Are You Your Own Health Advocate?

I recently read a post saying, “Health care isn’t just changing, it’s growing more complex every day.” 

My hairdresser spent most of my last appointment venting about not understanding what was going on with her mother who has memory issues and couldn’t repeat what the doctor had told her.  She was also frustrated after a personal visit because her doctor had told her that a medication would be prescribed for her, but it was not done.  These are not unusual complaints, but they do reflect that this is a new day.

Take an Active Role in Your Care

The time has come for us to take an active part in the management of our own health care.  This does not mean that you do your own diagnosis and treatment (in fact I would strongly advise against that).  What it does mean is that you must assume an active role in providing your care giver with information about your health issues so that they can do the best job on your behalf.   It also means that you need to make sure you understand what your caregiver is saying and planning for your care.  The more you comprehend the better equipped you will be to advocate for yourself. 

Why is Self-Advocacy so Important?

Self-advocacy can be defined as the action of representing oneself, views, and interests.  You may think that you need to know medicine to self-advocate, but what you really need to know is how to effectively communicate what is going on with you in your own body.  Your health care providers don’t know what is going on with you unless you tell them.  I once knew a provider who said, “If you want to know why the patient is here, just ask them.” 

This is a good rule of thumb when the patient participates; however, I don’t know how many times I have asked a patient, after introducing myself, “how are you?” and received the answer, “you tell me”.  This type of response assumes zero responsibility and can waste valuable time while the provider must dig for information from a reluctant patient.  The truth now is that you must become your own health advocate and participate in your care.

Prepare Yourself for Your Next Visit

The first and easiest way to be your own advocate is to prepare yourself for your next clinical visit.  It is helpful to know that MD’s and NP’s (also referred to as PCP’s or primary care providers) now largely work in groups and must keep to a rather tight schedule.  Consequently, being on time for your appointment impacts the quality of your care.  You are more apt to receive full attention if you are on time and the PCP doesn’t have to be thinking of the next patient who may be waiting because you were late.  Conversely, it may happen that you are on time for your appointment but have to wait.  If this happens, most PCP’s will apologize for the delay when they come into the room.  While you may feel frustrated about the wait, it doesn’t help your cause to be hostile. It will serve you much better to acknowledge their apology and to express any concerns you may have about your schedule in the event you have other commitments and need to make a new appointment.  However, assuming you can stay, do not accept having your visit shortened because they were behind.  Make sure all your issues are addressed and that you have no further questions before you leave.

Make a List and Ask Questions

You must know yourself and how to get what you need.  Be assertive, not aggressive.  Report symptoms only and don’t try to self-diagnose.  A very helpful tool in preparing for your exam is to make a list of questions ahead of time because I can guarantee you won’t remember everything once you get into the appointment.  Make sure the provider answers your questions.  If they use medical terminology that you don’t understand, then ask for explanations. 

Communication Tools Available to You

Most providers will be typing your history, complaints, symptoms, and plan of care into a computer during your visit and will provide an “after visit summary” which documents briefly what was said and done.  If they do not provide this summary, you may request one.

You will likely be provided with the opportunity to sign up for the online service called “my chart”.  This is an excellent way to communicate with your PCP, so it’s important that you take advantage of this service.  If you feel a need to speak to someone personally, it works best to call the office and ask for the nurse or medical assistant.  These people are much easier to reach and are in close communication with your provider, so you are likely to get the fastest response.

Seek Advocacy when Needed

All this being said, I do not underestimate the complexities of the health care system and the communication challenges that it often presents.  If you find yourself confused, you may want to consider a patient advocate.  Such a person may be available through your providers office.  I also offer this service and may be contacted privately through my website and will answer an initial inquiry free of charge.

The bottom line is that your PCP does care about you, but you can no longer be a passive recipient.  Health care is a team effort, and you must be part of the team.

You can reach me privately at info@ruthacookdnp.com

Are You at Risk for PTSD?

Several years ago, I was working on my final project at the University of Washington which was required to obtain a DNP (doctor of nursing practice) degree. My topic was PTSD (post-traumatic stress disorder) As I did research into PTSD, I came to realize that it was primarily thought of as a problem experienced by soldiers who had been exposed to combat situations. However, the medical definition of PTSD is not limited to those in the military. I was working in an orthopedic hand clinic at the time as a Nurse Practitioner. We saw many patients with the diagnosis of “mangled hand injury” and realized that PTSD was a potential problem with these patients. Mangled hand injury sounds terrible, and it is. However, it is a medical category used for persons who have sustained severe injury such as a blast, a crush or an amputation. I was concerned that the orthopedic hand clinic where I was working might not be identifying all of the patients at risk for PTSD who presented with this diagnosis. It is this group on which my study was based. The Diagnostic and Statistical Manual of the American Psychiatric Association states that the first criterion for diagnosing PTSD is that the person has experienced trauma. The severity of the trauma is NOT included as a diagnostic criterion. The APA divides the symptoms into four clusters:

1. Intrusion (re-experiencing the event)

2. Avoidance (not willing to think about the event)

3. Negative alteration in cognition and mood (behavior changes such as anger, withdrawal)

4. Alterations in arousal and reactivity (acting out in anger, over responding to stimuli)

Additionally, there has been research which suggests that PTSD actually changes the brain in a measurable way. A study of 17 adult patients (Aaron er al. 2011) showed activity in the amygdala, which regulates emotional responses to trauma, was enhanced in PTSD and was been shown to correlate positively with anxiety scores and PTSD symptoms. It has been further suggested that up to 40% of civilians who experience civilian trauma experience PTSD in the first 12 months after injury.

Recently, I was consulting with a patient who had sustained a wrist fracture. It was a fairly severe fracture which required surgery and metal fixation to restore the normal anatomical position. There were several clues, even at the beginning, that she might be developing PTSD. She had a claustrophobic feeling about the splint which was initially applied and felt it might be too tight. She worried about the fact that her fingers were swollen, but most troubling was the extreme pain which she experienced. Pain has been found to be associated with increased levels of traumatic stress symptoms and is a primary risk factor for PTSD. Her pain was so severe that she required a period of hospitalization after her surgery for pain management. She continued to have problems tolerating cast immobilization which persisted until the cast could be removed. The most concerning thing, however, was that she would wake up in the middle of the night screaming (referred to clinically as sleep terrors). It was at this point that I decided to ask her the following four screening questions which I had located in the literature while doing my study:

1. Have you had nightmares about the injury or thought about it when you didn’t want to?

2. Have you tried hard not to think about the injury or went out of your way to avoid situations that reminded you of it?

3. Are you constantly on guard, watchful or easily startled?

4. Have you felt numb or detached from others, activities, or your surroundings?

A positive answer to 2-3 questions would have been enough to suggest that she was at risk for PTSD and should see a therapist. She answered “yes” to all of the questions.

Armed with this knowledge, she was referred then to a therapist by her surgeon and diagnosed with PTSD. She is currently under treatment and seems to be doing well. She is no longer experiencing sleep terrors and is less fearful. The message here is clear. Ask yourself or ask another the four questions listed above. They came from a rigorous and systematic study which was scientifically evaluated and proven to be effective in identifying anyone at risk for PTSD. If you answer “yes” to 2-3 questions, ask your medical provider to refer you to a therapist. It is very important to identify this problem at the early stages of recovery from trauma in order to prevent progression. Once PTSD becomes chronic, it is much more difficult to treat.

Cook,R.A.,Brown,M.,Allan, C.,Schepp,K.,Voss,J.G.(2017). Screening for posttraumatic stress disorder in civilians with mangled hand injury: A practice enhancement approach. Orthopaedic Nursing, 36(6),432-438.

Prins,A.,Ouimette,P.,Kimerling,R.,Cameron,R.P.,Hugeishofer,D.S.,Shaw-Hegwer,J.,Sheikh,J.(2003). The primary care PTSD screen (PC-PTSD): Development and operating characteristics. Primary Care Psychiatry, 9(1),9-14.