How is time to death calculated in terminally I’ll patients?
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It isn’t. It’s an educated, intuitive guess based on thousands of patients and 1000s of hours at the bedside. Sometimes there are various prognositic tools or scales that can guide a doctor in making the determination but ultimately, it’s a really well educated guess.
I’ll start with why doctors try to put a number on time to predicted death. One, patients generally want a range, even though that range can be significantly off. Moreover, to be eligible for hospice, you have to have a life expectancy of less than 6 months. Hospice is an amazing program for terminally ill patients for many reasons, but insurance won’t cover it without that.
It’s based on statistics. Cancers are staged based a many criteria including size, lymph node involvement, and metastasis. “Breast cancer” means very little to doctors. “T4a pN3a ER- PR- HER2- ductal carcinoma” gives information about the size, spread, and susceptibility to treatment options. With this information, doctors can reference a graph that gives a range of survival based on statistics. Usually you get an average survival along with a range that 95% of people with that stage survive
Outside of cancers, time until death is usually what I call SWAG: scientific wild ass guess. It’s partially based on stats, objective tests, and overall how shitty they look. Some diseases are better studied than others.
I’ve had patients outlive their diagnosis by years. I’ve had patients who were otherwise healthy come in with hip pain and died of metastatic breast cancer within 10 days. I’ve had patients I thought were 100% going to die overnight end up eventually walking out of the hospital. No one really knows, but stats help a little
If you want to be precise there are heaps of study and medical data that can predict outcomes based on stage of illness and contributing factors like weight, age, smoking, drinking etc
That said, most will just “eyeball it” and be relatively accurate based on their experience and the volume of cases they’ve already studied, read about and personally tended to.
There will always be outliers – often some extreme ones, but the curve is pretty easy to measure based on the average sample size a doctor has access to.
Source: work with data for a living (not a doctor – but a software and data science / IoT specialist and it’s no different than predictive maintenance for critical parts in industry – see enough and you can call a range, really wanna dive it, get the database out and do some analysis)
If you do a little research on the expression ‘actively dying’, you’ll see there are a bunch of signs and one or more of them happen to virtually everyone. They include – loss of appetite, changes in sleeping habits, changes in blood pressure and breathing and heartbeat, drop in body temperature, confusion, pain, hallucinations. Interestingly, it’s quite common for people to rally and have a day of coherence a few days before they pass. Medical professionals have seen all this happen so many times that they can use experience to give family members an educated guess on the time to death.
OK when it’s done by a coroner, they essentially try to backtrack when certain processes stop to get an estimate.
When it comes to ER and field pronouncements with paramedics on scene, it’s literally declared by the doctor as they hear about the patients condition. If we do cpr on a patient that seems pretty dead to begin with, we declare the time of death when we stop after there’s no response (there typically isnt.) Paramedics often call with people who have clearly been dead for some time(hours to days) from the scene, the doc on the radio will literally declare it at the time of the call despite the obvious discrepancy.
So the time of death as calculated in forensics is drastically different than what’s used for the general population.
Source: am er nurse, wife a forensics enthusiast.
Not very universal but when it comes to liver disease, doctors are able to use what’s called a MELD score (Model for End-Stage Liver Disease). It basically measures the probability of your mortality in the next 3 months based off your liver labs, clotting factors, and electrolytes. Not all diseases have this scale but liver disease is fairly common and someone was smart enough to build a mortality calculator.
Edit: I’ve had family members ask me (RN) how long their family member has left while on comfort care. We honestly have no clue because many patients can survive for a very long time despite a poor prognosis. I’ve seen a patient with clotted heart arteries survive for days longer than I’ve expected them too.
Patients that are actively dying do something called “chain stoking”. It’s a distinct type of breathing. I used to work in hospice care and patients that started chain stoking could take anywhere up to 3 days to pass away.
During code blue scenarios (respiratory arrest/cardiac arrest), once we’ve done all means necessary to try and revive them, the code captain will usually announce “does anyone in the room have any more ideas or suggestions?”
If the unanimous response is no, then they mark that down as the time of death. I’m involved in an average of 5 of those scenarios per week
Edit: I didn’t realize you said terminally ill. This is for acutely ill people.
Doctor here. It all depends on what they’re dying from. A lot of the mortality predictions come from cancer research – from large studies you can say that median survival is 3 years, ie if we took a hundred people in your situation, half would die before 3 years, the other half would live longer. If it’s a dialysis patient, you expect about a week after they stop dialysis. In my experience patients don’t ask as often as you’d think. Often it’s family members towards the end of life. I often use the “crystal ball” analogy. It’s common to say things like “long weeks to short months”. In the last stages of dying, it can be quite variable from long hours to weeks. Once someone stops eating and starts sleeping most of the day, you’re talking within days. Once they develop a pattern of breathing called Cheyn Stokes, it’s a day or two
It’s hard when someone is terminal and you know they could die within short hours, but the family doesn’t quite appreciate that and are talking about dropping the car off for servicing before they come in: you don’t want to be alarmist but you equally don’t want them to miss the passing of their loved one without the chance to see them again. The other hard situation is where the family press you for a more specific timeframe, eg do you think they’ll be here until auntie mavis arrives from overseas on Friday” or “should we get uncle bob to drive from interstate tonight?” I’ll say something like “we are really worried about your mum and how unwell she is. We really are dealing with an hour by hour process and there’s no guarantees”.
By far the hardest part is when it’s clear the person is dying, but the family aren’t ready or don’t understand the gravity. There’s a real tension between the patient’s status (i.e their symptom burden/suffering), the family’s hopes, the doctors’ insights and the nurses providing futile care that can be very emotionally burdensome for nurses. Maybe a palliative care physician can chime in, but I personally feel it’s not a dichotomous decisions to treat actively or to palliate. Sometimes the distinction is semantic and makes no practical difference. If the patient is suffering, I treat their pain/agitation/breathlessness/ nausea. It’s easy to cease medications that serve no purpose. Ceasing observation of vital signs or collecting blood tests are other intermediate steps. If the family wants to leave no stone unturned (or live with residual guilt), I can be swayed to continue IV antibiotics. It’s hard though when you know the treatment is futile and they will inevitably die – the nurses know that also and will urge me to “just tell the family we need to palliate” as if it were as easy as that. At that stage the doctor is making decisions that affect everyone’s wellbeing and it’s a hard balance to strike
People tell stories where the doctors “gave me 3 months to live”. That is what they hear, but not what is told to patients per say.
Generally, you will tell a patient “patients with similar diagnoses have lived for 3-6 months, we believe that in your case it is likely that ….”
You base it on the patient, the disease progression, and the treatment they are getting.
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