09/02/2024
Breaking bad news is a nuanced art in medicine and has undergone dramatic shifts of morality. I think you will be shocked by what used to be the advice of the AMA. A thread . .
In 1847, doctors were advised against disclosing severe diagnoses to supposedly protect patients from despair. The AMA considered it a 'sacred duty' to shield patients from harsh truths.
In 1882, Daniel Cathell advised doctors to withhold information to prevent patients from becoming 'self-sufficient.'
Fast forward to 1961 the Journal of the American Medical Association reported that >90% of physicians preferred to not disclose cancer diagnosis
In the late 1950's and early 1960's, ethical abuses came to light: patients injected with live liver cancer cells without informed consent and the thalidomide disaster for example.
Other long term unethical studies like:
- Tuskegee Syphilis Study (came to light with public outrage only in 1972) - non-consensual observation of the natural progression of untreated syphilis in African American men
Willowbrook Hepatitis Studies (1956-1972) -researchers deliberately infected mentally disabled children with hepatitis. The aim was to study the natural history of the virus and to test vaccines
"In 1979, a pivotal shift: 97% of physicians surveyed preferred to disclose cancer diagnoses", a stark contrast to earlier decades. This change underscored a growing emphasis on patient autonomy.
The introduction of the 'SPIKES' protocol in 2000 revolutionized the delivery of medical news. This framework guides doctors through the process, emphasizing empathy and strategy in communication
With online health portals and access to information like never before, patients are more informed yet continue to rely on doctors for clear, empathetic guidance on their conditions
Unfortunately, when it comes to dire diagnoses, even with the SPIKES protocol which is good, some doctors who speak of 5 year survival rates for example do not explain that statistics can never describe each individual.
My mentor of blessed memory, Gerald Epstein, MD used to say that communicated with enough force & authority, 5 year survival rates can become self-fulfilling prophecy. While disclosure of this data is important, people should understand that they are not a number and this is a numerical generalization of an 'average patient.'
There is an evolution toward better and more moral and empathetic discussions. It is imperative that the government stay out of this discussion.
We have seen an eroding of the sacred relationship of patient and doctor because of governmental policy and pressure over the last decade.
Patients do not need doctors anymore to find out information, yet, having a caring physician who can communicate and explain diagnoses and has the modesty to recognize that he/she can't predict the future, remains rare yet important.
Last week, I lost a patient of mine, who I diagnosed with metastatic melanoma in 2010. She was given 6 months to live by an oncologist in 2010. She passed away last week due to other causes.
Shirley was remarkable, I told her right away, she isn't a number and only God knows when you will die, doctors are not fortune tellers. I didn't need to tell her this, she knew.
She became an inspiration to others and supported others on their journey's as well. Her memory is a blessing.
[Many thanks to Gordon et al, JAAD August 2024 for much of the didactic content above]
