There is only one correct, perfect, absolute approach to life and decisions near its end. This truth relieves the doctor of final decision. The right way lifts the burden of anxiety, confrontation or guilt. The perfect path makes giving care at a very hard time, much easier. That correct course, the only way to treat every patient and every family, is exactly what the patient and family say it is.
This idea is simplistic, even contrite. Each end-of-life journey, for every patient and family, is full of stop and go’s, bumps and bruises, highs and lows. How can this be perfect? Because, we die as we live, with stops, bumps, highs and lows. The doctor, patient and family must understand that this is the human experience. We will come to the end of our journey by the road most natural for us and us alone. There is no right or wrong; there is the panorama of our lives.
The problem with this philosophy of care, which only requires informing each patient and family of choice and then supporting their decisions, is that it can produce what seems like unnecessary suffering. Often patients and families pick alternatives which almost deliberately result in pain, fear and loss. Doctors who have walked the path many times, see the horror around the bend. Therefore, supporting choices that are bound to increase suffering, feels futile, uncaring and desperate.
I recently saw three patients that illustrate such disparate experience. The diseases are similar, the final result will be the same, the paths chosen different.
They are less than 50 years old; a wife, a sister, a husband. They have advanced stomach cancer, metastatic colon cancer and spreading pancreatic CA. They have undergone extensive treatment; surgery, radiation and chemo. All have increasing, resistant disease, unlikely to respond to treatment. Wheel chair or bed bound, severely wasted with sunken, frightened eyes, they will die in the next few months. Each is in pain.
With their families, these patients have chosen their paths. The first has decided to build up, get stronger, so that she may begin new “aggressive” chemotherapy and fight the disease. Despite being told that the likelihood of benefit from chemo is slight, they plan to continue the battle. They demand IV hydration and nutrition, minimal pain control, physical therapy, transfusions, frequent lab tests and they intend to begin anti-cancer drugs, as soon as she is ready. She is full code; her doctors have been told to put her on machines, if her heart or lungs stop.
The second, is receiving off-label chemotherapy, which is unlikely to help and which is causing debilitating side effects, including precious days in hospitals or doctor offices. They do not plan to put her on a respirator if she stops breathing, but would use drugs to stimulate her heart or dialysis to support her kidneys.
The last patient and family, making decisions at a nearly identical life moment, has decided to focus on “aggressive” pain control. They will give intravenous hydration only if thirst becomes a significant symptom. They are moving into palliation and hospice. They do not want extraordinary measures of life support such as CPR, ventilator machines, artificial feeding or dialysis.
For the physician, knowing that two of these paths may result in preventable suffering, supporting these choices is not easy. Nonetheless, the patient and family must decide on the steps of the journey. Only they can put into these hard decisions in the context of their lives. Therefore, each of these plans are perfect and it is my job to design, administer and support. The real question is whether such suffering is necessary?
Life is complex and at no point do we make universally ideal decisions. Every moment is compromise. From the moment of birth, we make infinite choices between alternative paths. Only each person can understand the consequences; gain and loss, success and failure, joy and guilt. This mélange of dreams and loss comes to its final test in a brilliant naked moment as the universe screams “this is it.”
It is within this personal zeitgeist that every patient and family, must make the hardest of decisions. This is not a context we can easily articulate or explain; it is the base and substance of who we are. We make decisions, many painful, built on the foundation of our lives. It is right for us, even if it would be deeply wrong for a friend, neighbor or doctor.
The physician will never completely understand the patient. That is not her calling. The job is to explain disease, treatment and the likely, possible, outcome. The doctor may recommend, based on the wisdom of a career; predict what is coming round the bend. However, the clinician’s burden is to understand that for each patient and family there is one perfect path, and to support them on that journey.