- We need to start talking about unhelpful myths and implicit rules surrounding resuscitation, death, and funerals.
- Not everyone has the same needs or wishes during a resuscitation or when dealing with a death.
- Many families and friends feel invisible and isolated in a system that does not recognize their unique needs and challenges.
- We need to make every effort to normalize grief!
How do I navigate these unspoken rules?
Out-of-hospital cardiac arrest victims are often surrounded by bystanders and family members that are suffering fear, stress, and mental trauma.
A tragic reality is that death after cardiac arrest is more common than survival. We refer to these grieving friends and family members as the “Invisible Majority.” Despite that, there is not much information out there debunking the unspoken rules and myths that support unhelpful biases and beliefs. This includes addressing the lack of understanding, awareness, and support among healthcare staff for families losing their loved ones. This is an issue about family inclusion, showing empathy, and compassion, both during and after resuscitation efforts are ended. If unhelpful biases, misinformed rules, or outdated information are present, these inherited behaviors of staff working in health care systems are harmful to a family that has just lost a loved one. As grieving families face the challenge of navigating difficult decisions in a system that does not recognize their unique needs, they feel invisible and desire to be seen.
The questions that arise when a first responder team responds to a 911 call due to cardiac arrest are completely unexplored. The situation is equally uncertain for families.
First responders may want to know
- What is the family’s appropriate involvement?
- What do we do when there are multiple family members?
- If a family member is also a first responder, should they be allowed to help?
- How do we protect children from witnessing distressing actions?
- How do we support families once their loved one is pronounced dead?
Family members may want to know
- Should we help or get in the middle of resuscitation efforts while the first responders are trying to save our family member?
- What do we do next if our loved one does not survive?
- Should we help prepare the body or keep them at home while everyone comes to visit and mourn? What is allowed?
- Should we have as little to do with the duties or body as possible? Who do we ask for help?
After the sudden death of a loved one, you may be overwhelmed, traumatized, and mired in shock and grief. You may also be the one dealing with a confusing mass of tasks that you are completely unprepared for. Families are often unaware of their rights regarding hospital or morgue visitations, casket/urn/burial options, body transport, and so on. There is also an unspoken rule that you avoid any untoward actions or behaviors that are outside of the norm.
When someone dies in the family, society has outdated rules and expectations surrounding how to deal with grief, funeral planning, preparing the body, and carrying on in socially appropriate ways. Even beyond the immediate period after a death, there is an expectation of how you will behave, when you will “get over it,” and that something new will come along to take the focus off of the event. Overcoming myths about expectations regarding funerals, dead body “ownership,” and the ways families are included during cardiac arrest events is important in ensuring everyone feels better supported. We need to start talking about these unhelpful myths and implicit rules surrounding death that our society has been operating under. We need to address this gap by creating conversations that challenge the status quo, support resources for families and first responders alike, and provide better opportunities for care.
Among many, there are three key areas of myths or unspoken rules that we have identified that need to be challenged and understood to determine where helpful changes could be made first. These are in chronological order, beginning with the pre-hospital experience of cardiac arrest.
1. Pre-hospital period or when the cardiac arrest occurs at home
When your loved one suffers cardiac arrest, your life changes immediately. If you are there and witness it, there may be expectations of your behavior. There may be those who feel you should be removed or those who insist that you stay. Here is a list of some unspoken rules or myths that occur during this first phase.
A. MYTH: You can’t be present during the resuscitation or witness compressions.
- The rules and practices vary greatly by region and may depend upon the mindset of first responders. Some health care teams have a fear of being recorded, particularly if mistakes were made, but for the most part, you have the right to be present during your loved one’s resuscitation. Studies have shown that for some it provides reassurance that everything possible was done to save the life of their loved one and brings peace to them.
B. MYTH: Family members will be traumatized if they witness compressions, etc.
- Beliefs like these can drive certain first responders to force family and lay rescuers to be removed from the scene against their will with the good intention of protecting and helping family. Everyone should realize that every family is different and has varied needs and wants. It’s better to ask than assume.
C. MYTH: You can’t access medical data after the cardiac arrest event.
- Medical data has historically been considered the property of the practitioners/hospital/EMS service and not shared with family. There are barriers to accessing 911 calls, maybe due to the belief that it is harmful for families to hear the recording or to read the transcript. This may have also been to protect what happened during the failed resuscitation. There are also barriers in place for families to meet their first responders afterwards.
D. MYTH: There are rules about who and how many people can see the body.
- These practices vary by region/religion/service.
- If the body of your loved one is transported by first responders to a hospital, then that facility’s rules are also implemented.
- First responders may be untrained on what support they may offer or what they should say or do. It is often unclear who is allowed to be with the body.
E. MYTH: Everything must remain as is for the autopsy.
- After a young person’s sudden death, the scene may be considered a crime scene for an undetermined death. In some cases, security or police protection is on site. They may insist on monitoring the body of your loved one and want rapid transport to the coroner. Despite the importance of this process, it is not true that families can’t be present with their loved one.
- You may also request to have your loved one’s clothes or belongings. It is important to ask and determine what is allowed before the belongings are destroyed or not returned after autopsy.
2. Funeral planning
When your loved one has been declared deceased, your focus shifts to making decisions about funeral or other death rites. Suddenly, you are faced with decisions and choices you may be completely unprepared for. At this moment, it is very important that you reach out for assistance and support. This is also the time when it can be incredibly difficult to balance the wants and needs of others while honoring your own. Friends and family believe they have your best wishes at heart, but they are often influenced by internal biases and unspoken rules or myths that surround all of us in how to deal with a corpse. While we live in a society that has distanced themselves from the tasks associated with death, alternative or non-religious funerals are becoming increasingly popular around the world.
Here are some examples of unspoken rules or norms that can hold us hostage to doing things a certain way.
A. Funeral homes effectively gain ownership of the deceased
- It is very difficult for a family to go against any funeral director’s rules.
- There is pressure from other family/friends to conform to societal rules, including religious requests and beliefs about what is acceptable.
- There is pressure to upgrade and have fancier or better services, caskets, urns, etc. Due to profiteering, families are often pushed to buy additional services or upgrades by the funeral homes.
- Historically, the funeral industry has not openly disclosed funeral prices, and many funeral home websites will not publish a price list, so once they have your loved one, you are at the mercy of their pricing. Ask for and check prices.
- Families are not told that they can build their own containers for cremation or burial. (Note: You must use specific materials.)
- Funeral homes dictate time allowances for family to be with their deceased loved one.
- There are norms about family members having to walk in separately during the funeral service, but for some it feels like they and their grief are on display, and it can be traumatizing.
B. Families can’t take photos, embalming has to be done, or something else…
- Some family members are comforted by things like having photos of their loved ones or clippings of hair. Expressing those wishes may be considered weird or embarrassing by other family members. Knowing you are making others uncomfortable interferes with your own wishes, wants, and needs, so many conform to the status quo. Do not be afraid to act on your wishes; you only have that one chance.
- You don’t have to embalm the body.
- Newer and alternative options to burial or cremation are available (like having ashes placed with the roots of a tree and planting it, etc.) There are now green options if you desire, and many examples are provided by doing a search of the internet.
C. Only the funeral home may transport or store the body of your loved one
- In some places, for example in Alberta, Canada, the family can transport the body. Once the autopsy is completed, they may pick up and transport their loved one home, to the funeral home, or for cremation, but it’s not common knowledge.
- There are alternate ways to help you keep your deceased loved one at home for a certain amount of time prior to burial or cremation. If you have questions, funeral homes may assist with alternatives or ideas. Death doulas are also becoming more prevalent and are an excellent resource.
D. Rules around cremation that are not written in stone
- Families can put some special things (with approval from the cremation center) with the body to be included with cremation.
- You can build your own container for cremation. For example, my dad made a special wooden container for my mom’s cremation, and the grandkids had a chance to decorate it and add special mementos.
- If you choose to, it is important that you take the time needed to say goodbye before cremation. A bereaved mother’s insight, “I only had 19 minutes with my son…”
- Spending time with a non-living body is not for everyone. Some friends and family members, as a way to protect themselves, may not want to see your deceased loved one. But it is important for many to be offered the chance to say their goodbyes. It may help them in their grieving process.
E. Funerals aren’t for children or youth
- Death is as much a part of life as birth. It is important to include children and teens in an appropriate manner and ask how they would like to be included.
Throughout this journey, remember that you do not have to conform to the expectations of others. Many people have become disconnected and uncomfortable with navigating duties following death, preferring instead to have businesses deal with it. However, if you want a more personal or involved experience but are worried about breaking rules or going against norms, ask your well-wishers to help you find out the legal requirements.
When considering alternative or unconventional funeral plans, reflect on and discuss what is important for you, close family members, and friends. Do not be afraid to have open and honest conversations with others about what would be unique, impactful, and wonderful ways to celebrate your loved one. Implementing different ways to celebrate a life may seem difficult due to entrenched rules or our fear of being offensive. While remaining gentle and respectful in your actions and requests, remember there is nothing wrong with finding new ways of honoring our deceased loved ones.
SunLife UK has a website discussing funeral alternatives including a DIY (Do It Yourself) funeral. See their information at this link: https://www.sunlife.co.uk/articles-guides/funeral-planning/alternative-funerals/
3. Myths around your grieving process
Following the death of a loved one, you may be reeling from the feelings of loss while taking care of your family and returning to your new normal. There are many myths surrounding how we deal with death, what is appropriate to talk about, and when we should be “over it.” Here are some things that need to be re-addressed in society. Grief should be normalized.
A. Myths surrounding stages of grief and the timeframe around each stage.
There is a lack of understanding by many people regarding the length of grief and bereavement. We should remember that everyone experiences grief differently. I read the following excerpt on the McGill University website that resonated so much with me and other grieving folks: “The five stages of grief are so ingrained in our cultural consciousness as the natural progression of emotions one experiences after the death of a loved one. However, it turns out that this model is not science-based, does not well describe most people’s experiences, and was never even meant to apply to the bereaved. It is time to realize that grief takes countless forms, is experienced in limitless ways, and cannot possibly be explained by a simple five stage model. When we push this narrative as universal, we alienate those for whom it doesn’t apply and only cause them more pain in an already painful time.
There is no right way to grieve. There is no wrong way to grieve. And I hope that when you experience grief you can take some small comfort in knowing that however you’re feeling is just fine.”
B. Myths around societal expectations about grief
- Societal rules provide a profound influence on how loss and grief are experienced following a death. There is an expectation that we should move on, but as Nora McInerney says in her TED talk, “We don’t move on from grief – we move forward” (a clip from Facebook here).
- Even our workplaces have very limited options for providing resources and time to grieve or cope with a sudden loss, contributing to the myth and expectation that we grieve too long or that grieving should take place on a set timeline.
- As Delphi Ellis of helpingyousparkle.com says, “Society imposes expectations and judges people – especially when they’re grieving – by telling them what they ‘should do,’ how long they ‘should’ grieve, and how they ‘must’ feel. If someone doesn’t cry at the funeral, or if someone does cry but for ‘too long,’ society assumes there’s something wrong with them.”
C. Stigma regarding death, grief and talking about it
- There is stigma around doing anything that’s not normal practice. Even healthcare providers can have unconscious biases or strong religious or outdated beliefs, making them judgmental and thus, unhelpful. Many professionals are not even aware of ways to help break down these barriers for families to achieve peace during this difficult time of their life.
- Many people try hard to avoid difficult conversations, not wanting to discuss the death of their loved one. Knowing this, we put others’ needs first and avoid what makes others feel uncomfortable. However, not talking about those who have passed increases the sense of isolation.
- Here is a link to a video by Megan Devine describing how to help a grieving friend: https://youtu.be/l2zLCCRT-nE
- You may hear, “They’re in a better place,” Get over it,” “Time heals all wounds,” “Grief brings family closer,” and many other unhelpful or inappropriate comments. There seems to be a belief that we forget and shouldn’t be reminded about loss after our loved one dies. People often don’t know what to say and worry about making us feel even worse. Here is a link to Brené Brown’s excellent short video on empathy: https://youtu.be/1Evwgu369Jw
- Remember, people within the family of the deceased may have incredibly different needs and preferences – e.g., one person may hate the word “dead” while another prefers to refer to it this way. We need to respect and understand each other’s needs and wishes while being more open to having these vulnerable and gentle conversations as we remember our loved one.
D. Lack of resources for families
- There is a plethora of online resources, but it can be difficult or overwhelming to find a list of things that need to be done, emotional support, or counseling services, or even know where to start. Hospitals or first responders should plan follow-up calls to check in on family. Most want to help and be more involved but are lacking programs, support, and education. This could be partly explained by privacy laws impacting the ability to support family members.
E. Expectations for a grieving family to cope with paperwork, preparations, and duties.
- Funeral-related paperwork is confusing and overwhelming in nature. For some, it’s intimidating trying to sign the body out, get death certificates, and worry about breaking rules. Sometimes it takes months of effort in closing accounts, dealing with income tax issues, notifying businesses not to send mail, etc.
The weeks, months, and years following the death of a special person can be extraordinarily hard. As you navigate this new world, it is important to reach out for help. Remember to practice self-care as you process the magnitude of what you lost. You are not alone, and others are willing to help.
Here are some things to reflect on as you deal with the death of a loved one:
- Do you need additional help to cope with witnessing your loved one’s collapse?
- Are there differences you desire as you walk on your loved one’s end-of-life care path?
- What conversations will you have with your family if or when you are considering instituting an uncommon practice or unconventional funeral?
- Are you prepared for uncommon requests coming from other family members? How can you support them?
- Would it be helpful for you to prepare or spend more time with the body of your loved one? How will you support those who do or don’t want that time?
- Do you want the option of transporting the body of your loved one yourself?
- Would you prefer to build your own casket or cremation container?
- Is cost a factor, and do you prefer to do things that are more cost effective?
- Are there special items that you would like to place with the body or on the casket?
- Do you have other ideas that would support your family and friends as they grieve?
- Would it help to have alternative ways to cope with the psychological after-effects?
Funeral Facts & Myths- Breaking norms and exploring beautiful possibilities: “Let’s face it, until we actually have to plan a funeral, we don’t often know what’s possible. We are also frequently held back by outdated beliefs. Take a read of articles that dispel common myths and open a world of possibilities.” Retrieved from: https://www.greatgoodbyes.com/ideas/myths
Funeral Homes- Common Funeral Myths Retrieved from: https://funerals.org/?consumers=common-funeral-myths
Champ, L., 17 fascinating myths and facts about funerals, Retrieved from: https://www.clearcremation.co.uk/2020/02/18/myths-about-funerals/
Brasel KJ, Entwistle JW 3rd, Sade RM. Should Family Presence Be Allowed During Cardiopulmonary Resuscitation? Ann Thorac Surg. 2016 Nov;102(5):1438-1443. doi: 10.1016/j.athoracsur.2016.02.011. PMID: 27772571; PMCID: PMC5094278.
The Trauma of Witnessing CPR— Let’s do more to support health professionals and bystanders in the aftermath by Amanda J. Calhoun, MD, MPH January 19, 2023 Retrieved from https://www.medpagetoday.com/opinion/theactivistpsychiatrist/102697
Understanding bereavement: why society needs to learn about grief. Retrieved from: https://helpingyousparkle.com/2019/07/03/understanding-bereavement-and-why-society-needs-to-change-its-views-on-grief-2/
Thank you to our contributors
Kim Ruether & Sachin Agarwal
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