On New Year's Eve, my sisters and I made the difficult decision to have our mother removed from the ventilator. She had been stricken with pneumonia the Monday before Thanksgiving and spent two weeks in the ICU. She survived and awoke from her coma - miraculous, given that she was eighty-five years old and weighed ninety pounds, and had an enlarged and weak heart, renal enzyme levels that were through the roof, fluid-filled lungs and sepsis. The ICU physician tempered my exuberance, however, by cautioning me that the best predictor of surviving pneumonia was age.
My mother was transferred to an acute-care hospital that specializes in patients with vents. She was seen by a parade of respiratory therapists (RTs), vocational nurses, CNAs, registered nurses and the occasional physician. She seemed to be progressing with getting weaned off of the vent, as her hours of T-misting went as long as 10-12 hours a day. She played opossum for the physical, occupational and speech therapists, but would greet all the Filipino nurses and other staff with smiles and waves. By all appearances, she was getting better. We had visions of her moving to a skilled nursing facility, of me driving up every weekend to visit with her until she was ready to come home to my middle sister's home, my mother's home for the last 15 years.
Then, nearly three weeks later, we learned she had an infection. My two sisters and I took five-plus hour shifts every day. My middle sister briefed me before my morning shift that a nurse had mentioned our mother had a renal infection. When I resumed my shift, I asked the nurse how my mother's kidney infection was doing. Were the antibiotics working? The nurse told me that she didn't know what the antibiotics were for; the physician had not indicated it in her electronic record. Another nurse told me it wasn't a kidney infection but a lung infection, but she would check to make sure. She later returned and confirmed that it was a lung infection. A few days later I again asked how the infection was, only to be told by various people checking on my mother that they didn't know.
On Christmas Eve and again on Christmas afternoon, my mother's heart rate and oxygen level dropped and we thought we were going to lose her. Only then did we discover that the hospital did not have her healthcare directive. She was on full code. This hospital also only acted on two codes - the other being do not resuscitate. The ICU had sent over her file but had not included her healthcare directive; when my sister informed the person doing the intake that my mother had a healthcare directive, my sister assumed that this acute-care hospital had it on file.
Three days after Christmas, my mother began bleeding in her lower GI area. When my oldest sister was on her shift, an RT came in, checked her numbers and proclaimed her fit to have the tracheostomy tube removed within days. My sister wondered if it mattered that our mother was experiencing complications elsewhere in her body. It was three days before the GI specialist called in, and since I was in the room with my mother at the time, he asked me questions. The physician on call who examined the X-ray of my mother's abdomen wrote notes about an unidentified primary cancer. The GI specialist mentioned this, which was news to me, and said we would need my mother's last colonoscopy result, which would determine whether or not he would have to conduct a colonoscopy on her - despite all the other issues she was dealing with at the time, her growing discomfort with pain being one of our major concerns. At this point, I began to wonder if he knew what her overall condition was, or was he merely looking at his area of specialty?
A psychiatrist came by and interviewed my mother through me (she was unable to talk). After the meeting, he advised me that once my mother worked through her "medical issues," he recommended that she see a psychiatrist and a psychotherapist to deal with her mental and emotional states, and ordered her on Prozac. When the lung specialist came in, I asked him what the hope was of my mother getting off the vent given her two setbacks. He responded, "There's always hope," in a tone that struck me as deceptive and contrary to the sunny prognosis of the RT just a few days earlier.
We finally requested a meeting with the physician on call to discuss ending our mother's pain, which was not being alleviated at all by the increased meds he had ordered the day before. He pulled out a thick binder on my mother, and despite numerous tabs in the binder, he had difficulty finding her healthcare directive, which very clearly stated that my mother did not want to be in continuous pain, did not want to be permanently hooked up to machines and did not want expensive treatment even if it meant the possibility of survival but at the cost of quality of life.
He then stunned us with the big picture: Her overall prognosis was “very poor” and her chance of getting out of an acute-care setting was slim to none. Furthermore, she was suffering from lytic lesions on her bones, which the physician let us know are "very painful." The lesions were secondary to an unknown primary cancer in our mother's body. I had informed everyone who came into the room the previous week that my mother was in great pain - to the point where I had to constantly reposition her body after she writhed to the sides of the hospital bed, her arms and legs shooting up involuntarily - only to be told that we gave her pain medication an hour ago, it's not time for her timed pain medication, and finally that we have to balance pain management and overmedication, which would prevent her from breathing on her own. The irony is that this physician was very disturbed by her state and agreed with me that she "could not move forward" being in so much pain. By that time, however, as I mentioned earlier, nothing was relieving her pain.
The physician admitted that we were basically "chasing numbers" - when her heart rate and oxygen levels dropped, they put her back on the vent; when her potassium level dropped, they replaced the potassium. We had never been sat down - either when she was admitted or during the four weeks she was there - to be given the big picture. Each specialist focused on his or her area of my mother's body.
The tragedy is that my family's scenario is not uncommon: the same event happened to my neighbor across the street with her elderly father two years ago. As I share my frustration regarding my mother's final weeks, colleagues and friends share similar stories.
In the industry's big push to adopt electronic health records and other health IT, and to connect these systems so our healthcare providers can have the complete patient information to make informed decisions, we need to ask ourselves this: How can we share meaningful information across the healthcare industry if we have an information breakdown within the four walls of a healthcare organization - among clinicians and staff, between clinicians and family members, and between clinicians and staff and the patient?
On the Side of Advocacy
While I thought throughout the four-plus weeks my mother was in the acute-care hospital that I was being her advocate - asking questions of the respiratory therapists, physical and occupational therapists, speech therapists, nurses, physicians and specialists - I was asking the wrong questions. When I arrived in town to help my sisters watch over our mother, I should have been a true advocate. I should have requested a meeting with one of the physicians and asked the bigger questions: Do you have her healthcare directive? No, well, here it is and let the staff know about the recent changes, so that they are not "chasing numbers" or appeasing family members whom they think want to keep their loved ones alive at all costs. What is her overall prognosis?
Virginia and other states are in the process of putting healthcare directives in a registry and at some point down the road connecting them to state health information exchanges. When families are dealing with medical emergencies, they won't have to worry about whether or not their loved ones' healthcare directives have followed them from one healthcare facility to the next. I'm not sure where California is in terms of implementing a healthcare directive registry, but I hope it's on some policymaker's list.
Lastly, I would appeal to the acute-care facilities that deal with patients like my mother. Before my mother's morphine drip commenced, the nurse assigned to my mother told my oldest sister that several vents were going to be turned off that night. These acute-care facilities obviously deal with these situations on a regular basis. I wondered: How many of those families did not get the complete medical narrative of their loved ones before the decision to take them off the vent was made? Can't these acute-care facilities be the obvious agents of change and retool their processes so communication is open and clear across all stakeholders, everyone has the vital information before them, no gaps in care exist and no futile procedures are done?
It would save a lot of heartache of a different kind at a time when families are already dealing with the heartache of having to lose a loved one.
