The following is one in an ongoing series of columns entitled Patient Advocacy in Hospitals by Jari Holland Buck .
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"Shift Happens" has been posted on the wall of my office for many years. As a change management consultant, I placed it there as a reminder that the work I do within organizations and with executives occurs, oftentimes, at a snail's pace. Frequently, I have to recall that this is NOT about crossing things off my "To Do" list, as so many corporate planners would have me believe…
Never in a million years would I have believed that I would play a role in "Shift Happening" within the healthcare system. But then, paradigm pioneers, as the business guru, Joel Barker, would call us, rarely set out to "change the world." We simply "see" things happening and try to understand what, if anything, we can do to address them.
That is exactly what I set out to do when my husband, Bill, got sick. He went from "vertical" to "horizontal" in less than 12 hours, spending 6-1/2 months in four different hospitals, 5 of which were on full life support. My story in NOT about what happened to him but rather, about the "Shift that Happened" to me while caring for him inside today's healthcare system.
Early in his disease, I decided to stay at the hospital, 24/7. He was so catastrophically ill that we faced daily, sometimes hourly, crises as every organ in his body failed, some more than once. In order to understand what was happening, I watched everything, asked lots of questions, did research and took lots of notes. All of these actions helped, but none more so than my 24/7 presence. I began to understand the different types of things that occurred during
I observed and noted when family members of other patients were present and when they went home. I also watched the patients of those family members die in their absence on more than one occasion. The patient families around Bill and I were present during "typical business hours," early weeknights and for short amounts of time during the day on weekends. My experience bore out the following:
- the days vs. the nights
- the weekdays vs. the weekends
- non-holidays vs. holidays
- routine shifts vs. shift changes.
And, in the case of the residents, they were "learning" on my husband;
- the most "seasoned" nurses typically worked during "typical business hours," 8:00 a.m. - 5:00 p.m. These in demand nurses are usually the ones with the most tenure and choose their schedules. Seasoned, however doesn't necessarily mean "the best;"
- less "seasoned" nurses worked on nights, weekends and holidays;
- staffing shortages frequently occurred on nights, weekends and holidays and errors went up when there were "temps" in the nurse positions. They didn't always know the hospital protocols or who to go to for help;
- fewer nurses were available on nights, weekends and holidays;
- fewer care partners (nurse's aids) were present on nights, weekends and holidays;
- fewer doctors were in the hospital on nights, weekends and holidays;
- in private hospitals, the doctors that were present on nights, weekends and holidays were frequently the partners of the treating physicians (often, not my choice in care providers), acting in a "substitute"
capacity. In public hospitals, the doctors that were present on nights, weekends and holidays were a resident. According to Wikipedia, residency refers to a ""a stage of postgraduate medical training... filled by a resident physician who has received a medical degree or diploma… and is composed almost entirely of the care of hospitalized or clinic patients, mostly with direct supervision by more senior physicians… during which the physician is trained in a sub-specialty." [http://en.wikipedia.org/wiki/Residency_(medicine)]. Neither set of doctors knew Bill's case nor were they willing to make treatment interventions. They were most likely to stabilize or to put stuff off until their partner or supervising physician could come in.
During nights, weekends and holidays, I observed and/or involved myself actively in the following events.
- medication problems more often happened on nights, weekends and holidays; and
- medication problems went unresolved more frequently on nights, weekends and holidays.
Do you think there is any corollary to these observations and experiences and the absolute fact that hospitals recommend that we, the family members of their patients, go home, get some sleep and care for ourselves during nights, weekends and holidays? I DO and so should you!
- Bill's primary IV line was pulled out by a rotating bed and he was without three medications that were keeping him alive for 4 hours while I fought with the "head" nurse to bring in the specialist needed to reinsert the line.
- Bill was denied kidney dialysis due to an "equipment shortage."
- the pharmacy, on three separate occasions, did not have his prescribed medication and the Pharmacy Manager had to wait until morning to "order" it from someplace else.
- Bill experienced a 16:1 patient to nurse ratio for 12 hours, 2 of which the nurse was off the floor due to a patient code.
- Nurses who were not accustomed to caring for Bill and his complex medical situation tried to give him his medications by mouth three times while he was NPO = nothing by mouth." Since he had pancreatitis, the only way the healthcare community knows to treat this disease is by bypassing the pancreas and allowing the organ to heal on its own. Had the nurses succeeded in giving him anything by mouth, his slowly healing pancreas would have been enlisted in digestion before it was ready and it may have killed him.
- Family members who were distracted or upset and not attentive to their surroundings were "mugged" and robbed entering or leaving the hospital.
- Personal items were stolen from patient's rooms.
- Bill was denied the rotating bed that helped him avoid bedsores.
- Medication had to be couriered from another local hospital during an emergency because of a shortage in the hospital where Bill was a patient.
- Three out of Bill's four codes occurred at night and were handled by (fortunately, very competent but "luck of the draw") agency nurses who were not employees of the hospital.
- A nurse "forgot" to give Bill his routine pain medication because she was not accustomed to the method in which it was being delivered.
- the partner of the treating cardiologist during his first visit with Bill told me that he had been "misdiagnosed" and preceded to offer a "new" and terrifyingly dire diagnosis that was wrong and unsupported by the facts.
- a monitor alarm was mis-set, allowing Bill to slip into sinus ventricular tachycardia (SVT) without the nurse being alerted. I had to notify her.
- a 10-minute delay in response to an ICU alarm during a shift change that required me to stand outside Bill's room, gowned, gloved and masked and holler at the top of my lungs for assistance.
What can we do to change the healthcare system today? As family members and advocates, we represent a huge force with whom the healthcare system must eventually reckon. However, will that happen soon enough for you and your loved ones? The choice I made was a simple one - care for my husband. When the surgeon to whom we attribute his survival visited Bill, Bill thanked this skilled physician for saving his life. What was this doctor's response? "I didn't save your life. Your wife did."
How did I react to this information? My 24/7 commitment grew stronger every day until I finally brought Bill home. Yes, he survived against staggering odds. Yes, without the skilled and dedicated healthcare workers' expertise and caring, Bill would never have made it. But, if I had to choose what caused Bill to survive at an emotional level, I would have to pick the 24/7 presence of his family. And that presence during nights, weekends, holidays and shift changes can and did cause the healthcare system to "function" differently. Why? Because I required that they treat me as part of the healthcare team.
Changing healthcare as a whole is simply too overwhelming for most of us to even consider. However, if, one-by-one, we make our presence known and do not capitulate to the apparently well meaning requests to "go home," we are a formidable force on behalf of our loved ones and cannot be ignored. Clarissa Pinkola Estes says it best.
"In any dark time, there is a tendency to veer toward fainting over how much is wrong or unmended in the world. Do not focus on that. There is a tendency too to fall into being weakened by persevering on what is outside your reach, by what cannot yet be. Do not focus there. That is spending the wind without raising the sails. We are needed, that is all we can know. And though we meet resistance, we more so will meet great souls who will hail us, love us and guide us, and we will know them when they appear. Didn't you say you were a believer? Didn't you say you pledged to listen to a voice greater? Didn't you ask for grace? Don't you remember that to be in grace means to submit to the voice greater?"
As a change management consultant, I know "I am responsible for the input. I am not responsible for the outcome." As a family member, I know I only want what is best for my family. I ensure my input is included and that my hospitalized family member receives the best possible treatment with the 24/7 presence of someone who cares, even in the face of resistance by the healthcare community. Nights, weekends, holidays and shift changes are risky times for hospital patients. Doesn't it make sense that we stand guard against that risk?
Our journey and the journey of healthcare in the United States runs parallel and we are the agents of change, but not unless we step into our power. That is always how Shift Happens!
JARI HOLLAND BUCK is a business consultant, medical layperson, Reiki Master and Shamanic Practitioner who spent 6-1/2 months in four hospitals with her critically ill husband. During 5+ months on life support, every organ in his body failed, yet he survived. Learn more about how to be an advocate in her book, Hospital Stay Handbook: A Guide to Becoming A Patient Advocate for Your Loved Ones, winner of the 2006 Parent to Parent Adding Wisdom Award and finalist in the Fresh Voices of 2006 Health category.
About The Author
Jari Holland Buck is a business consultant, medical layperson, Reiki Master and Shamanic Practitioner who spent 6-1/2 months in four hospitals with her critically ill husband. During 5+ months on life support, every organ in his body failed, yet he survived. Learn more about how to be an advocate in her book, Hospital Stay Handbook: A Guide to Becoming A Patient Advocate for Your......more