Typically I write when the mood strikes. Usually this attack is at the moment of a surreal event, such as a wedding or graduation on our palliative care unit, or an act of forgiveness that had been deemed impossible, or an incredibly good death (you know what I mean). There are times I write because of frustrations I encounter, such as when an incredible barrier arises in achieving a patient/family goal because of apparent lack of empathy in a "fellow" healthcare provider.
An 87-year-old man who had been independent but quickly became frail because of widely metastatic lung cancer was found unconscious by a neighbor. He was believed to have hit his head after falling down several stairs. He suffered a large intracranial hemorrhage and was intubated in the field for airway protection. I met this man for the first time in the neurosurgical ICU, and he was not responsive to any stimuli other than pain. His decision maker was his son, who was not aware of his father's diagnosis of cancer but was not surprised that his father had withheld this information. The issue of the day was that the neurologist was unwilling to offer any advice as to the outcome of this gentleman with stage IV lung cancer and large intracranial hemorrhage with a midline shift (ie, really bad bleed), who was dependent on a ventilator and artificial nutrition. The physician stated the patient might improve but declined to expand on the extent of this improvement. In the chart he wrote, "Prognosis is grim."
Of note, this gentleman had recently stopped palliative chemotherapy and radiation therapy for his progressive disease. His son, suddenly responsible for decision-making tasks, wanted to do the best for his dad and was appropriately overwhelmed by all this news. He could not and would not make decisions without more information. (Remember that this son was charged with making the decisions his father would make if he could have talked to us.) The solution to this problem seems apparent, but is often avoided. Truth telling-breaking bad news-is not the norm for many healthcare providers and is frequently avoided by many. The choices this son might make could add to his father's burdens and increase risks, and for what benefit? Fortunately, in this case the patient's oncologist stepped forward. The oncologist stated that this gentleman wanted only quality-of-life interventions, which his treatments were no longer providing. This intercession gave the gentleman a voice and provided insights to his son, which allowed the son to honor and follow his father's wishes. The oncologist also was able to share a true prognosis, and I was able to help in realistically providing guidance, all of which allowed the son to make appropriate, informed decisions. Had this physician not been involved, the patient eventually could have had a feeding tube, a tracheostomy, and a nursing home bed, which were not at all in keeping with the patient's goals. The events resulted in a better outcome for this man, but what of others?
I readily admit that some problems probably cannot be fixed (in my lifetime), but all the same, they never should be accepted. As a palliative care professional, I am amazed at how some of my healthcare colleagues continue to be blind to the big issues facing families and individuals with life-limiting disease and continue to offer false hope and unrealistic treatments that place immense emotional, physical, and financial burdens on these patient/family units (not to mention our healthcare system). To me, the solution is simple but continues to elude many or be neglected by others. Perhaps it is easier to follow the same path and avoid exploring the often-grim realities of a patient's declining or nonresponsive medical condition. Perhaps it requires accepting a failure of treatment or acknowledging one's own mortality.
The solution I propose is this: examine your own practice-and that of your peers-regularly. Where does the treatment take a patient? Is it a bridge to a better place? If the bridge keeps the patient on the same route, is it a reasonable route that improves the patient's quality of life? Does it offer a benefit, and if so, does the benefit offset the risks and burdens associated with the treatment? Do all persons involved understand the benefits, burdens, and risks? Is the bridge based on facts or assumptions? Are there other options? This bridge needs to be constructed by all of us together and lead to agreed-upon, realistic, and hopefully attainable goals. Do we know our patients' goals for today, this week, this month, or this year?
Clearly the path will have unexpected detours, bumps, and exits, but a well-conceived bridge can accommodate patients much better than a serpentine route on which the goals remain elusive or unknown. It is very hard to build a good bridge if you don't know where the road leads. Are the bridges that you and your team build well constructed and navigable? Learn your patients' destination, goals, and needs, and with them, build great bridges!