The business of dying.

Medicine encourages a buy now pay later mind-set; or put differently many illnesses are reacted to in a set way and the consequences are counted later. Most of us will recognise that at a certain point in a clinicians growth of experience many actions can be guided by pattern recognition and the knowledge of guidelines. This knowledge-to-action approach is flow friendly and time efficient and hospital systems love flow. However, personal development often comes from looking in to the fine print before committing to the purchase when considering the value to the patient. Or in other words understanding when the guideline applies, when it doesn’t and when the shiny guideline reflects value to our purchaser- the patient. 

 This is why, perhaps, recognising dying is so hard. Instead of a buy now pay later approach that is flow friendly and easy once you’ve learned the patterns, instead it requires a knowledge of the product (disease), the cost (treatments) and of course the preferences of the purchaser. For this reason it isn’t possible to have a guideline that covers the skill of recognising dying. Most professionals will recognise for this reason that recognising dying is perhaps the hardest skill a clinician can master. After all, it isn’t made easier by knowledge of the patterns and recognising someone who is sick enough to die definitely slows things down. In addition there is a cultural and perhaps cognitive preference to avoid nuance where possible. Put another way: people generally like the idea of buy now, pay later. At least until the they find out that they didn’t have the savings they thought they had and then the credit company comes knocking.

“Perhaps the greatest act that a person devoted to improving the lives of others can do is to recognise when improving doesn’t mean better, but might mean a little less bad.”

How then do we make this easier? Perhaps the only way to make something hard become less hard is to first acknowledge that it is a challenging concept. Not all of us will be good at this, although hospitals helps us here because there’s usually someone who is able to help. 

People will always get sick and will always eventually die. Not all of us have the figurative financial reserves to afford the products we want and sadly there is no handy banking app that tells us when we are on our overdraft. It is often down to doctors then to recognise that a person is dying. That very soon they will be in the sort of debt that no-one gets to pay back.  

There are signs of dying (see box 1.): importantly these aren’t exhaustive but can help raise our index of suspicion that someone may be moving from the black column to the red. Of course, sometimes we are wrong. Sometimes the patient has an off shore holding, a sudden inheritance, a figurative windfall from the lottery. These incidents are rare and we have still have to be responsible accountants when dealing with the balances of life-after all, it isn’t our health that we are spending. 

How to talk about the end.

I could try and list all of the reasons people tell me that they worry about discussing dying. However, I think it is probably the themes that are more helpful to talk about than the individual reasons. The first theme is the desire to save, to improve and to get better. The second comes from a fear of getting it wrong. Whether getting it wrong means the patient outliving an expected prognosis or being contradicted by a colleague or simply having a poorly perceived conversation.

I can’t tell people not to worry about these themes. I can tell tell you to be mindful of them, because no matter what way you try to look at life, none of us survive the bit that comes after we are born, some of us just enjoy it for longer. So as clinicians who treat sick individuals we are going to be exposed to dying and death.

“There’s no escaping the relationship between the healer and the un-healable.”

Perhaps the greatest act that a person devoted to improving the lives of others can do is to recognise when improving doesn’t mean better, but might mean a little less bad. The gift that we give when we recognise dying, be it days, months or even years is time. Time to adjust and make the best of a difficult period. So if you have the opportunity to recognise that someone might be dying, please try to be aware of the themes that may be holding you back and instead move forward with your patient in recognising something that isn’t easy but is often more valuable than any material possession. 

Box 1.

The Hawkins criteria- signs of dying.

·      Albumin <25 (non-specific),

·      Cachexia (greater than 5% weight loss in 6 months plus fatigue or increasing functional weakness and anorexia or persistently raised CRP without other cause). 

·      Repeated hospital admission in the last 6 months (equal to or more than 3),

·      Functional deterioration equivalent to a 40% change in Australia- modified Karnofsky Performance Status (AKPS) in the past 6 months or a new AKPS of 10% to 30%,

·      Repeated infections without apparent resolution of clinical symptoms, (for any significant time period). 

·      Clinical frailty score of 8 or 9.

·      Advanced disease effecting more than one organ.

·      Neuro degenerative diseases eg: dementia, Parkinson’s, where there is compromise of the swallow.

Please note that although the above criteria often correlate with a likelihood of poorer prognosis they are not causative and clinical judgement is required.