I’m Kate Dewhirst.

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4 lessons I learned as an undercover patient

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Ok. I wasn’t really undercover.  But I was a patient.

I spent five days in hospital last week for a surgical procedure. I’m sore and hobbling around now.   While I was in hospital – I learned a lot about being a patient.

In my normal day to day life, I give legal advice to health care organizations. I write policies and posters and consent forms.  I am asked by health leaders to help them respond to patient and family complaints.   I help health care teams de-escalate disruptive situations.

Last week, I found myself occupying a different vantage point. We who work in health care need regular reminders that our experience of the health care system and a health care organization is shaped by our own lens – what we observe, experience, feel, receive.  To be honest, I knew these lessons before last week – but I find I need to be constantly reminded that the patient and family member perspective is not the same as the provider perspective or my usual advisor perspective.  We need to solicit all perspectives if  we are to advance our health care missions.

Here are four things I relearned and some practical tips your health team can implement to support your patients…

Lesson 1:  Patients feel vulnerable

It seems trite to write that patients feel vulnerable.  But they do. We do.

I am the most privileged human being who will ever be a patient.  I am white. I am an adult. I speak English.  I have family support.  I am cis gender. I work in health care and understand the language and the system.  I have family and friends who work in health care. I have financial means.   I am a formally trained advocate. Yet, even with all my privilege I felt vulnerable as a patient.

Even I silenced myself and swallowed my questions and comments when I thought the care providers were busy or disinterested and in some cases actually perturbed.  Eventually, I made sure I had all my questions answered. But, that took extra effort on my part. I witnessed many of my co-patients fail in being heard.

We in health care must remember there is always a power imbalance in every clinical interaction. The people who present for care are not in their normal environment, they are not familiar with the basic surroundings, they do not understand the lingo. Patients are often in pain or scared or worried or frustrated or confused or busy or any combination of those.  Some patients experience day-to-day systemic disadvantages and overt and covert discrimination in their health care experience.

To deliver safe and effective care – which is every health team’s primary mission – we need patients to be their own advocates, to understand information related to their treatment and recovery and vocalize early problems or concerns.  We have to remember that patients do not know how to do this in the most effective manner. They ask the “wrong” way. They may be irritable. They may not ask at all.  We need to foster environments and teams that create safe places for patients to speak, ask, raise concerns and actively participate – not just surrender.

Health Team Action: Talk about vulnerability in your team. Talk about your own personal experiences of vulnerability and when you did not feel safe or confident to ask a question or raise a concern. Talk about the environment and types of questions that put you at ease or assisted you to self-advocate.

Lesson 2: Peer support and learning is invaluable

I spent five days surrounded by 70+ others who had also had surgery.  The peer support and information grapevine was very different than the formal organizational messaging. Peers reminded me to drink prune juice to avoid constipation. Peers two days ahead in the recovery journey explained the path I could expect – the good and the bad, the things to do and the hard lessons to be avoided. Peers told me where to find the cookies. Peers commiserated with the early wake up calls and the first sneeze. We literally laughed and cried together.  Peer support cannot be delivered by your team. It only comes from lived experience. It is imperfect and some of the information is frankly clinically incorrect.  Accuracy is not the point. The value is the shared human experience.

Most health care organizations now focus on facilitating peer support. You may do this by running group sessions, providing informational classes, facilitating on-line communities or through on-site peer leaders or your environment may by design co-house/room patients on the same journey. These efforts can be complicated and challenging. There are “risks”.  I’m often called upon to discuss the risks with my clients. And despite the risks peer support is worth the effort.  From a patient perspective there is no one who can support like a peer. It’s not the only support we need – but it is invaluable support.

Health Team Action: Consider expanding your peer support options using some of the examples above.  

Lesson 3: Patients need even more information

I received excellent written information as part of my pre-admission, admission and discharge. I was impressed. Many of my questions were answered and it was extremely helpful to have in writing as a resource. It was also not enough.

As a patient, I noticed that the team shared verbally additional content nowhere to be found in my handouts. Good stuff. Important information. They shared information I was supposed to remember and there were things I was supposed to do and things I was absolutely never to do – but did not see repeated in the written materials. So when I promptly forgot – and asked questions – I was told “we went over that in your orientation” or “that was explained by the physician” or “Hmph. As I told everyone, the office is down the hall, look for reception, go up the elevator to the top floor, and turn right.” Patients forget.  We don’t do it to frustrate our health care team. We legitimately do not remember more than half of what you tell us.  If it is important or if it will improve any aspect of our comfort to remember it, please write it down or ask us to write it down.

Where are the schematics? Imagery? Where is mapped out patient journey? The high level overview of what patients can expect? As patients – we love a visual representation of what to expect.  Add lots of disclaimers that the journey can vary from patient to patient.  As patients, we understand that there will be complications and every one is different. But it strikes me every time I have a health care appointment that the team has seen thousands of “me” and there must be a  typical path or range of typical experiences. It would really help to have the bird’s eye view of the patient journey.

Health Team Action: If you do not have patient handouts – consider developing something. Keep your patient handouts up-to-date.  If you find your team has added new content to the orientation or consultation or conclusion conversation script – add that content to the patient handout.  Use your website to communicate FAQs.  Routinely ask your patients what they wish they knew before they started their experience with you and add the answers to your materials.  

Lesson 4: Patients need kindness

Like in any customer service industry, patients connect good care with kind care. Patients feel they received substandard care when team members are rude or dismissive or disinterested. I call this the “detached team member” experience – and patients can feel it a mile away.

It presents in many forms.

  1. Some team members sigh or express frustration with routine inquiries from patients or family members.  (see lesson 3 for a solution – if people always ask – write it down!!)
  2. Some team members deliberately do not make eye contact or acknowledge patients when they feel interrupted while completing an important non clinical task.  They do not think to say simply “I’ll be with you in just a second”. They exert power through silence.
  3. Some team members loudly and frequently discuss in detail their personal issues, diets, dating stories, and frustrations about team members within ear shot of patients.

Health team members are human beings and their co-workers are their friends and confidantes and nemeses. But remember, patients are listening and vulnerable.

Health Team Action: Keep co-worker personal conversations short, positive and friendly. Vent in private areas where patients cannot overhear you.  Remember that small gestures of acknowledgement, kindness, civility and compassion can make a significant difference in a patient’s experience.

Culture is everyone’s business.

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