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Posted by Dr. Lachlan Forrow September 30, 2013 08:00 AM
What will it take to ensure that care near the end of life is always anchored in the patient's own goals, values, and preferences?
It is as simple, and also as complicated, as the "4 R's" of respecting patients' wishes:
Reach out -- we need to ask every patient about their goals and preferences for their care, including who they want to be their voice if they can't speak with us themselves.
Record -- we need to document the patient's preferences clearly in their medical record.
Retrieve -- we need to ensure that those preferences are promptly available at any predictable future point of care.
Respect -- we need to ensure that those preferences are always respected.
A truly patient-centered health system would never fail in any of the 4 R's. Failure would be viewed as a "serious medical error", especially if a patient was harmed by the error -- whether because s/he suffered in undergoing burdensome interventions s/he would not have wanted, or because we failed to do medically-available and potentially-beneficial things that s/he would have wanted.
My hospital -- Beth Israel Deaconess Medical Center -- has committed itself to eliminating "preventable harm", and holding ourselves publicly accountable for doing so. We provide regular reports on our public web site reporting on progress (or not) in eliminating such categories of "preventable harm" as preventable hospital-acquired infections, "falls resulting in injury", and several other forms of "harm" that we believe should never happen. We are exploring the possibility of adding "treatment a patient would not have wanted" as an explicit category of "preventable harm", especially if it involved significant burdens to the patient.
To guide the development and implementation of systems that will support our staff in eliminating this category of "preventable harm", we have adopted the framework of the "4 R's", which emerged as an idea in the Institute for Healthcare Improvement's "Conversation Ready" initiative that we are participating in.
Each of the "4 R's" raises issues that are far from simple -- some are medical, some ethical, some purely logistical/practical. And each of them takes resources -- time for doctors to address these issues with patients during medical appointments, time for training of doctors (and nurses) about how to do that, time for doctors in emergencies to find the information they need, and the creation of systems for medical records that ensure that crucial information is always promptly-available.
The complexities are multiple:
For "Reach out": while every adult should be encouraged to designate a "health care proxy", detailed discussions in the doctor's office of goals and preferences for life-sustaining treatments make little sense for most young, healthy patients. But they are crucial and urgent for patients who are older and sicker. What conversations should be expected, for which patients? And for a patient with a serious illness, who should be responsible? For a patient with cancer, is it the oncologist? The primary care physician (PCP)? Both?
For "Record": Beyond documentation of a patient's health care proxy (with contact information), what information, and in what detail, is it essential to record, and where? When do we want or need a signed written document (such as a MOLST form) from the patient, and when is their doctor's note about a discussion sufficient?
For "Retrieve": In the fast-evolving world of standards for electronic health records (EHRs), what information should be instantly-retrievable, and by whom? Who is responsible for ensuring this? Does every primary care doctor's office need systems for scanning documents into the electronic record, or when is it sufficient for the EHR just to indicate that a document exists in the paper record? What information needs to be instantly-retrievable in some form of state registry, or inter-operable EHRs across institutions, so that when a patient under one system's care arrives in another system's Emergency Department the doctors there will know what to do? Who should be responsible for (and pay for) creating these systems?
For "Respect": Since it is impossible for any plan to anticipate every possible decision that may need to be made in an emergency, when is it reasonable for doctors in an emergency to "err on the side of life"? When is it reasonable for those doctors to conclude that "this patient would not want this" and allow the patient to die peacefully, even though "heroic measures" to prolong ("save"?) the patient's life might clearly succeed?
All of us need a health system that is designed to ensure that the "4 R's" of respecting patients' wishes happen correctly for every adult patient. As with all "quality standards", to ensure that the "4 R's" happen, our health system needs not only to require (through standards and accountability) that they do, but also to support doctors and nurses in all the tasks that are involved.
And while it is more complicated than you might think, it is not more complicated than many other things we have figured out how to do once we have decided they are crucial in patient care.
And few things are as crucial to all of us as knowing that, both for ourselves and for everyone we love, surviving family members will be able to look back and say "our loved one was cared for the way s/he would have wanted."
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About the authorLachlan Forrow, MD is Director of Ethics Programs and Director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School. More »
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