Category: Death Education

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How to help your child deal with the death of a loved one

“The best thing you can do is be present and empathic.”

BY

When I lost my father suddenly to a fatal heart attack four years ago, the pain of loss and subsequent grief were overwhelming. At the time, my husband and I had two little girls (ages 5 and 2), who were very attached to their PopPop Geno, and in many ways, they were my path through grief.

I had to quickly figure out how I was going to walk them through the grieving process while trying to navigate my own emotions. Loss is an inevitable part of life, and the intense sorrow that accompanies the loss of a loved one through death or separation is a normal response. These feelings can be overwhelming and confusing for children who don’t quite understand death.

In preparing children for death, it’s important to be honest, explicit and as concrete as possible without providing too much information. After a loss, avoid saying well-meaning euphemisms for death such as, “he’s gone to sleep forever,” or telling a young child that someone, “…was very sick and died,” which can stoke fear of going to sleep or getting sick for children who are very literal in their thinking. It’s best to have conversations that are simple, honest and developmentally appropriate.

Here are four ways to help children deal with death:

1. Have patience.

Children younger than 8 years old don’t typically understand the permanence of death unless they’ve experienced it first-hand. Even when they’ve acknowledged, “So, Grandpa isn’t coming back?” they may ask days or months later when they will see their loved one again. Our brains are designed to protect us. Research shows that young children will only process loss in small chunks of time. Parents often misunderstand this as them being done with the grieving process or not really understanding what’s happening. Although children grieve for short blocks of time, these can occur over very long periods of months or even years depending on the age of the child. It is important to be patient, answer questions as they arise, and pay attention to behavioral cues. Consistency and establishing a routine is the key to making sure your child feels secure during this period of uncertainty.

2. Develop a narrative.

Often, feelings of change or abandonment can surface depending on how close the friend or family member was to the child. Having a story about that person to hold on to allows them more time to fully process the loss as their capacity to better understand death also develops.

Having a narrative also helps kids understand they didn’t do anything wrong and that they weren’t the reason the person left.

In my case, we opted to talk about good memories and how much their grandfather loved them. Now, they will often do something they are proud of and say, “PopPop would have loved to be here for that!” It continues to let him be present and for my kids to stay in a relationship with him. Remember that if you don’t help your children develop a narrative, they will develop their own.

As you develop a story with them, make sure you share your own feelings as well. It’s hard for a child to understand unexpected emotions, but having a caregiver model feelings can be powerful. Children learn well when they have a vocabulary for these feelings and a model for behaviors that are appropriate expressions of grief. Seeing a parent cry can be scary for them but that experience provides a learning opportunity and therapy for you, too. So, sharing that you are okay but sad right now might help children normalize their own feelings.

3. Create a totem.

Children are such concrete thinkers, meaning they have trouble with abstract concepts, so having a tangible object, such as a picture, item of clothing or even a game or figurine from that person can help ease the transition in their absence.

By allowing a child to transfer significance to a lovey connected to a person they lost, they can also grieve in their own time. Creating a scrapbook with memories and pictures can be a powerful way to process loss together in an experiential way. Try making a game of hunting for meaningful items, pictures and items that represent good times.

4. Give children the chance to say goodbye.

You may decide not to expose your child to the funeral and that’s okay. However, it’s important to let them find a way to help them say their own goodbye. Funeral rituals can provide closure for family members and allow us to grieve in community. Consider having a small family memorial that allows your child to tell their passed loved one about their favorite memory, what they loved about them and what they might miss. At any age, this can be cathartic. If you decide to take your child to the funeral, make sure you prepare them ahead of time that a lot of people will be sad but they are there because they all loved the person who passed.

Above all, respect that your child is handling intense emotions the best way they can. If you don’t have the perfect words, just reflect back what you are hearing your child say. The best thing parents can do is be present and empathic.

Complete Article ↪HERE↩!

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Four things you might not know about your digital afterlife

What happens to your data after you die?

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1 Your digital footprint will one day become your digital remains

If a complete stranger were granted access to every scrap of recorded information about you that exists in the world, would they be able to stand up at your funeral and deliver a personal, moving eulogy that captured the essence of you? Thanks to the modern digital world, the likely answer is yes.

If you’re not active on social media, you might think that you’d be leaving behind very little in the way of a meaningful or personally telling digital legacy. Social media, however, are merely the tip of the little toe when it comes to our digital footprints. Anyone who has access to your devices and accounts after you die – including all the material you never intended to share – could tell quite a lot about you.

Formerly ephemeral communications are now comprehensively stored in searchable, time- and date-stamped emails and message threads. Once untrackable movements are logged by our smartphones, smartwatches, and facial recognition technologies in public spaces. Internet of Things (IoT) devices like video doorbells and virtual assistants are filling our homes.

And our internal desires, thoughts, and feelings can be discerned by innumerable others through our search histories, websites we’ve visited, and the documents and photos we store in cloud accounts and our data-storage devices.

Little wonder that the algorithms seem to know us better than we know ourselves – in this hyperconnected and electronically surveilled world, we are constantly feeding them our data.

A 2019 survey found that 1 in 4 people in the UK want all of these data to be removed from the internet when they die, but no legal or practical mechanisms exist for this to occur. There is no magical switch that is thrown, no virtual worms that traverse the internet nibbling away all traces of us when we die.

Physical death does not equal digital death. Our personal data is simply too voluminous, spread too far and wide throughout the digital world, and too under the control of innumerable third parties to simply call it back home to ‘bury’ it.

2 Social media are becoming digital cemeteries

Dedicated digital cemeteries do exist, the oldest being The World Wide Cemetery, founded in 1995, where people can still visit online graves and leave virtual flowers and tributes. Memorial gardens are dotted around the virtual world Second Life.

Many funeral homes now offer online condolence books, and some physical cemeteries even feature graves with digital components such as video screens or QR codes affixed to traditional headstones. Scores of digital legacy companies appear regularly, often going out of business shortly thereafter.

None of these digital cemeteries can hold a memorial candle, though, to the platforms that never intended to become online places of rest in the first place: sites like Facebook, Instagram, and Twitter.

Facebook has been memorialising profiles in one form or another since the Virginia Tech massacre in 2007, after which users pleaded with the site not to delete profiles that had become memorials for the lost.

Scholars at the Oxford Internet Institute have estimated that the number of deceased users on Facebook could be as high as 4.9 billion by 2100. The dead are also mounting up on Instagram, which also memorialises profiles, and Twitter may follow suit. In November 2019, Twitter cancelled an imminent inactive-account cull in response to an outcry from bereaved people who feared the loss of their deceased loved ones’ Twitter feeds.

Social media companies may be actively trying to work out what to do about the data of the deceased on their servers, but dead people’s information is all over the internet, across all sorts of websites and apps. Many – perhaps even most – of the entities that manage our data are not planning well for the end from the beginning, so information can stick around online for an indeterminate period of time.

We should never assume, however, that online is forever. Disappearance of online data is inevitable through deliberate culls, accidental data loss, and companies going bust.

3 People are struggling to make plans for their digital legacies

It’s not only organisations that are flummoxed by what to do about digital legacies. It’s us, the people who are accumulating them. Less than half of adults in the UK have made a traditional will, and far fewer have considered what will happen to their digital one.

In the Digital Legacy Association’s 2017 Digital Death Survey, 83 per cent of respondents had made no plans at all for their digital legacies. A handful of people – 15.2 per cent – had made their wishes known for their Facebook accounts using the Legacy Contact feature. Legacy Contact allows you to appoint a trusted person to manage your memorialised account after you die, and you can also stipulate if you want the account deleted.

Whether instructions left on Legacy Contact or any other online platform would hold up in UK courts, however, is another matter. As in many realms of modern life, this is an area where laws and regulations are not keeping pace with technology. GDPR and the UK’s Data Protection Act 2018 don’t comment on what should happen to the digitally stored information of the dead, who are no longer entitled to data protection.

Service providers are understandably reluctant to hand over account contents or access to next of kin, especially when that’s likely to compromise other (living) people’s privacy.

Laws governing wills and probate don’t help much either when it comes to digital material. To bequeath something to someone in the UK it has to be tangible or valuable, and your social media profiles might not be judged to be either. In addition, you can’t pass on what you don’t actually own in the first place.

You do not own your social media profiles. Even if you’d like to, you cannot pass on an iTunes or Kindle library, since you have only purchased a license to watch, listen or read while you’re alive. The vast majority of your online accounts and their contents are non-transferable: one account, one user.

It may be a while before coherent, enforceable systems are instituted to govern what should happen to the data of the deceased. Until then, the companies to whom we entrust our data when we’re alive largely decide what happens to it upon death and who can access it.

In this legal and regulatory void, we can only make arrangements as best we can. For sentimental and practical material that might be valuable to our loved ones, we need to leave behind instructions for how to access it or – even better – back it up in secure but accessible formats that are not under the control of online service providers. In the not-too-distant future, digital estate planning may be a career all its own, or at least a necessary component of an existing profession.

4 It is impossible to predict how digital legacies will be meaningful to the bereaved

Our expectations that ‘normal’ grief will follow predictable, orderly stages is encouraged by our algorithmic environment. If you type ‘stages of…’ into a search engine, that engine will likely suggestion completion with ‘grief’. If you type ‘grief’, the engine will likely suggest ‘stages of’.

Despite what you and the algorithms might think, however, bereavement is actually incredibly, spectacularly idiosyncratic. Just as every relationship we have in life is unique, each bereavement is particular too. Despite dominating the popular discourse for the latter half of the 20th Century, Elisabeth Kubler-Ross’ famous grief stages – which were actually based upon qualitative research done with dying people, not bereaved people – boast little empirical support.

Across cultures and millennia, people have continued bonds with their dead in various ways, and we cannot predict what digital artifacts will be important in helping a bereaved person feel a thread of connection to those gone before.

For every person that relies upon a memorialised Facebook profile in their grief, there will be another that wishes it would just disappear. A preserved Twitter profile might be an absolute lifeline to friends, but the family might want it removed, perhaps imagining it’s not important to anyone. There is no rule book for what should and should not be important to someone in grief.

An astonishing and unpredictable variety of digital artifacts have been reported to me as being sentimentally significant to bereaved people. The digital recording of her husband’s heartbeat, stored in iTunes on a widow’s phone. The way that a woman’s brother organised and named his files on his laptop, giving her a window into how he thought and reasoned. A spam email from a woman’s deceased friend whose account was hacked – even though she knew it came from a hacker, she didn’t want to erase it, because it was his name in her inbox. A mother’s search history on her laptop, revealing to her daughter what she was thinking about in the last days of her life.

And finally, Google Street View, haunted by those who are no longer at that address. There is dad, watering the front lawn. There is a fondly remembered pet, peeking out the window of the house. There is grandma, sitting on the porch where she always did, waiting for the school bus to bring her grandchildren home. Even Google Earth is full of ghosts.

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Reimagining End-of-Life Care During the COVID-19 Pandemic

A team of human-centered designers created Famous Last Words, a toolkit to activate agency and intentional connection during the lonely COVID-19 period

By Allison Fonder

If the COVID-19 era has taught the world anything, it’s that no one is a stranger to drastic change or loss. The early phases of the pandemic in 2020 marked the beginning of an especially frightening time for hospitalizations and death—until somewhat recently, patients with severe COVID-19 had no choice but to enter hospitals alone, many tragically dying after intubation with no family by their side.

When designer and founder of Blumline, Natasha Margot Blum, reflected upon the most urgent healthcare challenge of the pandemic, she gravitated toward palliative care, death, and dying. Designers and volunteers all over the world activated in response to the pandemic. One community of healthcare innovators and human-centered designers formed quickly through a Slack group: the Emergency Design Collective. While there were a number of designers working on critical medical equipment like respirators, Blum and other practitioners began contemplating death and the end-of-life experiences that neither patients nor clinicians desired, but were happening by default due to the rapid acceleration and unpredictability of COVID-19.

In 2020, a storm of tragic stories emerged about emergency medicine doctors being forced to make tradeoff decisions around which patients would receive limited ventilators. In addition, there was a panic around how to store bodies of the recently deceased; these stories ultimately catapulted Blum’s impassioned team into action. Gathering her studio, Blumline, and a group of volunteers from the 2020-formed Emergency Design Collective, Blum went on a search to discover what sorts of contributions to current challenges related to death and family planning could have real impact.

Can we design better discussions around end-of-life experiences?

After some time, Blum’s team decided to focus on creating, as she describes it, a “self-discovery tool” that allowed individuals and their families to have a framework for hard conversations in the context of the pandemic. A tool like this didn’t just feel important as a way to discuss death, but as a way to discuss values and make meaning. As Blum notes, the team’s vision was centered around mental health: “it’s about reevaluating who we are and who we want to be so that we can define our identity, our legacy, and have the most rewarding relationships with the people in our lives while we’re still here.”

The team created the framework for what is now Famous Last Words, a website and downloadable playbook designed to facilitate a discovery process for each participating person, and to learn alongside their loved ones. Blum shares, “we created a delicately sequenced conversation, structured with and toward the core principle of agency. People choose their questions, their co-conspirators—the people with whom they want to embark on this learning journey—and the timing themselves. It’s a three-event series that culminates in tougher ethical questions around care at the end. You can’t ask people to start with the tactical first. Traveling from abstract to concrete, as we do in the design process, is essential.”

The document thoughtfully guides family and friends through questions and reflections on life, defining a “good death”, as well as clarifying needs and wishes. Participants are encouraged to conduct these conversations via Zoom in at least three sessions, and create an artifact of notes and memories that can guide care if health deteriorates rapidly, and create a beautiful record when someone does die.

Rapid prototyping & remote-first conversations

The team also implemented the use of technology like Marco Polo, an app that lets people string together video recordings of themselves with notes in their rapid prototyping process. Platforms like Marco Polo not only allow participants to spend more time ruminating on these deep questions, but they also inadvertently create an ephemeral video log of memories and reflections that vividly illustrate a person’s network of care. In the product’s final form, Famous Last Words is platform-agnostic—whether Zoom, Marco Polo, or WhatsApp works best is up to what’s most comfortable for the group.

Marco Polo is used to answer questions within Famous Last Words and create a living narrative during a prototyping experiment with a group of mothers for feedback (who are concerned about generations above and below them in their families).

The Famous Last Words guidebook helps loved ones navigate critical medication conversations, while also recognizing how these conversations are often stopped in their tracks due to their emotional weight and our discomfort with the topic. As Blum puts it, “The whole premise [of Famous Last Words] is that it’s up to you to own your story. This pandemic offers us an opportunity to activate a culture of intentional agency in a time where many people feel like they really don’t have any. And that feeling of helplessness and hopelessness is one that results in unnecessary, and sometimes undesired care. If somebody doesn’t understand the implications of what it means to choose a ‘do not resuscitate’ versus another form of care, that can lead to a lot of challenges. So we’ve tried to build that in the best way possible to guiding people while allowing them space, time, freedom, and ultimately giving them the stimulus.”

Research

Blum and her team’s work at Blumline starts with research, which was an important tenet for a project as serious as Famous Last Words that also required a quick turnaround. The team’s first step was reaching out to workers on the front lines during the pandemic, people like emergency medicine physicians, hospice and palliative care doctors, therapists, and people who lost loved ones. After those conversations and creating a journey map, Blum said with COVID “it became very clear once you cross the threshold into the hospital, your agency decreases immediately. So clearly, the greatest opportunity space is before that happens, and that means we’re working way upstream.”

Once they landed on wanting to focus on facilitating end-of-life conversations, the team began a series of different diary studies and competitive audits in order to sensitively explore questions like, how should the conversation be structured, with a trained moderator or as a mutually-led group conversation? What is the best way to frame death within a guidebook that addresses it so heavily? After rapid prototyping a number of potential solutions, the team decided to create a document that lived on its own in PDF form so it was as accessible as possible.

The journey map that illuminated the real window of agency in the progression of COVID-19 and hospitalization.

Challenges

With such a deeply contemplative mission, it’s easy to see why it would require a dedicated group of volunteer designers to bring something like this to life—but it brings up interesting questions as to how medical professionals must prioritize aspects of care to treat as many people as they do. Projects like Famous Last Words demonstrate that there’s much more room for designers to intervene and allow space for medical systems to explore deeper questions. As Blum puts it, “health care providers don’t think about care in a reductive way, but that’s the way that our healthcare system works—it is fundamentally structured in a way that doesn’t give us a lot of room to engage in care that doesn’t produce an immediate result, relief of a symptom or a situation, and death, dying, and care just doesn’t fit into a clean, idealized silo at all.”

Famous Last Words’ current solution to this problem is to generate support from one’s own personal connections and curious, like-minded people. Conversations are led by friends and family rather than medical professionals, illuminating the power loved ones have in ensuring a person’s death is handled with care. Blum says “There are so many amazing care providers, but a lot of care and certainly a lot of decisions happen in non-transactional, peer-to-peer moments. We don’t have economic structures or incentives to manage care the way we’d ideally want to, but that’s where community organization comes in, and support from pioneers like end-of-life doulas, and radically innovative remote palliative care.”

Famous Last Words guides people to explore the origin of their beliefs around death and dying, introducing a range of provocations and stimulus to spark creativity.

This project serves as a helpful reminder to us all, especially in these fragile times, that it’s crucial to band together as a community to care for our own. Secondly, it’s more important than ever to engage more with the concept of death, and make conversations around what we want for our own end-of-life experience easier. “We’re all going through this together and so it doesn’t make sense to narrow down to a very specific design audience when everyone is thinking about their mortality. That’s why we solicited perspectives from people who had family members or loved ones who were very resistant [to that conversation] so that we could understand how to soften the tone and soften the perception of confrontation,” Blum said. And of course, the team aimed to give the topic the meaningful weight it deserves. Dan [Tuzzeo, design researcher and content strategist] put it beautifully: “it was important to strike a balance between normalizing the conversation while still respecting the subject matter—and the people having the conversation.”

With the delta variant creating yet another curve in this saga, this is still just the beginning of an opportunity to embrace a “re-design your life” mindset, rethinking what life is, and what kind of healthcare and dying experiences are possible.

For anyone who wants to uncover their own values, legacy, and boundaries (which is everyone, the team hopes) while engaging in a meaningful conversation about life and death, Famous Last Words is a great resource—you can access the Famous Last Words playbook here.

Complete Article ↪HERE↩!

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30 Astonishing Facts About Death

By Bess Lovejoy

Death is the start of a great adventure—never mind that you might not be around for it.

  1. You can be declared dead in some states but considered alive in others. That’s because New York and New Jersey allow families to reject the concept of brain death if it goes against their religious beliefs.
  1. One of the first visible signs of death is when the eyes cloud over, as fluid and oxygen stop flowing to the corneas. That can happen within 10 minutes after death if the eyes were open (and 24 hours if the eyes were closed).
  1. Today, there are about 300 bodies frozen in liquid nitrogen in America in the hope that science will one day be able to bring them back to life. (Contrary to popular belief, Walt Disney is not one of them.)
  1. It’s a myth that hair and nails grow after death. What really happens is that the body dries out, so the nail beds and skin on the head retract, making nails, stubble, and hair appear longer.
  1. Rigor mortis is only temporary. It’s a result of certain fibers in the muscle cells becoming linked by chemical bonds, but usually goes away in a day or two as those bonds break down. How long it lasts depends on the temperature in the environment, among other factors.
A corpse flower, or titan arum, known for smelling a lot like death.
  1. Two of the gases responsible for the distinctive smell of death are called putrescine and cadaverine. They’re produced when bacteria break down the amino acids ornithine and lysine, respectively.
  1. Bodies can become covered in what looks like soap after death. Technically known as adipocere (and sometimes also called grave wax), it’s a byproduct of decomposition that happens as the fat in a body decays under wet, anaerobic (lacking in oxygen) conditions. Philadelphia’s Mütter Museum and Washington, D.C.’s Smithsonian each have an adipocere-covered corpse on display.
  1. There are more than 200 corpses of failed climbers frozen on Mount Everest.
  1. The low-temperature, low-oxygen, highly acidic environmental conditions of European peat bogs can preserve bodies with remarkable detail for centuries, and even millennia. One of the most famous examples of these “bog bodies” is the Iron Age Tollund Man in Denmark. When his body was discovered in 1950, it looked so fresh his discoverers thought they’d found a recent murder victim.

  1. Scientists are currently studying the “necrobiome”—all the bacteria and fungi in a corpse—to figure out whether changes in the microbes alone can provide clues to the time of death. The concept is known as the “microbial clock.”
  1. People used to believe that the blood of the freshly executed was a health tonic, and would pay executioners a few coins to drink it warm from the gallows.
  1. “Hop the twig,” “yield the crow a pudding,” “snuff one’s glim,” and “climb the six-foot ladder,” were all once slang terms for death.
  1. Dead bodies generally aren’t dangerous just because they’re dead. But in the 19th century, there was widespread belief in “miasmatic theory,” which said that air coming from rotting corpses and other sources of decay lead to the spread of disease. This belief was more or less replaced by germ theory.

  1. Embalming is rarely required by law, except in certain situation where bodies leave state borders.
  1. The average human body produces between 3 and 9 pounds of cremated remains after being burned. The cremation chamber, known as a retort, can get as hot as 2000 degrees Fahrenheit.
  1. The Victorians often took photos of dead loved ones as part of their grieving process. These postmortem photographs became keepsakes that were displayed in homes, sent to friends and relatives, and worn inside lockets.
  1. In at least one version of telegraph code, LOL meant “loss of life.”
  1. In 897, Pope Stephen VI had the corpse of a previous pope, Formosus, exhumed, perched on a throne, and questioned about his “crimes” (which were mostly about being on the wrong side of a political struggle.) The event is known as the Cadaver Synod.
  1. The term mortician was invented as part of a PR campaign by the funeral industry, which felt it was more customer-friendly than undertaker. The term was chosen after a call for ideas in Embalmer’s Monthly.
A statue of Abraham Lincoln, whose embalming widely popularized the practice
  1. The embalming of Abraham Lincoln for the journey from Washington, D.C. to Springfield, Illinois, is widely credited with encouraging everyday acceptance of the practice.
  1. You’re more likely to be killed at a dance party than while skydiving.
  1. Between the 16th and the early 20th centuries, artists used ground-up mummies as paint pigment. (It was also thought to be a potent medicine.)
  1. The idea that graves need to be 6 feet deep comes from a 1665 plague outbreak in England, when the mayor of London decreed the burial depth to limit the spread of disease.
  1. No Mormon mourning is complete without Mormon funeral potatoes, a cheesy casserole that usually involves cornflakes. Other foods associated with death include pan de muerto (“bread of the dead”), traditionally eaten on Dia De Los Muertos in Mexico; ossa dei morti (“bones of the dead”) cookies in Italy, meant to represent the bones of dead saints; and Victorian funeral biscuits.
Mormon funeral potatoes
  1. Contrary to popular reports, it’s not illegal to die in Longyearbyen, Norway. But since the town has no nursing homes and only a small hospital, residents are required to move to the mainland once they become elderly. It is true that it’s so cold there bodies barely decompose.
  1. “Human composting,” in which bodies decompose into dirt in reusable “recomposition vessels,” is legal in Washington state. The results don’t smell, and are suitable for use in the garden.
  1. The Frozen Dead Guy Days festival in Nederland, Colorado, is held each year in honor of a 110-year-old corpse located in a local Tuff Shed and surrounded by dry ice (it’s a DIY cryonics set-up). The festival features coffin racing, frozen salmon tossing, costumed polar plunging, and frozen t-shirt contests.
Coffin racing at the Frozen Dead Guy Days festival in Nederland, Colorado in 2019
  1. In the 19th century, several inventors came up with “safety coffins” equipped with bells, flags, and air tubes and designed to help people avoid being buried alive.
  1. Although the etiquette guides for Victorian mourning varied widely, widows mourned for a total of two-and-a-half years, while widowers mourned for three months.
  1. In the 17th century and beyond, human skulls were soaked in alcohol to create a tincture called “the King’s drops” that was said to be good for gout, dropsy (edema), and “all fevers putrid or pestilential,” among other ailments. King Charles II of England allegedly paid £6000 for a personal recipe.

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When spouses disagree on the best course of treatment for their kids

Each parent wants what is best for their child, but their version of what that is tends to differ

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When a child is diagnosed with a terminal illness, it changes the family dynamic. For parents, it is devastating news, and regardless of the outcomes, they will never be the same again.

These parents are expected to make difficult medical decisions about treatment for their child. However, they often don’t have the mental or emotional capacity to adequately deal with this heartbreaking situation. They lack an effective support system and the knowledge needed to make truly informed decisions.

In emotionally charged situations like these, I often see parents revert to ingrained beliefs systems and fear-based forms of decision making – simply because they are struggling to come to terms with the reality of what is happening to their child. Unfortunately, this is exactly what can cause disputes between parents about how to proceed with treatment.

Over my 15 years with Chai Lifeline Canada, I’ve seen this happen time and time again. Family conflict is almost unavoidable when the life of a child hangs in the balance. The truth is, each parent wants what is best for their child, but their version of what that is tends to differ. But disagreements can be resolved amicably when parents are provided with support and guidance.

I’ve also seen parents reach compromises on the best course of treatment but, unfortunately, this is not always enough to save their child. This leads to feelings of guilt and resentment. The cycle of blame and guilt can be disastrous for a marriage when both individuals are experiencing intense grief.

I will now delve into how beliefs affect the decision-making process, the most common causes of spousal disagreements, methods to resolve family conflict around treatment for a serious illness, whether a marriage can survive the death of a child, and reasons why the marriage may end anyway.

Studies show that parents tend to make medical decisions based on information provided by clinicians, but how this information is perceived differs according to their personal values and beliefs. Each parent has their own set of values and beliefs that have been formed since childhood and two different world views. This can result in disagreements and family conflict, especially during trying times.

Each parent will frame the information received in their own way to determine what they believe is best for their child. One parent may feel that aggressive or experimental treatment is the only way forward, while the other may feel that their child has suffered through enough medical interventions. Neither is right or wrong, but each wholly believes that their decision is what’s best for their child. Both individuals are simply trying to be good parents in an extremely difficult and unfair situation.

When parents disagree on the best course of action, tensions rise. Incompatible beliefs and conflicting decisions can increase negative emotions such as anger, fear, and guilt in both parents. This mental and emotional stress not only affects both parents but also has a negative impact on the child. When drawn out disagreements lead to treatment delays, the child’s best interest is no longer being considered.

But how can parents move beyond their subjective beliefs to make decisions that are truly good for their ailing child? Is it even possible?

What people believe forms them. Therefore, when contradictory information is introduced, the cognitive dissonance between their belief and reality causes an internal battle. They may logically be aware that one course of action is the better option, yet emotionally they are unable to make it. When both individuals feel this way, it can be tough to reach a resolution.

Once parents understand that their decision-making process is driven by their beliefs, it may become easier to find a compromise that appeases both individuals. However, this depends greatly on their previous ability to resolve conflict. It’s important to acknowledge the factors that cause disagreements between spouses as these tension-causing factors are enhanced during stressful times.

There are, of course, many different factors involved for parents with a terminally ill child. But the main reasons why disagreements develop between spouses in terms of treatment are:

  • A lack of communication
  • Different perspectives
  • Feelings of powerlessness

Poor communication between spouses is the single greatest source of conflict. If a couple had poor communication skills before, dealing with the stress of a seriously ill child is likely to aggravate the problem. A lack of communication between partners can quickly escalate when faced with a difficult situation. This causes a breakdown in trust, avoidance tendencies and arguments. Open, clear, and honest communication is essential for parents to resolve disagreements about medical treatment for their child.

Differing perspectives about the situation are another factor that can cause disagreements. Each person will have a unique perspective based on their internal beliefs and values. This influences how they interpret the information provided by medical professionals and healthcare workers. A person’s perspective will affect how they justify the risks and view the benefits of certain medical treatments. When parents have different perspectives about important issues, disagreements occur. Spouses need to realize that, although their opinions may differ, they still want the same thing – what’s best for their child.

There is nothing more heart-wrenching and disempowering than watching your child struggle with a serious illness. As a result, many parents deal with feelings of powerlessness. This common experience may contribute to the development of disagreements. Parents tend to feel excluded from medical discussions about their child (feeling they are the last to be consulted) or that they haven’t been given enough information to truly make informed decisions. When people feel as if they have lost control over something as important as their child’s health, they will try their best to take back control in any way possible. This can manifest as someone stubbornly sticking to their decision for treatment even though their spouse doesn’t agree or that it may not be the right choice for their child.

In cases where families disagree about treatment, a resolution somehow needs to be reached. When parents are bitterly divided about continuing or discontinuing treatment, the hospital may turn to the court for guidance. Unfortunately, this can delay matters. In the end, it is better for everyone involved if spouses could come to an agreement before a trial is required.

Although parents make many decisions about their child’s medical care, many parties are involved in the process. The child’s care team may consist of the parents, doctors, nurses, specialist physicians, other supportive family members, and in some cases, even the child (depending on age/maturity). Each of these individuals has a right to share their thoughts, voice concerns, or weigh in on treatment decisions. Therefore, if parents cannot agree on a course of action, further discussions with the entire care team are required. An impartial or objective professional could even mediate these discussions to ensure a shared decision is reached.

Since many parents feel like they don’t have adequate knowledge to make an informed decision, a mediated discussion with the medical team can be helpful. During these sessions, the healthcare providers should answer any questions the family members may have. They should also offer as much information as possible in terms of the available options, as well as the benefits and risks involved. If the ill child is old enough, they should also be included in the discussion and have a say in the decision. This may even make it easier for the parents to resolve their disagreement.

A psychological support system can also be helpful for spouses. Counselling can help parents improve their communication skills, understand the basis of their differing perspectives, and come to terms with the situation that is making them feel powerless. A trained professional can help spouses deal with the issues causing disagreements. By expressing their emotions and learning to understand their partner’s perspective, the tension may defuse and allow the conflict to resolve itself. In this manner, they can form a united front and focus their attention on their child, who needs them to be present.

Despite the effort of everyone involved and regardless of the treatment decisions made, the child may die. The death of a child is one of the hardest and most traumatic events that a family can ever experience. Both parents are changed forever after the loss of a child. This puts an enormous amount of stress on a marriage – even a healthy one.

There is a myth that most marriages (80 to 90 per cent) will fail after the loss of a child in any manner. However, the truth is that only about 16  to 20 per cent of marriages end as a direct result of a child’s death. Instead, this type of trauma tends to put a spotlight on the existing properties of the marriage. Consequently, some marriages will get worse, others will improve, some may simply continue without much change, while others will end in divorce. It all depends on the strength and health of the marriage before the trauma.

With extenuating circumstances, such as the stressful months or years that their child was sick, the risk of divorce increases. When spouses are opposed to treatment options, this can cause further tension. One parent may feel guilt that they proceeded with their choice, resulting in the passing of their child. At the same time, the other parent may feel resentful that their decision wasn’t followed and blame their spouse. A cycle of guilt and blame combined with intense grief can easily destroy even the strongest marriage.

There are many reasons why a marriage may end after the loss of a child. But three main factors will ultimately affect the outcome:

  • The different ways in which individuals grieve (specifically the differences between males and females).
  • An inability for spouses to meet the needs of their partner during the grieving process.
  • The nature and circumstances of the death (a long, stress-filled period of illness) influences the grief response.

People grieve in different ways. The very nature of grief makes it a subjective experience. Grief is a long-term process, not a once-off event. In any other situation, spouses serve to comfort each other during times of grief. But when both partners are experiencing the raw grief that accompanies the loss of a child, they may find it difficult to comfort and support each other. This is because the mode of grieving for each individual can change from moment to moment. Neither spouse will be in the same mindset simultaneously, which can cause misunderstandings and feelings of being disconnected.

Males and females also tend to process grief in different ways. Women and especially mothers will feel intense grief for longer periods. On the other hand, men usually become more task orientated as a way to manage their grief. When confronted with grief, women will show their emotions openly while men will release their emotions privately.

These differences can make each spouse feel as if they’re going through the experience alone. Essentially, problems in the marriage occur during this time because each spouse is grieving in their own way, making them unable to meet the needs of their partner. This is not intentional. Most parents can barely meet their own needs, let alone anyone else’s, after the death of their child. Grieving people turn inwards, focusing on their own emotions and leaving little energy for anything else. Even though they are grieving simultaneously, each partner will suffer from a profound sense of isolation. When people feel that their grief is not being understood or their partner can’t meet their needs, it puts additional strain on a marriage.

Finally, the nature and circumstances of the child’s death can also influence the parents’ grief responses. Generally, parents experience less guilt if the child dies an anticipated death. Unfortunately, this is not the case if they disagreed about treatment. The prolonged anticipatory grief likely exacerbated the marital relationship as well. Often, parents of seriously ill children deal with many compounding stressors such as financial issues due to medical bills or pressure from clinicians about treatment. All of this can have devastating consequences for their marriage.

Parents of terminally ill children need support systems. Open and honest communication with each other and the health care team should be established from the onset. Conflict will only be resolved if parents feel empowered to make informed decisions about their child’s well-being. Regardless of the state of their relationship, bereaved parents need to seek support from organizations such as The Compassionate Friends to overcome their grief or even save their marriage. There are many resources available aimed specifically at supporting families throughout the entire process.

With the proper support systems, open communication and a solid foundation, it is possible to move past tragedy as a united front.

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The Best Books to Help You Cope With Death and Dying

How the wisdom of Joan Didion, death doulas, and Big Bird have prepped me to dance into the void (and plan my estate).

by Mary Frances Knapp

The chillest people I know are the ones surrounded by death. I’ve spoken with a lot of them over the years: end-of-life doulas, hospice workers, embalmers; eco-coffin designers, grief counselors, and country homesteaders; all of whom look their inevitable demise square in the face. They’ve all taught me something different about death and dying, but they’ve also driven home a similar point: Death doesn’t have to be this freaky egg that gets cracked on your head out of the blue. Death—rather, dying—is a process, and that process is what you make of it.

One of my first writing gigs in college was all about death (which is why I’m on this coffin-shaped soap box in the first place). I freelanced for an end-of-life planning business in San Francisco, which was part practical, local resource for what to do after a loved one dies, and part death blog (that was my jam). We were always careful not to stew in topics related to death and dying in a macabre way—the landing page was baby blue, and blogging topics ranged from DIY crafts for memorializing loved ones to learning more about biodegradable urns. Why on Earth they let a 19-year-old with no knowledge of funeral homes write for them is beyond me, but I’m so glad they did. I learned that when you’re constantly surrounded by death, it doesn’t feel as foreign and unnavigable. Of course, those in the death and dying industry don’t become magically exempt from the emotional demands of death, and having the time and resources to live and die well is a privilege. But in the years I spent learning about estate planning, or talking to home health aides about what you can do literally moments after a loved one has died to find some peace, I learned that dying well is just like living well: You reap what you sow.

So where do you start? Books. Read what other people have been through in hospitals, at home, or with their own existential crises. While the titles below are hardly a definitive guide to death and end-of-life planning, they’re the ones that have helped me feel better prepared to dance into the void.

No one does death like le French

Simone de Beauvoir is a *chef’s kiss* great Frenchy to hold your hand through the topic of death. This is one of the author’s most beloved books from the 1960s, and it takes you through the experience of her mother’s death with an acute sensitivity to detail; it’s Beauvoir’s talent for focusing on the more “banal” moments of terminal illnesses and dying with philosophical panache that makes it so good.

A Very Easy Death by Simone de Beauvoir

Learn how physicians feel about patient care

This one reads like a diary, if diaries were super exacting tell-alls by medical professionals. Author and doctor Ira Byock is a palliative care physician, and getting insights into the strides and pitfalls of his end-of-life care experiences teaches you a lot about the kinds of questions you’ll want to ask when/if you ever end up navigating similar situations and medical institutions. It’s the kind of book that just makes you feel like you have someone on your side, even in the face of daunting health scares.

The Best Care Possible by Ira Byock

Yes, there are end of life doulas

We usually think of doulas as kindly granola folk who help bring wee babes into this world, but there are also doulas and death midwives who are trained to accompany those who are dying and usher them into whatever comes next. I’ve spoken with a lot of them over the years, but this book rec actually comes from a friend who just started pursuing a career in end-of-life care. “I picked up this book to learn more about reclaiming deathcare as a sacred, holistic, and intimate practice,” she told me, saying she’d absolutely suggest this book for those who could see themselves in a similar profession, or who just want to learn more about the above.


Anne-Marie Keppel

Death Nesting by Anne-Marie Keppel

There’s room for creativity

Overall, I think the United States has this knee-jerk reaction to sterilize the processes of death and dying. We exact our funerary ceremonies with a kind of uniformity and somberness—which is fair. Death is hard, and everyone grieves differently. But, dude. Have you ever seen the coffins in Ghana? They’re beautiful, and personal. A really celebratory labor of love.

The Buried Treasures Of The Ga: Coffin Art In Ghana by Regula Tschumi

Raise your hand if you’ve got daddy issues

A hard read, but a super cathartic memoir by Jesmyn Ward for anyone who has lost a loved one at a young age, or who tightrope-walks their relationship with their parents. The book follows the author’s relationships with five different people in that sense, and it’s also a powerful portrait of what it means to live and mourn as a Black person in the American South.

Men We Reaped: A Memoir by Jesmyn Ward

That’s one way to cope

We’ve all had it happen, or seen it happen to someone else: Rather than confront our grief, we pour ourselves into a new hobby or time-suck pursuit (cc: all those quarantine sourdough loaves). And that’s OK. There’s no etched-in-stone timeline for grief, and this memoir by Long Litt Woon, written about her late husband, is a great reminder of that; it’s about all the curious, dark, and beautiful places our grief can take us, such as mushroom hunting. “Long tells the story of finding hope after despair lightly and artfully,” writes the New York Times in a review that I think really hits the nail on the head. “[She writes with] self-effacement and so much gentle good nature that we forgot how sad she (and we) are.” Then, like the narrator, we remember. But guess what? We’re still in one piece. 

The Way Through the Woods by Long Litt Woon

If you’re not spiritual…

… Then read every essay and book by Joan Didion, honestly. Her writing will spoon feed you a tough yet deeply observant love, and feels like getting a sit-down chat from your most level-headed relative about hippies, the Pioneer West, and, in this case, the death of her husband and collaborator John Gregory Dunne. So many books on death and dying are deeply spiritual or religious, but for those of us who have only ever had faith in logic and, IDK, Pokémon, Didion is your gal. No one else writes quite like her about the surreal logic of grief-brain with as much honesty and accuracy. 

The Year of Magical Thinking by Joan Didion

One for the kids

Do you have Muppet Feels? (Of course you do.) You might remember the legendary Sesame Street episode where Big Bird deals with Mr. Hooper’s passing. Heavy shit, man. The children’s book adaptation of that episode brings the same nuanced tenderness of the show, and literally everything in life is better when Big Bird is by your side. Give this to a kid, or anyone going through it.

I’ll Miss You, Mr. Hooper by Sesame Street

See you in the next life.

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Qualitative Study Shares Strategies for Successful End of Life Conversations for Patients With Cancer

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End-of-life (EOL) discussions such as advanced care, palliative care, and discontinuation of treatment are consistently being missed, according to a study published in JAMA Network Open; however, investigators highlighted existing strategies that are being utilized to achieve successful EOL conversations.

Investigators found that out of 423 outpatients encounters with 141 patients with advanced cancer, only 21 encounters (5%) included EOL discussions. When investigators included a random sample of 93 encounters, 35 encounters (35%) included missed opportunities for EOL conversations. Three patient/oncologist dyads had more than 1 encounter with a conversation pertaining to EOL, which translated to 17 of 141 dyads (12%) having at least 1 event of EOL discourse. The dyads included 13 of 39 oncologists (33%).

“In this secondary analysis of outpatient oncology visits, EOL discussions were rare and missed opportunities for these discussions were common. When oncologists did discuss EOL, they framed it around trade-offs, anticipatory guidance, and acknowledging patients as experts,” investigators of the study said. 

Investigators identified 3 strategies that are being used to navigate opportunities for successful EOL conversations:

Those who take advantage of opportunities for EOL discussions are able to reevaluate treatment options based on patients’ concerns, outlining the risks and benefits between treatment continuation and discontinuation. When suggesting chemotherapy for treatment, it is imperative to be transparent in letting patients know it could prolong survival, but there would be discomfort from adverse effects, the investigators stated. This allows the patients to make decisions about their own future.

Another strategy that has been utilized when making EOL decisions is allowing patients to be experts on their treatment decisions in order to meet their goals. This was accomplished by positing questions such as “What would you like?” and “What was the goal you would like to attain?”. By exploring a patient’s goals and allowing them to lead the conversation, the patient can shape treatment recommendations. Patients are able to explore their thoughts and feelings with regard to treatment discontinuation in a manner that is approachable. This allows one to act as a facilitator who creates an environment of reflection, while the patient shifts their focus to decision making.

The use anticipatory guidance to frame conversations pertaining to treatment reevaluation is another useful strategy. Anticipatory guidance can be used to identify a potential timeframe in which patients will need to make decisions regarding quality of life over cancer-directed treatments. During this time, it is the oncologist’s responsibility to provide sign posts to convey when it may be time to consider quality of life over treatment. This helps patients set appropriates goals and limits as to when they might like to discontinue treatment.

There are a number of hurdles that lead to missed opportunities for or deflected EOL conversations, one of which including responding inadequately to patient concerns. Patients who are concerned about disease progression or dying are often met with partial, avoidant, or absent responses instead of opening the conversation about EOL, which limits the opportunity for patients’ conversations around goals, values, and preferences. Additionally, giving little to no response when a patient expresses fear at the idea of living for years with late stage disease could prevent the occurrence of conversations around disease burden, treatment decision making, and EOL care.

Although speaking about the future optimistically may seem helpful it does little to address patient concerns. Instead of using anecdotes about other patients who exceeded life expectancy, consider using that moment to realistically discuss the patient’s prognosis.

Additionally, expressing concern over patient’s decision to discontinue treatment could be another opportunity for a missed discussion. Although one might be able to justify their treatment decisions by stating that they are in line with the patient’s goal, it is a missed chance for discourse pertaining to quality of life and treatment goals. Moreover, declaring a patient’s next steps for treatment without holding a proper conversation is yet another missed opportunity wherein a conversation about the patient’s options could have taken place.

“Although we recognize that not every patient or appointment may necessitate an EOL discussion, all patients in this study had stage IV malignant neoplasm and their oncologists had previously acknowledged that they ‘would not be surprised if they were admitted to an intensive care unit or died within one year.’ Despite the urgent necessity of EOL discussions within this population, we found far more missed opportunities than actual discussions in this analysis,” the investigators concluded.

Reference

Knutzen KE, Sacks OA, Brody-Bizar OC, et al. Actual and missed opportunities for end-of-life care discussions with oncology patients: A qualitative study. JAMA Netw Open. 2021;4(6):e2113193. doi:10.1001/jamanetworkopen.2021.13193

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