It was a call from a referring physician who wanted the patient to be transferred to our major academic center. The patient had a history of a lethal malignancy in a very advanced stage. The patient was already outside the bell curve, for she had survived far longer than expected for a malignancy with such a dismal prognosis. The patient presented with bleeding, which was alarming to the patient and family and also difficult to manage in a small town hospital. Although the patient had a do-not-resuscitate (DNR) order, it was decided that the patient would be transferred to our major academic center for further care.
The patient did arrive stable and was transferred to the intensive care unit. Upon review of all investigations, it became obvious the bleeding was caused by erosion of the advanced tumor into major blood vessels. We had some lengthy and frank discussions with the patient and the family members outlining the extent of the disease, the dismal prognosis, the risks/benefits, and the futility of any treatment option. The patient was conscious, in full senses, and possessed the ability to comprehend what was discussed.
Although they were not in favor of any major procedures, the patient and family were not yet ready not to intervene either. They did not have a discussion about the option of doing nothing yet, and it was too early for us to initiate discussions of that sort, as we were meeting the patient for the first time. It was decided that we would not plan any major intervention but seek the least invasive approach, which entailed referring the patient to interventional radiology for embolization, if possible. It was stated to the patient and the family that this is not a curative step and may not be able to curb the bleeding. After a stable night, the next morning the patient was sent to interventional radiology for embolization. During the procedure, the patient went into cardiac arrest and passed away with no attempts to resuscitate due to her DNR status.
Following her demise, we regrouped again for discussions. The major difference this time was the patient was not a part of it. The family members were completely understanding and appreciated the frankness of our discussions prior to the procedure. We offered to help them as much as possible to arrange for transport back to their hometown and parted ways.
Two Costly Rides
This period of 24 hours can be viewed from many dimensions. The most obvious one is that here was a patient who took a ride from her hometown to our major academic center—alive. Within less than 24 hours, she will be returning to her hometown on a ride—dead. The patient was sick and had heroic interventions in the last 24 hours of life, which still did not alter any of the inevitable and expected outcomes.
There were many junctions along this critical 24-hour period that we could have stepped forward to change the course of events in the last day of this patient’s life. Maybe we should not have accepted the transfer. Maybe we should not have undertaken any procedures. Whatever we think we should have done but did not do ultimately led to her dying in a hospital rather than at home. It also led to two costly rides, with very high costs spanning two domains.
When we talk about the high cost of health care in America, the most obvious domain that the majority focuses on is the financial costs. It is well known that health-care expenditures in America are skewed and grossly distorted by the top tier of the sickest patients. The top 1%, 2%, 5%, 10%, and 20% of the sickest patients in the country consume 30%, 40%, 55%, 70%, and 85%, respectively, of all health-care dollars spent annually in America. This may not seem like a large figure until we realize that the health-care expenditures for America in 2015 amounted to $3.2 trillion. A total of 25%, 40%, 60% and 80% of more than $3 trillion provide a better and clearer perspective of where our health-care dollars are going.
Perhaps more important is also the fact that most of this expenditure is incurred in the last few weeks of life. So trying to reduce or avoid heroic but unnecessary interventions or treatments in the last days of someone’s life may be a prudent approach to reduce the financial costs associated with health-care delivery in America.
Underestimating the Burden of Human Costs
Although most focus on the financial costs, it is easy to forget—or grossly undervalue—the other domain of cost: the human cost associated with this type of care to the patient and their families. The human cost refers to the mental, emotional, and spiritual toll it imposes on a patient who remains alive and the family members if the patient dies.
One can only imagine the day before when the patient and the family were informed of the transfer to the major academic center for better care. The journey may have been laced with expectations that somehow things would get better with advanced care at a major academic center. The patient, and more important multiple family members, may have interrupted their daily schedules to travel to another city. And the ride may have also included discussions of what to do when they got back home with the patient—alive.
Now less than 24 hours later, the dynamic of the ride back home will be much different from what they may have anticipated or discussed. The family members will be riding home with one person less—a loved one who was alive yesterday but dead today. It is not that the outcome was totally unexpected, but what matters more is how it materialized within a 24-hour period.
It is very easy for one group of people to focus excessively on the financial costs, and it is very common for other groups not to have the time or capacity to acknowledge and thereby underestimate the burden of human costs. For us physicians, numb from the edicts to trim costs and burdened by the monstrous complexities of the evolving health-care environment, it is easy to focus more on financial costs and relegate the human cost associated with some of our interventions to the back seat.
Everything we do for our patients has a financial cost and a human cost. Although the financial cost is visible, the human cost is invisible to most of us. The financial cost is mostly quantifiable, but the human cost is so enormous it would be impossible to quantify. The financial cost is short-term, but the human cost is infinite. The financial cost is green, but the human cost is a kaleidoscope of colored emotions, constantly churning at an unyielding pace. The financial cost is accompanied with a persistent and loud din to trim it, but the human cost is silent, and we rarely make any systematic or deliberate attempt to curb it.
For those of us who have travelled back home from a hospital in an ambulance on a long ride with a dearly loved one who is no longer alive, we can only attest to the unbearable mental and emotional cost borne out on that deafeningly silent, painfully prolonged and gravely depressing ride. This should remove all doubt about which domain of cost is more worthy of our attention— every time and always the human one.