. From the beginning, June was told that she could only qualify for “palliative chemo”. Palliative chemo is not curative, so it’s only purpose, as I understand it, is to make your life more bearable. According to Lifeline, the pros of palliative chemo can be:

• improved quality of life
• reduced symptoms
• reduced pain
• possible prolonged life expectancy

The cons are that there might be minimal benefits from the treatment and of course, that the chemo can have awful side effects.

June did not experience a single benefit and had awful side effects, and the cancer was not shrinking, but she simply carried on going for treatment. Her husband was encouraging and would arrive early in the mornings to take her to the oncology centre. Her children desperately wanted her to stop the treatment. There were arguments and crying all the time. Only once the amazing social worker we often use got involved, and we all sat and talked about their fears and realities, did matters improve. But sadly, some of the extended family refused to believe that June would die in her 40’s and that they would not have a happy ending, a miracle or a last-minute new diagnosis. Other siblings were pushing for her to stop all treatments and just have faith… they had no doubt that there was a prophecy that she would be healed.

June eventually stopped going for chemo and sadly, just as she started recovering from her side effects, she passed away.

People are fundamentally programmed to hold onto life, so a terminal diagnosis is almost impossible for many people to accept and is extremely complex to navigate when you consider all the physical, emotional, financial and practical factors.

What makes matters worse is that there is a strong tendency for specialist services to offer medically inappropriate “curative” treatments to dying patients.

There is a terrible joke that goes: “Why are there nails in coffins?

To keep the oncologists out.”

I’ve seen firsthand that doctors often keep treating people long after they should stop, but who makes that call? It is easy to blame the doctors, but sometimes the patients want to keep fighting, and if there is even a slight chance of treatment working (and if the patients can keep paying), doctors usually oblige to carry on with aggressive approaches, as in June’s case.

We need to acknnowledge though, that discussing death, suffering and dying is hard, But it is not impossible.  We can, and we must do the hard things, and when we’re brave enough to have the hard conversations, it can make everything else much easier. I wonder if we would experience less denial if we communicated better from the start? This refers not just to communication between patient and health care worker, but also within our own family structures.

I recently read an article in The journey of lifelong learning modern medicine by Dr Craig Howes about the importance of actually discussing death and dying. He says: “Communication is vital to assist patients and families in understanding their disease and making informed choices about their healthcare. Poor communication at the end-of-life may be associated with poor bereavement outcomes and can leave patients and families feeling unsupported and unsatisfied with their care. Interestingly, pre-loss acceptance has been demonstrated to yield better bereavement outcomes for loved ones in terms of post-traumatic growth, but actually may be independent of communication of end of life.”

At June’s funeral, the family was clearly divided. The one brother was excluded from being a pallbearer. One sister refused to sit with the family. After the service, some family members did not stay for snacks and just stormed off. They were all heartbroken and the bottom line was actually just that they all loved her. They all miss her and did not want her to die, but instead of, instead of dealing with her loss together and grieving her while supporting one another, they are fighting and allowing their grief to become anger and resentment. We’ve had repeated calls from family members asking if June did not have a new will, if there were passwords left for her bank accounts or if she said anything profound in her last moments they can use as leverage in their arguments with each other. They all blame one another for her death, that she died too soon, that she died suffering, that she did not get better.

I wonder if the everybody was braver, and embraced this simple list of do’s and don’ts when having difficult discussions on life and death, things would not have deteriorated so much:

Do’s:

• Ensure clarity and absolute transparency.
• Create a safe and calm space and if possible, meet in person.
• Have direct and honest conversations. If prognostic information has been supplied by the medical professionals, acknowledge this, as well as the fact that there are always uncertainties. For instance, say “We understand from the medical team that they estimate that you have two weeks to a small number of months, but it could be shorter or longer.”
• Allow silence. When we hear bad news there is no need to fill all the awkward moments. Sometimes being together in the moment is what people need most.
• Acknowledge and explore emotions whether these are of anger, gratitude or confusion.
• Expect the unexpected and allow for each individual to cope with information in a totally different way.
• Prepare in advance, this is no time to wing it.
• Focus on the person’s quality of life, goals, fears and concerns. Acknowledge the fact that what the patient wants and needs may be very different from what you need in the situation, but it is their decisions and needs that really matter in this moment.
• Be authentic.
• Discuss treatment options and include realistic outcomes as far as you understand them, and be careful of using definite terms like, “It is always…” or “It is never…”
• Humour is a wonderful tool in these situations, and so are tears.
• Use proper terms like death, dying and pain. Have the courage to use proper terminology and take the power back in using words that scare people. Euphemisms are for poetry.
• Include family members or loved ones in the conversations. These situations happen to a group of people, not just to an individual.

Don’ts

• Don’t avoid the hard questions or negative emotions.
• Don’t discuss difficult issues casually, peripherally or quickly or in passing.
• Don’t use platitudes like, “It all happens for a reason” or “It’s not so bad” or “Many people go through this”.
• Don’t talk more than you listen.
• Don’t provide factual information as an antidote to strong emotions
• Don’t focus only on the physical changes and symptoms. The person’s psychological, spiritual, social and emotional needs are just as, if not more important.
• Don’t look at your phone or rush the conversation.
• Don’t ignore the spiritual aspects and asking questions which make the person uncomfortable.
• Don’t Assume you understand; this is different everyone.

One afternoon when I popped in to check on June, she was sitting with a hot water bottle on her stomach, sipping camomile tea. We chatted about men and I mentioned how much her husband loved her and how committed he was to her. The next minute, she burst out laughing and told me he was so nice to her because he cheated on her just before she got ill. I kid you not. She even gave me the gory details and said the gardener told her that when she travelled for business another woman stayed over. This fabulous gardener took pictures of everything. Don’t you love it? But she never told her husband she knew, and he never confessed. I have no understanding of psychology, but it seems to be that if you live your life being comfortable with denial, your last days might be fraught with it too?

I’m in denial that I’m in menopause, that my kids are growing up too fast, that I am a terrible driver and that I actually love Dolly Parton’s music, but by saying it out loud here in the blog today, perhaps I am learning to be more honest and face the truth. I hope this practice makes it easier and that when it comes to really important things, I can choose authenticity over denial. It’s always the better choice.