Murphy Reared His Unwelcome Head Again!

Fred landed in Emergency the second week in July with intense pain in his lower back and we just assumed that it was his kidneys.

Not!

After the preliminary scan, they came back to us with information that there are metastasized lesions (one on the lumbar spine-L2 and another on the acetablum – the bone around). Holy Crap!!

 So they want to do more (and more and more) tests: CT scans; full body scan; MRI; still not able to isolate the primary source of the cancer. Finally they did a lung biopsy and still have not been able to isolate the primary source.

It is getting weirder and weirder. The biopsy report said that the spot on his lung is not the primary source of the cancer nor is the prostrate. They may look at the gut.

The big issue is the pain. He has fentynol patches, is taking hydromorph and medical marijuana. Gets a little spacey at times but is managing to control the pain pretty well.

This one has really scares me! Not only does the concept of Cancer scare me, the fact that they can’t find the type of Cancer that is it; where it’s coming from; that he is in so much pain; and that there is so little I can do to help scares me even more!

For the most part, the care and the hospital staff have been excellent . . . except for (you knew there would be an except for):

Ø     It seems that the Family Physician is left out of the loop! And who knows the patient best? S/he receives copies of the lab work but does not have access to the Hospital records. And s/he is not even allowed to sit in on relevant discussions with the Care teams (so I was told).

Ø     It seems that the Doctors (Hospitalists) are changing continuously. In the 2½ weeks Fred was in the hospital, his hospital doctors changed three times.

Ø     For the most part, the staff did look on the patient and family as resources for the Care team. But there were incidents where the staff treated us as if we were not credible resources in the situation. We were told certain things by the attending doctor, but the nurse questioned these and refused to have the doctor contacted to clarify the instructions. 
 What disturbed me (and I expect other patients and family) most was the lack of . . . or . . . mis-communication amongst the staff - from the top on down . . . 
and
the inconsistency of the care.

Rant 7 – It Feels Like a Money-Grab

and

I am not stupid

February – May, 2018

Most of us were brought up believing that doctors were all- knowledgeable, committed and dedicated. Well, that bubble burst!

The first hint that my assumptions were wrong was many years ago when an eye doctor told me that he couldn’t answer my question because my 20 minutes were up . . . I would have to make another appointment. Hm-m-m! Oh, I thought that maybe it was that one doctor.

More recently, I have discovered that this situation still exists and, as a mater of fact, has acerbated into a system where you need a referral from a doctor even when you are requesting a procedure that you have had before and the symptoms are identical . . . both the medical persons get fees and it feels like you are not smart  enough to know.

Another situation is where tests are required again and again for the same thing by different doctors . . . add to that the frequency of getting tests done . . . more fees for each doctor as well as the testing facilities.

Then, there are the follow-ups – that could be a five minute conversation after an hour wait, to confirm that things hadn't changed or are as they should be . . . (even if the doctor really hadn’t read your file) then another appointment three or six months later . . . so many of these could be handled through a phone call or email (G-d forbid). Oops, fees are more for a visit than they are for a phone call.

Some of the side affects of this presumptuous money-grab are: long waiting times (to see the doctor who will refer you to the doctor where you will wait again); the doctors have no idea who you are or why you are there; they are too busy; they book too many patients; patients need to come back again and again. Not to mention the psychological toll taken on the patient who is often excluded from information that could help him understand what is going on.

S/he is likely anxious; fearful; feels like an object; and is treated like “s/he wouldn’t understand what’s going on anyway!!” 

Rant #6 - Lets Talk About Primary Care

Originally, I was so pleased to find out that our Medical Clinic (the Haig Clinic) was part of the Primary Care Network here in Southern Alberta.

I never thought much more about it until we became thoroughly entrenched in the Medical System.

My first mistake was that I thought a Primary Care System implied that each part of the system has a path, is integrated into, and responsible to the whole.

HUH – was I wrong!!

It seems that the key objective of the Primary Care Network is to ensure Albertans have a place to enter the System – a front door – a family doctor . . . if you please. Theoretically, this is good . . . BUT . . . the doctors at most local clinics are not taking new patients.

Then the doctor refers . . . and refers . . . and refers. 

Communication and follow-up seem to be optional.

Any referral MUST come from the doctor; the staff sets up the appointment with the receiving service and tells the patient when their appointment is.

What would happen if we tried to introduce the patient into this Primary Care Team?

The biggest element missing from the system seems to be the patient. It seems that the more complex the situation is - the less the patient is involved in the process: the process goes on around the patient.

How can they call it a Primary Care system if one part of the system doesn’t know what the another piece of the system is doing – has done – or plans to do?

Rant #5 – Oops is the scariest word in the English Language: The Fear/Panic Syndrome

July – October (2017)

Now what?

The pain in his foot was so bad, he couldn’t put any weight on it . . . Fred thought there must be a broken bone or bones in his foot.

I can’t deal with over 200 pounds of pained weight, so again, after talking to Healthlink (telephone health service) it was a call to 911 and the EMS with a stretcher to take him.

Again a long stay in Emergency and a final diagnosis of gout . . . but the Emergency doctor said he was concerned about prescribing the usual medications for gout because of Fred's kidneys so he tried a very a minimal dose . . . it didn’t work.

A trip to the Family doctor resulted in a steroid regime.

Cricky . . . what next?!

What Next was another visit to the hospital with a significant amount of blood in his urine. This time he was admitted. After more tests that revealed nothing, they thought maybe it was still a leftover from the TURP or irritation from the wrong catheter when Fred had the urology dynamic test . . . another one of those ‘scare-the-hell-out-of-you’ experiences. 

Fred monitored the blood-in-the-urine thing and realized what an issue was and what was not.

Now the gout (the pain and the difficulty walking) and the failing kidneys became the centre of our concerns. The resurgence of the gout pain was continual and once more the Family Doctor prescribed the prednisone.

October 8^th, 2017 – the latest visit to Emergency

An extended (24 hour) stay in Emergency undergoing extensive testing to identify why he was experiencing a muscle spasm in his lower back.

This was the first time we have actually experienced one of the Hospitalist Physicians[1] (and I am still reserving my opinion about their role in the system). We were impressed with the gal who came in to see Fred. (We both commented that she was very different than any doctor we had encountered up to then on our medical misadventure journey: she was very hyper; was not wearing a ‘white coat’; seemed exceptionally concerned about her patients). She was more thorough than any other doctor – it was obvious that she had even read Fred’s file.

She uncovered a potential issue that was noted in January that indicated there should be follow-up! She even called our home the next morning to ensure we understood and were following up which we did. And another Hospitalist called a few days later to find out if we had followed up with our Family Doctor.

When your Family Doctor calls you to make an appointment you can only assume there is something very important.

No doubt!

The Family Doctor admitted that the January report did indicate the need for follow up. 

He commented with a smile, “It must have fallen through the cracks.”

OOPS!

Did he actually read the report???

Whose CRACK was it anyway??

October 19^th, 2017

The scheduled six month visit to the Wong doctor (the Nephrology Specialist that never shared information with us before) resulted in a Medical Rant from him about: how little other medical personnel knew about the interaction of medications with the kidneys; how wrong they usually are; how he had done the tests before Fred left the hospital in January; how he had discussed all the results of the tests with us (like the tests he had done and no concern in regard to potassium, etc) that we did not recall AT ALL.

We heard more from him that day than he had ever shared with us before. [2] 

Needless to say, this outburst relieved considerable anxiety.

We realize that we have been suffering from the Fear/Panic Syndrome.

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[1] Hospitalists are “Physicians whose primary professional focus is the general medical care of hospitalized patients. Their activities include patient care, teaching, research, and leadership related to hospital medicine.” Society of Hospital Medicine http://www.albertahealthservices.ca/assets/info/hp/cfm/if-hp-cfm-annual-report-16-17.pdf page 12

[2] He did tell Fred his blood pressure was high after just one test and prescribed Coversil – that we questioned because his blood pressure had not been high before.

Rant #4 - And the Misadventure Continues . . .

Were we lulled into compliance or were things really getting more under control?

Our last visit major disappointment came when we visited the Kidney Specialist. He reinforced our discovery that most doctors, especially specialists, were not inclined to understand the concept of communicating.
As we sat anxiously in his office to find out if, what we were doing, was actually achieving anything. He walked into the office with a file; sat down at his desk; opened the file; and told us he would see us again in six months! 

WHAT! 

 Nothing about how things were going or whether we were on the right track or . . . anything.
We were so shocked that we could not even remember what questions we wanted to ask.
Finally I managed to blurt out “What are the test scores? What do they mean?” I commented that when we saw him last he said Fred’s kidneys were functioning at a 18% level. His comment was “I didn’t say that!”
We both remembered that . . . but neither of us could see any advantage to questioning what he said.
Again, he may be a very competent doctor BUT how would you ever know?
Blood-letting (drawing blood) continues at the Lab, weekly, bi-weekly, or monthly to monitor the INR levels that regulate the blood thinner levels and the conflict still arises as to who calls us with the results.
We had thought that because the one doctor was the specialist, it was reasonable to get the results from his office and so chose that option.
For a while, both offices called us (the Specialist AND the office of the GP). Then the call came only from the Specialist’s office; then the GP’s office called wondering why they were not getting the Lab reports.
Apparently, the Lab no longer sends results to the GP but they are recorded on the network.
Oh, I did have a major clash with the nurse about getting the results and getting an on-going OK from the doctor to share the results.
On our next visit, I did ask the doctor about getting the results of the tests. His comment was that he has too many patients to do that.
Okay!
I did ask him who the system was set up for, the patients or the doctors.
His answer to the question was not forthcoming so we did not wait for an answer.

Doctor's Rules Reign!

On June 28^th – Fred retired the on-going Home Care Workers.

Ya-Hoo!

Medical Rant #3: And what would we do without them?

Now with all the disappointments, mistrust, and mistakes that have surrounded our Medical MisAdventures, we have finally found something that works!! 

 Alberta Health Services – Home Care

With no family nearby . . . no close friends . . . from the very beginning, Alberta Home Care has worked right along with us to come up with the best possible care options.
We arrived back in Lethbridge with NO idea what to do. One visit from Home Care set us off in the right direction – into the hospital in Lethbridge – the best place for Fred.
And then there is Lethbridge Family Services and the Home Care workers and staff. 

 OMG – THEY COMMUNICATE ! ! !

We have had Home Care Workers come in twice a day every day since Fred got out of the hospital almost 4 months ago.

There is a variety of Care Workers: some young; some not so young; some highly congenial; some very shy; . . . an incredible variety. Each one records any observation seen in the visit and immediately communicates these with their supervisors.

If there is a concern, we get a phone call from a Health Care nurse within a couple of hours to arrange any needed follow-up.

I must say, there is no pressure to leave the services. As our Case Manager said, “ Continuation of services depends complete on you. You are in charge of your Service.”

The workers have become like members of our family . . . we share our highs and lows with them and celebrate any accomplishment with them.

As Fred said this morning, “We couldn’t have any better care and service”.

Medical Rant #2

They Don’t Talk to Each Other
We became acutely aware that each silo of Specialty Care provides excellent service BUT does not consider what other issues or conditions may be affecting the health and well-being of the patient, nor does that medical specialist communicate or share information with other medical staff involved to ensure the safety and well-being of the patient.
1. Our first indication of problems in communication was the phone call we received from our Internist in Lethbridge that they had a bed in the hospital in Lethbridge to prepare the patient for his angiogram at the Libin Institute in Calgary. We received that phone call in the FMC as we were waiting for the patient to recover from the angioplasty that he just had. The Internist was the doctor who had referred the patient in the first place. He did not know we were already admitted in Calgary for the procedure.
2. After the Cardiac Team decided on what procedure and timing they recommended the patient was transferred back to the Chinook Regional facility, we had the opportunity to see the aforementioned Internist who asked us what was going on. To me, that indicated that he had either not been sent the information or did not had an opportunity to update himself on the progress of the case.
3. When the patient visited his family doctor after a trip to Emergency at the Chinook Regional, the Family Doctor knew nothing about what treatment the patient had received. Again he had not been informed about any of the procedures or case plans for the patient. The only way he was aware of anything going on was a lab report from the hospital. With each admission, the patient provided information about the name of the family doctor.
4. There was a huge gap in providing the patient with information about where he needed to go for what.
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