1-Questions for My Dad July 2016

The following is a series of texts I sent my dad in July of 2016. I received no reply, so I added titles to each and sent them as a single letter by US Mail in August. Again, there was no reply. Finally, when visiting him in December, I asked him if we could discuss the questions. He said he no longer had the letter. I offered to send him another copy if he was willing to meet again to talk about them. He agreed. I asked if I could bring someone with. He agreed. Later that month we met at his home along with my small group leader from our church. My Dad talked for most of the two hours without answering one of my six questions or challenging any of the details I had recounted in the texts.

Lyons Insurance Co.  Dear Dad, I have a question for you related to your provision of care for mom.  When mom first got to Lexington on Monday, you told the physical therapist that he should be aggressive because she would be leaving at the end of the week. As it turned out that wasn't possible because Martha was not available.  Two weeks after admission to Lexington, due to the residual effects of the strong pain meds, mom was still sleeping allot, eating very little and doing very little in therapy. Regardless, you insisted upon bringing mom home. It seems to me that any change in care for an acute care patient should be related to the patient's condition. You were the only person pushing to change the program of care for mom, and it was not related to her condition. The surgeon had prescribed 24 hour nursing care. Furthermore, Lexington presumed that 24 hour nursing care was going to be provided at home based on what you had told the lady responsible for transitioning; that your son had referred you to a home health care company (which I did, but it was not for in-home nursing) The truth is, you did not engage that or any other company. Also because Lexington had required a visit to the primary Dr. to be scheduled before release, they presumed that mom's Dr. would take over the oversight of mom's case. They didn't imagine that you would neither keep the appointment nor consult with him till after mom's death.  When you chose not to have health insurance, you assumed the total financial responsibility for mom's  medical and health care needs. If you did have insurance, you would not consider it acceptable for your company to provide only two weeks of coverage for doctor and nursing care after a major surgery where there was an expected 3 months of rehabilitation.  So, why should it be considered acceptable coverage when you are the one responsible? loving you enough to confront, Tom No Doctor, No Nurse  Dear Dad,  I have a question for you. But here's a bit of background first... On Monday 3/23/15 mom came home from Lexington. On that Thursday I called mom's Dr. to see if you had communicated anything to him about mom's condition. He said that mom was scheduled for an appointment the next day. (This appointment, I found out later, was made by Martha as a requirement in the discharge proceedings at Lexington.) Crevier, after hearing more details of mom's condition, said that she shouldn't come to his office, but with great concern gave instructions to have a nurse do a blood draw and get the following information to him the next morning; BP, INR, CBC & HR.  I called you immediately and relayed this message from Dr. Crevier. You said there would be a nurse there Friday afternoon. (It should be noted at this point, that you said you knew nothing of the doctor appointment that was scheduled and that even Martha had forgotten it and further there had been no direct contact made with him or his office.) The next day I stopped in at around 1pm and did find a nurse there. I asked her if she was going to do a blood draw and get the requested info to the Dr., referring to the note that you had left at mom's bedside that had the 4 vitals listed just as I had dictated them to you.  She said she was not equipped to do that. It was  apparent too, that you had not asked her to do anything of that sort. Considering you had said there would be better care for mom at home, why did you not pursue getting a nurse that could do what was needed to give mom's Dr. the vital information that he requested? Loving you enough to confront, Tom

V. C. Lyons M. D.  RN CNA Dear Dad,  When you brought mom home without consulting with the Dr., you became the doctor. When you took on the responsibility of administering medications, monitoring the INR, checking blood pressure and pulse and determining what non-prescription drugs are needed, if any, you became the nurse. Albeit you had Martha's help and some volunteers from church (the first week), you still had sole responsibility for mom's care 73% of the time and primary responsibility 100% of the time. And it must be noted, you took on this responsibility without altering your usual work schedule. This meant that mom's doctor, nurse and primary care giver was an 87 yr old man, with no training, experience or certification, who was doing this as a part-time job after working all day and still needing to eat, sleep and care for his own personal needs.  Secondarily, when mom was at Lexington, in addition to the team of professionals, there was always a loving, attentive, family member at her bedside. This was not the case when she was brought home because you were attempting to fill the role of no less than five people.  Since you told me that money was not a problem and there was money for whatever care mom needed, I can not think of any good reason for  you to exclude all those better qualified to care for mom while she was critically ill, bedridden, incontinent, weak and vulnerable.  In retrospect, do you think this was the right thing to do? loving you enough to confront, Tom Delayed INR  Dear Dad,  I have another question for you.  At Lexington, a blood draw was done everyday to check, among other things, mom's INR, which of course shows the ability of the blood to clot. If mom was to be coming home to "better care" it surely had to include a means of monitoring her INR. Yet no arrangement for such had been made. This was Dr. Crevier's #1 concern when he was informed of mom's situation.  You could have hired a nurse to come in and get a reading, or, as I was informed by the nurse who was there the first Friday, a device for giving an INR reading could be ordered on-line. But when you heard that Mrs. Jacob could acquire the device for no charge you pursued no other option. This dangerously added days to an already over due, first, at home, reading. 

As I understand it, correct me if I'm wrong, Mr. & Mrs. Jacob came on Tuesday, March 31st and she took the INR reading, now 8 days after mom left Lexington. Dr. Crevier told me that the reading was 4X the acceptable level of 2.5  to 3.0. As far as I know, the only action that was taken when this emergency INR was discovered, was to put a hold on any Coumadin. To my knowledge, a doctor was not consulted and vitamin K or plasma were not given that could have possibly corrected the problem. 

Why did you not contact the doctor when the "off the charts" INR was discovered? loving you enough to confront, Tom What Stroke? Dear Dad, Have you told anyone, other than me that the cause of death was a stroke?

Since mom had been on Coumadin for decades, you must have been aware of the risks that were associated with both her artificial heart valve and this accompanying drug, particularly, STROKE!!! If her INR was too low, there was a risk of an ischemic (clotting) stroke, if too high the risk was a hemorrhagic (bleeding) stroke. So, the combination of a sky high INR on Tuesday and mom's inability to speak or swallow on Wednesday, should have lead you to believe she had suffered a stroke.  Now, I recall you had made a point to tell me more than once that there was a DNR order for mom. And I have no issue with holding off on the paddles if the heart stops. But, surely a DNR doesn't preclude getting an accurate diagnosis and possible treatments from a doctor when there is a significant change in the condition of a patient. This was not done when mom showed signs of a stroke.  Also, it seems Martha was not told that mom may have had a stroke, because she said that mom had "taken a turn for the worse." Then later after mom's death, when I told her that the cause of death was a stroke, she said, no, it was "natural causes." In fact, no one seemed to know Dr. Crevier had written as the cause of death on the death certificate "cerebral vascular accident" (the medical term for stroke). Seemingly, stroke as the cause of death has been, at best, undisclosed. There are different ways to deceive; lie, tell half truths or sometimes just say nothing. I'm not sure what happened here.  loving you enough to confront, Tom No Hospice Dear Dad, Let's look at one last issue.  On Wednesday, April 1st, when mom showed signs of a stroke, you did not call 911 or the doctor, but rather called a hospice nurse from Ashburn the next day. She comes and says mom only has days to live. It seems that was all you wanted to know from her, for neither she nor another hospice nurse was engaged, or even consulted concerning standard practices for hospice care. 

When I did inquiries with a few hospice care agencies, I talked to some compassionate and helpful people who gave me information regarding comfort care. The most significant thing I learned was that morphine is used to relieve pain and lessen agitation. It is administered with a syringe, without a needle, in small doses under the tongue. The goal is to make the patient comfortable so they can be more interactive.  Dad, when I brought up the morphine idea, you dismissively said "morphine is used as an euthanizing drug. I believe in natural death." I believe your uninformed opinion lead  to unnecessary suffering for mom.  Why was a hospice nurse not employed or at least consulted so that mom would be given the best possible "comfort care" in her last few days?  loving you enough to confront, Tom