Resources

First Descents

First Descents provides life-changing outdoor adventures for young adults impacted by cancer and other serious health conditions. Programs are open to any young adult diagnosed with cancer or MS between the age of (15-39), and currently between the age of (18-45).

Cardiac Arrest Survivor Alliance (CASA)

Cardiac Arrest Survivor Alliance™, a program of Sudden Cardiac Arrest Foundation, is a place for anyone touched by cardiac arrest. CASA fosters an online community for patients, families, friends, caregivers, rescuers, and advocates. Peer support, information resources, and access to experts will help community members recover, re-engage, and thrive. CASA is a home for hope and healing.

Heartsight

Heartsight is an initiative created by people impacted by cardiac arrest. It orients and empowers anyone who has been affected by this life-altering event. We connect you to trusted resources based on clinical research and the lived experiences of people like you. We are here to help.

American Red Cross Training Services

Directory of programs and classes through the red cross, including CPR and AED training.

CPR & ECC Resource Base

Course finder, training materials, guidelines, and more.

PulsePoint

PulsePoint Respond is a 911-connected app that can immediately inform you of emergencies occurring in your community and can request your help when CPR is needed nearby. PulsePoint Respond is not available in all areas. The service is only offered where adopted by the local public safety agency. PulsePoint AED is a powerful tool to build, manage and mobilize an emergency AED registry. Registered AEDs are accessible to emergency call takers and disclosed to those nearby during cardiac arrest events.

Can 40 seconds of compassion reduce patient anxiety?

Purpose: To use a standardized videotape stimulus to assess the effect of physician compassion on viewers’ anxiety, information recall, treatment decisions, and assessment of physician characteristics.

Participants and methods: One hundred twenty-three healthy female breast cancer survivors and 87 women without cancer were recruited for this study. A randomized pretest/posttest control group design with a standardized videotape intervention was used. Participants completed the State-Trait Anxiety Inventory (STAI), an information recall test, a compassion rating, and physician attribute rating scales.

Results: Women who saw an “enhanced compassion” videotape rated the physician as warmer and more caring, sensitive, and compassionate than did women who watched the “standard” videotape. Women who saw the enhanced compassion videotape were significantly less anxious after watching it than the women in the other group. Nevertheless, information recall was relatively low for both groups, and enhanced compassion did not influence patient decisions. Those who saw the enhanced compassion videotape rated the doctor significantly higher on other positive attributes, such as wanting what was best for the patient and encouraging the patient’s questions and involvement in decisions.

Conclusion: The enhanced compassion segment was short, simple, and effective in decreasing viewers’ anxiety. Further research is needed to translate these findings to the clinical setting, where reducing patient anxiety is a therapeutic goal.

What are the care needs of families experiencing cardiac arrest?: A survivor and family led scoping review

Aim: The sudden and unexpected cardiac arrest of a family member can be a grief-filled and life-altering event. Every year many hundreds of thousands of families experience the cardiac arrest of a family member. However, care of the family during the cardiac arrest and afteris poorly understood and incompletely described. This review has been performed with persons with lived experience of cardiac arrest to describe, “What are the needs of families experiencing cardiac arrest?” from the moment of collapse until the outcome is known.

Methods: This review was guided by specific methodological framework and reporting items (PRISMA-ScR) as well as best practices in patient and public involvement in research and reporting (GRIPP2). A search strategy was developed for eight online databases and a grey literature review. Two reviewers independently assessed all articles for inclusion and extracted relevant study information.

Results: We included 47 articles examining the experience and care needs of families experiencing cardiac arrest of a family member. Forty one articles were analysed as six represented duplicate data. Ten family care need themes were identified across five domains. The domains and themes transcended cardiac arrest setting, aetiology, family-member age and family composition. The five domains were i) focus on the family member in cardiac arrest, ii) collaboration of the resuscitation team and family, iii) consideration of family context, iv) family post-resuscitation needs, and v) dedicated policies and procedures. We propose a conceptual model of family centred cardiac arrest.

Conclusion: Our review provides a comprehensive mapping and description of the experience of families and their care needs during the cardiac arrest of a family-member. Furthermore, our review was conducted with co-investigators and collaborators with lived experience of cardiac arrest (survivors and family members of survivors and non-survivors alike). The conceptual framework of family centred cardiac arrest care presented may aid resuscitation scientists and providers in adopting greater family centeredness to their work.

Life after cardiac arrest: The importance of engaging with the ‘forgotten patient’

Out-of-hospital cardiac arrest (OHCA) is a significant cause of death worldwide; [1] although past efforts have nearly doubled survival rates, the current average mortality still remains between 80 and 90% [2]. Up to 85% of all cardiac arrests occur in homes [3] 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 [4–7]. This often makes the caregiver a ‘forgotten patient’ [8]. A growing literature has begun to expose the high levels of stress, anxiety, anger and confusion experienced by the caregivers of survivors within the first 12-months post-arrest [6,7,9]. A recent study suggests that significant post-traumatic stress continues in a significant percentage of caregivers up to 2-years post event [10]. Although the general quality of life of caregivers at 2-years is similar to that of the general population, levels of subjective, post-traumatic stress and fatigue are higher. Not surprisingly, levels of post-traumatic stress are greater for caregivers who witnessed the cardiac event or performed CPR than for those who did not witness the event. However, even for this latter group, levels of post-traumatic stress remain higher than that observed in the general population at 2-years.

Health Insurance Claim Denied? See What Insurers Said Behind the Scenes

Investigative reporting about health insurance claim denials. Includes a template for a claim file request, as well as step-by-step instructions on how to use it.

Lockdown, Love, and Life-Saving CPR: A Mother’s Day to Remember

Kristin’s recounting of her experience on the night of Will’s sudden cardiac arrest.

The Quiet Place

A reflection on Kristin’s experience following Will’s SCA, in which she names and explains the ways she found herself trying to process the aftermath and her own trauma.

Compassionomics

In Compassionomics: The Revolutionary Scientific Evidence that Caring Makes a Difference, physician scientists Stephen Trzeciak and Anthony Mazzarelli uncover the eye-opening data that compassion could be a wonder drug for the 21st century.

Health Design Thinking: Creating Products and Services for Better Health

This book offers a practice-based guide to applying the principles of human-centered design to real-world health challenges that range from drug packaging to breast cancer detection. Written by pioneers in the field—Bon Ku, a physician leader in innovative health design, and Ellen Lupton, an award-winning graphic designer—the book outlines the fundamentals of design thinking and highlights important products, prototypes, and research in health design.

Every Deep-Drawn Breath

‍Every Deep-Drawn Breath is a rich blend of science, medical history, profoundly humane patient stories, and personal reflection. Dr. Wes Ely’s mission is to prevent patients from being inadvertently harmed by the technology that is keeping them alive. Readers will experience the world of critical care through the eyes of this physician who drastically changed his clinical practice, and through cutting-edge research convinced others to do the same.

The Hot Young Widows Club: Lessons on Survival from the Front Lines of Grief

In the span of a few weeks, thirty-something Nora McInerny had a miscarriage, lost her father to cancer, and lost her husband due to a brain tumor. Her life fell apart. What Nora discovered during this dark time is that, when you’re in these hard moments, it can feel impossible to feel like even a shadow of the person you once were. People will give you all sorts of advice of how to hold onto your sanity and sense of self. But how exactly? How do you find that person again? Welcome to The Hot Young Widows Club, Nora’s response to the toughest questions about life’s biggest struggles.

Future Widow: Losing My Husband, Saving My Family, and Finding My Voice

Jenny Lisk’s young husband started feeling dizzy and stopped making sense. The next thing she knew, she was a widowed parent, desperately wanting to know: how exactly do you raise grieving kids, anyway? A brave and raw narrative that doesn’t pull any punches on the realities of caregiving and bereavement.

Flashback Girl: Lessons on Resilience from a Burn Survivor

At the age of four, Dr. Lise Deguire suffered third-degree burns on 65% of her body as the result of both maternal and corporate negligence. Against the odds, she lived through the trauma, beginning decades of treatment as a burn survivor. Some chapters of this gripping journey focus on early events, including the story of the fire, her years of painful surgeries in the hospital, social isolation and bullying. Other chapters focus on her adult life, such as her struggles to find romantic love, being a parent, and her work as a clinical psychologist.

Between Two Kingdoms: A Memoir of a Life Interrupted

A deeply moving memoir of illness and recovery that traces one young woman’s journey from diagnosis to remission to re-entry into “normal” life—from the founder of The Isolation Journals and a subject of the Netflix documentary American Symphony.

Big Ordeal

The Big Ordeal, written in collaboration with a psychologist and two oncologists, tackles the emotional side of coping with cancer head-on, to help newly diagnosed patients and their loved ones anticipate, understand, and deal with the psychological turmoil ahead.

In Shock

In Shock is a riveting first-hand account from a young critical care physician, who in the passage of a moment is transfigured into a dying patient. This transposition, coincidentally timed at the end of her medical training, instantly lays bare the vast chasm between the conventional practice of medicine and the stark reality of the prostrate patient.

Articles & Blogs

The Quiet Place

Kristin Flanary, MA

Lockdown, Love, and Life-Saving CPR

Kristin Flanary, MA

Health Insurance Claim Denied?

ProPublica

Life After Cardiac Arrest

Kirstie Haywood, Katie N. Dainty

What are the care needs of families experiencing cardiac arrest?

Douma MJ, Graham TAD, Ali S, et al.

Can 40 seconds of compassion reduce patient anxiety?

L A Fogarty, B A Curbow, J R Wingard, K McDonnell, M R Somerfield

Book Recommendations

In Shock: My Journey from Death to Recovery and the Redemptive Power of Hope

Dr. Rana Awdish

The Big Ordeal

Cynthia Hayes

Flashback Girl: Lessons on Resilience from a Burn Survivor

Lise Deguire

Between Two Kingdoms: A Memoir of a Life Interrupted

Suleika Jaouad

Future Widow: Losing My Husband, Saving My Family, and Finding My Voice

Jenny Lisk

The Hot Young Widows Club: Lessons on Survival from the Front Lines of Grief

Nora McInerny

Every Deep-Drawn Breath

Dr. Wes Ely

Health Design Thinking: Creating Products and Services for Better Health

Bon Ku, MD and Ellen Lupton

Compassionomics

Stephen Trzeciak, Anthony Mazzarelli, and Cory Booker

Educational Resources & Tools

PulsePoint

PulsePoint Foundation

CPR & ECC Resource Base

American Heart Association

American Red Cross Training Services

American Red Cross

Initiatives & Organizations

Heartsight

Resuscitation Council US

Cardiac Arrest Survivor Alliance

Sudden Cardiac Arrest Foundation

First Descents

Videos

Will Flanary’s SCA Survival Story

Avive Solutions

Ken Jeong AHA Hands-Only CPR video

American Heart Association