It also helps for families to understand any ‘pathway’ e.g., terminal care pathway or ‘Fitness score’ that the care team use as a shorthand to assess a patient’s risk of developing serious complications in hospital, most importantly sepsis.
In Martha’s case the BPEWS (Bedside Early Warning Score) was ignored and undocumented. This summary of critical factors contained the accurate assessment of Martha’s risk profile. No account was taken of this information. The result was that a transfer to the intensive care unit was not even discussed as Martha’s condition deteriorated. All the warning signs were in fact documented (as became evident after Martha’s death) but no-one among the doctors put this all together and acted in the urgent fashion which was needed.
For adults the National Early Warning Score (NEWS2) has been developed for just this purpose and is a single system standardised across the country. The six ‘observations’ given weight are those routinely measured in a patient on the ward; namely pulse rate, respiration rate, oxygen saturation level in the blood, (using an oximeter on the finger), blood pressure, temperature and level of consciousness or confusion. (This last ‘confusion score’ is a recent addition). Use of this scoring system is mandated in acute treatment centres.
Just type the initials into your iPhone and you will find, for example, what NEWS2 means.
If appropriate to your situation, you may need to learn about the Apgar score for new-born babies which measures heart rate, muscle tone and other signs to see if extra medical care is needed.
Most adults visiting a GP may be assessed for a QRISK2 cardiovascular risk score. This indicates a low, medium or high risk of developing cardiovascular disease.
For the more advanced cancer patients the relevant score may be Palliative Performance Scale (PPS)
Being familiar with these types of scores helps you understand what doctors consider important in your condition.
A further healthcare limitation is worth knowing. Your doctor may well be constrained in what investigations, procedures or treatments are available to them. Doctors are frequently constrained by the ‘guidelines’ they are required to follow. They are not necessarily free to recommend what they would ideally choose. If what is recommended does not align with what you were expecting, it may be necessary to ask about this. However, the doctor’s hands may well be tied.