This is my husband, Charles Jones, at St. Joseph Hospital, in Tacoma, Washington, with severe congestive heart failure, kidney failure, and having a stroke.
I'm Jaynie Jones, http://emeraldprincessonline.blogspot.com/ and am happily married to an absolute gem of a gentleman, Charles Jones, who has complicated, disabling medical problems and was hospitalized at St. Joseph Hospital, in Tacoma, Washington, last week under his health insurance plan with Group Health Cooperative. He was treated for severe congestive heart failure, runaway high blood pressure, chest pain, kidney failure in "iminent" need of dialysis, and went on to suffer a stroke while hospitalized on Tuesday that was verified by CT Scan.
To the family's dismay, Charles was discharged from the hospital the day following his stroke even though he was still suffering symptoms. Jaynie was so distraught about the physicians' decision to send him home so soon after a stroke that she wrote the following letter to St. Joseph Hospital, Group Health Cooperative, all of the doctors, and the nursing staff to have this letter placed in his hospital record for future reference if any adverse events occurred subsequent to Charles' early release from the hospital.
When Charles called me at 3:30 in the afternoon and announced that he was being discharged and that I was to be there at 5:30 to bring him home, I was in a state of shocked disbelief. But in the time before I dashed over to the hospital, I wrote a letter of protest to have placed in his hospital record. With having had a stroke one, needing dialysis, and being sent home the following day with still some of the same symptoms unresolved, and having not been seen by a neurologist to even evaluate the sequelae of his stroke, this was deeply troubling to me. Charles was too weak and confused to put up a fight.
When I picked him up at the hospital to bring him home I handed the letter to the nurse and asked her to see to it that it was placed in his chart. Apparently someone read the letter late that evening, because a nurse called him at home to discuss it. Subsequently we have received several calls from Group Health. Hopefully this trend will continue and Charles will not suffer more ill effects from mismanged or marginally managed care.
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Let the record show that…Charles called to inform me this afternoon that he is being discharged to home from St. Joseph Hospital today. Discharged to home where we have one flight of 15 stairs and another flight of 8 stairs for him to climb up and down.
His discharge is premature and alarming to me as his wife and now caregiver that he is seemingly being discharged so soon when his runaway blood pressure (224/117 when first brought in on Saturday) has only been down in a more nearly normal range for less than a day.
Charles told me that Dr. Hwang had been in to see him today and informed him of the results of the CT scan of Charles’ head yesterday.
The CT scan was performed on an urgent basis due to the sudden onset of severe pain behind his right eye, coupled with diaphoresis, nausea and vomiting.The doctor reported the findings of the CT scan to Charles today stating that it revealed that he has had a CVA, but that it was his opinion that the radiologist had “over-read it.” How dismissive!
Charles has severe congestive heart failure, high-output failure, a fistula in his upper arm that measures 29.9-cm in greatest dimension, no surgical plan for revision of that to reduce the pressure or the heart failure that is now severe, end-stage renal disease despite having had a kidney transplant after four years of dialysis, but now the transplanted kidney is failing.Charles creatinine’ last week was 2.6, 3.8, 4.1, and now nearly 5. Dr. Hwang informed Charles that with the rapid elevation of his creatinine to nearly 5, he needs to go on dialysis “imminently.” This imminent need for dialysis has arisen out of the high-dose diuretics that have been used in recently days bringing his blood pressure down.
At Group Health Urgent Care, we cautioned Dr. John Vandegrift about how Charles’ transplant had gone into shock in 2000 when he had become dehydrated in Eastern Washington and on our return to Tacoma had presented to the ER at St. Joseph Hospital and had been loaded up with Lasix to pull the fluid off and that further compromised the kidney function, nearly destroying it. Dr. Vandegrift was in complete understanding of that and agreement and was judicious trying to get his blood pressure to a safe range.
After transfer from GHC Urgent Care by ambulance for admission to St. Joseph Hospital, Dr. Bonnie Sand met with both Charles and me in his room and we shared his history in detail with her. She was a thoughtful, completely engaged, intelligent physician who truly seemed to understand not only the history, but the complexity of what was happening at that point in time. She was well-informed and she inspired our confidence not only by how much time she spent with us, but by how carefully she listened to both of us and our concerns. She, too, recognized how precarious it could be, if Charles was diuresed too rapidly and the toll it could take on his renal allograft.Sadly since admission to St. Joseph Hospital, the rapid diuresis has once again brought the transplanted kidney to nearly complete failure with need for dialysis again being “imminent.”
We well recall what it is like to start back on dialysis. The cramping, weakness, light-headedness, the renal diet, all of these adjustments are ahead.When Charles first developed ESRD in the early ‘90s, he was admitted to the hospital and time was taken to get his dialysis going and get this smoothed out.
Now, here he has had a stroke one day and is being discharged from the hospital the next day with the same symptoms he had yesterday at the onset of the CVA, and he is still suffering from the head pain, nausea, et cetera, but he is being sent home in this condition and given Vicodin.
- What kind of logic is involved in this?
- And yet he needs to be on dialysis, but is being sent home?
- In this condition?
- Symptomatic?
- Having just had a CVA by CT?
He feels devalued as a human being and as if he is being kicked to the curb.In our experience (his and mine as his wife) every doctor always says (in various office settings and in the hospital) that they just don't know why African-Americans have poorer outcomes, dramatically shortened life expectancy and so on, but that research statistics show that it is true that from the standpoint of morbidity and mortality, African-Americans with an array of chronic diseases such as CHF, heart disease, diabetes, prostate cancer, other cancers, kidney disease, et cetera, do not do as well as whites, they will suffer more complications and they will die sooner, at an earlier age than Caucasians.
There is an answer to the ‘mystery’ and I can tell them that the answer is no mystery at all: It is because of the way the care is managed for African-Americans, not just relative to access to health care, but how such care is managed. That's what shortens their lives. The decision to discharge Charles to home from the hospital today is one such example.
How can the hospital or physicians involved in this decision send a patient who has had a documented CVA one day sent home to the rigors of stair-climbing and the need for dialysis when that has not been implemented?I called Group Health and made an appeal to four different people there that Charles’ needs better care, closer monitoring, and consistent follow-up because of the nature, severity, and complexity of his various medical and health care issues.
Were it not for their failure to follow-up and maintain continuity of his care, monitoring his blood pressure, et cetera, this could have been managed and prevented. Instead, he has not seen in clinic by a Group Health physician since last year.
There has been no scheduled follow-up.
He had no idea about how dangerously high his blood pressure had become, because Group Health just keeps renewing his medications and standing orders for lab work once a month.
The failure by Group Health to consistently and aggressively manage Charles’ extremely complicated medical conditions has resulted in where we are today with Charles, a 41-year-old African-American man who has had:
- one kidney transplant now in failure again,
- facing dialysis,
- having had a stroke,
- rampant, runaway blood pressure, and now he has been left
- feeling hopeless and depressed,
- like his life is futile and
- there just is no hope to get better.
- He has been told to limit salt and
- lose weight,
- lose weight,
- lose weight,
- but no one offers any direction for that, no suggestions about how to accomplish that and no recognition for the fact that he has dropped 35 pounds on his own over this past year.
- He has asked repeatedly about being considered for lap band bariatric surgery. His requests for lap band have been ignored or put down.
So why are African-Americans consistently the ones who come out on the short end of the stick relative to their health care and the outcomes they experience in contrast to the Caucasian-American population? It is decisions such as the one today at St. Joseph Hospital, to discharge someone to home the day after a stroke, when dialysis is “imminent” (but not started), and when astronomical blood pressure has been brought down for less than a day. Let the record show that the mystery is solved about the research statistics and why blacks have those bad outcomes. Charles and I hope that this will not be one of those times, but just as a patient would be required to sign a form stating that they were refusing recommended medical care and by their own volition going AMA (Against Medical Advice), this situation is essentially the flip side of that. Charles is coming home from the hospital against our better judgment. We both want to go on record that we oppose this plan. I am a blog writer for The News Tribune and I intend to blog about how Charles’ care has been managed. The nursing care at St. Joseph Hospital has been excellent. The nurses have been consistent and professional in every way. They are compassionate and good communicators.Should there be any adverse consequences of the physician’s decision to discharge Charles today, it is now documented that Charles and I both objected to it and informed you of our concerns this day for all of the foregoing reasons. Signed by: Jaynie Jones, Dated: March 14, 2007
