Imminent Death: Best Guesses of How Much Longer

“Imminent death” is a search term that brings a lot of people to this blog. I am going to be adding more posts on this subject and collecting sources mentioned in a permanent page (as opposed to a post) as I go along.

One problem is that a lot of this material is in journals that you may not be able to look at for yourself because they are subscription only. The best way around this is to find someone enrolled in a college or university and ask to be allowed on via their ID/password. If you can get into a research library, and if the library still purchases hard copies of journals, that is another route. And it used to be true that if that library is a depository for government documents, you had to be admitted — at least to that area (but once in, well…). But that may no longer be true.

So one thing I’m going to do is to quote extensively here.

As I’ve noted before, it is surprisingly difficult for doctors or nurses to predict just how much longer a terminally ill person has left. This study, “Extent and determinants of error in doctors’ prognoses in terminally ill patients: prospective cohort study” [BMJ. 2000 Feb 19;320(7233):469-72] compared their doctors’ estimates for the time remaining to 468 terminally ill patients to the actual amount of time they survived. Authors Christakis and Lamont reported [emphasis added by me]:

Our study of 365 doctors and 504 hospice outpatients found that only 20% of prognoses were accurate. Most predictions (63%) were overestimates, and doctors overall overestimated survival by a factor of about five. These prognoses were doctors’ best guesses about their patients’ survival prospects, objectively communicated to the investigators and not to patients themselves. …  the tendency of doctors to make prognostic errors was lower among experienced doctors. Moreover, the better the doctor knew the patient-as measured, for example, by the length and recentness of their contact-the more likely the doctor was to err.

These findings have several implications. Firstly, undue optimism about survival prospects may contribute to late referral for hospice care, with negative implications for patients. …Doctors who do not realise how little time is left may miss the chance to devote more of it to improving the quality of patients’ remaining life. Secondly, to the extent that doctors’ …prognostic information affects patients’ own conceptions of their future, doctors may contribute to patients making choices that are counterproductive. Indeed, one study found that terminally ill cancer patients who hold unduly optimistic assessments of their survival prospects often request futile, aggressive care rather than perhaps more beneficial palliative care… Thirdly… disinterested doctors, with less contact with the patient, may give more accurate prognoses, perhaps because they have less personal investment in the outcome. Clinicians may therefore wish to seek “second opinions” regarding prognoses, and our work suggests that experienced doctors may be a particularly good source of opinion.

Some of the key points are summarized here.

There are efforts to devise prediction models. You can read these without a subscription or university connection. They are all fairly technical and not easily summarized or quoted. Note too that they are for specific illnesses:

A good resource in general for matters relating to this issue is the End of Life/Palliative Education Resource Center (EPERC) at the University of Wisconsin, especially the section Fast Facts and Concepts.  These are aimed at doctors, but many are easy to understand, and oftentimes it is useful to know where the doctor is coming from. There are some disease-specific prognostication guides:

One Fast Fact covers the Palliative Prognostic Score  [PaP] (chart pasted below) and notes:

The PaP was originally developed for use in cases of solid tumors and has been validated in large prospective studies in such patients. More recently, the PaP has been shown to be reliable in patients with various non-cancer diagnoses (e.g. organ failure syndromes, AIDS, and neurological diseases) but large-scale validation studies have not been published. There are no published data regarding the accuracy of the PaP either beyond the 30 day time frame or in direct comparison to other prognostic scoring systems.

The Palliative Prognostic Score (PaP)

CRITERION ASSESSMENT PARTIAL SCORE
Dyspnea NoYes 01
Anorexia NoYes 01.5
Kamofsky Performance Status >3010 – 20 02.5
Clinical Prediction of Survivial (weeks) >1211-127-105-6

3-4

1-2

022.54.5

6

8.5

Total WBC (x109/L <8.58.6 – 11>11 00.51.5
Lymphocyte Percentage 20 – 40%12 – 19.9%< 12% 012.5
RISK GROUPA

B

C

30 DAY SURVIVAL>70%

30 – 70%

< 30%

TOTAL SCORE0 – 5.5

5.6 – 11

11.1 – 17.5

    

Note: Dyspnea means difficulty breathing. Anorexia means not wanting to or unable to eat. Clinical Prediction of Survivial is the doctor’s best guess. Total WBC and Lymphocyte percentage are measured in blood tests (WBC=white blood count; lymphocytes are a type of WBC).  Karnofsky Performance Status is explained below [source].

KARNOFSKY PERFORMANCE STATUS SCALE DEFINITIONS RATING (%) CRITERIA

Able to carry on normal activity and to work; no special care needed.   100   Normal no complaints; no evidence of disease.
90 Able to carry on normal activity; minor signs or symptoms of disease.
80 Normal activity with effort; some signs or symptoms of disease.
Unable to work; able to live at home and care for most personal needs; varying amount of assistance needed. 70 Cares for self; unable to carry on normal activity or to do active work.
60 Requires occasional assistance, but is able to care for most of his personal needs.
50 Requires considerable assistance and frequent medical care.
Unable to care for self; requires equivalent of institutional or hospital care; disease may be progressing rapidly. 40 Disabled; requires special care and assistance.
30 Severely disabled; hospital admission is indicated although death not imminent.
20 Very sick; hospital admission necessary; active supportive treatment necessary.
10 Moribund; fatal processes progressing rapidly.
0 Dead

 Another method for predicting survival times is also available, The Palliative Performance Scale (PPS), it but would not copy-paste correctly.

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2 thoughts on “Imminent Death: Best Guesses of How Much Longer

  1. So very true. There’s abundant antecdotal evidence — and no medical explanation — of people beating the odds and living until a grandchild is born, or a special anniversary is reached, or until those they need to spend more time with can arrive.

    No force it seems is stronger than the human will.

    And while I doubt there are many who regret going to their loved one’s side when an anticipated death proves delayed , I expect there are quite a few who regret waiting only to arrive too late.

    And yet the way we live now, the distances that separate us, it is hard to know what to do when. Very hard.

  2. I rushed to be with my mother when the nurse suggested that waiting another three days, as originally planned, might not be a good thing. So I thought she’d be dead within days.
    As it happens, my mother (in the late stages of secondary liver cancer) discharged herself from the hospital when I arrived, and once home she lived for another five weeks. I think that being where you want to be, and having loved ones around you shouldn’t be underestimated.

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