I dialed the number to return the call of the nursing home. The nurse who answered the phone was relieved to hear my voice on the other line: “Dr. Mass, thank God you called back! She has been pacing since she woke up, and she refuses to take her meds. We’ve kept her away from Catherine, so they don’t get into another fistfight. But we can’t handle her here anymore. We think we might have to send her to a psych unit, and we need you to come help.”
“I’ll be right there.” The Alzheimer’s patient we were discussing was in prime physical shape for a woman her age, but cognitively she was in the worst shape of anyone on her unit. Since the degenerative disease began laying claim to her brain, we had witnessed her personality change drastically, as the once-dedicated altruist became more and more prone to violent outbursts. The woman didn’t recognize any of her 5 kids who regularly visited, and though she hadn’t been informed of the recent death of her husband of more than 5 decades (she couldn’t process the information), I suspected that on some level she was aware, and her current behavior was the only way she could grieve.
And this hurt me to my core. Because she wasn’t just any patient, in fact, she wasn’t my patient at all. She was my mother.
By the time I arrived at the nursing home, the staff had contacted the only hospital in the area with an opening in their geriatric psych unit, which was over an hour away. As I helped the nurse calm down my mother, who was agitatedly pacing the room, I reflected on my mother’s life.
I need to stop to explain the pain that you have as a child in this situation. I had watched with bewilderment as my beloved, once the ultra-capable mom, who raised five kids and volunteered tirelessly for her community, became more and more crippled by the disease that had hit in her late 70s. As her only daughter, my mother and I had a sacred relationship, and she was once the closest woman on the planet to me. It is nearly impossible to describe the pain and anguish that I felt when I looked into those eyes that held so many happy memories for me, and saw only anger and fear.
It was up to the staff to help prepare my mother for the trip to the hospital, but I knew that even under the best circumstances going to a new place would be a mini-horror for her. Alzheimer’s patients crave stability and routine. We had been incredibly lucky to find a stable, calming environment in the nursing home where the staff truly cared for her, and I was hopeful that she would continue to experience the same level of quality care and compassion at the accepting hospital.
Following procedure, they first brought my mother to the ER of the accepting hospital, where she tried to beat up the large male nurse. She was quickly sedated by the ER staff who called the Geriatric-psych unit — but the unit refused to accept her, telling us, “It is our administrative policy to not take patients with any form of dementia.”
Medical breakdown #1:
Hospitals have layers of administrators that do little to improve patient care and a lot to bog down the system. Since 1970, the number of physician caregivers has increased by 50 percent. During that same time, the number of health care administrators has grown by over 3,000 percent. Of course, we need administrators in the system, but I think most would agree that a 3,000 percent increase seems excessive. Aside from the financial burden of paying all those additional salaries, there is little evidence to show that this dramatic increase in administrators is actually improving patient care. If anything, it seems that superfluous hospital administrations could potentially corrode patient care by creating unnecessary rules and arbitrary bylaws: case in point, the administrative policy to exclude dementia patients from the geriatric psych unit.
I knew that Mom needed her medication to be adjusted, so my siblings and I appealed to the hospital to admit her to a regular medical ward with a psych consult.
Medical breakdown #2:
Being a medical professional myself, I knew what to say to the hospital staff to ensure my mother would get appropriate treatment. Not all patients do. Had I not spoken up, she would have been sent back to her institution, likely gotten agitated again and required a second ambulance ride/ER visit, etc. That would have been wasteful of resources. Decisions like this end up costing us millions, but they continue to happen every single day.
The next day I arrived at the hospital with coffee and chocolates in hand, knowing that Mom would get better care if her nurses and doctors were plied with caffeine. When I got to her room, my mother was wearing only a diaper and restraints. Her breakfast tray sat untouched. I left the room, sat in the hall and cried.
Once I composed myself, I went to the nurses station where I found two medical students chatting between text messages.
“My Mom is in restraints. Can you help me move her so I can feed her breakfast?”
The students barely glanced up, stated ‘it’s not our job’ and went back to their phones.
Medical breakdown #3:
Effective health care is almost always the result of a team working together to help a patient. Our current health system breeds the mentality that one can never, ever deviate from their individual job description even if it is in the best interest of the patient. Perhaps these two students would have incurred reprimanding for stepping outside the scope of their job, but at the very least they could have found someone to help. Following the rulebook has become more important than helping the patient.
Luckily for me, a nurse overheard our conversation and came to help move my mother. After helping Mom finish her breakfast, I waited to speak with her physician. My mother had only ever been treated by people that knew and cared about her, so I wanted to tell the doctor about her in the hopes that they would see her as a person instead of just a patient.
Medical breakdown #4:
The best medical care, particularly in primary care, happens when doctors know their patients, because they truly care for them. This happens naturally when patients are able to see the same physicians and doctors have time to spend with those patients. Our current system has handicapped the patient-physician relationship, overwhelming physicians with far too many patients each day and reducing the amount of time spent with each one. Sadly, the doctors at this hospital were more interested in punching their time clock than they were in building relationships with patients, but given their highly regulated work environment, I can hardly blame them.
I spoke with the doctors about my mother’s medication adjustment and requested an x-ray of her hand, which was bruised and swollen (battle scar from her fight with the ER nurse). It took three days for them to get the x-ray. I was told that this delay was due to a problem with the computer order reaching radiology.
Medical breakdown #5:
The electronic health record (EHR) is a subject that could be written about in great length (in fact, it has been. Often.). In 2009 the federal government mandated all hospitals and offices to become computer compliant — but as anyone who has ever used a computer can tell you, there are always glitches. How would you feel if you or a loved one missed a dose of important medication because of a glitch? For my mother, at least, this was not a fatal computer glitch. But even if computers operated perfectly, their omnipresence in patient care settings has further depersonalized medicine, as nurses and doctors no longer interact with the patient, but sit in front of a screen for hours, clicking on boxes.
Three days later the hospital was ready to release my Mom, and my brother and I arrived at the hospital that Saturday to find our mother unresponsive. It didn’t require a medical professional to guess why: dry lips, dry tongue, and skin tenting — she was clearly suffering from the effects of dehydration. I immediately went to the nurse’s station and demanded to know how much fluid Mom had received in the past three days. The nurse wrestled with the computer for forty minutes to get the information (aren’t EHRs great?). After another forty minutes waiting for the nurse to get the printer working, I insisted on seeing the computer itself.
Thirteen ounces. My mother had gotten thirteen ounces of fluid in three days. That amounts to a can of soda.
Medical breakdown #6:
Where do I even begin — this was not a single mistake, but shift after shift of neglect from various staff members. Where was the care in this health care system? How could a prominent hospital forget to do the most basic thing; i.e., provide water for my Mom?
I told the nurse to send the doctor and prepare paperwork for an against-medical-advice (AMA) discharge because I would be taking my Mom to a hospital we could trust, and from there back to the nursing home once we had her hydrated. The supervising physician and nurse were shocked and apologetic when I explained the situation, and offered to get an ambulance to transport my mom. My brother and I declined, and carried our mother tenderly into the backseat of our own car.
Medical breakdown #7 avoided:
For all intents and purposes, my mother my Mom was a terminal patient. We would be wasting a valuable and expensive resource by having a potentially lifesaving EMT crew spend three hours transporting her. So much time and money is wasted in medicine in instances where common sense should rule.
We drove our mother back to her local ER, at the hospital where she had been going for 35 years and where she was well-known. As I told the staff there of our experience at the previous hospital, they looked as shocked as I felt. They cared for her kindly and respectfully, and we got her tucked into the memory unit that had become home. It took about a week before she was awake, and a month before she regained what was about 75 percent of her former strength.
Two days after we took our mother back to the nursing home I received an apologetic call from the hospital administrators, who I could tell were squirming with fear of a possible lawsuit even over the phone. I said very little. I had no desire to feed the parasitic beast of malpractice litigation. The lawsuit itself would have cost tens of thousands of dollars, and even a cash-filled victory would have brought little comfort or sense of justice to my family. Personally, we cannot comprehend equating money with quality of life.
But I couldn’t do nothing. I contacted the Pennsylvania Department of Health and the Joint Commission and launched investigations and inspections upon the hospital, giving them detailed accounts of what had happened. After several months, we were again contacted by the hospital’s administrators and assured that they had implemented changes to prevent such problems to future patients. It was a small comfort that we enacted some changes.
That comfort was short-lived. About a year later I got a call from a friend whose Alzheimer’s-ridden mother had been hospitalized with pneumonia. She was concerned about her mother’s level of care, who had started developing bed sores and whose condition seemed to be declining every day. She was dismayed watching her mother deteriorate under the care of the hospital staff, who were reluctant to give any clear answers and gave her trouble when she tried to reach the physicians. I gave my friend some suggestions and asked what hospital her mother was at. Can you guess what her answer was? It was the same hospital where my mother had been so mistreated, the same one where two government agencies had investigated, the same hospital that had supposedly changed their ways.
This is only one story of the sad state of today’s health system. Mom’s substandard level of care happened in a setting of good resources, at a highly regarded institution, with a physician daughter advocating on her behalf. Imagine what happens to the advocate-less indigent in poorly funded hospitals. If we do not change our current trajectory to fix our health care system, scenarios like my mother’s will become commonplace, the quality of care will implode, and the financial burden on our country will wreck us. I fear for the future.
Last April, my mother suffered a bad fall and fractured her vertebrae and ribs. She developed pneumonia and cried piteously in pain. Our family elected to place her on hospice at the nursing home, with comfort meds only. My brothers and I sat at her bedside while all the nurses who had treated her not just as a patient, but cared for her as a person, came in and wept over her impending death. It made us feel grateful beyond imagination to witness firsthand the personal loving care she had been receiving. All of our collective hands cared for her in her final days, and I was at her side for her final breath, just as she was with me for my first.
Marion Mass is a pediatrician. This article originally appeared in Medelita.
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