The forgotten patient – a survey

It was evident from the very first SCA UK meetup that a resuscitation event wasn’t just about the survivor, but everyone else involved – especially partners or other loved ones. However, in the aftermath of the event, it’s all about the survivor, getting them back to health and a good quality of life.

Of course, this is only right but as the SCA UK group grew more and more, partners and other key supporters joined and they were looking for answers for not only their loved ones but help for themselves. Hence the Chain of Survival UK group was spun off to cater for this cohort with differing and sometimes conflicting needs of the survivors.

My wife who is also my lifesaver did a poll in the newly formed group to find out who had had any support post-resuscitation attempt participation. That simple poll showed that very few did and that those who did, tend to be somewhat affiliated with the medical profession.

We wanted to find out more about this and so conducted a survey of people who have been party to a resuscitation attempt (either actively or as a bystander). The aim was to find out about their experience and if they received any support and if not, what support they would have liked.

Method

Being a UK-focused group we aimed the survey at lay responders from the UK but were happy to take responses from professionals and others around the globe.

The survey was conducted using Google Forms and took place in May/June 2021 and ran for 22 days. It was advertised on the SCA UK, COS UK and other international SCA Facebook groups along with our Twitter account.

We collected a total of 204 responses, of which 134 were from laypersons.

Although we received a good number of non-layperson responses they are not discussed in this review and will be looked at a later date separately.

Results

The survey was grouped into 4 sections…

1. About You
2. First Resuscitation
3. Support
4. Other

The responses have been summarised and can be viewed in an online presentation (see below).

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1// About You

We asked some basic questions about the respondent and their experience.

This showed that more than three quarters were from the UK, and the remaining mainly from the US and Europe.

The ratio of females to male laypersons participating was more than 3 to 1.

The age range of participants was widespread but the most common (nearly 1/3) being between the ages of 40 and 59.

70% of laypersons described their training as basic or better and the vast majority had participated in only one resuscitation event.

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2// First Resuscitation

Respondents were asked to provide answers relating to the first time they participated in or witnessed a resuscitation, irrespective if they have attended more.

80% of layperson participation occurred in a domestic setting.

More than a third of layperson interventions occurred within 1 year of the survey taking place.

As mentioned earlier, laypersons formed 134 of the responses with the others being made up of volunteer first aiders, non-medical emergency services (Police/Firefighters) and health care professionals.

60% of layperson interventions were regarding their partner and 80% were for their partner or family.

Most participations involved raising the alarm (66%) and performing CPR (84%).

Laypersons were 9 times more likely to do CPR than use an AED (9%).

75% of laypersons are involved for 30 minutes or less and only 20% of layperson interventions were on a female.

44% of layperson participation was on someone of a similar age to them.

75% of resuscitations with a layperson participating had a favourable outcome.

When asked to describe their feelings immediately after the resuscitation event the most common words used were Shocked, Numb and Scared.

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3// Support

One of the primary objectives of this survey was to find out what support respondents received and what they would have liked and this section looked deeper into that.

Around three-quarters of laypersons felt they did or might have needed immediate support and common themes expressed included Shock, Anxiety, Emotional and Traumatised.

Unfortunately, over three-quarters of laypersons got no support offered, resulting in a similar number seeking support for themselves.

Just 10% of laypersons received any immediate support and 60% thought support should be offered immediately or in the first week.

Common themes expressed with any support were generally good, such as Positive, Made Sense, and Reduced Symptoms but some expressed negative themes such as Made It Worse and GP Useless.

“SCA support group was brilliant. Just being able to speak to people who understand”
“I found it easier to cope with the feelings”
“It helped lessen the constant replaying in my head”

Common themes expressed about the best thing of support were…

“it’s good to talk”
“Being able to share the event and speak through it”
“Understanding that I tried and that’s all you can do”
“Someone to offload to. Rather than keeping how I was feeling bottled up”

The overwhelming feeling regarding the worst thing about support was the fact that there was none.

Those that did receive some support expressed frustration about not finding out what happened to the patient and having to relive the trauma of the event.

Common themes on how the support could be improved included:

• Support sooner
• Get more information
• To be offered some
• Professional help
• Get a debrief, talk it through
• Peer support

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4// Other

This section looked at other aspects of the respondent’s experience.

Respondents were asked how they felt about being recognised for their achievements with the most common themes being Neutral/Not needed, Uncomfortable/Embarrassed, Proud/Good, Other and Mixed.

Asked whether the experience had any lasting effect, 60% said that they had flashbacks, 44% anxiety, 43% sleeping issues, 30% PTSD and only 11% said it had a positive effect or had no lasting effect on them.

There was a very mixed response on how participants feel now, ranging from traumatised, shocked and anxious to pleased with how they handled the situation.

Three-quarters of layperson participants were in favour of having a way to find out the patient’s outcome if it was unknown to them, 20% were unsure and 5% did not want to know.

The final question asked whether participants would take part in a resuscitation attempt again and 91% said yes, 7% said maybe and the remaining 2% said no.

Comments

Participants were given the opportunity to add any further comments and this is a selection of them…

I’m so glad someone is addressing the lack of support available

My husband is home and well despite the massive heart attack and cardiac arrest… Would I do it again to him? Yes in the blink of an eye but only if I didn’t have to think about it.

I hope that support is offered as standard practice for those who go through this in future. People often forget about life after a cardiac arrest and how it can impact mental health.

I have had a similar situation but didn’t resuscitate as the ambulance was there. This has made me more emotional as it was my wife.

Although doing CPR was terrifying I strongly believe that first aid should be taught from a young age I was terrified to do CPR even though I had basic first aid training that is refreshed every few years.

Online peer support has been very useful for making me realise I’m not alone in having lasting impacts on my life. It does have the slight negative of making me think about it perhaps more than I would. Overall worth it for the support though.

I think the ambulance service could offer more support after a MOP resuscitation attempt.

The chain of survival group allowed me to vent other than to my family member. It helped me know I am not alone and that even trained professionals can be affected adversely too

I remember asking the hospital about mental health services, they didn’t have any information for us.

I wouldn’t blame anyone for not being able to attempt resuscitation. It’s terrifying coming across someone who obviously needs help but having the strength and wherewithal to act takes guts. I’m so grateful that my daughter and neighbours were around to help. I’m not sure I could have managed alone.

This first CPR event was my job so did not affect me. My husband’s SCA was very different as it was personal. I had little support afterwards and once out of hospital I had no support at all. I would have liked the opportunity to get support and am sad that this was not offered.

Thank you to Chain of Survival for recognising us and looking into how we can better be supported. It is very much appreciated

Worst experience in my life, so sudden, so final and being alone with him. Ambulance crew did get his heart started again and he was in ITU for a week which gave us time to say goodbye

Thank you for caring

It’s my husband. Everyone should know even basic CPR. A friend of mine lost her husband 2 nights ago after suffering SCA in his sleep. I heard my husband take his last breath and I woke up

I’m from Canada. People don’t realize they need help after SCA. Your entire life changes, alive or dead.

I think Chain of Survival UK could be very helpful for those people who have been less fortunate than my partner and me. My partner was “down” for 37 minutes and was given 7 shocks by the amazing emergency services to get his heart started again. Unbelievably he has suffered no neurological or physical damage from the event. We are very lucky to be able to continue to live life as it was before.

Thank you for the support and information that your group offers, it is invaluable!

I’m so grateful for this group, it’s provided me with a huge level of comfort and educated me more.

The average person needs to know the importance of immediate CPR, both my boyfriend {the SCA survivor} and I agree that even if you are doing it wrong you are doing something to keep blood flowing to the brain. Without the brain, the body will probably never recover. More awareness needs to be focused on SCA and its implications.

Regarding CPR training, it does not really approach the reality of CPR. I am a retired emergency responder and have given it multiple times, every time different. Every time, my own perception is different. The last time was with my husband. That changed me.

It was perhaps the most traumatic day of my life. I still think of it often and pray to God I will never have to witness a loved one having a cardiac arrest again.

Wish I had known about the support groups immediately, not months later.

Great survey. I believe trauma therapy is important in these situations. Immediate action should be taken to allow the person to discuss their feelings. A trained trauma therapist is important

I can see how it would be traumatic for a non-medical professional. There have been times it’s traumatic for me and this is my bread and butter. Thank you for your work.

Presentation

To view the presentation, click on the < > directional arrows or the image to go to the next slide. Please note that on the slides the data tables give both the layperson and total but the charts are derived from just the layperson’s responses.

Resuscitation Participant Support by Paul Swindell

Conclusion

If a house was on fire and a passer-by intervened to save someone in the house but got burned, they would rightly be treated for the injuries they sustained. So, isn’t it only right that if someone steps up in an OHCA and they get psychologically “burned” they too should get help to reinstate their former level of health, rather than just be forgotten?

The phrase “the forgotten patient” has been used to describe various cohorts in recent times but its use when regarding out-of-hospital cardiac arrests is both unusual and only fairly recent. Unusual because someone who is seen to be a “caregiver” is in fact a patient, and recent as it was only in 2017/18 that it was referenced in the Resuscitation Journal editorial…

Up to 85% of all cardiac arrests occur in homes which means that, unlike many other critical illnesses, family members, and partners’ or significant others often witness the collapse or have to perform CPR on their friend or loved one. The traumatic burden associated with such a life altering event can be significant, resulting in unique psychosocial needs both for survivors and those who witness or perform CPR. Whilst the survivor may have very little memory of the cardiac event, the partner or caregiver may struggle to deal with the fear, anxiety and guilt associated with the arrest, CPR provision, and subsequent care upon discharge of their loved ones from hospital. This often makes the caregiver a ‘forgotten patient’

K Haywood, K Dainty – Life after cardiac arrest: The importance of engaging with the ‘forgotten patient’

With much emphasis placed on teaching CPR skills and encouragement for the community to step into life and death situations, it seems only right that we not only prepare them for what to do at the time but also what impact it might have on them.

The unpredictable and time-sensitive nature of OHCA makes it a unique medical emergency. In no other medical situation is there such a vital reliance on the community

The Lancet

This means putting in place a comprehensive package to ensure they get the best aftercare possible as this survey shows, their needs seem to be grossly underserved.

What would this look like?

Of course, some further research would need to be done into this and I’m pleased to see this area getting more attention recently. But going from the survey responses it would seem that to be forewarned is to be forearmed. We should warn of the impact it may have on their mental health and how to access timely help, we should also look to provide support services that are dedicated to this cohort in the immediate aftermath i.e. debriefing, helpline, and access to counsellors that are trained in resuscitation-associated trauma. Many do not get any relevant help and have to go to their GP or IAPT service and these are often not timely or have the right understanding.

Whilst I cannot claim any scientific rigour to the survey and obviously, it will have some inherent biases due to the channels that the survey was advertised but I believe it to be a very good representation of the state many “forgotten patients” are in.

And finally, I would hate to think that this survey would ever put anyone off from helping out in a resuscitation attempt, after all, I am a survivor thanks to someone stepping in. However, and as you can see from the results nearly all lay responders would do it again despite their experience. A very encouraging note to end on.

Further Help

Since conducting this survey we have put together some resources that we hope will help anyone who has found themselves in this situation:

The Chain of Survival – Being part of a resuscitation attempt

I Care – So your loved one has had a cardiac arrest

Bereavement – 3rd party help