Helping Your Loved One Navigate the Healthcare System

How can I be an effective advocate for my loved one?

As a close family member, you may find yourself navigating a complex and overwhelming healthcare system, managing the care of your loved one, and coordinating appointments and therapies. When a loved one experiences cardiac arrest, their life and the lives of their family members can change in an instant. With time, your role will change from caregiver to champion to co-survivor.

In the early period after survival from cardiac arrest, close family members act as caregivers, whether it is advocating for them while they are in the hospital or helping them re-engage with life when they first come home (driving them for the first few months, managing meds early on, wound care, emotional support, etc.). 

As survivors gain more and more independence, the caregiver role must also shift (although it is sometimes hard as they are traumatized by the cardiac arrest event itself and fear it is going to happen again). Nevertheless, family members learn to be more of a champion on behalf of the survivor to help them gain confidence in social interactions, exercise, or just positivity.

When survivors are at a point where they are more independent, manage their own meds, drive to appointments, take on other responsibilities at home, and/or resume working, family members become co-survivors and focus more on their own needs, but are always ready to jump back into the previous roles as circumstances require.

This educational document and resource guide is based on our experiences of being close family members to our cardiac arrest survivors and is designed to provide you with the knowledge and tools necessary to become an effective advocate for your survivor.

Understanding cardiac arrest and its consequences

Cardiac arrest occurs when the heart suddenly stops beating due to an electrical malfunction. The lack of blood flow can lead to brain injury, organ damage, and other long-term consequences. Recovery from a cardiac arrest often requires a multidisciplinary approach, including medical care from various specialists, physical and occupational therapy, psychological support, and more. Co-survivors need to understand the potential challenges and needs of their survivors to provide appropriate care, coordination, and support.

The role of co-survivors

As a co-survivor, you may find yourself responsible for coordinating and managing the healthcare needs of your loved one. This includes:

• • Scheduling and attending appointments with healthcare providers
  • Communicating with healthcare professionals and ensuring that your loved one receives appropriate care
  • Coordinating therapies and interventions, such as physiotherapy, occupational therapy, and psychological support
  • Advocating for your loved one’s needs and preferences
  • Monitoring your loved one’s progress and adjusting their care plan as needed
  • Providing emotional and practical support to your loved one

Building a support team

Managing your loved one’s care is a significant responsibility, and you don’t have to do it alone. Building a support team can help ease the burden and ensure that your loved one receives the best possible care.

 Your support team may include:

• • Family members and friends who can help with tasks such as transportation, meal preparation, and emotional support
  • Healthcare professionals, such as primary care physicians, cardiologists, neurologists, and therapists, who can provide guidance and expertise
  • Support groups, both in-person and online, where you can connect with other caregivers and share experiences and resources

Navigating the healthcare system

The healthcare system can be complex and difficult to navigate, but understanding how it works can help you become a more effective advocate for your loved one. Here are some tips for navigating the healthcare system:

• • Educate yourself about your loved one’s condition, treatment options, and potential therapies.
  • Keep a detailed record of your loved one’s medical history, including medications, test results, and previous treatments.
  • Obtain copies of your loved one’s medical records and share them with all healthcare providers involved in their care.
  • Research local healthcare providers and facilities, and choose those with experience in treating cardiac arrest survivors.
  • Communicate openly and regularly with healthcare professionals, and ask questions to ensure you understand your loved one’s care plan.

Coordinating appointments and therapies

As a co-survivor, you may be responsible for scheduling and coordinating your loved one’s appointments and therapies. Here are some tips to help you stay organized:

• • Create a calendar or use a digital tool to track appointments, therapy sessions, and other important dates.
  • Schedule appointments and therapies.
  • Schedule appointments and therapies in a way that minimizes travel and maximizes efficiency, such as grouping appointments on the same day or at the same location when possible.
  • Coordinate transportation to and from appointments, whether through personal vehicles, public transportation, or medical transportation services.
  • Keep a list of contact information for healthcare providers, therapists, and other members of your loved one’s care team for easy reference.
  • Regularly update your support team on your loved one’s progress and any changes in their care plan.

Co-survivor insight: “My child takes various medications during the day and night. I have alarms set in my phone for every medicine time, even during a time frame when she might receive medicine at school or I’m not the one that will be giving her the medicine. I do this because we get busy, and it would be easy to skip her medicine when there’s a schedule change like a holiday or a teacher workday. My partner and I also check in with one another around medicine time: “It’s 1:30 – has she gotten her medicine yet?” And, what’s more, we welcome the reminder because we have to approach this as a team.”

Advocating for your loved one

As a co-survivor, it may be crucial to advocate for your loved one’s needs and preferences. This may involve:

• • Clearly communicating your loved one’s needs, goals, and preferences to healthcare providers and therapists.
  • Researching and requesting specific treatments or therapies that may benefit your loved one.
  • Addressing any concerns or issues that arise during your loved one’s care, such as communication problems or inadequate care.
  • Ensuring that your loved one’s rights are respected, and their dignity is maintained throughout their care journey.

Coping and self-care for co-survivors

Caring for a cardiac arrest survivor can be emotionally and physically demanding. It is essential for co-survivors to prioritize their own well-being to ensure they can continue providing the best possible care for their loved ones. A co-survivor’s wellness can be especially challenged when the survivor has complex physical and psychological care needs that keep you, the co-survivor, from social support and your paid work. Some self-care strategies that work for us include:

• • Seek support from friends, family members, or support groups.
  • Take breaks and schedule time for yourself, even if it’s just a short walk or a quiet moment to breathe.
  • Maintain a healthy lifestyle, including regular exercise, a balanced diet, and adequate sleep.
  • Seek professional help, such as therapy or counseling, if you are struggling with your caregiving role or experiencing symptoms of burnout or depression.
  • You may need a break, and your family, social support network, and healthcare professionals may be able to help you get relief when you need it.

Co-survivor insight: “When I take Mum to her appointments, I bring the whole binder. It is like a medical misadventure scrapbook – which is both sad and hilarious I think. It is where I keep all her past records, where I put the diagnostic imaging reports and test results I have requested in the past. The good healthcare professionals even ask for it and use it sometimes.”

Becoming a co-survivor for a loved one who has survived a cardiac arrest can be a challenging and rewarding experience. By understanding the needs of your loved one, building a support team, navigating the healthcare system, coordinating appointments and therapies, and advocating for your loved one’s best interests, you can help ensure they receive the best possible care on their journey to recovery. Remember to prioritize your own well-being and seek support when needed, as a healthy and well-supported caregiver is better equipped to provide the care their loved one needs.

Sources

Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver Burden: A Clinical Review. JAMA. 2014;311(10):1052–1060. doi:10.1001/JAMA.2014.304

Collins LG, Swartz K. Caregiver care. Am Fam Physician. 2011 Jun 1;83(11):1309-17. PMID: 21661713.

Sullivan AB, Miller D. Who is taking care of the caregiver?. Journal of patient experience. 2015 May;2(1):7-12.

Swartz K, Collins LG. Caregiver care. American family physician. 2019 Jun 1;99(11):699-706.

Thank you to our contributors

Matthew Douma & Jennifer Chap