A journal of healing

Archive for the ‘patient satisfaction’ Category

Making it count


Every year we live is a good year and I am grateful for it. My parents both had short lives, especially my mother who passed at 57.  I have lived longer than she did. I often think of how scared she must have been at the end when she knew there was no future. She was diagnosed with end stage lung cancer and there was nothing they could do for her. She died six months after being diagnosed.

My father had Factor V Leiden which he inherited from his mother’s side of the family. She too had issues with phlebitis but was never diagnosed. I remember by the time my father was 45, having to have his legs wrapped in warm washcloths to help with what was probably a DVT ( blood clot). I remember as a teen borrowing his compression socks to wear as knee socks. I had no understanding of what he was going through. When he was 53 he had to have his leg amputated. I thought he was so old. He spent his remaining years in and out of the hospitals with bypass surgeries and other complications and passed with a heart failure at 71. In reflection, I am amazed at how he managed to get through it all. He made my life hell with his demands after my mother passed, which made it hard to have compassion for him at the time.

Both my grandmothers lived healthy way into their 90’s. My Nana never worked a day in her life. She was a gracious woman from a bygone era. Her husband was a very young man when he died. He never heard the train that he drove in front of. My uncle, who was three, also perished in the accident. It was never spoken of other than that bit of information. My Gram was well taken care of by my aunt and she too had lost two husbands. The first one, my mother’s father, was so changed from fighting in WWII that he returned to the states a broken man. He died in a sanitarium several years later after leaving my Gram when my mother was 15. Again, we never spoke of this. I found letters and clippings in my mother’s trunk of stuff after she passed.

My father’s remaining sister lived very well. My uncle, her husband, however died of ALS. I cannot imagine how terrible that had to have been. Uncle Bob was a vibrant man. My Aunt Louise also did not work in the sense of a  9-5 job. However, when she was in her fifties, she became the Mayor of her town on Long Island. She remarried and traveled with her second husband until she was stricken with bone cancer.

My other aunt lived also into her nineties. She died of a broken heart. Her beloved husband literally fell over in their living room of their vacation condo after driving from Michigan to Texas. He was 90. They were devoted to each other and my aunt never recovered from his death. She just gave up living. She could have done anything as they were multimillionaires. But for her, life without my Uncle Larry was not worth living.

Why the morbid litany of my family history? Because the last year has been the unhealthiest one I have ever had. Truth be told, I am not sure of what the outcome is going to be for me. None of us really do. I have been very scared. I finally went to my PCP, who blew off my symptoms as just being fat, even though lab worked showed some major changes. I went to my rheumatologist who thought completely otherwise. Last week I went to see a Cardiologist. They did an EKG but then refused to give me much of an explanation of what they saw. I am scheduled for a series of tests next week to see what is going on with me.

I had to fight for anyone to listen to me. I know something is not right. It is not that I am wishing for there to be something wrong. Oh no, just the opposite. But I know how I feel and it is not right. I do not have a lot of faith in the cardiologist who actually never saw me until the end of the visit. He had another very young impatient MD do the exam. She said something about my T waves being inverted, when I questioned her and that was it. The head cardiologist never looked at anything because he recommended I take a statin. My cholesterol is below 100 consistently.

I have been taken off of everything. I cannot even take Advil, which really was messing me up, but dampening the pain. OTC drugs can be very dangerous. I had taken 1800mg of Advil for months back thirteen years ago before they put me on a biologic and I was diagnosed with PsA. I was taking under 1000 for the last couple of months just to be able to move and sleep. It was making me very sick.

I will admit that I have had thoughts this past month that I was going to croak. I have never felt so consistently awful. This made me think of what my relatives must have gone through when they knew they were facing horrible futures racked with disease without hope. I am afraid of dying. No lie there. But more important, I do not feel I am done with whatever I am supposed to do with my life. There is something so profoundly sad as thinking you have wasted your life. Not that I think my life is a total waste….but that I want to do something more with whatever time I have left.

I just do not know what that is or how to accomplish it. I hope I will figure it out.

I wish everyone a blessed New Year.



New Diversity Role


Just when I think things at my job are going to crap and that I need to do something else, the spirits come together and things change. I am the type of person who works for a purpose.  I do not do well when I feel I am not doing something that might make a difference either in the workplace or community.

Where I work just went through a big change. Our CEO, VPs of Finance, Clinical and Quality are all new, as is most of their staff. Our Corporate Compliance officer is new. We took over a small homecare agency and have whittled their management staff down to five. We changed our team structure and how we do our daily operations. The last year has been one of transition and uproar including decreasing our workforce significantly. They let three of the directors go and only replaced one. I felt very vulnerable all year as I watched peers being downsized. Budgets were cinched and hacked at. It was an environment of uncertainty and I was not sure what the future was going to hold for me.

My education program has grown. I was allowed to hire a part time instructor at the end of the year. The position had been open for over a year with no bites. Now I have the perfect person who seems to do a bang up job. But most of my staff is very self-sufficient and I try to instill empowerment to grow on their own and take up causes, which they do. They are well thought of and often the resource of knowledge on many things. I have nothing to do with that, they are just amazing.

After three years, the company finally understands the power of blending learning and using the on-line training system I have built. Although I am sole proprietor of the program, it is still not enough to make me feel useful. The last couple of years, I have abdicated from committees because of one person in the company. She finally was found out and fired last spring. I also completed the Lean certification process and I am only the second person in the company certified as a practitioner. But even that is not satisfying.

I have three more years until I can retire. I figured I would keep my head low and wait it out, even if I was bored.

My biggest passion is to work with the staff to learn to become empathetic and compassionate. I have brought in great instructors and currently have someone teaching compassionate care in our orientation program. We had a meditation class too, but that instructor moved on to open her own coaching business. I tried bringing alternative therapies approaches, but even that met dismissal from the old VP of Clinical. I am going to start again to work on programs as now they are looking for them and accepting them.

For three years, I was the facilitator for our Patient Family Centered Care program. At one time, that was very big within the company, but as the years went by, the focus was on trying to save the company financially and overhauling Leadership. PFCC went down the tubes. Now, we have a new VP who sees how the visit experience is as important as the clinical portion and has set up a new committee and asked me to sit on it.

On Friday, we had a meeting that I was dreading with a group from DSRIP which is a State Medicare funding group. We had submitted a survey about our Cultural Diversity and Health Literacy programs to them and it was not a good result. We looked terrible in our diversity training and practices. I figured I was going to get hammered and left hung out. The CEO, all the VPS and two other directors were in this meeting.

AS I sat down to the table, I kept my head down and waited for it to begin. I sort of recognized one of the gentlemen, but I was not sure. As we went around the table, at his turn, he started with “HI Jane, it’s good to see you again.” At first I was unsure, but then realized he had headed up a committee I was on at the University. He is the nicest gentleman, and brilliant. The fear was gone. The discussion started and my turn came to share about our existing programs. I explained much of what I teach in my Cultural Diversity Class and other classes. On the survey, the VP had answered we did not do any Cultural Diversity training and I do not know why she did that. It was not true at all. Dr. Byrd smiled at me and said, “I knew you had this covered.” You should have seen the faces of the others, especially the VP who filled out the survey.

After we talked, they (DSRIP) talked about what they will be doing to help us grow our Diversity program more. But one of the things they require is someone to be the Champion for the project. I figured that the VP who filled out the survey and who is now heading up the Patient Experience was going to speak up and say she would be that person. It would be something she would have done, but Dr. Byrd, looked at me and just told the board it was going to be me.

So now I am the Champion of the Cultural Diversity program at our company. Our Mother Ship, the University Medical Center, has also just jumped on the Diversity wagon and has formed a big coalition and program there. It is timely, especially now with all the hatred and blatant ignorance which seems to be more and more condoned by people.

I am up to the challenges that come with this. I am excited to be working with Dr. Byrd again. There is funding and expertise that comes with this affiliation so I am not going to be working under a dire budget. But most of all, I feel like I can have an impact with this. This project is not the same fight of the 60’s and 70’s with just discrimination being the main focus. It is about educating people about the differences we all have and becoming inclusive. It is about being aware, compassionate and even a tad empathetic when working with our patient population and also within our workforce. This brings me back to the reasons I took this job.





Risky business


If you knew that doing one thing in the hopes of a better situation would automatically cause another difficult situation to occur, would you take the risk. If you take any form of medicine, you do that daily. There is not one chemical drug out there that does not have some risk when you take it. They even put this in writing now on the drug pamphlets that come with the prescribed drugs. “Your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects.” Are you willing to take those odds?

Sometimes there is no choice. You have to live with the side effects. I have gone through a series of drugs and have come up with some real doozie side effects. I took a drug and after four days it covered me with painful hives from head to toe. The answer from the doctor was stop taking the drug. But I was taking it to fight off an infection. I have gone through three major biologics and now a pill for my psoriatic arthritis in less than a year and half. I reacted to one with blood pressure readings that were stroke level. “Stop the drug.” The next one put my glucose over 350. “Stop the drug.” The newest one causes incredibly leg cramps. But I am sticking with it because it is helping my arthritis and my skin is clearing. But I only take half a dose.

In my research to find out more about the side effects of the Otezla I started reading about natural remedies. I have always preferred a holistic approach to my wellness. I have dabbled in alternative medicine now for years. I even worked with a homeopath, but got concerned with the lack of certification requirements for that approach. I have participated in energy therapy training. I have been interested in green medicine or herb tinctures for years.

I have been learning about Ayurveda medicine and find it fascinating. There is so much about it that it makes great sense to me. I like that the practice really delves into the body makeup and the whole person from the on-set. I have never had a doctor ask me if I like or tolerate spicy foods. But in Ayurveda, everything about you from the foods you eat, to how you relate to the world is important and part of the symptom management.

What started me looking was the horrendous leg cramps I was getting. I also noticed I had an eye twitch and was experiencing sleep issues. The solution was magnesium. I have been taking 400 mg at night and the leg cramps have all but gone. But I was also waking up in the middle of the night with anxiety attacks and only sleeping for four hours or so and not getting a good night’s sleep. I added melatonin for sleep but I was worried because you are not supposed to take melatonin for long periods of time. I also started to have really bad nightmares.

In my research I came across an herb that is supposed to be a wonder remedy. Everything I have read about this herb is amazing. But I do not go by the ad information; I go to patient user boards and medical evidence based journals. What I find amazing is that this herb and so many have been around for thousands of years. You want to talk about evidence based time studies. We do not have that amount of prescribed time on any man made drug. Right there is reason to get interested.

The herb I am trying is Ashwagandha (Withania somnifera). It proposed to do so much for so many areas of wellness, many symptoms I experience. It helps with sleep issues, boosts the immune system, can lower blood glucose and also blood pressure. I encourage you to look it up because there is a lot out there on this herb and I do not want to sound like an ad.

I am fascinated with the possibilities of getting off as many man made drugs and all their rotten side effects as I can. When the drug I took that raised my glucose A1C to 9.3, the remedy was to take another drug at night to bring it back down. The second drug costs $421.00 a month (without insurance). It can cause pancreatic cancer. Wahooo…. Just what I want. I truly cannot tell if it lowered the levels, or getting off the drug that caused the higher level is what is lowering the levels. I would have to go off it and see what happens. Another risk, but I think I have to try it. I cannot take certain cheaper meds like metformin because my kidney was compromised years ago when I was prescribed a pharmaceutical nightmare. This is a never ending circle that many folks get caught in as the body ages and they start taking more and more drugs to feel better.

My cholesterol was normally low most of my life, again surprising the doctors. It has steadily increased over the years to the point of being 238. My doctor wants me on a statin to bring it down. I tried it and had an immediate reaction and said no. I started taking fish oil religiously this winter. My last lab showed my reading at 188. I dropped 50 points in two months with taking the fish oil which costs nothing. My husband also got off his prescribed statin and took fish oil and lowered his back down significantly as well. Fish oil has no side effect and is a cheap OTC solution.

The issue with non-prescribed and non-regulated herbs is dosage and interactions. A prime example is teas. Chamomile is a very popular one for calming and sleep. It can significantly thin your blood if consumed in quantity. What is that amount, I do not know. Many herbs and minerals can become toxic to the body and do more harm than good if taken in large doses, and that matters by the individual. If the government steps in to regulate this area of health, the cost will skyrocket. The Ashwagandha could possibly aide me in getting off two drugs, cost together over $650.00 a month (uninsured). A bottle of 60 capsules cost me $16.50 and that was a high end product and an expensive store.

I will share with my GP doctor next week when I see him my viewpoint on delving into more natural remedies. He is going to be surprised with the lab results as my A1C dropped over two points also in two months. He is a young Indian doctor and we have talked about natural remedies. I am not sure if this is a conflict of interest for him, but I want him to be aware. He did not prescribe the arthritis medications and was upset with the reactions I was having.

I also want to be clear that your wellness is a team effort. Unless you are a doctor, self-prescribing can be dangerous. But I also feel very strongly about forced care plans. I am very warry of any practitioner who promises the world or threatens patients who they deem non-compliant. “If you do not take this medicine I will not see you.” But patient centered care is my vocation and a whole other topic.




The wonderful world of medicine; the crappy customer service

pink clouds 8-15

This post is going on a website for patients who have Psoriatic Arthritis. I am always trying to do advocacy for educating people about this disease, so I thought I would post it here too. Even practitioners do not understand PsA. Everyone thinks it is the same as osteoarthritis and it is very different. This disease attacks more than just joints like knees. It causes deterioration in places like your toes and spine. I have it in two places on my spine. But it also makes you depressed and feeling malaise. Part of that is losing your mobility and part of it is the chemicals of inflammation. But the arthritis or inflammation spreads to organs causing bad inflammation in them. If there is an “itisis” I have had it, pancreatitis and diverticulitis included. I had to have my gallbladder out because it became inflamed.

I am so grateful that there are things I can do to get better. Ten years ago, there were not so many choices for people who have Psoriatic Arthritis. Now there are many new medicines out there. I have tried many and Enbrel was my lifesaver for over 6 years. But my system turned on it and the biologic became impotent for me. I had to come off. I was able to do just about anything I wanted while I was on the drug. The really bad side effect for me was weight gain and charlie horses. I had charlies so bad and often at night that I became afraid to move. In sleep, I would clench a muscle and off it would go. But I kept giving myself my injection. I was in remission for several years.

Almost two years ago now, my doctor said I needed to switch. I went on Simponi. The drug scared me because it was so fragile. It had to be kept at a certain temperature and could not be shaken. One time they shipped it and the idiot delivery person put it on a porch where I could not see it. We never use that entrance in the winter. He had to climb up a very snow covered stairs to deliver it and it was hidden. The drug froze. It cost over $1500 a shot. I was on that drug for about ten months. It did not work great and I noticed I was having more trouble walking. It was like my hips joints where filled with silly putty. But my skin and scalp remained clear. I have psoriasis also.

Then in August, my blood pressure was way out of line. I had it read after I came back from vacation and the shot had been in me for two weeks. At that time it was 165 over 92. I felt terrible. My blood pressure is back to a consistent 120 over 80 or less. I also was having a reaction that I did not know was from the drug but when I stopped taking it, the reaction stopped. I was having horrible bowel issues to the point I could not drive to work without panic and on occasion having to stop in a park to relieve myself. My lowest point was once on the way in, I was in super trouble and I had to stop. There was a sheriff sitting in the parking lot. As I ran to the bathrooms, I found them locked up. I had to run to the other side of the building and squat. I did not know what I would have done if he came around. I probably would have gotten arrested.

The doctor took me off of that drug and put me on Cimzia. I was off everything for three months when I finally got the Cimzia shots. This was a real mess. I had to take two syringes and stick them in to my gut. That was not the hard or bad part. It really did not hurt at all. I am too fat for it to hurt. Within a few days, I had gained over five pounds. Nothing changed from what I was eating. I felt really funny, too but could not tell you why. It did nothing to help me either. Two weeks later, I took another series of shots. I felt instantly terrible. I was shaking, my mouth was dry and I was dizzy. I also continued to gain weight. The next day I took a glucose reading and it was 368. Oh crap.  I continued to monitor my glucose and it never went down below 250. It was very unusual for me to have supper high sugar. Anytime I ate something with sugar in it, my levels would sky rocket. One time I have a small piece of a Swedish Christmas coffee cake someone sent me. It was loaded with sugar and my reading was 385. I stopped consuming anything that had sugar. I stopped all bread and starches and anything with high carbs. This was Christmas when I normally bake and make cookies. I did not. But I also could not enjoy all the festivities going on either. It was very hard.

Eventually, in January I saw my GP and he put me on a low dose of Januvia at night. The bad side effect of this drug is insomnia. I wake up in the middle of the night and have anxiety attacks. I take a melatonin now and that seems to help and I sleep through the night. It has taken four more months but my glucose readings went back to normal. I still watch what I eat and I have learned to not miss bread so much. It was a pretty scary experience and you feel helpless when your sugar is uncontrolled. The one thing I do not want to add to my diagnosis is diabetes. But I stopped the Cimzia completely. I lost the weight which reached 11 pounds in one month.

I finally got in to see my rheumatologist. He was cool about it but also not overtly sympathetic. My skin is erupting and since he is a teaching professor, he always has a student with him. He was using my skin to show her how I have two different types of lesions. This was an issue early on because they had a hard time diagnosing me. But I have scalp and plague and inverse psoriasis, but I also get little red dot covered circles that look more like measles. I was actually diagnosed with Psoriatic Arthritis first.

My rheumy prescribed Otezla. At this point I am ready for anything. I can hardly walk for more than a short distance without pain. My knee gave out the other night. I was just standing in the kitchen and whomp; I almost went to the ground. I cannot sleep more than four hours before it becomes painful. I am tired cranky and turning into a lizard. I am ready for some help.

I saw the doctor on 2/19. He prescribed the starter pack and the maintenance Otezla. I can see it in the system we have called My Chart. About 7 days later, I emailed the office and said, hey, what is going on? They never put the prescription through. The Dr. also wrote it for  a small pharmacy that I use for normal drugs. This is a specialty drug and I use a specialty pharmacy. They apologized and sent the prescription out again and to the wrong pharmacy AND they never submitted it for approval or authorization from my insurance company. I had to call everyone back again. Finally the authorization  came through and I called the still wrong pharmacy and sure enough, they do not fill that level of drugs. So I email back to the Dr. office and then two days later they sent it out to the specialty pharmacy. I called the pharmacy and ….they need to get authorization and other verifications. This was Tues, March 1. Every afternoon, I called them and they said the same thing. They were checking on it and would expedite it, almost word for word. Friday I was at my wits end and again, they gave me the crock of crap about expediting it and would call me back. I never heard from them. This is day 17 and no drug.

Meanwhile, the inflammation had spread again into my bowels and I had a horrible weekend now capped with a major diverticulitis attack. I was so bad I thought I was going to have to go to the hospital. I will have to be careful what I eat and hopefully it will calm down. I have never had it so bad that I was passing blood. And all this is because of the inconsideration and lack of follow through from the Doctor and his staff to the pharmacy. No one cares anymore. I cannot imagine if this was life threatening and they were screwing around with the prescription what would happen.

I am also angry that I have this disease. I am angry because I want to be able to move. It seems incomprehensible that 17 years ago I was playing tennis three times a week and mowing my lawn and other physical activities. I have great hopes for this new drug, and also great fear. It causes diarrhea big time and depression. Yeah! But it also causes weight loss. I am not too worried about the depression because if I can start to feel better, I will be much happier. It is also spring and I am always my most cheerful then. The symptoms get better as your body adjusts. I am grateful for the hope of a better future with this product. I hope I am not being naive.

I can’t get no satisfaction


My thoughts today are a reflection in respond to a friend’s blog who is going to be about the overkill of patient satisfaction and the impact on the cost of medical practice. I was going to use the link to an article that she used to explain where this discussion is coming from. However, the article is not substantiated and does not use cited resources or even verified statistics. It is claptrap.

Patient satisfaction in health care has become the elephant in the room. The problem is now the government has stepped in and will (and in some cases is) attaching a numerical reimbursement rate based on a scoring. The scores are based on patient’s answers from a survey. Statically, it is proven, more people will respond to a survey if they have an emotion attachment to the outcome. In other words, if you’re pissed, you are more like to answer the survey. To that, the opposite is should be true and it is to some extent. I get the survey results and tabulate them for our agency. I would say that most patients are satisfied with our services. But in order for the survey to be counted towards reaching the mark, the patient has to give a 9 or 10. I personally very rarely give a 10 for anything. But if the patient is pissed, we have to do cartwheels to resolve the issue. And that negative score is going to cost us revenue someday in a climate where the government is already trying to take back as much money as they can for reimbursement.

It does not matter to the government that the patient had dementia or was giving a diagnosis which has caused them to be pissed at the world. Some surveys come in with all the answers with terrible negative responses until the last two where they answer we are the best and would recommend us. Clearly, they do not understand the survey. Also, we teach that a score of ten on a pain scale if horrible, the worse pain ever. BUT the government in its stupidity makes a ten the best answer on the survey. No problem there. We are not allowed to teach using the survey to the patient so we have used a discharge checklist with similar language to remind them of what happened with our service. The survey can come at any time, but often after the patient is discharged and has forgotten how bad they were when we started working with them. The whole process is stacked against the agency, hospital or provider.

The survey does not measure things like the environment of care, the caliber of the care…or in other words was the patient a complex visit which is much more involved, or even the overall health of the patient to begin with. It does not measure the attitude of the patient in general. If the patient is not one who is taking care of themselves to begin with, medical care is just another intrusion.

Having said all that, patient satisfaction is critical to the wellness or the ability of the patient to get well. Health Care is reforming and the responsibility of care will be more on the patient. If the patient views health care systems and all the clinicians as something to fear, or they come away from a service angry or upset, be it a hospital stay or a visit to a practitioner, it impacts their wellness. It keeps people away from the care they need. Bottom line, most people will not subject themselves to something not pleasant until it is a desperate situation. And then the cost for the care is more expensive. They are not going to keep appointments, which costs the practice lost revenue. They are not going to listen to what the prescribed recovery entails and they will be non-adherent. And often that ends up in a hospital readmission which then costs the hospital more as they get dinged for those by the government. And that all drives up medical costs more so then having some person in-charge of patient satisfaction.

Locally, our Patient and Family Centered Care practices came about when the Chief Medical Officer of the largest hospital in the area had a bad fall from his bicycle. He ended up losing all senses from his neck down. He said the one thing that made his initial situation tolerable was when a nurse offered to wash his hair for him when he was in ICU. He said because it was the only place he had feelings, so her touch was critical to his healing. The power of simply touch and caring had such an impact on him that once better (he recovered much of his abilities) he made it a major initiative for the whole URMC system. The fervor died down over the years, but there still is a PFCC unit and all employees of URMC and the affiliates still train on the principals and work hard at giving the best service possible to our patients.

My point is that until you experience a personal situation of being the patient, it is very difficult to understand how necessary it is to continue to have patient satisfaction an important part of health care. I feel there are way too many caustic and omnipotent clinicians out there that do more harm than good with their arrogance and judgments. The cold impersonal care of clinicians with too much on their caseloads drives up the cost of health care. Unfortunately, it is hard to statistically prove that because they produce high volume revenue. It’s hard to find the losses if their numbers look great.

And that is the problem with health care in general. It is all numbers. It is the flaw with patient satisfaction scores. “I did not like my doctor telling me something I do not want to face so I am going to give him/her a lousy score.” This in no way measures the clinician’s ability to do good work. And yes, there is a cost for providing good customer satisfaction as the article explains, but there can be overkill on anything. I do not think that it is the general case and that we actually have a long way to go to improve the patient experience.

This is the link to the good doctor’s blog. https://doctorly.wordpress.com/2015/04/25/closed-door/