Patient/Doctor Relationship

Morning Gemita

by piglet22 - 2023-05-26 07:41:11

That's a tricky question.

You and I and many others have seen the UK NHS go from start to where it is now.

One thing you can see on this forum is that location is a big factor as to the care you get and at no time has this ever been so obvious as now. Our friends across the Atlantic and down under, will have a different perception of healthcare to ours.

I think the doctor-patient relationship in the UK is at breaking point. When you go from family doctor to over-stretched health hubs with ever more waiting times, brief phone calls or face to face, ask the pharmacist etc., you know things are bad.

The technology improves, but the number of operatives doesn't.

I've found consultants aloof and uncaring. I've also found very caring hospital cleaners and some good general practitioners. I've nothing to thank my practice for making me suffer months of worrying heart block years ago and not taking it seriously.

A consuktant saying "if you've got something to say, say it this weekend". Devestating to the listeners.

Of course, the doctor patient relationship is down to the people involved. Both have to respect each other and their views and concerns. A lot of it comes with age and life experiences.

You have to have been there to be there. 

The days aof God like medics and touching your forelock are over. Both sides are equal and patients sometimes do know best.

Yes, do your own research. That has never been easier. take your own measurements . Often it's better data than a once a year checkup.

Tips for a good appointment?

With a theoretical 10-minutes allowed, make sure you prepare and spell out in one sentance what is worrying you. It is unlikely the GP or consultant will know you well. That much has changed. Maybe throw in something that makes them think.

I've got wise to the leading question along the lines of "what do you think is wrong?" Tempting to say "if I knew that, I wouldn't be here" Often it's the cue for telling you not to believe Dr Google.

It's like the traffic policeman saying "why do you think I've pulled you over? or what speed do you think you were doing?" You're stuffed either way.

If all else fails, go to the Yorkshire vet.

😵‍💫it’s a crazy world

by Lavender - 2023-05-26 10:11:33

I see a variety of specialists (gastroenterologist, dermatologist, and recently a sports medicine dr) as well as my pcp-who tends to be a kiosk where you plug in your symptoms and are then referred to a sub-specialty doctor. 
 

I keep detailed lists of symptoms if something is wrong. I take a short list of that and my questions to the dr. I also take my own blood pressure and pulse at home before going. I then take a picture of it to show the dr, because inevitably I get white coat syndrome. I have low bp at home but it goes up at the dr. 
 

I write down what they tell me. I discuss any meds advised with my pharmacist before taking the meds-over the counter and prescribed rx. 
 

I follow up any after appointment questions or concerns by email to the dr. 
 

Recently... I was seen by my gastroenterologist. He ordered an xray of the abdomen because of my ongoing bowel pain. Of course the results came on a Friday. I called early morning to ask what he thought. No one responded til ten minutes before the office closed. His nurse called and said the dr ordered a prescription for a med. I told her HE KNOWS I CANNOT TAKE THAT-IT IS IN HIS ONLINE CHART NOTES!! 

He obviously never read my chart before prescribing. She said it was too late now to get a hold of him .  She suggested I take an over the counter med-WHICH IS IN MY CHART THAT I CANNOT TAKE!  😵‍💫. I told her she obviously didn't look either. She said she'll get back to me. But she didn't. 
 

Knowing no one would get back to me til Monday morning, I called my pharmacy. The pharmacy recommended an over the counter med which I took and got good relief. 
 

So, on Sunday, I emailed the gastro office and told them what I took and that I was fine-knowing they would be calling in a prescription monday AM once the office opened again. 

Monday morning-the same gastro nurse called and said dr had called in a new RX. I asked if she read my email. She said he never reads those-I do-and I never have time til end of day. "Do you want the RX or not?"  She said I needed cardio clearance. I told her go ahead and if I want to fill it, I will. 
 

(I never filled it because although cardio was fine with it-pharmacist said it would exacerbate my symptoms. ) A day or two later, a PA read my initial email and....get this...suggested I take THE INITIAL OVER THE COUNTER MED THE PHARMACY TOLD ME TO TAKE FRIDAY!!

There is a staff shortage and combined with the doctors having only ten minutes per patient-medical care is a mess. You really need to keep your own records and be aware of your own body, give informed input. 
 

Now, some doctors take time anyway and run behind but are dedicated to quality care. I saw a sports med dr for a second opinion on a split tear of my peroneal brevis (ankle tendon).  First spec seen had a tech give me steroid injections- first one she put in wrong place, second one she put on right area but random place. No relief. 
 

New sports doc spent a ton of time assessing my foot, discussing what was tried thus far (two courses of PT, Iontophoresis, etc). Then he gave me an ultrasound guided steroid injection in the sinus tarsi-right where the fluid is building up. He also directed me to a specialty shoe shop. He emailed me himself before and after the process. 
I recently had to email him to say, while it was worth the try, the shot didn't help. It was an iffy idea anyway. He emailed back promptly and we agreed that it's time for me to accept this ankle brace and ice treatment is my new way of life. 
BUT I KNOW HE DID ALL THAT HE COULD!

I have had good and not so good docs. I've had dedicated therapists, knowledgeable medical pros. I have also at times-felt rushed and dismissed. 
 

Don't even get me started on the emergency room experience!  🙄

Effective Communication

by IAN MC - 2023-05-26 14:15:53

Doctors (and Patients)must vary enormously in their communication skills. I feel that I am failing if I don't encourage the Dr to do at least 50 % of the talking in the interview. 

I sometimes wonder  if patient  Google-knowledge is counter- productive and possibly leads to the patient talking too much. ?

Most doctor interviews have time  constraints and achieving  the maximum benefit from the doctor 's knowledge and training is paramount when I see them. 

Ian

A positive happy outlook can make a real difference to the care we receive

by Gemita - 2023-05-26 16:45:39

Piglet, Lavender, Ian, thank you all for your helpful responses which have confirmed that all is not rosy on either side of the pond!  Actually my care is pretty good in my main London Hospital, so is my husband’s, just not locally at the GP’s surgery.  

My husband’s urologist recently gave some excellent advice by email and sent us an earlier appointment to go back to see her for assessment because of recurring UTIs with stricture disease.  Yes we are certainly equal partners these days in our care and that is why it is so important to understand what is happening, what our options are.  I agree though that Google Scholar is not always helpful, especially if we try to suggest a diagnosis for our symptoms.  

And yes I often seek my doctor’s opinion and then end up doing most of the talking and I am not proud of myself for doing this.  One cardiologist said firmly on one of my visits:  “you came to seek my opinion on your arrhythmias, now listen to my opinion”!

With time constraints it is even more important to prepare one or two essential questions to ask, rather than going to an appointment with a long list of questions which doctors may not have time to answer. 

I don’t know how he does it, but my husband is a very happy, contented soul and NHS doctors find his enthusiasm for his NHS care rather unusual and they always respond positively and warmly.   It makes me smile and feel relaxed every time we see his consultants and encourages me to take advantage and seek help with symptoms that my husband would rather ignore during his all too brief “social” appointments.

I have found my own appointments have also benefited from being positive about the care I have received and doctors love it when you tell them how many activities you enjoy or would like to take up with your pacemaker.  They like to hear positive stories of how well we are doing and that we are happy in their care.  A positive, happy outlook can make such a difference to the care we receive.

I hope your care and symptoms improve Piglet to restore your faith in our health system.  Lavender, I am so sorry you are having difficult symptoms too and hope a solution can be found.  Ian I think you are generally happy with your NHS care and have good access to your GP NHS records.  I am still awaiting access which is frustrating.

Consultant EPs and GPs

by Penguin - 2023-05-26 20:25:36

Professional qualifications, surgical ability and subject knowledge is what makes a good doctor on paper, and based on Ian's criteria that's what we need. I agree with him to a large extent and take his point about listening to expertise.  EPs in the UK are, on the whole, extremely well trained and bar one, and I have had superb GPs and value a good one.

Re: shared decision making - I do think it's difficult to overcome the obvious power imbalance. I'm also not entirely sure that doctors really want to be seen as equal partners. We 'consult' them for their expertise and that defines the power imbalance - they provide opinions / we listen.  The problem comes when we question and perhaps it's how we manage our behaviour when questioning them that is key to keeping a productive, respectful relationship on the rails?  

I think that many doctors want the kind of relationship that Ian implies, where there is respect for their opinion, qualifications and knowledge given that they have spent years training and have the expertise. It's certainly easier (for the doctor) if the appointment is controlled by the doctor when time constraints exist.  I feel that there's an element of lip service to 'shared decision making' and that in truth doctors find it a PITA.

I'm not sure that doctors are to blame for problems within healthcare in the UK, rather it is the system itself and it's management which is flawed. There are occasional bad apples amongst doctors but they are reasonably rare.  There's certainly a great deal of discontent currently, with resourcing, organisational and pay issues. However, it's the bullying from Trusts which so many NHS employees report when inevitable mistakes are made under such difficult circumstances that is my concern. It has a ripple effect and destroys trust and respect on both sides.

In answer to the question 'what makes a good doctor', I'd reply that a fair and respectful employer (the Trust) and a government who provide adequate resources so that our doctors can try their best to do a good job are the factors which contribute to good quality care. It's not our doctors or their training, personal qualities or ability to do their jobs which is in doubt - but the structure which surrounds them really.  

Doctors’ dilemma

by Rch - 2023-05-27 02:31:54

I have a lot of health care professionals in the family. From what I see on a day to day basis, is that it’s an extremely busy profession which is quite stressed and burnt out! It may seem like they spend only a few minutes in the exam room but a lion share of their time is spent in charting, electronic records, messaging, curbside consultations, meetings, conferences etc etc which have no dedicated or allotted slots!!!!! Added to that now is the global shortage of healthcare personnel especially since the pandemic that has forced a lot of providers into changing their profession or into retirement! That has evidently put an undue burden on those who are working. 

In my personal interaction with doctors, I believe a good doctor is one who cares for his patients as his own family member, like his/her own parents, spouse, son or sister etc. But for reasons mentioned above unfortunately it’s very hard to find one such these days. 

Also in my opinion, in order to get your  concerns across, it always helps having someone in your family or close friends’ circle, one with some medical background to accompany you to the appointments. While most providers don’t like too many family members in the exam room, with your consent, providers can not deny access to at least one other member on your behalf!

Also, IMHO after an appointment, it’s always a nice gesture to ask your doctor how he/she is feeling or ask about their children! A doctor friend once told me that whenever his patients asked him about his well-being, it felt so soothing and comforting!

Penguin

by Gemita - 2023-05-27 04:00:34

Penguin, thank you so much for your valuable contribution. 

Compassion and understanding for the patient is what I am looking for in any doctor, so I would add that to your list of important qualities.   A patient needs to feel comfortable and safe with a doctor to do well.  Good doctors will often be able to diagnose a patient’s problem just by “listening” too, to their symptoms.  Sadly time constraints during all too brief appointments today do not always allow the full picture to emerge when a patient first seeks help.  In my experience this has led to worsening symptoms and the need to seek emergency support which is far from ideal.

Yes I think you are correct, some doctors don’t want to be seen as equal partners, shared decision makers and that is where the problem lies (although this is clearly changing).  In fairness, my EP clearly suggested I was an equal partner when he gave me 3 options to treat my arrhythmias and asked me to choose one option.  But I agree they have the training, qualifications and practical surgical experience and I do not and that is why I seek their opinion.  However I know my own body best and what it is telling me and that has to count too. 

Your comment “The problem comes when we question and perhaps it's how we manage our behaviour when questioning that is key to keeping a productive, respectful relationship on the rails” goes to the heart of the matter.  I sometimes feel that my doctors see my questions as perhaps doubting their ability, challenging their authority and so managing “how” I ask questions is key to restoring trust.   But how do I manage this difficulty, this flaw in the way I ask questions, I ask myself?  That needs some analysis.   Nonetheless, I do firmly believe that shared decision making and being an equal partner in my own care “when I know myself best” is important surely?  

My post was never intended to cover “healthcare systems” in our country of residence, although clearly this impacts heavily on the care we receive from our doctors.  Going to my appointments with one or two important questions only and learning to “listen” more, will be high on my agenda in the future Penguin, so thank you again.

Rch

by Gemita - 2023-05-27 05:05:03

Rch, thank you for your helpful contribution.  From your posts, I can see that you have health care professionals in your family and that you will appreciate what they are experiencing in the way of stress.   

Two of your statements resonate with me, the first: ”in my personal interaction with doctors, I believe a good doctor is one who cares for his patients as his own family member”.  When a doctor tells me that a particular treatment is what he would recommend for a family member of his, this always reassures me and makes me feel truly cared for.  The second statement “it’s also a nice gesture to ask your doctor how he/she is feeling” is a wonderful way to start the consultation.  Recently when my EP was running late and his morning clinic was running into mid afternoon, I first started the appointment by asking how he was and whether he had had his lunch.  It really broke the ice and we both laughed.  They are human after all and we sometimes forget this.

Yes, it is always helpful to have someone accompany us to our appointments, a family member or a friend, so that if we miss something important in the discussions, we have back up.  If I am on my own I sometimes ask whether I can record the consultation or bits of it when something "technical" as in pacemaker settings are explained.  Doctors consultation reports can be prone to error, omissions and sometimes never arrive in the post and to have a recorded tape of the entire appointment can be invaluable.

Managing Relationships

by Penguin - 2023-05-27 05:07:06

In answer to your question re: shared decision making being the best option when you know yourself best, I'm going to throw in a few issues which may or may not apply to you .

1. When a doctor offers you treatment options always ask for the risks vs benefits of each. These days your choice is documented and if you choose unwisely it is written up as your decision. Shared decision making means that you take some responsibility and given the imbalance (professional level of knowledge vs patients knowledge of their history and own body), it's worth thinking about our choices and who should really make the decision?

2. Fact: Pacemakers are undeniably complicated and few of us completely understand the settings and have an in-depth knowledge of electro-physiology and cardiology.   More experienced PM owners know more but is it enough to make decisions without thorough medical input?

3. An interesting question would be 'at what point should EPs take control of the situation and over rule us?'  We wouldn't necessarily like it, but I'd prefer that to making a mistake which was inadequately informed.

4. Clearly what matters most in shared decision making is absolute clarity from the doctor when explaining a diagnosis, their opinion re: symptom causes and their opinion re: the best way to handle the situation via settings / drugs / device options etc.  The power balance has to stay at 80/20 in my view and what we need is informed choice rather than responsibility.

Managing Relationships

by Gemita - 2023-05-27 11:20:58

Penguin 

I respect completely what you saying and you make some excellent points.  However, I would be more concerned about making the best decision for me and not so much about who would be responsible if something went wrong.  If something went wrong and it was my decision to have the procedure, I could accept that and live with the consequences, but I would never forgive myself if I had allowed my doctor to make the decision for me and something went wrong.  

When we sign a consent form prior to any procedure, we are giving our consent to such a procedure and taking full responsibility for our own health.  My doctor guides me in understanding my condition and my treatment choices, the risks vs benefits, but he cannot make any decision for me on whether or not to perform “elective surgery”.  That has to be my decision and my responsibility alone.

With arrhythmias for example, there is often no clear cut path to follow for treatment because arrhythmias can be difficult to completely eradicate whichever path we follow.  There are both risks and benefits to having treatment and because of the uncertain course/nature of arrhythmias, I don’t think we can accurately assess risks vs benefits anyway.  Treatment will be so individual and so will the outcome.  Sometimes doing nothing is as good an option as medication or an ablation and doctors and patients well know this.  

I agree “informed choice” is what we need to focus on, but even given informed choices, we ultimately have to decide on a treatment plan and accept it fully before treatment can commence.  We are therefore taking direct responsibility, not our doctors, for whatever decision is made.

I agree, making decisions about our settings without the guidance of an EP or experienced technician would be unwise, but this shouldn’t prevent us from asking about our settings, and experimenting with them if a patient has clear symptoms from pacing or from their electrical disturbances.

I don’t think a doctor should ever take control of the situation and overrule us unless we were not of sound body or mind to make a decision.

I want to make this journey with my doctors guiding me;  I certainly cannot do it alone.  However, I don’t think it is helpful to mention power balance, doctors overruling us and making decisions for us.  I will always want to be in control (perhaps that is my fundamental problem here with the doctor/patient relationship) to be primarily guided by my inner strengths/gut instincts that have never let me down when I have needed to make some difficult health choices/decisions in the past.  

Point Taken

by Penguin - 2023-05-27 15:43:27

Point taken re: the 'over rule' comment and 'power imbalance'. Bad choice of words from me.  What I was trying to say is that I'd want to know if I was going down the wrong path and wasn't guided appropriately.    Perhaps 'power' would be better replaced with an 'imbalance of knowledge'.  

 'I will always want to be in control' - this is understandable - it's your body, but, with respect, control isn't that dissimilar to power, in terms of how each party may choose to assert themselves within a relationship.  No offence intended, but perhaps both of us have selected quite strong words for the strong feelings that this subject can cause.

This guide from the GMC (General Medical Council) may be helpful.

https://www.gmc-uk.org/ethical-guidance/patient-guides-and-materials/talking-to-your-doctor-about-your-care

Doctor/patient relationships?

by Gotrhythm - 2023-05-27 16:20:36

For the first 50 years, this is a question I never considered exceptly abstractly. Then with the start of my cardiac symptoms, it slowly dawned on me over a period of several years that the doctors I was seeing would let me die rather than question their own diagnosis or tell me they were stumped. That sounds melodramatic, but I mean it without blame for anyone or  any hard feelings. I believe they were mostly good, caring doctors doing their best who would have been sorry if I died and wonder what else they could have done. Even so, I would be dead. A couple were arrogant a*** who at most would shrug and call out," next patient." But from my perspective the problem was the same. I would be dead.

Do you remember that old business legend about the relative investment of a pig and a hen to a bacon and egg sandwich? The hen is making a contribution, but the pig is all in. If it fails, the hen can walk away. The pig is committed. In a doctor/patient relationship, the doctor is the hen, and I am the pig. The doctor has important expertise I lack, but I'm, the one with literal skin in the game.It's my life I'm seeking to better and I am the one who will benefit or suffer and possibly die from something that might have been helped.

Hoqw do you choose a good doctor? I don't know. It's not a question I ask much anymore.Nor do I worry about a doctor who might let me die. In some situations, that might be exactly what I'm looking for.

I do always stay aware that it's my skin in the game. No matter who's right and who's wrong, I'm the one who will suffer or feel better. I'm the one who will bear the consequences in my body. It behooves me to do all I can to make every appointment as successful as possible. To do my homework and come prepared to bring all my intelligence (such as it is these days) and personal resources to bear. To listen well, and ask specific questions until I get the answers I need.

If my position seems baldly self-serving, it is. But selfish it is not. I am respectful of the doctor's time, and sensitive to their need to feel expert. They took a hard road to get where they are and no matter how dissatified I am, they should never be disrespected. They are also fallible human beings trying to get through the day the best they can--just like me. The better I do, the more likely we both are to enjoy whatever satisfactions motivate us. 

Penguin

by Gemita - 2023-05-27 17:58:46

You have very cleverly helped me to see what my problem might be when dealing with my doctors. As soon as I wrote “I will always want to be in control” I realised how I was coming across.

Yes I do want to be in control of my body which is perfectly natural but clearly my manner might be interpreted as not wanting to listen to my doctors and always knowing best.  Most of the advice gained, especially difficult advice to hear, I have taken on board and clearly benefited from a good telling off by my first cardiologist.  We certainly didn’t see eye to eye!   They were painful lessons to learn, but that is how we often learn.  He clearly was of the opinion that to hit my arrhythmias with aggressive treatment could leave me worse off when I was so symptomatic and almost pleading for help.

I am glad we didn’t take out the sledgehammer and ablate the area or hit my body with Amiodarone, that we chose the pacemaker route instead and gentler meds like beta blockers after Digoxin and Flecainide had failed.  Now when I look back I know I made the right decision but it could have been so very different if I hadn't listened to his advice

Gotrhythm

by Gemita - 2023-05-27 18:00:06

Hello Gotrhythm, thank you so much for your contribution to this thread and I am sorry to hear that when you most needed help and understanding, you encountered some arrogant doctors.  

You sound as though you are in a much better place now, particularly after finding the solution for your difficult arrhythmias. Your experience proves beyond doubt that we should never stop relying on ourselves to come up with answers too, especially when our doctors and other professional come up short or fail to help with our symptoms.  

We really are our own best doctors sometimes and if I ever stopped believing in my ability to really help myself and to change the course of an illness, I would indeed be lost in the present climate

Doctor/patient relationship

by AgentX86 - 2023-05-27 23:31:16

Obviously communication is the most important aspect of this (and any other, really) relationship.  Communication isn't just about your case. It takes other forms, as well.  We're human and if there is no connection there can't be any information transfer.  If you're ignored, you will lose respect for your doctor.  Well, the opposite happens too.  If you're prescribed a drug, that's the time to ask questions and see if there is alternative.  If you don't, the assumption is that you're going to follow your doctor's advice. If you don't follow his advice as closely as you can, your doctor feels like he can't help you and that information ends up in your patient records.  Your next doctor picks up on that "non-compliance" and you're on your way to bad relationships with all of your doctors.

I think Gemita takes this a bit deeper.  Care must be taken to not contradict the doctor.  Ask questions, absolutely, but ask them in a way that seeking specifics about your condition.  Telling him what you think the concusion should be, isn't going to work well.  Doctors do not like Dr. Google. It's a good place to get information about your situation but it's a real bad idea to use it as a diagnostic.

I hear many here talk about appointments being rushed. Of course there are differences from country to country and even from doctor to doctor.  I've rarely had that problem but I don't waste their time either.  If I have questions, I've never had a doctor move on until I was happy (I always forget something but...). Often, he'll walk me out to the exit.  My cardiologist remembers me by name.  I know he's not just looking at my chart right before the appointment because if my wife isn't with me, he'll ask why she isn't with me. I'm a real introvert and she's just the opposite so she is memorable. 😆

I have had a couple of doctors with a God complex and some with little "bedside" manner.  My cardio-thoraccic surgeon thought his $#|% didn't stink.  I wasn't there to make a BFF, rather the opposite.  I only saw him three, maybe four (don't remember comming out of the anesthesia) times. That worked for me and I haven't been back.  😁

At least the specialists I've seen don't seem to be all that time constrained. GPs seem to be more rushed.  They make a lot less money so perhaps they're forced to pump more people through, too. Or, perhaps they just have no power so have to take what they're given.  GPs (and pediatricians) have a crap job here. There definitely is hierarchy of medical specialties.

Officer: "Do you know why I stopped you?"

Driver: "No, don't you?"

Gotrhythm

by Gemita - 2023-05-28 03:23:52

Hello Gotrhythm, I missed your pig and hen analogy, although I think you have added to your comments.  It is a very good analogy and serves to illustrate your excellent point that it is the patient who has to pick up the pieces, good or bad, following any intervention/treatment, not the doctor who can walk away.

I will repeat what you say in your additional comments because it is so poignant:

“I do always stay aware that it's my skin in the game. No matter who's right and who's wrong, I'm the one who will suffer or feel better. I'm the one who will bear the consequences in my body. It behoves me to do all I can to make every appointment as successful as possible. To do my homework and come prepared to bring all my intelligence (such as it is these days) and personal resources to bear. To listen well, and ask specific questions until I get the answers I need . . . “

I will keep your words with me at all times Gotrhythm.  We both know that "good" doctors are caring and always do their very best for us but things can go wrong with any intervention and we ultimately have to pay the price if this happens

AgentX86

by Gemita - 2023-05-28 04:38:24

I was very happy to receive your excellent contribution about “communication”.  I had forgotten that essential ingredient between patient and doctor because without a rapport and effective communication very little will be achieved.  Your comment  "We're human and if there is no connection there can't be any information transfer" really says it all.   A doctor who is kind, caring with a good bedside manner and has the time to explain things, can make all the difference to the final outcome, so it is well worth while to cultivate a good relationship at the very outset.  If the doctor isn’t caring or someone we can trust and respect and work/communicate with, then perhaps we should quickly find another.

You make a very good point about some patients not being compliant with their treatments (meds).  Non compliance will certainly be recorded on our medical records and doctors may not give such patients the same amount of respect, time and care they might give to a patient who carefully follows their advice.  Understanding all our treatment options, including alternative meds we could try needs to be discussed with our doctors which is why good communication is essential.

Officer: "Do you know why I stopped you?"

Driver: "No, don't you?”

Ha ha AgentX86!  Good one.  Michael was stopped once for driving too slowly on a narrow country lane.  I think they thought he had been drinking.  I couldn’t believe the questions they were asking him.  They did a thorough check of vehicle and Michael, expecting to find something but failed and sent us on our way.  We felt like criminals.

Compliance

by Lavender - 2023-05-28 09:47:33

Gemita...thank you for your kind words. My stomach issues came directly from compliance with a cardiologist recommendations. The story:

This happened about four years ago-long before I got a pacemaker. My elderly mom is in a nursing home. She had to pee. After repeatedly ringing for an aide, she was very anxious and too proud to go ahead and pee her pants.  I helped her to the toilet and she leaned too hard on me, causing strain on my sternum and rib cartilage (costochondritis). Very painful and it progressed to pulling on the heart...leading to pericarditis.  Pericarditis is the most pain that I have ever endured. It lasted a long time. Finally the cardiologist said we had to prioritize and the heart is more important than the stomach. So I agreed to take 3200 mg Ibuprofen every day for nine months along with colchicine and other stomach meds to help me get the pericarditis under control. 
 

I gave informed consent for this and was told we would be sacrificing the stomach to save the heart. It worked. My heart made it through. My stomach put me in the hospital with stomach erosions. Since then, I've had multiple issues with functional dyspepsia, some autoimmune stuff and recently diagnosed with IBS. 
So now we treat the stomach while being cautiously aware of my laundry list of meds that I cannot tolerate. 
 

I have to be proactive. Docs are too busy to recheck my list. It's in the master system but they seem to not watch the intricacies of it. The pharmacist does. 
 

It becomes me seeing the dr -respectfully presently my latest symptoms-and hoping each specialist has a good idea. Each time they suggested anything, I comply. Inevitably, it's a disaster because of my stomach's inability to handle most meds. Some suggestions from the gastroenterologist, I was already trying. Having dealt with pain and bloating since October including two ER visits and multiple tests...my own research led me to a very natural diet, low fodmap, counting fiber grams and calories, water intake etc.. I don't blame the docs- they tried. I get by.

I pretty much have exhausted the meds and suggestions out there for it and I realize I will manage on my own. Just like my torn ankle tendon-two specialists, multiple meds, PT, injections etc etc... exhausted options. Live with it. An old nurse friend of mine calls it "being put out to pasture ". We are getting worn out and body parts are reaching their expiration dates. 
 

I always praise and thank the docs I see. I've sent a couple of them gift cards for aboveboard care, get well cards when some caught covid. I would not want to be a doctor. 

Lavender

by Gemita - 2023-05-28 13:35:53

Oh Lavender, my heart goes out to you because I know how painful Sternum pain can be and how it can progress.  It is hard to believe though that an injury causing strain on the sternum and rib cartilage (Costochondritis?) could progress to Pericarditis that required Colchicine and Ibuprofen for nine months?  Never heard of this before?   I can imagine the damage those two meds have caused to your digestive system though and can only hope that nature will intervene and give you some respite. 

As well as the stomach/bowel having a mind of its own and being called the second brain, it should also be remembered that a high percentage of our immune system is located in the gut too, so gut health is key to sound immune function.  I hope through diet you can get back on track dear Lavender because in my opinion the gut is every bit as important as the heart but you are doing all the right things and I am sure you will continue to search for your own solutions.  

Did they by chance recommend a Proton Pump Inhibitor while you were on Colchicine or Ibuprofen to protect your gastric system from damage, or are you on one now?  Not something we want to be on long term but it can help to calm stomach irritation and help healing to take place.  

Thank you for letting me know how things are Lavender.  Not ideal but we still have you with us and for that we are grateful.  And by the way, you are far from being worn out or close to your expiry date. Yes praising and thanking our doctors and hospital staff makes everyone feel better.   My husband sings to them and to everyone else in the waiting room or on the wards.  No one has ever seen or heard anyone quite like him and it takes a good deal of diplomacy on my part to quieten him.  He certainly knows how to cheer NHS patients up and transport them to another place xx

More info

by Lavender - 2023-05-28 17:48:03

Gemita-an injury to the chest can trigger pericarditis. I was injured directly next to the heart. 

Your question: Did they by chance recommend a Proton Pump Inhibitor while you were on Colchicine or Ibuprofen to protect your gastric system from damage, or are you on one now?

I WAS given proton pump inhibitors, carafate, and lots of other stomach protectors. I got rashes and many side effects from them. I cannot take zantac, pepcid, prilosec, protonix and prevacid. (Might have named some generic and some brands ). They settled on high dose nexium and eventually it caused side effects and I was taken off that. 
 

I was in the ER a lot. It got better but in the last year, I was back in the ER and diagnosed with the lactose intolerance and IBS. I already had the functional dyspepsia. 😵‍💫

A month ago they tried me on Miralax and Metamucil-bad reactions. They tried me on colace two weeks ago-ended up w big hives and insomnia.  This week we are trying Colace Clear-it's not "clear " if it's working. They want me to go long term on Linzess but my pharmacist cautioned me against it. If the colace doesn't help my next trial will be Benefiber as per the gastroenterologist, but they think it will cause the same problems as the other fibers. 
 

SO I eat 20 gr fiber in food, drink 10-12 glasses of water and eat low fodmap, lactose free and very little gluten. I was tested and don't have to be Gluten Free-it just feels better. I can take Tums or Senna with no problems if needed but rarely need that. I have seen multiple specialists but with all my med issues, not much can be done. 

Doctor-patient relationship, some thoughts...

by Selwyn - 2023-05-29 13:07:45

"There is nowt so queer as folk"

We are all individuals- and that includes doctors.

The null hypothesis is presumed true until statistical evidence in the form of a hypothesis test indicates otherwise. Therefore, the null and the alternative hypothesis must be mutually exclusive and exhaustive. 

Mutual respect is the essential quality.

Listening is the essential skill.

An open mind is the essential tool.

.......

Thank you all for an interesting discussion. This morning I had a coffee with a professor of clinical psychology that lectures on this very subject. 

You may wish to read:

https://www.bma.org.uk/media/7051/bma-the-doctor-patient-relationship-toolkit-final.pdf

More thoughts

by Gotrhythm - 2023-05-29 15:31:54

This is an important question. And a big one. So big that short easy answers will almost always be unavailable or just plain wrong.

One of the things that I think leads to dissatisfaction with the doctor-patient relationship--for both the doctor and the patient--is management of patient expectations. Both doctor and patient want the best outcome, in the shortest period of time, with the least expenditure of resources. But they may have very different definitions of what the best outcome will look like, how long is too long, and knowledge of the availablity of resources.

When it comes to patient satisfaction, doctors are frequently in a no-win, impossible situation. Patients have vague, unrealistic expectations and are not going to be happy even when the doctors are doing the absolute best they can. In self-protection, doctors must develop a fairly thick hide. We patients complain that the doctor "doesn't care" about us, but the truth is, the doctor must limit how much to care about patient satisfaction or risk either burn out, or becoming totally ineffective.

As patients I think we can make a contribution to our own satisfaction by tailoring our expections to reality. Now, I'll admit, I live in the US in a city where medical care at every level is abundant and easily accessed. I get faint at the very thought of what patients in other places, both in the US and other countries must go through to even see a doctor.

I fuss about waiting a month or three months to see a specialist. In other places, people must wait a year or two. If I don't like a doctor, I go somewhere else. In places where medical care is scarcer, the quality of the relationship becomes much crucial to the patient's well being. And the quality of what the patient brings to the relationship matters more too.

I found Agent X86's response to your question to be an excellant, clear and well-thought-out treatment of the responibilities on both sides of the relationship, and of some do's and don't's for the patient in managing communication. I would recommend anyone to read and heed it.

Selwyn and Gotrhythm

by Gemita - 2023-05-29 16:41:47

Selwyn, thank you for your valuable contribution which sums everything up nicely.  I wonder what the Professor of Clinical Psychology would make of our thoughts.  I am glad you found the thread of interest.  It has certainly helped me in unexpected ways and I will be better prepared for my consultations in the future.

I had forgotten the mutual respect, that really is essential.   I also need to adopt the “open mind” approach since I tend to enter the consulting room with my mind already made up how the discussion will be conducted and what the outcome might be and of course it never turns out the way I planned.

Your link is excellent Selwyn, just what I needed and I see it also has Key Resource links at the end of each section for further reading - a great Toolkit for everyone and I will keep it in a safe place.

. . . and this leads me on to you Gotrhythm and you make an excellent point:  management of patient’s expectations is a huge challenge for our doctors and for us.   I don’t know how I could have missed that.  Patients want and often expect an immediate diagnosis or solution to treat their symptoms when they enter the doctor’s consulting room so no wonder we come away disappointed sometimes, especially if we have waited for months to see our doctors.

I agree Gotrhythm, AgentX86’s contribution is a strong one since “good communication” is essential between the doctor and patient and can make all the difference to a successful outcome.  As AgentX86 says, “We’re human and if there is no connection there can't be any information transfer”. 

I set out to help others by making this post, but I feel I have benefited too from the comments received.  It is as you say such an important topic which requires a great deal of thought.   Each member has brought something special to this discussion and I thank you all for your contribution.

Doctor-patient relationship

by FG - 2023-05-30 10:49:04

Just got finished reading some incredible insights. And yes no matter where in the developed world you happen to lay your head at night, things are pretty much the same. This side of the Atlantic, that side of the Atlantic, or down under, Western Europe… Healthcare has become about money. How do I know that? Because I am an MD. I'm a radiologist though, not a cardiologist, and had a smug attitude when I first went in because I thought all these guys are going to treat me the same way I treat one of them when they come in for a CT or MRI  And ask me to go into my office fine-tune the video screens they point to things with their index finger I mag it up and explain it to them, 15, 20, 30 minutes, until my helpers come and get me. So absolutely obliviously, I thought I could expect the same treatment.  Nothing could be further from the truth. I can tell you, with God as my witness, I have not gotten one molecule preferential treatment compared to the reports all the rest of you are giving. They consider every single question a bother, they look at their watches,  And because I'm able to ask medically relevant questions in medically relevant terminologies, they start to shuffle their feet and look at the door. It is sickening. I have now got the pacemaker in place for nine weeks, and the first couple of months was good but now things are changing. My energy levels are dropping, my need for sleep is rising,  Even though the pacemaker rate is rocksolid at 50. I'm no cardiologist, but it seems to me the heart is beating less vigorously, and whereas my ejection fraction used to be 65% at 35 BPM, it may have fallen to 50% at 50 bpm or some similar change.  I'm on no medication other than Eliquis. So just to make the rest of you understand these guys are in some sort of elevated position, not a single one at the office I go to is from the United States, and I think the business guys are making all the money now and pushing the manual laborers to lay the bricks as fast as possible. That's precisely what it looks like to me. The same basic pressure I get being a radiologist to read faster faster faster!, But since I am older and at the end of my career I won't do it.

There's relationships?

by Echoplex - 2023-05-30 11:55:11

Perhaps I'm too new into my journey - but there's no relationships. 

My Family doctor hasn't seen me - but the nurse who did my pap last night told me I now need a penumonia vaccine because of the pacemaker. That's been it. 
I don't see anyone at the hospital or cardiac unit. 
Everyone appears to be very hands off, and reactive - not proactive. 

I am meant to see my cardiologist in a month (as I'll be 3 months post op) - I have no date yet, they call me not vice versa... and I know that after that, it's yearly checkups. 

 

FG

by Gemita - 2023-05-30 17:44:15

I am grateful for your contribution to this thread.  I am truly sorry that you have experienced such awful care after giving good service all your life to others.  I am concerned to hear that after your excellent start with your pacemaker, you don't seem to be doing so well now. 

As a radiologist you will know that an Ejection Fraction can vary quite a bit depending on the technician’s expertise and care when performing the echocardiogram and depending also on other factors like any meds we might be taking, on a change in our heart condition or other health condition, or on any arrhythmia like AFib which may be active, so lots of possibilities.  I wouldn’t get disheartened just yet because you are still healing from the implant and we need to allow time for this.  My AFib and other arrhythmias worsened initially before they got better FG.    

I hope you will keep your spirits up and keep talking to those doctors.  That is the only way we can move forward.  It will get better if you stay positive and no you didn't make a mistake getting a pacemaker.  It was the right decision

Echoplex

by Gemita - 2023-05-30 18:01:49

Echoplex thank you for your contribution to this thread and I am sorry your pacemaker experience so far has not been a good one.  My family doctor never gets involved in my pacemaker care either and it is quite difficult to get an appointment to see a family doctor these days in the UK.  It is even more difficult to see a consultant cardiologist though with long waiting lists.  

My family doctor offered me the pneumonia vaccine around the time of my pacemaker implant because of my age (over 65) not because of my pacemaker or heart condition.  I had a Shingles vaccine at the same time.

I hope comments in this thread have given some positive ways to have a better patient/doctor relationship and yes there is always a relationship between us whether good or bad.  Hopefully your three months post op check will go well and you will be given the time to ask some important questions.  I wish you lots of luck with your pacemaker

Not feeling well

by FG - 2023-05-30 22:20:15

Thank you Gemita your thoughts are always valuable. I've also thought maybe I have the flu – could it be pacemaker infection even? I just don't have any fever. But I feel "blah", no energy, and we are on a cruise and all I want to do is sleep! (Wife and kids not happy). So I'm going to try to drink a lot of fluids and take Advil on a regular basis for a while and see if that does anything. Stay tuned. You're right about one thing. I shouldn't blame anyone/anything unless I know for sure that's the cause.

FG

by Gemita - 2023-05-31 05:33:32

FG Not feeling well might be significant so even if you are on a cruise at the moment, don’t be afraid to ask the doctors on board to check you over.  Have they checked for Covid or another infection.  Have you had any blood tests on board?   Don’t try to be brave, please ask for help if your symptoms don’t improve.  

Advil.  Why do you feel Advil would help?  I would not take this med regularly, daily, unless advised by a doctor.  Can be linked to an irregular heart beat and may not be safe for certain heart patients.  Remember you are on Apixaban, anticoagulant and Advil may further irritate your stomach lining if taken regularly.  Please consult the onboard doctor or your EP/Cardiologist for advice FG about your symptoms.  

Stay well and enjoy your cruise xx

find a doc you trust and trust the doc you find

by dwelch - 2023-05-31 22:38:19

The few folks that have read my posts will often see those words.

Things like what brand device do I get next, what model, what features.  that is all doctor, you should be able to trust your doc to make that decision for you.  Your job is for example, I play tennis, I jog, I hike with heavy backpacks. Things that may affect the doctors decision and or settings.  The devices are more similar than different.

I have only "fired" one doc, he wouldnt talk he would run the interrogation instead of a nurse or tech.   Zero communication other than I am changing this setting or that.  I dont want that setting changed it has been that way for 15 years.  I think it might make you more active or something.  got rid of him as soon as i could.  Have had a number of docs due to how insurance companies play games within a city and from moving towns from time to time.

As with anyone you interact with, it is not necessarily a language thing, but they may be the smartest and most talented and most intelligent whatever those terms mean, in the world, but if they cannot understand your questions the way you ask them and cannot give you answers in a way you understand, they are useless to you. 

Call it communication or whatever you want, if you cannot understand what they are telling you even with some notes that you look up on the internet later (no matter what you will have things you need to look up from time to time, note this site has more combined knowledge than any doctor you will ever meet).   this is true for everything a life partner, people you work with or for, etc.  Cant ask questions, cant convey knowledge or status or symptoms, etc.  It is not in your best interest.  They are there to work for you you are not going to seem them for their benefit.   if you have to drive or travel an extra hour or two, that is how it is it is not uncommon in the US to go to the big city in the state or the next one over for this.  Just part of how it works.

Depending on where you are and the rules for the time the doc has, etc.  You probably want to bring some notes, simple, organized by priority (can probably get most of them answered here, but anyway).  "decisions" are very rare, I am 35 years into this, device number five and only one real decision in all that time and that was that I already had three leads on one side and it was time for a biventrical so what if there wasnt room what do you want to do.  My first though is your the doc, why are you asking me.  as was my second and third and tenth, why the hell are you asking me this question this is in your domain.  from one device to the next they may pick one with a better battery or maybe some other features but they are more similar than different.  they set the new device to match the settings of the old device so that it is a smooth transision.  Only once in that time have I had an issue and the doc had me use a halter and she said she literally went through every beat over the weekend to find the problem (since I had so much experience and had not had issues).  turns out it was feedback due to the quality of my lead (my 30 year old lead btw) and the way this brand worked.  had me run in on monday as soon as I was available and a tech showed them how to make the change.  problem solved.  do I expect that from all docs, yes.  would it surprise me if a doc I trusted didnt work that hard, it would not surprise me, but happy I have this one for now.  One factor here is depending on when you start this journey and which doc you partner up with, you may retire docs.  I am still in the youngest in the doctors office category.  doing the math I could still get another 30 years of pacing or more. doc wanted to "save the right side for the future"

I want to be careful how I say this, but the folks that typically get pacemakers or even have heart issues, are lets say not kids.  Mature, school or street smarts or both, so can have frank and technical conversations with the doc.  This site shows that heart issues bring fear and anxiety.  My experience so far is the docs I have dealt with, except the one, are made of the stuff that has what I guess is called a good bedside manner.  the right level of patience, calm, and answers you can understand.  Maybe I am lucky.   

I think the formula if there is such a thing is communication and trust.  Does the doctor both "hear" and "understand" what I am saying.  Can the doctor ask questions or give answers in a way that I understand.  At the same time does the doctor have the right level of confidence and responsibility that I can trust them to do their job, make the medical decisions that fall to them (for example can I trust them to do their job when I am knocked out on the operating table and cant have committee meetings about every decision).  The trust comes from the communicaiton.  Your best friends perfect doc may be horrible for you (should not affect your friendship hopefully) simply because how you and your friend communicate with the doc may be different and one doc may be better suited.  Just like you may not get along well with yout best friends spouse, yet your best friend does.  

Fortunately or not there is the internet now, so a combination of bring questions to help remember and make better use of limited time.  have the doc write down the spelling of things for you to look up, and then look those things up on your own time.  when you have your interrogations, ask for your copy of the report, if you are interested study that report, ask folks here what things mean, search the net.  next time you go in maybe that is a question.  my doc clearly states that I know more about the device than she does, she is a doc I am the engineer, that does not mean she cant set these settings or doesnt know what they mean but maybe not everyone is going to understand electronics or chemistry or biology to completely understand some of the technology, but still these are valid questions.  most important, the report should show the setting when you started and the final setting, rarely should there be any changes.  There is one that they change on mine from time, essentially to try to save a smidge of power, thsi one should be x amount larger than that one, so if this measurement changes on me then they change that adjustment.  but these are areas you can ask this site, search the net, or bring to the doc on the next visit.  taht was long winded but it is the Tracey_E approach.  Learn everything you can and that helps with coping, etc.  I dont 100% subscribe to that, as we all have our own custom coping mechanisms.  but you should desire and attempt to have the 50,000 foot understanding of what your condition is, what the treatment is, and what your role is in that treatment.  you dont have to become a doctor and an engineer and get the in the weeds understanding, but you can get the 50,000 foot one and if your doc cant help you with that, then find another.

Find a doc you trust, trust the doc you find.

dwelch

by Gemita - 2023-06-01 05:58:39

Wow, dwelch, you never disappoint and since you are an experienced, knowledgeable member, I always take note of your posts.  Thank you so much for your contribution and for all the important points you make.  

Find a doc you trust and trust the doc you find is a sound message and seems straightforward enough, but is it?  Finding the right doctor like finding the right partner in life with whom we can truly develop "and be ourselves" is not going to be easy, but the benefits of doing so will be clear for all to see.

Finding a caring doctor, a doctor we can trust and respect, a doctor above all who is a good communicator and who is willing to listen and able to effectively manage our expectations as patients, can make all the difference to our well being and this part of our journey should never be rushed.

Learning everything we can about our heart condition so that we can effectively speak to our doctors and make the most of our all too short appointments is an important point you make.  I discovered this when I last saw my EP.   Because I had done some homework on one of my Medtronic Settings (NCAP), I was able to convey why I thought it might need adjusting/or even switching off.  My EP listened and the setting was switched off.  I came away feeling empowered;  more importantly, I came away feeling better.   On the other hand, I must learn not to talk so much during my appointments and to listen more too.