DOCTOR’S DILEMMA

by Academy of Clinical Excellence on January 19, 2011

When caring for the patient collides with complying with the system.

He was hemiplegic with a tracheostomy needing a ventilator 12-16 hours a day. He was highly intelligent and a genius at fixing computer hardware and software problems - solving many problems for our staff, patients and visitors. He was also cantankerous and demanding, forcing us to agree to his schedule and needs. When we failed to do so, he would curse, throw things, and be verbally abusive to our nurses and staff. However, he finally settled down and we were able to adjust our routines to his preferences, which included not taking vital signs except when he permitted and allowing for an occasional “schnapps”. Under new rules from the State,he was transferred to a less acute skilled ventilator facility. Unable to adjust at the lower cost facilities, he died.

 

I am responsible for the care of patients, usually older and invariably frail, who have survived surgery and intensive care but remain ill and on life support (ventilators, dialysis, tube feedings and now left ventricular assistive devices LVADS). Some have end stage conditions requiring comfort and compassionate care at the end of life. Others can be liberated from artificial life support and return home. Yet there are some who, in limbo, require attentive care on ventilators for many years. They and their loved ones have elected to preserve life despite costs and adversity. The financial costs fall to insurance companies and when this support runs out, Medicare then Medicaid become the payers - which ultimately means the taxpayer.

The Department of Health and Mental Hygiene issued nursing home transmittal 202 April 11, 2006 which revised the criteria in the state of MD for chronic level of care that required patients not meeting the criteria should be transferred to lower cost centers, called ‘skilled ventilator facilities’. This sort of facility was where my patient was transferred. I resisted his transfer knowing how difficult it was for him to adjust but ultimately gave in. At our facility, he was engaged and content. One year after leaving our care - he died depressed and bitter. When I learned of his death and the misfortunes that fell upon him during his final year, I resolved to follow up personally all transfers similarly mandated by the State’s contractor under the new guidelines.

A total of 18 patients on my service have been declared “stable” ready for transfer to skilled ventilator facilities. Fifteen have died – often soon after their transfer. Currently,at the patients’ and their families’ urging, I have refused to move other patients declared “stable” and ready for skilled vent facilities. My decision was based on data - comparing survival of those declared “stable” and not transferred from our ventilator unit with those who were transferred. The resulting analysis shows a statistically significant increased mortality rate that is associated with the transfers. This follow up information suggested that the criteria and processes for deciding who to transfer was flawed.

Armed with this follow up data, I have not agreed to transfer patients against their will, or the wishes of their of loved ones.I have worked with legal aid of Maryland to defend my patients against these seemingly arbitrary criteria, and have since gone to the Administrative court, subpoenaed by my patients, to appeal the decisions for transfer. Only one patient won her case, but later lost in an appeal in the Circuit Court. In the course of this contest, the state has made some minor modifications in the paper guidelines which define “stability” but have not agreed to see the patients or their families. As might be predicted, these changes do not adequately address the problem.

 

Our facility is losing financial support for those patients who have refused to be transferred and suffers substantial financial hardship with the threat of not being able to continue to support ventilator patients should losses escalate. The administration, though under great pressure fiscally, has supported my decision not to comply with transferring out patients termed “stable” by the State’s contractor when they and their families have refused to be moved. However, the pressures on our “not for profit” facility continue to escalate.

In long term care, staff (including physicians, nurses, and others) come to know patients and their families’ very well - with a sense of caring and protection that often goes well beyond what can be established in acute care settings. To practice best care, one must know what happens to our patients in the current health care system when they are transferred through the many series of “silos” which they must pass. Decisions for transfer not based on follow up data may result in injuries, rehospitalization, or death. Truly caring for ones patients’ demands knowing what happens to them; sometimes this requires collecting the critical data that others will not. This is what has become necessary if we are truly committed to clinical excellence in our system in which subcontractors and insurance operatives who have never seen the patient are making the decisions.

William B. Greenough III, M.D.
Professor of Medicine
Division of Geriatric Medicine
Johns Hopkins Bayview Medical Center

 

 
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