This guest blog is an eloquent heart-cry from a good friend and devoted patient advocate.
My father is a resident in an assisted living facility – we believe one of the best in the area. But as his advocate, I’m constantly frustrated by the paperwork, the red tape, the time-consuming mumbo jumbo that I must weed through to ensure that his needs are met.
A case in point is getting his narcotic prescriptions each month. I am willing to be inconvenienced, as I understand these drugs are abused and some barriers need to be in place. However, if I must jump through hoops, the hoops need to be consistent, and everyone needs to know what they are.
Pain Prescription Advocate
Dad’s providers told me that I must physically obtain the prescription from his specialist. I must drive into Grand Rapids to pick them up: they cannot be mailed. I was happy to work this into my schedule, and it worked well for one month.
Upon arriving the following month, I was told the prescriptions were not there, they had mailed them. Where had they mailed them, to the pharmacy? Which one? To the assisted living facility? To Dad’s home address? To me? No one seemed to know.
The following month Dad’s primary care physician (PCP) was to take over the narcotic prescriptions, as the PCP has more contact with him and could better assess his needs and potentially adjust medications. I was willing to adapt.
I dialed the PCP office several days in advance of needing the prescription. After an extended wait on the phone, I decided it would be quicker to make the 15-minute drive to the office and speak face to face. Staff said to come in the following week and the prescriptions would be ready.
Receptionist challenges Advocate about Rx
Upon my arrival, the receptionist questioned two drugs: Oxycontin and oxycodone. She wondered why there were two prescriptions for what she deemed the same drug, one a brand name and one a generic. Although I’m not a physician or a nurse, I tried to inform her that the two drugs work differently and were prescribed to work together. At last, I had my paperwork.
The next month, staff asked me to confirm the dosages of the drugs. I responded that I was unable to do that. I told them that the doctor had prescribed the drug, and their office had the medical chart, not I. They suggested I call the assisted living facility to find out and get back to them. I refused. They chided me on being a poor patient advocate. The situation deteriorated from there.
Watch: Get Smart with Pharma
Primary Care lacks patient focus
Dad recently had a PCP visit to review his medications. All good – but we must come back for a separate PA visit for a physical.
Ugh! As an advocate, I want to know why this cannot be done by the doctor in the same visit. If the physical indicates a medication change, why did we come in the first time?
Advocating: (1) Wheelchair Rx
A week after the medication check, Dad fell and fractured a bone. The ER instructed him to remain non-weightbearing for 8-12 weeks, so we needed a wheelchair prescription from the PCP. Sounds simple! I went to the office, frustrated again by a lengthy phone hold time. The entire Friday came and went and I heard nothing. Apparently we would be without for the weekend.
Monday morning, I entered the office again and politely asked for an update on obtaining the wheelchair prescription. The reception gladly offered to look into it and get back with me. No, I will wait right here. She began pecking at her keyboard to check the status. After several minutes she found record that I had indeed called, but she was not very familiar with this aspect of the computer system – perhaps an MA could help. Meanwhile, another receptionist had joined the first in glaring at the computer screen. The MA seemed to know a little bit more, but had no answer for me.
At last, a fourth employee produced the prescription, locating it under some other papers on the doctor’s desk. Would I like her to fax it to CareLinc? By no means! I took the paper.
At this point, they seemed happy to offer the narcotic prescription, but could I verify the dose? Argh! Soon we had multiple people scrolling through the computer. One declared the doctor had discontinued the medication. Another disagreed.
Around and around we go with these pain medications.
Advocating in Assisted Living
Perhaps the most discouraging thing for anyone visiting an assisted living facility is the lack of staff attention to the residents. On behalf of staff, it is apparent that on most occasions, they simply do not have time to do more than answer the call light, quickly fulfill the need, and speed out again. Medication distribution is a quick 15-second visit. They are out the door before the pills are swallowed. On occasion a pill may fall to the floor and go unnoticed. Is it the elderly resident’s responsibility to realize that and then somehow locate it and swallow it?
I’m convinced that much of the fault lies in the fact that there is just so much red tape connected with every action.
I commonly see aides fulfilling their paperwork duties while the call lights ring and the residents wait. Requests for help to the restroom can take 15 minutes or longer. It seems that the center is always short staffed, always hiring, always training.
Perhaps the next time an aide comes in, we could ask her about an issue. No, too often there is no time. No time for them to address advocate concerns, answer questions, or pause for cheerful conversation. And no time to provide ice therapy for Dad’s fracture.
Maddening it was to be told by my dad’s dentist that I must inform the center that they need to be more vigilant in his oral hygiene.
Oh! how the health care system has changed in recent years!
As a young girl in the 1960s, I can well remember our family’s yearly trip to Grand Rapids to visit the dentist. Dr. Steele greeted us at the door, checked and filled our cavities, escorted us out, and charged less than $20 for all six of us. When the phone rang, he answered it.
Of course, many of the aides today are top notch. My wish for them is that they could spend more working hours in the work they chose and in which they are trained.
We desperately need assisted living and PCP offices to provide hands-on patient care and directly meet people’s needs. This should be their whole focus – not arbitrary system rules.
Intrusive federal and state health policies are to blame for these patient barriers.
I describe some of them here.
This issue deserves your attention because – much as I wish otherwise – regulatory attitudes and loss of trust my friend described in 2015 have not changed.
