For Patients, Sometimes The Smallest Gesture Makes The Biggest Impact

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The Power of Touch and Human Connection

Recently I was scrolling through my Twitter feed and saw this story from a friend and colleague that read: “Something to warm your heart while waiting for spring to arrive. Watch this video and start your day with a smile.”

How could I resist clicking on this video?? I was certainly in need of a good story to start of my day.

The video was about a longtime volunteer at New York-Presbyterian Hospital who is part of the “cuddler” program in the Neonatal Intensive Care Unit.  She holds and cuddles the smallest babies to give them comfort and love when their parents are not around. Not only does she touch them but she talks to them, sings to them and emotionally connects with them. My friend was right, this story did warm my heart and put a smile on my face.

This video will make you smile

But it also got me thinking…..

If we know there is power in simple touch, as research has shown, then why is touch so lost on us as we move into adulthood. If we know there is power in feeling connected to another which results in helping people relax, decrease anxiety/stress and potentially lessen pain, then why do focus more on babies than on adults in healthcare?

Is it that adults grow out of the need for touch and human connection?

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I know for me, connection is important. I told a story in my last blog about my interaction with the person sitting next to me on the airplane on a flight back from Europe. What I didn’t mention is I can often be a nervous flyer. Our conversation, our connection reduced my anxiety about flying, significantly. As we talked to each other,  we often tapped each other on the arm as we were talking. I believe that simple tap on the arm built a type of trust and safe feeling and lessened my anxiety. 

Research has also demonstrated the effect pets have on their owners and their health. We cuddle with them, we hold them and in turn we feel really good. Pets have been shown to calm anxiety and stress and I have already told my husband “I need a dog for my health (and possibly a second one to double the effect).” I really believe my dog calms me. All I have to do is touch her, pet her and I can feel much of my stress melt away.  She always makes me smile.

 

 

 

 

So back to my point. I do work in healthcare and specifically in the area of improving the overall healthcare experience for patients. Recently, I attended and presented at the The Beryl Institute Patient Experience Conference. The meeting brought 1100 patient experience professionals and patients from 20 countries around the world to talk about how to make the patient experience in healthcare better than it is today.

What I know to be true is healthcare is complicated for patients and hospital staff alike and the human connection is often lost, on both sides, which can lead to a negative experiences and increased stress. How many times have you gone to the doctor, a clinic or hospital and felt that things could have gone better?

When we are sick, we are often frightened and vulnerable. I know the feeling all to well, remembering so many instances in my own healthcare journey. Being told that I had cancer, while I sat in the chair all alone, not once but twice. Both times my heart was beating out of my chest and the distress I felt seemed insurmountable in the moment. I wonder if someone had taken my hand, a simple calming touch, if that would have helped relax me in the moment?

I remember countless times, lying on a stretcher waiting to be wheeled into a scan that would determine the extent of my disease and I was scared out my mind, again, alone in the moment. Just a squeeze of a hand may have melted some of the that anxiety away.

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I have been a long-term patient for almost 29 years and have had both good and bad experiences. What I know for sure is I remember how I felt in both the good and the bad. I remember telling my chemotherapy nurse, who I spent the majority of my time with, as treatments can be long and quite grueling, how I would always remember her, she would always be embedded in my life.  She laughed it off and said “Oh, you won’t remember me years later when you are back to your busy life.” She was so wrong. We had spent hours talking about our lives (hers and mine) and our hopes, dreams and fears.  We had these chats when I was most vulnerable and afraid. You don’t forget that, ever.

My oncologist connected with me as well on a personal level and 29 years later, I still remember his touch on my shoulder, melting my fears and giving me the courage and focus to do all I had to do to get better.

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People often don’t realize the impact they make on our lives. It can be the smallest interaction, the smallest thing that we can remember for years.

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In life, our personal connections can inspire us, energize us, comfort us and help us to forge on. This is not just about healthcare. It is about understanding that outcomes and our own mental health can often be influenced by human connection.

I am worried because in this #MeToo world, we may lose some of the human touch for fear of inappropriateness. I think that is unfortunate.

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I truly believe from experience that emotional connection with our caregivers is so important to our health and recovery. Today, there are many demands placed on physicians, nurses and staff. I do believe that patients are often more understanding of those demands than staff may believe. What we do want is that human connection, to be treated as a whole person. We want our families/caregivers to matter too.  We want to be listened to connected to on a personal level.

We need that connection the same way a baby needs to be held and nurtured.

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No matter our age we need nurturing and attention. A simple smile, a tap on the shoulder a short interaction can make the biggest impact on our lives and our wellbeing.

I would also argue that human touch doesn’t have to be actual touch, it can be sharing ourselves with each other, breaking down the walls between patient and caregiver and creating an experience a connection that both sides can embrace and enjoy.

David Linden, a professor of neuroscience at Johns Hopkins writes, “from tool use to chronic pain to the process of healing, the genes, cells, and neural circuits involved in the sense of touch have been crucial to creating our unique human experience. The more we learn about touch, the more we realize just how central it is in all aspects of our lives—cognitive, emotional, developmental, behavioral—from womb into old age. It’s no surprise that a single touch can affect us in multiple, powerful, ways.”

Life moves so fast these days and technology helps us move even faster. It is so easy to lose our most basic skill, that of touching one another (whether an actual physical touch or touching each other in a non physical way). We are never to old for a hug and understanding how the most simple gesture can be so powerful.

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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.

 

 

 

 

 

Wait Times Led Me To Patient Advocacy

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I’m David and I’m a Patient.

Unlike most of the other patients who have become actively engaged in efforts to improve healthcare, I don’t have a dramatic illness or medical error that activated them.  In fact, I didn’t even know I was getting involved or even that there was something to get involved in when I started.

I moved to a new geographical area and due to my rare neurological disease, I took all my care to a nearby teaching hospital.  In first several visits to a variety of different doctors for various issues, I had an average wait time of over an hour.  No one ever acted like there was anything unusual about that or apologized for the delay.  For my next few visits, whenever I was called and was asked how I was (to which I learned you were supposed to say fine even if it wasn’t true) I started adding, “it seemed like there was a very long wait today.”  The response I got uniformly from everyone was some variant of “we’re busy.”  It occurred to me that this was all about them, none of their focus was on me.

I had moved from a place where each desk in the outpatient facility had a sign on the counter saying, “ if you haven’t been seen within 15 minutes of your appointment time, please let us know.”  to a place with no communication and a response of “we’re busy”. For the last 32 years, I was always seen within 15 minutes of my scheduled appointment and now this was no longer the case, in a new facility. So, I found the email of the CEO and sent him a description of my experience, noted that this was clearly systemic and that I would be happy to talk to anyone about my concerns and to let me know if I could do anything to help improve the situation.

A couple of weeks later I got a call from a patient leader in the hospital asking me if I would like to join their patient and family advisory group.  At that point, I had never heard of patient advisors or of Patient and Family Centered Care but thought it would be interesting to see if I could contribute to some positive change.

Now, 12 years later, I have been fortunate to have become involved in the work of various different healthcare organizations from the local hospital level to major national groups.  In all that work, I’ve noticed three important things:

  1. Patients sometimes contribute to important changes – e.g. my average wait time in the last few years has been roughly zero!
  2. There are many organizations discussing and making recommendations for change without working together – and most of my experience as a patient has changed very little.
  3. The patient voice, while increasingly present is all too often drowned out by the professional’s voices.  The patient’s role in improving the experience requires clarification and amplification.

I often ask myself, what might healthcare look like if patients had an equally authoritative role with all of the others working on improvement?

We have started this blog as a venue for us (and others) to share their view of changes that we (patients) would prescribe to make all aspects of the experience better.

The time for shorter wait times in health care improvement has arrived and we hope to contribute a strong patient voice to the discussion.

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