The Aftermath of Survival from Sudden Cardiac Arrest

The Aftermath of Survival from Sudden Cardiac Arrest

PITTSBURGH, PA--Life after survival from cardiac arrest is fraught with challenges for patients and loved ones alike, according to newly published research conducted among members of the Sudden Cardiac Arrest Foundation’s online community, the Sudden Cardiac Arrest Network.

While contemporary research among survivors has focused on functional abilities and cognitive or neuropsychiatric measures, this study sought to identify themes unique and important to cardiac arrest survivors and their family members and friends, so that results could serve as a basis for future patient-centered interventions and resources.

“Understanding survivors’ psychosocial perceptions of life in the aftermath of cardiac arrest is the first step to development of interventions and resources that meet the needs of survivors, their loved ones and the larger support system,” said Kelly Sawyer, MD, MS, lead author from the Beaumont Health System in Royal Oak, Michigan [1]. Dr. Sawyer, an emergency physician, is also a survivor of cardiac arrest.

The study consisted of an Internet-based survey distributed to 1,060 survivors and family members and friends in the community, using discrete multiple choice questions and open-ended questions. Independent researchers conducted inductive thematic analyses using accepted qualitative research methods. There was an 18.5% response rate from 157 survivors and 39 family members and friends.

Survivors responding to the survey had the following characteristics:

  • Ages ranged from 18-81, with the majority of respondents (60%) between the ages of 41-60.
  • Most events occurred in public places (57%).
  • 35% of patients received therapeutic hypothermia.
  • 69% of patients received implantable cardioverter defibrillator (ICD) therapy.
  • 95% of patients were discharged home.
  • Most survivors (69%) were able to return to work or school with no limitations; another 25% were able to return with limitations.
  • Most survivors (75%) had memory loss near the time of the event.
  • Many survivors (22%) continue to have memory issues.
  • The biggest challenges for survivors are anxiety, memory loss, re-establishing a routine, depression, driving, work/school, and financial concerns.

Survey results showed that discharge counseling was primarily provided by doctors (65%) and nurses (24%). However counseling was largely unhelpful. The most common bit of advice (54%) was to “Take it easy.” Many survivors (19%) said they received no counseling.

Researchers uncovered several global themes conveyed by survivors, including:

  • The significance of others
  • The idea that “We are in this together”
  • The perception that the number of feelings is overwhelming
  • The need to find “a new normal.”

Major themes for survivors include the desire to locate and share with others, subculture identification (i.e., cardiac arrest is not the same as a heart attack), mental health issues, financial concerns, lack of preparation for emotional and cognitive issues, and changed relationships.

Family members and friends identified several global themes including:

  • Lack of information at discharge
  • Lack of mental health resources
  • Fear it could happen again.

Major themes for family members and friends included memory loss around the time of the event and afterwards, the fact that no information was provided at discharge, the fact that follow-up appointments centered on cardiology but did not address psychosocial issues, the idea that peer support would be helpful, and the need to know what to expect going forward.

While study respondents represent a self-selected sample of people with Internet access and functional ability to complete the survey and may not be representative of the population at large, the research serves to inform clinicians and researchers on the complexity of survival and themes that are important to survivors and their loved ones.

This qualitative pilot study takes a necessary step in assessing how patients experience life after survival and also provides insights into the experiences of loved ones. There is an apparent need for support networks and social media groups with expertise from people who are trained in supportive care for others.

Study recommendations include developing a system for discharge counseling that includes follow-up re-evaluation and reiteration of instructions, and expectations and resources for survivors and loved ones, including options for peer support.

The Sudden Cardiac Arrest Foundation’s online community provides one option for survivors and their family members and friends. To join the community, visit www.sca-aware.org.

Mary M Newman, MS, president of the Sudden Cardiac Arrest Foundation, presented this research on October 21st at a Take Heart America meeting in Minneapolis, MN. See attached presentation.

In addition to Dr. Sawyer, the research team included Frances Brown, PsyD, LP, Roxanne Christensen, MA, TLLP, and Colleen Damino, PsyD, Michigan School of Professional Psychology; Mary M. Newman, MS, Sudden Cardiac Arrest Foundation; and Michael C. Kurz, MD, MS-HES, University of Alabama School of Medicine.

[1] Dr. Sawyer is now an Assistant Professor of Emergency Medicine at the University of Pittsburgh.

 

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surviving_cardiac_arrest_thtm_final_on-line.pdf137.94 KB
Greandoc's picture
Greandoc wrote 2 years 20 weeks ago

Take Heart

Mary
Thank you again for the wonderful presentation at THA. I was very emotional during it, but also thankful for your thoughts. It has been 8 years for me, and 18 shocks (the two most recent this past summer) so there is a constant reminder of the problem. It always seems I just get to the point where I think I can be "normal" whatever that is, and ramp up my activity level to a point where I am reminded that I am not. Always takes at least 4-6 weeks to fully recover again. However, I am always reminded by my cardiologist that every one of the episodes would have been fatal so be thankful for that little device by your collarbone.

I am hoping that we can see the development of a lot more survivor groups- we need each other. I also hope that Take Heart can work with terrific groups such as SCAF to get everyone in the circle:) Thanks again for an inspiring story.

Steve Dunn, Ph.D.
Take Heart America Board member
www.takeheartamerica.org

Steven C. Dunn, Ph.D.
2x SCA Survivor

SCAFoundation's picture
SCAFoundation wrote 2 years 19 weeks ago

Great to meet you, Steve

Hi Steve, It was great to meet you at the Take Heart America meeting. Thank you for your kind remarks. I'm glad to know the presentation was helpful.
-Mary Newman

Sudden Cardiac Arrest Foundation

secondbirthday's picture
secondbirthday wrote 2 years 20 weeks ago

Aftermath of SCA

I was glad to see that a lot of the statistics from your survey were similar issues that I dealt with after surviving my SCA. I hope that I participated in the survey (I can not remember).

I am 2 years post SCA and CPR and an AED was used immediately since it occurred in a public place. I have not really had to deal with any memory loss issues and I have no physical limitations or lingering medical issues.I believe this is because I received help immediately.

One of the biggest things I had to deal with and still do is the ability to deal with what happened. I did seek the help of a therapist 6 months after my SCA (when I could finally drive again) and now 1 year later I still attend monthly sessions with the therapist. I know it is not the cardiologists "job" to evaluate if an SCA survivor should be treated by a therapist but more information should have been provided upon discharge. I realize now that I was in shock for the first three months afterwards and my mind was having a difficult time processing the fact that I was given a second chance at life. I then spent the next 12 months in a "functioning depression" because I was still trying to figure out how to process this new normal.

I do not believe my family has truly processed my survival. They do not talk about it and they do not acknowledge the anniversary of my SCA. I find that if I share my story with friends it become awkward and I chose to not elaborate on my story because people chose not to process the concept of death.

Thank you for continuing to do surveys with the survivors so our concerns can be passed onto cardiologists, electrophysiologists, and cardiac nurses for a more complete assessment and understanding of the patients/survivors position in this "new normal".

SCAFoundation's picture
SCAFoundation wrote 2 years 20 weeks ago

So great to hear from you, Marsha!

It is awesome to hear from you, Marsha, and to know you have been doing so well! It sounds like you have embraced your situation and have come through it all with optimism and a conviction that life after SCA offers promise and the opportunity to live a full life once again. Kudos to you! And best wishes for many more happy times in the years ahead.
-Mary Newman

Sudden Cardiac Arrest Foundation

Bob Trenkamp's picture
Bob Trenkamp wrote 2 years 20 weeks ago

re:18 years out and still ticking

You're having a better life than most who haven't been through what you have!

Way to go!

Bob

Bob Trenkamp, President
Saving Lives In Chatham County
www.slicc.org

Bob Trenkamp's picture
Bob Trenkamp wrote 2 years 20 weeks ago

re: Dr. Sawyer's "Aftermath" article

The article stated
"Ages ranged from 18-81, with the majority of respondents (60%) between the ages of 41-60.
Most events occurred in public places (57%)."

This is interesting in that 70% of SCAs happen in a private residence, 15% happen in a private nursing home, and 15% happen in public.

Eighty percent of the victims are 50 years old or older, and two-thirds are male.

What's interesting is the question of whether those who arrested at home were less likely to participate. If that is so, it might be that people who arrest in public have a greater chance of survival.

Your survival probability is 10% regularly, 60% if you are defibrillated within 3 minutes of your arrest. This is a compelling argument for having an AED in the home.

Bob Trenkamp, President
Saving Lives In Chatham County
www.slicc.org

SCAFoundation's picture
SCAFoundation wrote 2 years 20 weeks ago

Location of arrest and the need for AEDs in homes

Hi Bob, Thank you for your observations. While most arrests occur at home, most of those who participated in this survey experienced events in public places. And those who experience SCA in public places may have a better chance of survival since their events are more likely to be witnessed.

We agree that since SCA is most likely to occur at home, it makes sense for homes to be equipped with AEDs.

Sudden Cardiac Arrest Foundation

26sept1998's picture
26sept1998 wrote 2 years 20 weeks ago

18 years out and still ticking

Hi to Mary Newman, Tracey Conway, and other old friends in this organization!

I just want to make a pitch for optimism, a positive mental attitude, perseverance, etc.

In the days and weeks following my sudden cardiac death experience there was a lot of scary stuff. Initially(first week or so, maybe longer) I had no short-term memory and my long-term memory was a bit iffy. My family used a whiteboard in my hospital room to deal with my two urgent questions, which were hard even to ask with a tube in my throat. Here are the answers (you can figure out the questions).
(1) You had a cardiac arrest and are in the hospital.
(2) Just GO--you are connected to a catheter.

After I got my AICD and I was more coherent and able to walk around, including stairs, engage with others, concentrate on a TV program, etc. (about 2-3 weeks after the SCD) I was sent home. On the third day the device shocked me while I was sitting in a chair watching TV, and I went back to the hospital. Another couple of weeks there, then sent home, shocked the second day home, back to the hospital. This time the leads were adjusted.

I learned that I could be home for more than 3 days without a shock.

But during that ordeal I came to terms with the possibility that this cycle could become the shape of my life, and I accepted it. Because I was still alive. I could spend time with my husband and my daughter. Friends could visit--whether I was home or in the hospital. I was grateful.

Then I got better. The meds I had been taking for my idiopathic dilated cardiomyopathy helped me improve. I decided not to become an invalid. Less than 3 months after my event my family flew from Chicago to San Diego for a vacation. I had a note from my cardiologist written to the pilot telling him that I might require an emergency landing (this was 1998--no external defibrillators on planes). I had names and phone numbers of specialists in SD. I thought it was hilarious fun to drive one of those electric carts around the San Diego Zoo and other attractions. I could sit out in front of our rented house (with a full kitchen so we could cook low-sodium meals and not have to go to restaurants), watch sunsets, watch people going by. I was on my way to a substantial recovery.

Of course there were challenges. Getting the meds to the optimal doses. Managing during the months when I wasn't allowed to drive (tough for my family). Continuing to accommodate the very low-sodium diet I had started only two months before my event (when I was first diagnosed). Sometimes my ability to concentrate enough to read anything longer than a magazine article just wasn't there--very frustrating for a retired college professor.

But everything slowly got better. Eventually I came off the heart transplant list (that took years). I remember getting excited when my cardiologist, responding to my question about my prognosis, said that "my heart was not necessarily a limiting condition." Wow! I could die from cancer instead! Yay?! Yes, yay!

So now it has been 18 years. Take that in. 18 years. My daughter's wedding. The birth of a grandchild. Lots of family time. Some travel (though not to some places where my doctors think I'd have trouble getting good treatment if I needed it). Swing dancing. Mentoring gifted children. Service to others in the community through volunteer work at my alma mater and weekly visits to an inner-city school using everything I knew as a teacher and professor. A rich, full life.

I think gratitude and a positive attitude were crucial in bringing me to a joyful today.

Marsha

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