Ready or not, you will have a health crisis at some point in your life.
I was not prepared when my recent crisis put me in a hospital ER- twice in one week. The sudden onset of coughing blood sent me there. A blood clot of unknown origin was causing blood to leak into my left lung. The clot was successfully removed; great outcome.
At age 74, I was admitted to the hospital for the first time in my adult life (tonsils taken out when I was 5 years old). I had allowed myself to put off thinking about what I would need to be ready for when my crisis arrived.
What I learned is shared in the hope that others do not make these mistakes. Please pass on to others – especially those who may believe themselves to be immune and invincible.
The healthcare system of today is indifferent to the needs of individual patients.
Doctors: The first step is to carefully select a qualified personal physician(s) before a sudden need for care arises. Consider the physician’s university, degrees, and residency experience. Make sure they have some depth in the areas suggested by your personal and family history.
Often there will be a need to obtain a referral from the primary care physician in order to gain access to desired specialists. The referral process to obtain an appointment can take weeks. Then, more time will be needed to schedule tests and obtain results; a month or more may be required from the onset of distressing symptoms. If the condition does not allow that delay, the patient must speak up to see a specialist immediately.
Hospitals: Know which area hospital offers comprehensive services: ER, radiology, cardiology, cancer and pulmonary? Which of these services are most likely to be needed based upon family and personal history? Others who have used the services of that hospital can provide personal experience-based input. Were those people satisfied? Does the prospect of admission to that hospital seem okay? Small, community hospitals are likely to be understaffed in the ER and can lack a full range of the equipment needed to treat you. Consider going straight to the top hospital in the area; perhaps a Level 2 trauma hospital.
If doctors or hospitals don’t satisfy personal requirements, begin the process again even if that means a change in insurance coverage, primary care doctor, specialists and hospital.
Insurance: Understand what is covered by insurance. However, do not allow decisions concerning doctors and hospitals to be determined solely by insurance coverage. Prompt diagnosis and effective treatment come first and how that gets paid for comes later.
Create a file of personal medical history. Include lifestyle choices like diet, smoking and drug/alcohol use. Include past surgeries, annual physical exam reports, allergic reactions to drugs, blood lab panels and prescription/non-prescription drugs used.
DO NOT count on timely sharing of records between doctors and the hospital. Most annual exams are not thorough enough and lack vital information needed in a critical situation; include personal diabetes, heart and blood pressure history. Records of a simple lab blood panel are not enough.
Physician generated records are likely to be incomplete or even inaccurate. This is especially important when time is of the essence in an emergency situation. Review them.
Keep copies of all history and current personal medical records on hand at all times. Take the file along when going to the hospital or when taking trips out of town.
Do not delay seeking medical help. Time is of the essence when a problem is suspected. Recognize that there will be many treatment delays encountered already.
When Treatment Begins: As hospital treatment starts, be actively involved and the quarterback of the team. Remain courteous but appropriately demanding. When too little is happening or tests and procedures are taking too long, speak up.
As a patient, follow directions. But always seek information about those directions before they are implemented. Do not give permission for any procedures or medications that are not clearly understood and reasonable. Anticipate possible mistakes in care and challenge them before they happen. Always remember that hospitals are often in need of revenue and are also practicing “cover-their-ass” medicine.
In times of acute need, consider enlisting the help of a medically trained advocate. For example, a nurse practitioner can interpret information and help to professionally manage the interface with doctors and the hospital.
On the Way to Recovery: After treatment, if reports are not clearly understood, keep asking questions until coherent answers are obtained. Also, do not allow weeks to pass before getting those reports. In that time, a relapse or some new condition could occur. Add these current treatment reports to that personal file.
As soon as practical after being discharged, write an update about what occurred and what follow-up is yet to come.
Finally, one should also prepare for the end of life. As a recent article on hospice care stated, “An estimated 90 percent of Americans know they should be having conversations with loved ones and physicians about end-of-life care, but only 30 percent actually do.”
Be not afraid because fear gets in the way of treatment and healing.
Today’s healthcare system has lots of problems, but patients can make their way through those problems if willing to work to do so. Take care of yourself, because nobody else can or will!
If not yet convinced, here are three quick case examples. Note that in each case the patient was alert and questioning of what was being done to them. This is key.
K__, a pharmacist friend, issued this caution. “You have to manage your own care in the hospital. The one night I was in the hospital last year was an eye opener. They tried to give me an aspirin before leaving the hospital because that is their policy with everyone being discharged. I told them I was on the blood thinner Xarelto and aspirin was a definite ‘no’.”
C__ reports this. “After surgery and in my recovery bed, they applied the ubiquitous hanging bottle of fluids. Later in the day they wanted me to walk for exercise. Disconnected and walked about 100 yards through the corridors, felt fine. Back to bed, hooked up again with fluids. Next morning, asked to walk the 100 yards again, could hardly do it and could not get my breath after walking 100 feet. Back to bed with fluids connected again. I asked, “why so many fluids?” They said, “To build your blood pressure.” They had just taken my BP at 110 on the systolic. I told them I did not need the fluids as my systolic is normally 105. They said doctor’s orders. I said you can’t hook this up to me unless I talk to the doctor first. Soon the doctor arrived. Asked me how I was doing and I told him about getting out of breath on my walk. He ordered an X-ray. I had fluid on my lungs caused by the excess fluids they gave me. It was the next day before I was back to normal.”
S__ was told by her cardiologist that she “needed a heart transplant.” She sought a second opinion where the doctor asked, for the first time, if she had ever had a sleep test. She had not and one was arranged for her. That test showed a clear case of sleep apnea. Sarah had no need for a heart transplant. In fact, the transplant would have done nothing to alleviate the apnea problem. She started using a CPAP (Continuous Pressure Air Pump) and is now thirteen years into a happy and healthy retirement.