Our Listen to Me show this week generated some thoughtful comments from you. Click on the title to jump to your emails. Thank you so much for your many comments, brickbats and bouquets.
From: John Hicks, Ft. McMurray, AB
"I'm sitting here listening to your program today, and have two main thoughts going through my mind. First was about patient dignity. Probably not conscious, and that developed further through lack of time available, but... when one holds information, they also hold power. We like our power. Some unintended consequences, but perhaps, too, where one stitch would save nine. More importantly, especially around administering proper treatments to people on wards (calcium), I'm taken back to your program on surgery. As one who used to make my living in the air, I'm both familiar, and a proponent of checklists. So... why isn't there a checklist system more prominent even on the administration of wards? May have saved the discussed negotiation, and a patient - and the patient's family - some, or much anxiety. As with air traffic control, put the "unit" into the system in the proper order."
From: Marguerite Mousseau, Vancouver
"I have just been listening to another program about medical errors on White Coat Black Art and I felt compelled to write. This topic has previously been featured on your program, in various magazines and in other media. I think that it is important to communicate this information to the public so that people approach hospital and medical care generally with a healthy, questioning attitude. On the other hand, I am afraid that the emphasis on errors, in the absence of information regarding the frequency of positive outcomes of hospitalization, creates an atmosphere of fear that can be very distressing if a person requires hospitalization. Two years ago, I was diagnosed with colorectal cancer and underwent a colon resection and a temporary ileostomy. Without exaggeration, I was probably as fearful about being hospitalized as I was about the cancer itself. I trusted my surgeon and was not concerned about the surgery itself but I was concerned about all the possibilities for error and infection unrelated to his skill as a surgeon. In addition, I felt completely powerless to ensure my safety while in the hospital. Instead of viewing it as a place of treatment that could lead to a good result, I was very apprehensive about every aspect.
My experience was completely different from what I had feared. Although I certainly did not get back rubs or much social interaction with the staff on the post-surgical unit, I received, what seemed to me, a very high level of care - that was very technically oriented but, also, very effective. The resection was performed by laparoscopy. Even with an ileostomy I was able to leave the hospital after only 3 nights. I live alone but I was able to take care of myself, with the help of friends, family and community health services. To me, this is nothing short of miraculous. A year later, I returned to hospital to have the ileostomy reversed. Following surgery, I was on a ward where patients required less complex care and there were more interactions with the staff. In neither case did I want to stay any longer than necessary but I also felt that I had worried needlessly about being in the hospital.
I certainly agree that the public should be informed about the potential for errors in hospitals and with any medical treatment and that patients need to be vigilant, to question treatment, and to be aware of proper hygiene I feel though, that medical error has become such as 'good story' that an imbalanced perspective is being communicated that can cause significant distress when medical treatment is required. This is particularly so, when patients are quite powerless to protect themselves, beyond a certain point. I am not able to listen to all your programs and you may, in fact, be providing a more balanced perspective than I am suggesting here. I know that there has been some media attention on programs intended to deal with errors such as a checklist. But, I also know that my view of hospitals as places fraught with life-threatening errors and infections is not at all uncommon. Yet, many of us will need this type of care at some points in our life. Thank you for providing a forum for this kind of input".
From: Alana Howell, Vancouver
"Last November 2010, at the age of 58, I had surgery for a hernia repair. Altogether, it was a positive experience, probably because I am one of those (rare?) people who not put off by or afraid of medical procedures. All through the process, I was treated with dignity and respect. I got to listen to the medical staff setting up for the operation, and listen in on the operation itself, although I was sedated I was awake enough to come to and pay attention now and then. One thing I told my surgeon about was how comforting it felt to me, during surgery when I could feel him leaning up against the table. It made it all feel more 'human' to me. Or do I mean 'humane'? Follow up wound care at my local health centre was also positive. They took good care of me and always explained what they were doing and why, and always made time for my questions or concerns. They are open 24 hours a day and 7 days a week, so setting up appointments was easy. They would have come to my house, but since I live close by, I wanted to get moving so always went to them. If you can imagine, I came out of the experience feeling a boost in my self-esteem and self-confidence - all because I was treated with dignity and respect. Thank you for giving me this opportunity to express my point of view."
From: Mimi Raglan, Winnipeg (who was featured on the show)
"It was good to hear the voices of patients and families - particularly the woman who successfully advocated for her husband when he became unexpectedly seriously ill in hospital. The key is to prevent errors, and that is where families can play a vital role. Regarding my interview about the reporting and counting of critical incidents there are a few additional points I would like to make. According to Winnipeg Regional Health Authority officials, 62% of critical incidents (CI's) occur in nursing homes (which are not counted in current statistics). If the WRHA is correct, that fact alone would more than double the Baker and Norton figures had they been included. Confusing the issue are the newer terms for medical errors such as 'critical incidents' or 'adverse events'. All 3 terms have separate definitions. Medical errors are commonly thought of as adverse effects of care. Manitoba defines CI's as unexpected and serious injury to a patient that has not been caused by underlying disease or inherent risks of a procedure. Baker and Norton call them adverse events (AE's) and accurately define these incidents as having been caused by health care management. However they also consider that many of these AE's are not preventable which does not appear to me to be consistent with their own definition of being caused by health care management."
From: Theresa Malloy-Miller, Delaware, ON
"The stories that these people shared today are very gripping. I belong to a group called Patients for Patient Safety Canada. I joined this group following the death of our son, Dan in hospital after a series of adverse events in 2003. There is a need for a unified patient voice."
From: Stephanie Koval, Sarnia, ON
"As a Nuclear Medicine Technologist working in a fairly obscure area in the health care system, it comes as no surprise to me when patients are unaware of the diagnostic test that has been ordered by their physician. I do not expect the patient to know the difference between a CT scan or MRI, a bone density test versus a bone scan. In the past, I used to a have an expectation that the patient would at least know why their physician has ordered the test. But I have been proven wrong time and time again. After squinting at a requisition and holding it at 53-degree angle, the illegibility of the scrawl suddenly disappears and one can read "C...P... N... Y... D. Chest pain. Not yet diagnosed. Test ordered, bone scan." If the patient had an inkling why they were visiting me today I could perhaps find a reasonable explanation to perform the test. So begins the clinical history. During the 10-minute conversation of the horrible winter we've been having, there was reference to a shovelling experience where there was perhaps a slight twist of the back, a coughing fit and a slip and fall down 4 concrete steps. Mentally sifting through the events, I now have reason to believe that the physician might have ordered the bone scan to rule out a pulled muscle versus fractured ribs. Next I ask what other diagnostic tests have been performed. Another can of worms. Maybe it was a CAT scan or an MRI or maybe just an x-ray, but there definitely was a machine involved. There was an injection. No, that was for something else. After I have ended my educational spiel about the nuclear medicine procedure they are about to have today, I dream of the patient following up with their physician indicating they had a bone scan. They were injected with a radioactive tracer, not a dye or contrast. Their pictures were taken with a gamma camera, not a CAT scan. If I have really high hopes, they can recall having a three-dimensional picture called a SPECT. My efforts to educate patients are not to promote my profession - it is for the patient. I believe that every patient must be informed. My common line before the injection, before the procedure and before they leave the department is "Do you have any questions?" No, you will not glow in the dark. The health care system is massive and not as integrated as we like to think it is. Health care providers should provide information relative to the patient's care and within their area of expertise. Also, patients need to take on the responsibility to know their medications and medical history - above all else, know they can ask questions. I can only hope that patients and health care providers alike after tuning into the previous episode "Listen to Me" will take note."
From: R. McGrath (Claire Smith's Mom)
"I listened with interest to your broadcast yesterday showcasing the patient voice of the health care team - well done! Additionally, I thought the town hall last fall captured some of the salient themes of the patient safety movement. I have a vested interest in patient safety. I wear many hats, but most importantly I am known as Claire's Mom. My 9-year old daughter died in a Canadian paediatric ICU in 2008 and an External Quality/Peer Review of her care deemed her death to be preventable. We too chose the road less travelled and channelled our grief driven energy into making the system safer through partnering with the health authority involved and telling of Claire's 16 days in the PICU, but also candidly discussing what happens to the family and to the medical professionals involved in adverse events and then reviews of care - in the days after... there are humans on all sides. I like to think that I get both sides - in addition to being "Claire's Mom" - I was also a nurse in the same critical care division in which Claire died. I have learned first hand that affecting change in the medical world is incredibly challenging for many reasons and adverse events often result in little, if any, public attention and discussion. I could go on and on but I really just wanted to say Thank You for your interest in the patient voice; every time our stories are shared - every time one person takes something from them - hopefully we make our health care system a little better ...hopefully a little safer for those who come behind us."
From: Rick (last name and location withheld)
"Dear Dr. Goldman: I'm sitting here listening to your podcast entitled Listen to Me Show. I definitely had to write to you regarding my experience. On August 07, 2007 I was in New Mexico for a work conference. On the last evening of the conference I went for a bicycle ride. The bicycle front tire became stuck in a rut and threw me through the air and I hit a tree. I went to the local New Mexico Hospital. As I came through the hospital ER doors, there were two nurses, one on each side of me. One nurse said you look like you are in extreme pain, I'll get you something for that - and she did. Following x-rays it was discovered that I had badly shattered my right shoulder and had two breaks in my upper right arm. I am also right handed. Due to the extensive swelling they could not operate and advised me that it would be at least a day or two before they could operate, but they would make me as comfortable as possible. As I was booked to fly back to Ontario the next day I decided to leave the hospital and return to Canada for treatment. I was given a prescription for pain meds; these came in handy as I had a twelve-hour flight with three airport transfers before landing in home. It was midnight when I got back home, and I immediately went to the ER. I was seen by a doctor who told me to go home and come back tomorrow morning. There was nothing they could do for me. The next morning at 8 a.m., I returned to the ER and went through the entire intake process again and waited for two hours to see a doctor. Now mind you I had brought my x-rays with me from New Mexico and this doctor looked at them and told me to wait he would see if he could find an orthopedic surgeon. After a lengthy wait, an orthopedic surgeon saw me and explained what needed to be done at which point he turned towards the door and started to leave. I asked him when would the surgery be done. He told me with a smirk that he didn't know but it would not be him, he was going on holidays. I was sent home from the hospital once again and told to await a phone call for surgery. Three days later I was still at home with my arm in the same sling I had been given in New Mexico and utilizing the pain medication sparingly to try and make it last until my surgery; I still didn't have a date. On the fourth day I had what the hospital called an 'event' or as the heart specialist called it a heart attack. Due to the 'event' I was admitted to the hospital for monitoring. Now I do not have the use of my right arm/hand, so doing most activities for myself was limited. Each meal came and went because I could not remove the lids from the containers, nor could I cut up the meat. I repeatedly let the nurses know and they said just call us - I tried this and was told over the P.A. system, we're with another patient, we'll be there later. Later never came. I called my spouse who then arrived at each meal and helped me eat. When I had to shower I was supposed to be supervised so I wouldn't fall and because I needed someone to help me take the sling off and hold my arm. None of this happened, I was shown where the shower room was, given a towel and some soap. I managed to take the tie from my bathrobe and wrap it around my arm and over my head to hold up my arm while showering. Pain medication was another story; it was almost nonexistent. They felt that Tylenol would suffice and only when they decided I needed it. I was in the worst kind of pain and finally my general practitioner's summer replacement dropped by to see me. She prescribed a stronger pain med but still it was a fight to receive it. After nineteen days an orthopedic surgeon saw me. He said he would do the surgery only if the heart specialist cleared me. I therefore had to have an angiogram that proved to be extremely painful, as I could not lay my right arm out to the side. They even went so far as to remove the sling leaving my shoulder and arm loose. I almost died from the pain. Not one person heard my complaint. I was cleared for surgery. Twenty-one days following my accident my shoulder and right arm were operated on. One day later I begged the surgeon to let me go home. And home I went. It is now almost four years since the accident and I have had to deal chronic pain in my right shoulder and right arm and hand and have been diagnosed with complex regional pain syndrome. One of my medical practitioners told me that the most likely cause was the twenty-one day delay in surgery. No one however would ever admit to that on paper. I filed a complaint with the hospital and followed up for about a year. No answers were given except to tell me that they needed to clear everything through their legal department before giving me a response. I never received an apology from any of the hospital staff or an explanation why I was sent home twice without medical treatment. I have since resolved within myself to let the matter go and try and live as normal a life as I can with daily chronic pain. Thank you for reading this lengthy comment."
From: Malcolm Goldstein, Montreal
"I just was listening to your program on CBC and would like to give you another story of "treatment"/mistreatment, with the hope that the training of doctors includes some course to emphasize and make them aware that they are dealing with human beings rather than simply performing an act. Recently I had a cystoscopy; it was an excruciating painful experience. And information sheet said that we would be given a local anesthetic and that afterwards there might be some discomfort for about 24 hours. That's quite an understatement! As for the examination: The urologist entered the room, said not a word to me, began talking to the three assistants in the room about ball games and sports, and then did the cystoscopy. At first there was pain and then more and more pain; after a while I was gasping trying to take deep breaths and to refocus my attention. All the while, the talking about sports went on and on and NOT A WORD TO ME from the urologist; it was quite like torture with excruciating pain. When he finished, he rushed out of the room saying to me, " I don't see anything there. I'll see you in 6 months." Until then he had treated me like an object or dead piece of meat. Soon after I wrote a letter to him, describing my experience & saying that I hoped that this report would suggest other ways that future patients would not have to endure what I did. Of course, there was no response and, of course, I do not plan to ever see him again. I understand that doctors need to have some distance from their patients, that perhaps if they felt too much what we felt it could be overwhelm them and make them ineffective in their work. But this went well beyond being human. I really hope, as one of the persons on your program today suggested, that there be a class in medical school to educate doctors to be concerned about humane ways of relating to their patients."
From: Gen Lussier
"I listened to your show today with great attention because it brought to mind my own experiences with the medical system. In 2008 I found out I was pregnant with twins and decided to give birth in a hospital. Fearing for the quality of my birth experience I chose the most progressive hospital in my area. I was told that I would probably need a caesarean section because one of the babies was in the breech position. In order to keep the doctor placated, I went to my weekly monitoring sessions, even though they were terribly uncomfortable. Every time, I was told my babies were fine. With that knowledge I insisted I go to term and allowed the twins and my body to tell me when they were ready. At 39 weeks and 2 days, my water broke. I went to the hospital, and as luck would have it, my doctor was on duty. I made the decision to labour for a while because I knew the hormones would help the babies' health. After telling my doctor about this decision, she tried to threaten my resolve by informing me that the anesthesiologist (right word?) would be sleeping from 12-6 a.m., and that if I ended up having to wake him up, he wouldn't be happy. I couldn't believe it and wondered if I was being put on a timetable. Finally, at 3:30, my contractions started getting more intense and I decided that it was time to have the caesarean section. The problems really started when they asked me to sign the consent form for it. On the form, there was a section that read something to the effect that I was told about the side effects and complications of the surgery, and because I hadn't been told about them, I didn't sign it. The nurse who had given me the form left the room to get the doctor. My doctor, who I had grown to trust, strode into the room with an entourage of three people and began to shout at me, while in labour that she had told me all the possible complications. The reality set in that yes, I was being yelled at, in the midst of contractions."
From: Louise Bjorknas, White Rock, BC
"Dear Dr. Goldman, thank you for your dedication to truth and your bravery in shining a light on difficult issues."
From: Laura Enright, RN BSN
"I am a hospital nurse and I have worked in Leukemia and Bone Marrow Transplant for the last 17 years. I heard the end of the woman wanting calcium within a time frame and the last 3 people speak. I have some comments. Medications are usually given, as ordered, within certain time frames. The woman who says that she had "to fight with nurses who said they were too busy" sounds strange to me. It only takes us a minute to hang a medication. My question would be: why was the medication not there to be given? There are, as you might know Dr Goldman, many many reasons why an ordered medication would be slow coming. There are many systems and people involved from the doctor to the clerical staff, to the pharmacy, to the delivery system. What exactly happened, and why? I think, listening to her, that the worst disservice done to her and the loved one was that no one took a minute to explain what why how of any delay and the actually urgency, versus her perceived urgency. To suggest on national radio that nurses must be "fought with" makes me very sad and very indignant and very angry. To allow her these claims, unexamined and unchallenged is a disservice to nurses and to the people who are forced to depend on us. As to the fellow who had an unexpected trauma of fecal incontinence: It could possibly be of some benefit if EVERY possible side effect could be explained and prepared for. But is that a realistic or even reasonable request? Should that fellow who was incontinent of stool after a CT scan been asked to wear a diaper? With that sort of stool urgency what else would have done? And for how long? I presume that he had received bowel preparation and there was some residual effect. There are endless possible adverse events that can occur. How many patients would howl about the stress, discomfort and indignity of being "prepared" for the possible side effect?? How much valuable time would be wasted doing that? The scenarios could be imagined ad-infinitum, and to whose benefit? And of course the folks who cleaned him up acted as if "nothing" had happened. What would have made him happy? In circumstances where patients throw-up or are in continent, or whatever, the goal is to (as quickly as possible) offer reassurance and clean them up efficiently with as little fan fare as possible, in an effort to reduce their embarrassment and discomfort. The reality is, anyone who works in a hospital sees body fluids, in and of themselves they are "nothing" in the day. What patients and families do not always understand, and what YOU should as a physician (understand) is that the diarrhea itself DOES meaning nothing to me, if there is blood, if there is pain WHAT IT MAY INDICATE, the broader clinical picture is of GREAT concern to me. The ACTUAL event, no sorry, the guy was right, I have other places I must focus my attention. And someone should explain to him that he really does not want it any other way.
I do not know the actual circumstances under which these events happened to folks. It serves no purpose other than to frighten people to tell these stories with no back ground no circumstances. Context and full comprehension of all facts: the specifics of the patient condition, present problem, location of the event, events before, during, after, and possible surrounding concurrent events are not only relevant, they must be considered in order to form any correct understanding of what took place and how to interpret its meaning. Families perceive things they observe to be emergent or urgent, when they are not. Or they ignore symptoms they have been asked to report, because they are too tired or do not consider it important. I have even had people say things like, "trying to drum up more business?" They do not always have all the facts at their disposal and cannot always identify the real priority in the events they are witnessing. One of the most important and critical aspects of our jobs as health care workers is to educate patients and families to help them understand that they must work WITH us and not against us. And sometimes there may be an "inexplicable" delay and their dad wanting another pillow does not trump anaphylaxis in the next room. Nor does it trump sitting for a few minutes with a woman who is far from home and has just received devastating news. Maybe there was a valid reason that a request was not filled ASAP. Resources are not infinite. There will be triage and priorities that some folks are not happy with. That's a fact of life. We have a very good system with people working harder and giving more of themselves than most folks do in a day at work. I do not suggest that there are not improvements to be made, and we work on that every single day!! Our hospital has a very comprehensive reporting system for errors and it is set up to recognize that usually errors do not happen in isolation, there are contributing factors that must be addressed to prevent recurrence. We also report "near misses" to try and identify areas of risk before an event occurs. Our working lives revolve around doing the best job we can with what we have at our disposal. Is it perfect? NO. Do we work on that goal? YES!
I am very tired of the misinformation, the misunderstanding and sometimes plain old whining that I hear and read about in the media. To consistently undermine confidence in our system, and the folks who devote their lives to the care of others only makes the public fearful, suspicious and resentful even before they come through the door. How does that benefit anyone?? It only makes our job that much harder and peoples willingness to try and do it well more eroded."
From: Mary-Sue Haliburton, Nepean, ON
"Thank you for this thoughtful episode in which we hear from patients seeking ways to reduce medical errors, and mitigate the effects of those which already occurred. I listened to both broadcasts. This is one of the best so far. So many of us have felt this frustration about not being heard, especially if something has gone wrong. I particularly liked the widow Madeleine Zeldin, who thought of original questions -- "Is there anything between 'stat' and 'whenever'? Smart lady. And it was good to hear that the doctors were listening to her analysis and taking it to heart. I felt this kind of frustration very deeply about a decade ago, when my late father was hospitalized following a vehicle accident. They had put him into intensive care, after he was moved to a big hospital from the regional one. He had a hairline fracture of the pelvis and some bruising, but was otherwise not too badly hurt. But despite the fact that his intestines stopped functioning, they were tube feeding him. This went on while they watched the colon ballooning for several days -- there were MRI and X-ray monitoring daily. Then they confronted the family (three siblings) with this ultimatum: we have to operate and insert a tube or his gut will burst. This issue of not being able to clear his colon was not mentioned to us before then. Until that time, my father was lucid and communicating with us. And although intestinal shutdown may happen due to trauma, I felt it was as much the fact that he was suddenly deprived of dignity and would have to defecate in bed -- something he had not done for at least 7 decades -- that caused him the kind of emotional distress mentioned by the man who was interviewed That in itself could have caused the shutdown as he could well have been "holding it in" to avoid the embarrassment. My sister and brother went along with the proposed operation. And being the middle child, I had all of that syndrome and timidity on top of it. I wanted desperately to ask why couldn't they give him essential nutrients using I.V and stop this force-feeding when it was threatening his life and he wasn't benefiting from it. Where was the logic in that? But because the majority of the family consented to the operation, it was done. I had to stay away because I couldn't deal with this calmly. For a while Dad seemed to be stabilizing. Then one day I visited the hospital and they were changing the diaper. The gut was working again, but there was a perfectly clean tube still in place, through a big incision. I asked if they could reverse the operation. And I was told in my father's hearing that no, just in case the problem came back, they would not. Dad just turned his face away. He passed away three days later. There has to be a way for patients and their family members to be heard. Thanks for giving this topic a complete episode."