Who Decides Who Decides?

Last week a friend of mine called with questions regarding the diagnosis and future expectations surrounding his frail 82 year old Dad. A CT scan and a thin needle biopsy of a lymph node suggested a sarcoma, an unusual tumor. Surgery was described as the next step from the treating oncologist and a referral was arranged. My friend called to get my reaction. Several days later the patient and work-up was under review at another location six hours away by car.  More tumor material was obtained so special stains could be completed to make certain the diagnosis. A PET scan was obtained showing a second tumor; all but making certain surgery was unlikely to be beneficial unless the tumor had been misdiagnosed. After several days of special stains and review, the original diagnosis was in fact, correct. Now what? Two oncologists from the referral center were involved with the case and number one recommended chemotherapy at a reduced dosage while number two favored surgery alone, but only at a hospital six hours from the patient’s hometown, because of the risk. The hometown oncologist was on vacation for two weeks and the family was again full of questions. I get the phone update followed by a long pause. I ask, “What does your Dad want?” Response, “He’s really frustrated and just wants to get going on this thing.” I ask, “What do you suppose this means?” Long pause….

When patients are asked about their wishes nearing the end of life [and most know the time is near], I’ve rarely had anyone tell me they wanted to be in a hospital bed. [I must admit to knowing a patient who deliberately chose non-recommended high risk surgery in hopes of an on-the-table death over non surgery and the certainty of being cared for by his wife.] You virtually always hear about the people patients want to see one last time, the trip they want to take, seeing their favorite sports team one more time, or the affairs they want to get in order. Pain and discomfort is usually a concern, but rarely is death itself. As a critical care physician earlier in my career, far too often cancer and other end-stage disease patients were in an ICU bed with surprised family members saying their last good-buys to an unresponsive patient amidst monitors buzzing and bright lights. It was an ugly, unfortunate, and often avoidable scene.

And rarely have I ever spoken to a physician who wanted this fate for their patient. More often, stuff just happens. Someone just decides on that last round of treatment in hope of some miracle and things go crazy like kidney, heart failure, or bloodstream infection. Often the decision maker is just whoever is prepared to make a decision during a time of high stress. It may not be the patient but a family member, a nurse close to the case, or a doctor. And then the patient agrees, or not. Later on in a debriefing, I might learn the cardiologist meant to have a discussion with the end-stage patient and their family the last time they were discharged, when they were not in the crisis of the moment, but something got in the way and now they are on a ventilator with death imminent. We are all guilty of avoiding the crucial conversations which can mean the difference between doing what a patient really really wants before the last day arrives, and death amongst circumstances we really never wanted nor contemplated.

Most of us will die as the result of a chronic disease process. It is really important to first be sure we understand not only the diagnosis, but the extent of the disease and the likelihood of what the future may bring. Education at a fundamental level of understanding is critical. When in doubt patients and families must demand their caregivers make an effort to both explain and forecast the future using whatever knowledge and experience at hand. Second opinions should be sought whenever there is further doubt. Late disease treatments, either surgical or medical, are often of limited value or fraught with high complication rates, resulting in those last days being at odds with what a better informed person may have decided. It can be useful for patients and family members to request palliative care or hospice consults as a means of getting more information and initiating shared decision making. When the functional status of a patient is deteriorating in the context of chronic issues and unsuccessful treatments, it is time to deliberately explore the really important questions. Or ask someone you trust outside the family or current circle of caregivers just to give another opinion.

A Palliative Performance Scale can be a useful tool for engaging patients and their loved ones for proactive discussion of those what-if issues we are all going to face unless we get lucky. In my experience, the tool is as useful for getting the caregivers to engage the patients as it is for the patients and families to stop and think about engaging the caregivers. Certainly once a chronic disease patient has a score below 60, it is time to have some engagement regarding end-of-life issues.  The tool is a reasonable predictor of when the end is near.  And a periodic reassessment using the tool and a timeline since the last conversation, can be even more beneficial in helping the caregivers and patients get on the same level of planning.

Each of us, along with those who love and care about us, want to be sure what’s most important can be accomplished before that last day arrives. Fortunately, most people can be kept comfortable until the very end, without making death in a hospital bed necessary.

Whenever I review hospital mortality rates at http://www.hospitalcompare.com/, the first question I ask myself about hospitals with high mortality is, “I wonder how good or bad this hospital, or associated physician group, is at shared decision making?" Though this might seem strange, my experience has been that caregivers that do a great job planning next steps with their chronic disease patients, have lower rather than higher hospital mortality rates just because of good planning and shared decision making.

Who decides who decides? The health reform debate has charged insurance companies with the responsibility for improving quality and eliminating waste and inefficiency in the health delivery system. There is a lot of opportunity for making those last days more pleasant for those we love through better and more deliberate engagement, improving quality and reducing waste. Should the insurance companies require all contracted providers to show proof of engagement for appropriate populations of patients as a quid pro quo of full reimbursement? How else do we fulfill the responsibility of improving value?  Thoughts?