Tuesday
[Journal not posted until Wednesday at 8:35 AM. I was exhausted from an early nap and went to bed unusually early.]
High-Level Journal Summary: An update from the 32nd Patient Advisory Group Meeting at NIH. I had special focus upon the "Wait Times Project Report" as I wondered about the intent of this project.
After formal and informal conversation, I was able to gain assurance that this project would not result in doctors spending less time with their patients. Instead, focus was being given upon how to improve the "wait time experience" when patients and caregivers were not actually meeting with the doctor. As such, this overall project seems much less benign than I anticipated.
To make my point today, I spoke up during the meeting. I told personal stories about the positive impact that unlimited time with my NIH medical team has made, especially when critical medical news is being delivered.
To make my point even further, I am reminded of what it was like earlier this year when I went to another medical institution -- but only after asking three times if I could even be seen, which felt demeaning when dealing with brain cancer.
Countdowns:
1.) Day 23 of 28 in my 26th 5/23 Temodar chemotherapy cycle.
2.) On 10/24/07, serve on a panel for "The Ethical and Regulatory Aspects of Clinical Research" at NIH. Panel discussion is from 10:30 to 11:30 AM.
3.) Monthly meeting with my local oncologist, Dr. Dipti Patel, on 10/25/07. The purpose of this meeting is to review my latest Hematology Report and see how I am progressing in my 26th cycle of Temodar chemotherapy.
2007 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 10 days ago.
2.) In 2007, I have had 69 SPS's in 296 days. This is an average of 1 SPS every 4.3 days.
Actual Journal: Today was the 32nd Meeting of the Patient Advisory Group at the National Institutes of Health (NIH). It was from 2:00 PM to 4:30 PM, which is a very inconvenient time for me. That is normally when I am napping, which I need to do because I take Temodar chemotherapy. So, I got to NIH early and slept in my car from noon to 1:50 PM. That was close to two hours and was enough to get me over the hump for the afternoon.
Today's meeting was especially important to me because of the following agenda topic: Wait Time Project Report by Dr. Clare Hastings. I was not certain what would be reported about "wait times" at NIH, but I was aware of some controversy on this general subject. So, I especially wanted to be there to voice the majority opinion I hear from brain cancer patients and caregivers.
Being on time vs. getting great counsel
Since my diagnosis with brain cancer on 12/6/04, I have had numerous experiences with various doctors. Some doctors have been precisely on time, but often at the expense of the quality of care.
For example, such doctors would use their allotted period of time and leave after that amount of time, which leaves little time for being able to engage in critical dialogue. I remember one oncologist who was standing at the door with his hand on the door knob once his allotted time was expended. He was in his final comments, but he was giving the visual cue that he was leaving. This visual cue said that he needed to move along, even though there were many more questions I wanted to ask as a patient. (There is now a big family joke about blocking the door if a doctor was ever to make such a gesture in the future.)
By way of contrast, my current medical team takes the time to answer whatever medical questions I have, regardless. Dr. Howard Fine at NIH is a great example of this. I fully expect that a 9 AM meeting might last until noon or 1 PM because every single patient before me gets the same courtesy of having EVERY question asked, regardless. And if they are getting life-changing medical news, it is critical for them to have this access to Dr. Fine and his team. I want them to have this access. Knowing what is going on with other patients, it is easy to be patient in such circumstances. Plus, I know that I will get the same courtesy when I meet with Dr. Fine and his team.
So, I went into today wondering which way the pendulum might swing on this waiting time issue. Would this be an issue of being on time at all costs? Would this be a philosophical shift that would take away all this time to meet with patients? Or, would this discussion be looking for a compromise between these two extremes?
Prelude to this discussion
As a quick prelude to some of the talking points I had for today, here is a situation I learned about which speaks volumes. This was sent to me by my Mom and is public information taken from the M.I.T. Listserv. I deleted only a little information so as to protect personal information, even though it is already public. Regardless, look at the caregiver reaction to "prompt service" which is given at a time when life-changing information was being given to a patient. This is but one example of the implications of too much focus on "being on time."
From: braintmr-bounces@mit.edu [mailto:braintmr-bounces@mit.edu]
Sent: Thursday, August 30, 2007 7:42 PM
To: brain-temozolomide@yahoogroups.com; btcaregivers@braintrust.org;
braintmr@mit.edu
This is the first time I have gotten a chance to really sit down and think about this-but when we saw our neuro-oncologist after Craig's MRI last week and she told us the shocking news that the tumor was growing which was so unexpected she also said something else.
She said "I hate to have to give people news like this because it screws up my schedule because then I have to spend more time with them talking about it!" Then she immediately apologized and recognized that it was a really rude comment.
But it stuck with me.
I was so in shock about the news at that moment that I barely was able to respond though I said, "Yeah-it screws up our schedules too-in fact our whole lives." But I didn't have it in me to say -- "What's wrong with you?" to her at that moment as we were trying to take in the catastrophic news.
My mother who is a therapist said to me that if she had said that to someone she'd have to cut her tongue out!
The insensitivity of it. This made me want to switch neuro-oncologists. How disheartening for Craig to have to hear her say that when he's being given the news that he has a growing tumor that is inoperable. I worry that this is a negative thing that will harm him emotionally and spiritually and that can then make him sicker.
Barbara
With Peace, Love and Hope
Craig's wife
Craig is 54 yrs old, diagnosed on 1/23/07 with a Grade IV GBM.
Another example of why quality time is important
The above note from Barbara about her husband Craig is an external example of why quality of care is more important than being on time. I do not know either person. But I can speak close to home, as well. It was less than a week ago that Jill and I went to NIH together to have our MRI's reviewed.
On 10/17/07, we both had big questions as we walked into the building from the lower parking garage. At the moment we walked through the doors, I told Jill that the results are out of our control at this moment. We do not know what the results of our MRI's will be, one way or the other. We walked into the clinic as aware as we could be about this fact -- even though we both wished the best for ourselves and for each other.
As the day progressed, we first learned that my tumor is showing evidence of continued "shrinking" and that I could continue taking Temodar chemotherapy. Dr. Fine gave me all the time I needed to fully understand the implications and to look far down the road to treatments in the future. It was not just a rubber stamp meeting where he delivered good news and moved along to the next patient.
Later, Dr. Fine met with Jill -- a meeting that Jill wanted me to attend. This time, Dr. Fine had tough news. As mentioned in my 10/17/07 online journal, Jill was told that there is enhancement in her brain tumor following her recent surgery. As a result, she needs to start taking Temodar chemotherapy as soon as possible. This was tough news to deliver and even tougher news to receive. Jill started to physically tremble. Psychologically, she had not anticipated this news at all.
But Dr. Fine did not rush through this. For the next 30 minutes, he asked questions of Jill to understand where she was in her thinking. As she brought up her previous plans, he addressed them -- one by one. When Jill's ideas were off base medically, Dr. Fine addressed them and quietly explained what was really happening. He did not "tell" her to do anything. Instead, he explained what was happening and why certain approaches would work and others would not. In short, Dr. Fine had created an environment where he was talking WITH Jill and not at her. Dr. Fine had created an environment that felt safe and was trusted. As my Mom said (and I agree), Dr. Fine was practicing the "art of medicine" at this point, and it came from a genuine place of care.
Protecting what works
I firmly believe that Dr. Fine and his team would NOT be able to deliver such tough news and still have such care if there were time restrictions involved. I ask all of us, how would you like to be delivered difficult news about a brain tumor (for example) with an overarching feeling that the doctor had limited time to discuss this information? None of us would like this. None of us.
As such, this is what I wanted to protect today. This "patient-centric approach" may cause a number of ripple effect issues, yes. But I at least wanted to speak clearly to the decision makers and NIH and let them know the value of this quality of care. I wanted them to have direct access to a patient who values this quality of care.
The decision maker in this case is Dr. John Gallin, the Director of the Clinical Center. I sat directly across the table from him, and he listened closely. Afterwards, we talked and he said that he was looking for this kind of information. This is the kind of stuff that can influence decisions.
A compromise solution
In the end, there was formal conversation and informal conversation on this subject. During the meeting and after the meeting, I sought clarification on what was going on regarding "wait time." Was this a logistical issue of better communicating when there were delays? If so, that is easy to fix. Or, was this a philosophical issue? That is, was this a generalized decision about limiting a doctor's time with a patient for the sake of keeping on time?
It took about 30 minutes of discussion after the meeting to get absolute assurance that this was NOT about limiting the time that a doctor could spend with a patient. I was directly told that no doctor at NIH would ever be told to spend less time with a patient. Period. And I believed this message, given the credibility of the source.
Instead, this issue had to do with what I call "low-hanging fruit." Personnel can talk directly with patients and caregivers when there are delays and let them know what is happening when there are significant delays. Just letting them know and giving them more options on what to do in the meantime can help to improve the overall "waiting experience" for them.
An example of what NOT to be
I was glad to drive to this conclusion. This is an effort to improve aspects of visiting NIH that CAN be improved but without compromising the "main event," which is the quality of care when meeting with the primary physician, so to speak. Amen.
I was worried about any senior decision at NIH that would slowly steer this organization to being more about metrics than about placing the patient (and quality of care) at the heart of everything that is done. Why do I care about this so much? Because I have had the experience of such quality of care -- and I still do get this benefit. And if it is that important to me, then I know that I am not the only one who can feel that way.
Let me put it another way. I also remember what it is like to be in a different environment at another medical institution. On 3/17/07, I had a late-night phone conversation with the head of neuro-oncology at another major brain tumor medical institution. Here are some of my notes from that conversation:
We talked for about 15 minutes. The net of the conversation is that (this doctor) will see me in several weeks, as soon as his current schedule clears a little. Good news. However, it actually took a bit of work to get him to agree to see me.
Initially, (this doctor's) assessment was extremely high-level. It stated things very simply and quickly, boiling down his assessment as follows:
• I look "fine."
• He only recommends Temodar chemotherapy for 1 year.
• There is no need for me to come to (this university).
• He is unwilling to talk to me about current clinical trials at (this university) "since this information will be obsolete in 3 months."
Carrying a scar
The above experience was SO different that my personal experiences at NIH and the University of Virginia, for example. Instead of getting all the time I needed to discuss issues, the above conversation was quick and to the point. Certain subjects were even refused points of discussion. Unbelievable! I felt insignificant. Honestly, I felt mad when this doctor refused to have conversation on certain subjects. How would he have felt if this situation were reversed?
Before I finally met with this doctor on 4/16/07, I had to ask a total of three times if I could be seen. I felt like I had to convince this team that my medical situation was worthy of attention, which felt outright demeaning.
Trust but verify
With the scar of this experience upon me, I want to help protect NIH from ever steering in this direction, even for a moment. What I learned today is that there is no intent at all for this to happen. Good. I was protecting against the worst possible scenario, and when I left today, I felt assured that this is not intended.
I will still watch this issue closely, but our starting point is a solid starting point. That is a positive outcome from today. Sold.
