Wednesday, April 22, 2009
JAMA has a couple related articles which, while not palliative care specific, will likely resonate with many palliative clinicians.
The first is from their 'JAMA Classics' series which presents an older article with a new commentary. This one revisits Francis Peabody's classic 'The Care of the Patient,' which is about caring for the patient as opposed to the disease. It is not comforting to know that over 3/4 of a century ago Dr. Peabody was identifying problems with medicine that persist, in an even deeper way, today. Much of the classic paper proposes an early attempt to claim as medical, and scientific (worthy of scientific attention, and of the science of medicine), our patient's emotional states and whole-person experience of illness. The actual classic article is presented in a scanned pdf that my pdf reader doesn't recognize as text so I will quote from the commentary only:
'The treatment of a disease may be entirely impersonal; the care of a patient must be completely personal.'
Peabody concluded this JAMA Classics article by pointing out that a physician who neglects the emotional life of a patient is as "unscientific as the investigator who neglects to control all the conditions that may affect his experiment." Ultimately Peabody reminded all physicians that "the secret of the care of the patient is in caring for the patient."It is sobering to consider that so much time has gone on and as a profession we still have little idea how to use the tools, the knowledge, the technology we bring to our frightened, suffering patients.
The second paper is an editorial, using (mostly) retinitis pigmentosa as an example, about our research and clinical approach to diseases 'without treatment options.' The commentary's subtitle is 'something can be done.' My assumption is that the commentary was published in this issue due to its consonance with the Peabody paper. It is not about palliative care, and while discusses dementia and neurodegenerative disorders, has no focus on life-limiting illnesses. Instead it is a call to recognize the importance, both research-wise and clinically, on the illness experience of patients with diseases for which we have basically zero disease modifying options, and the importance of understanding that and supporting patients through that, and never saying 'there's nothing that can be done.'
The traditional research model that progresses from understanding disease biology to identifying effective therapies and ensuring patients receive those therapies is a long and laborious journey that often may do little to relieve patient distress and morbidity. The traditional translational research model could be coupled with a model that begins with patient systems [sic: I assume they mean symptoms - Drew], ensures that patients receive known effective therapies for their symptoms, conducts clinical research to find new therapies, and investigates disease biology. This model might begin with the development of systems to monitor and report patient symptoms, which could elicit patients' experiences via the Internet, electronic databases, or through the use of other technologies. This approach could lead to several areas of research including the design of interventions from known therapies to ameliorate those symptoms, the induction of clinical studies to fill knowledge gaps regarding effective therapies, and conduction of basic science research to fill knowledge gaps regarding disease biology as it relates to patient symptoms.Ignoring the question of whether the internet is the solution here (might I suggest Twitter? #retinitispigmentosa), their argument is essentially that research, including bench research, that goes straight from pathophysiology to disease modifying therapy does not serve our patients well. 'Cure,' while possible, is often a long way off, and addressing our patients suffering (including with rigorous research) is paramount. I think it's great that are making this argument, completely de-linked from life limiting illnesses. Whether the NIH &co agrees, we'll see....