Bad news is never welcome.
Bad news about one’s family is even less welcome.
When patients come to hospital, there is usually a very good reason. That might be a short, acute illness which requires a short stay, it may be a prolonged series of unfortunate events, which render a loved one devoid of that vitality that once defined them.
When it comes to chronic conditions – in particular those where there are few treatment options which affect mortality – be that COPD, dementia, certain cancers, heart failure (to name but a few) there is a variation in the trajectory which each patient takes, but the general direction of travel is often quite obvious to those looking in from the outside – and indeed, has been mapped out for a number of them – this is an example from NHS Lothian:
One problem which I experience all too often is that the view from the ‘inside’ of some cases is very different indeed.
It is not unusual for me to meet patients who are struggling with their daily care needs, and have recruited family and friends to help with daily tasks which most healthy people don’t give a second thought to; walking to the toilet, having a shower, getting into or out if bed.
The human race is great at adaptation – it’s one of the reasons we have taken over our globe so completely. Individuals are great at adaptation too.
Adaptation and compensation for deteriorating health is great, but can become a charade, a way of covering up a slow decline into dependence.
And here is the problem, people often cope so well with their failing health, that to point out the trajectory can come as a shock, and as with all major revelations, patients can experience the full range of the Kubler-Ross grief reaction: (put in picture)
However, if, as doctors, we go along with the impression that all is ok, we can end up colluding with patients in a fantasy that all is well, and there is no need to worry.
In chronic conditions that lead to death, is this collusion actually good medicine? To expose a patient to the full, often stark, reality, of their condition in an explicit way could do significant harm, and precipitate worsening meta-problems such as anxiety or depression, and their coping could worsen, but equally, I hate the way that many end of life conversations seem to fly in the face of years of ‘its alright, we’ll keep you safe’ type conversations, and rather than a slow unveiling of the terminal phase of an illness, feel more like a push off a cliff into the void.
I don’t want all of my patients with chronic conditions to buckle under the weight of their diagnosis, and equally don’t want them all labouring under a false impression of invincibility – or an unrealistic expectation of durability (the futile encouragement from relatives that an elderly relative will ‘fight’ a metastatic disease, or multi-organ failure is tragic to witness).
I would, however like to be free to have more honest conversations at the right time, in the right way for each patient.
The problem seems to be multifactorial, but a culture of giving hope where perhaps there should be gentle revealing of reality is one if the key barriers. Death and illness seem to be failures in our clean, tidy, forever young western world. However, brutal honesty is not always helpful, and patronising collusion seldom is.
The right balance is different for each patient, but societally I think we need to start to reconnect with the frailty of the human frame, and not believe the hype about living forever in perfect health.
Lest we forget: life is a sexually transmitted disease with a 100% mortality rate…