Why is dying not seen as a diagnosis?
BMJ 2021; 373 doi: https://doi.org/10.1136/bmj.n920 (Published 28 April 2021) Cite this as: BMJ 2021;373:n920
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Dear Editor,
Events similar to the described narrative occur occasionally in clinical practice. As doctors, we are trained to diagnose and then treat the diagnosed disease [1]. Treatment we offer until diagnosis is considered symptomatic treatment. Medical training has ingrained in us that symptomatic treatment is inferior to treating diagnosed disease. However, in some situations, delay in starting symptomatic treatment can prolong suffering and even precipitate premature death [2]. In medical practice, academic or otherwise, we rely on investigations to augment our clinical history and examination findings. Though tests are not infallible, fear of underdiagnosing or missing a treatable condition keeps us working to reach a diagnosis.
We are increasingly aware that the dying patient would prefer to leave hospital and to die at home [3]. Still, when a patient is dying from an undiagnosed cause, we do not want to stop investigating because we feel duty bound to reach a diagnosis. With the repertoire of tests accessible today, a patient dying from an undiagnosed cause for death has become unthinkable. We also do not want to admit ignorance regarding the cause of death. Doing tests to reach a diagnosis in a dying patient may satisfy our innate curiosity, and in this pursuit we forget that the diagnosis is of no use for the dying patient. But, at times, tests would need to be done to conclude that nothing further can be done and that the patient is indeed dying. Although performed in good faith, these tests may appear useless retrospectively after death.
Dying can become an easy diagnosis, with potential for harm, especially in elders. It would be easy to label someone as dying and refrain from doing anything, when in reality much could have been done to save life. If dying was a diagnosis, the world of the dying patient would definitely become much simpler. But it may still take a lot of testing and diagnostics to convincingly diagnose if death was inevitable.
References:
1. Jutel A. Sociology of diagnosis: A preliminary review. Sociology of Health and Illness. 2009;31(2):278–299.
2. Hänninen J, Rahko E. Oireiden hoito elämän loppuvaiheessa [Symptomatic treatment of a dying patient]. Duodecim. 2013;129(4):433-9. Finnish. PMID: 23484363.
3. Gomes B, Calanzani N, Gysels M, Hall S, Higginson IJ. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care. 2013 Feb 15;12:7.
Competing interests: No competing interests
Dear Editor
I once managed to persuade the New South Wales Coroner's Constable to accept "old age" as a cause of death.
A 93-year-old who had migrated to Australia and become a young nanny for a child, was now living with that now 70+ child and the child's husband, both of whom were my patients and near neighbours.
I attended to the couple's multi-morbidities as they aged . The old lady, whom I had first met in her youthful 80s. never needed any medical attention.
Filling out the death certificate, I could give no cause of death.
The Constable phoned to say that "old age" was not acceptable. I asked what he would like me to write down: coronary thrombosis, stroke, ruptured abdominal aorta, or some other undeclared illness?
With no known family, her 'child' and husband supported me. They, too, knew that she had never been ill,.
"Old age" was accepted, as I consider it should be.
Competing interests: No competing interests
Re: Why is dying not seen as a diagnosis?
Dear Editor
We offer nine common barriers to diagnosing dying.
1. Dying is a diagnosis…of exclusion. There is no definitive test to show it is happening. In general because of extreme reliance on tests clinicians shrink from diagnosing anything that cannot be demonstrated by testing or imaging. Delayed diagnosis is the norm when readily available diagnostic testing for a disease or illness is not available.
2. The narrative of illness is usually constructed on sustaining hope...both for the patient and for the healthcare team. The mantra for hospitalized patients is ‘Strengthen mobilize ambulate and discharge’ and this care plan can easily come to dominate the perception of the health care team such that signs of worsening can be overlooked. The interdisciplinary team (and discipline of geriatrics) is founded on the principles of rehabilitation. Therefore if rehabilitation is not possible, it can feel like failure for the treating team.
3. Being the bearer of bad news is not always rewarding and potentially risky. Being the first one to break the narrative of hope is easily perceived as a risky step to take as families and patients may view such information and those who provide it very harshly. “Saddle a fast horse for one who speaks the truth as they will need it to flee for their life.”
4. There is always something more that can be done. There are ALWAYS dozens or hundreds of interventions that can be done but that does not mean there is something more that should be done. Often to avoid the perception of being a resource steward, we do not scrutinize the value of interventions when we have a dying patient before us. This leaves people vulnerable to suffering through experiences that have little to no impact on the timeline or outcome of death.
5. Prolonging life = prolonging death. Patients commonly die of respiratory failure as a final step in progression to death for example. Noninvasive or invasive positive pressure ventilation can almost always be used to enhance respiratory function. Similarly renal failure can be treated with dialysis. Deaths due to dysphagia and anorexia or loss of the ability to swallow can be circumvented with nasogastric or intravenous fluid and nutrition. Even death itself is not a barrier to life prolongation as CPR can transiently restore pulse and circulation even to terminally ill patients dying of irreversible disease. Meaningful existence may not have been considered when these decisions are made.
6. The idea that patients must die of some particular disease or condition is misleading. Patients frequently die, not of something, but of everything. The frailty model of aging has clearly shown that beyond a certain frailty burden death must occur. Put more simply, many, perhaps most chronically unwell patients, die when they can no longer do the physiological and cellular work required to continue to live.
7. At or near the end of life many patients have care needs that can only be met in an acute care hospital. Acute care facilities are designed to diagnose and treat diseases, not patients. Consequently the default mode is one of active intervention even when death appears likely. Or inevitable. There is often only one area of a hospital dedicated to support death: the palliative care ward. But people die in all areas.
8. Consent to withhold treatment(s) near the end of life creates the illusion of an ‘opportunity cost.’ The requirement to obtain informed consent from dying patients (or their families) to withhold life sustaining treatments including CPR or admission to an intensive care unit sends a clear message that these treatments must offer some chance of enhancing survival and recovery. Why else would the conversation occur? Family members and patients cannot reasonably be expected to appreciate that they must consent to allow a procedure or treatment to be withheld when the option in question is neither indicated nor effective.
9. Virtuous care is its own reward. Clinicians who strive to diagnose dying and enhance the care of dying patients can enjoy enhanced job satisfaction and create meaning. Unfortunately these self-created rewards exist within a health care system designed to create intervention and fight disease and that has little capacity to value and acknowledge those who strive to enhance care of dying patients.
Competing interests: No competing interests