How inefficiency and unintended consequences of legislation affect the patient experience

I am enraged right now. The only way I can contain myself is to write and hope that you will become enraged too.

This is today’s story.

I am the one person who has responsibility for the care of my elderly uncle. He has very little money, has autism and is almost completely blind, among other things. I live in the same state but in a different city about 2 hours away. He has a team of daily caregivers (through his healthcare plan) who come in and help him clean the apartment, shop for groceries, take a shower. I oversee his overall care and pay all his bills. I have Power of Attorney and a Health Care Proxy, both documents which have been sent to his case worker and the medical plan.

Recently, he had his eye removed after many attempts to relieve pain and stop an infection. He is scheduled for an appointment to fit him for a prosthetic eye. My uncle doesn’t drive and does not have cell phone. I have tried to equip him with a cell phone but because of his poor sight and other personal preferences, he has refused it. So, I do much of the coordination for him. His appointment for the prosthetic eye requires transportation and there is a number to call to set it up. Every time you call this number you are there are typically 8 – 20 callers ahead of you, so you are on hold for quite some time. After numerous attempts, I reached a person to schedule the drop off and pick up for my uncle, as I have done many other times before. This time, I did not have the pick time (wasn’t sure how long the appointment would last) so I was told I could call the doctor’s office to determine the length of the appointment and when I had more information I could simply call back and update the transport request.

I called the doctor’s office and the woman I spoke to was very helpful and accommodating and then I called the transport number to update the transport request. Each time I called there was a significant waiting time and sometimes while waiting, I was disconnected. Finally on my 3rd attempt, I was able to get a person on the line. I simply told her the updated time for the return trip.

She asked me my name and I told her my name.

“I am sorry. I cannot make any changes unless I speak to the patient.” she said.

I explained that I have made these arrangements regularly (just the other day in fact) and the new reservation was already set.  She told me she needed to speak with my uncle directly or I would need to send  a copy of the health care proxy to her office as well as other documentation.

“You need to send us the health care proxy in addition to a letter from the Primary Care Physician stating you are the health care proxy before we can make any changes.” she said.

Really? Really. Lets step back for a minute. The appointment is the day after tomorrow. The reservation is set. The return time is stated as “will call” and all I want to do is set the time to 3:15. That is it. The Health Care Proxy was signed and supposedly stored with the health care team almost 2 years ago, though I wonder why this is even relevant to a transportation request.

Why, why is this so cumbersome? What are we doing? What are we doing? Does this at all make any sense? The unintended consequences of health care privacy legislation is to make health care incredibly cumbersome for families and especially those with relatives who cannot advocate for themselves. This is just unacceptable and patients and families need to speak up if we want any kind of change.






The Patient Experience is the Human Experience

The Patient Prescription is a blog where patients can give their perspective, share their insights and recommend changes in healthcare.  We believe the patient voice is critical to improving the experience. So, when David and I were asked to participate in the Beryl Institute’s Patient Experience Conference in Denver last week, we were honored and excited to participate.

With over 1,000 participants from around the globe, the conference included caregivers and nurses, physicians and support staff, patients and families, resource providers and many others who are concerned about the patient experience.


We were asked to speak on a panel with two other patients about our personal experience and tell our health care stories. This was a wonderful opportunity to impact the conversation around improving the patient experience.

Click on the link below to view the two videos telling our stories.

Patient and Caregiver Video

Patient Stories Video

We wanted to share some highlights from our discussion.

Healthcare has changed dramatically over time. Today we have more choices about the care we receive. Developing a personal connection with your health care team is critical and if you don’t feel that connection you can find someone who you do connect with. Patients are becoming more empowered to advocate for themselves and expect better treatment.

trustcareA key theme on the panel was compassionate caregiving; doctors, nurses and other staff going above and beyond when treating the patient. The stories described physicians truly understanding and respecting the wishes, fears, and anxieties of the patients throughout their healthcare experience.

Patients want to be treated like people (not cases) with different goals and needs.  Importantly, family members are part of the equation and caregivers are often overlooked and not given the respect and support they deserve.


What patients want and what healthcare staff thinks they want are often not one and the same. Often communication is an area where things break down.  Good communication is critical for a positive experience.

Each patient’s experience is different.




To a patient, a healthcare experience can be life changing. I remember becoming so close to my oncology nurse and I think she was surprised by how much she would always be a part of my life, even decades after she had treated me.

Patient experience isn’t new (everyone has been a patient at some point in their life throughout time) but what is new is the idea that patients can partner with physicians, nurses and staff to help improve care and outcomes. The key is engaging patients to share their experiences, thoughts, and ideas by collaborating with staff who listen and understand and doesn’t make assumptions about what patients want and need.

The Beryl Institute’s Patient Experience Conference engaged 1,000 plus participants in this dialogue, created amazing energy and commitment around the discussion of integrating patient voices into the process of improving healthcare. Patient Engagement is important because research has shown, that patient engagement improves healthcare outcomes, quality, and satisfaction. It is clear that all voices matter as the healthcare experience is the human experience for patients, caregivers and staff delivering care.


Shari Berman and David Andrews are co-authors of the Patient Prescription Blog.

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What Do Patients Really Want? Change!

My name is Shari and I am a patient.

Chances are you, the reader, have had some experience as a patient or as a family member of a patient. If not, maybe you are a healthcare worker or a physician who has never seen the other side. This blog is for everyone.

Patients have their stories. The good, the bad, and the ugly.

We may complain about wait times or difficulties scheduling appointments or dealing with insurance plans and high costs of medical care but for the most part we put up with the difficulties we may face and move on until the next event that gives us reason to complain. Often the things we care about are different from what healthcare staff might think.

I have been through a lot. Sometimes I feel like a walking medical experiment. I have had cancer twice, and lost my mother to cancer. The older I get, the more friends and acquaintances I have that have medical stories that add to the mix. Over the years I have had hundreds of appointments, blood tests, scans and procedures.

When I left my career in financial services to raise my children, I knew I needed to find a way to use my professional experience and health experience to do something to give back. I did some work volunteering for various cancer organizations but it wasn’t until my mother was diagnosed with cancer and passed away that I became passionate about taking my experience as well as hers’ and working to improve the patient experience.

There were so many ways my mother’s experience could have been better if doctors had actually talked to her, listened to her and understood what was most important to her. She didn’t see things the way I did as her generation was taught, “the doctor knows best” and not to question or explore alternatives. But the truth is we should question and shouldn’t feel guilty about asking the questions and seeking out alternative solutions. After my mother’s death, I was pretty fired up and began to explore ways I could lend my voice and make a difference.

The reality is the medical environment is extremely complicated and tough for the average person to navigate. Many people will often ask me for advice because they are so overwhelmed. Medical staff also feels frustrated because of regulations and pressures that make it difficult for them to improve the patient experience.

I decided to formalize my advice giving, by volunteering my time and lending my personal perspective to various institutions that also are concerned about improving the patient experience. What I have learned is just as the medical environment is tough to navigate, so is the world of organizations trying to improve the patient experience. There are a lot of them and many seem to have the same goals and are not necessarily working collaboratively. There appears to be many separate silos.

Today, many hospitals and health organizations have started to include patients in the conversation around patient care. That is the good news.

The not so good news is just asking a patient (sometimes the same patient over and over) to sit on a committee or attend a meeting is not enough. Sometimes we speak, sometimes we listen and often our presence is a “check off the box” (a patient has been included in the meeting) rather than something truly impactful and leading to significant change.

And I wonder if patients (not involved in this work) really feel that the patient experience is changing for the better?

In my work, I have met many dedicated people who have become engaged in the patient experience discussion because of their own stories. Many of us would say we are at a point where we have to come to realize that we appreciate being invited to the meeting and lending our voice but we often leave the meeting feeling helpless and unable to move things forward and actually making change. We often wonder if people are really listening to us?

Bottom line is we want to make change and not just talk about it, with no action.

This blog gives us an opportunity to take a little bit more control and share what we have learned but more importantly prescribe change, from the patients’ point of view that is desperately needed.

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