Advance Directives

— What You Need To Know

By Jennifer Lagemann

Only one in three U.S. adults has an official plan in place for end-of-life care, according to research in Life Affairs. Formalizing these details when you’re able to do so can make a world of difference for you and your loved ones down the line.

Read on to learn about advance directives, including what they are, why they’re important, what challenges may arise and how to ensure your or your loved one’s wishes are in writing so they’re more likely to be honored if and when the time comes.

Advance directives are written instructions regarding what a person wants in terms of health treatment and care should they lose the capacity to voice these desires. Samantha Winemaker, M.D., a palliative care physician and co-host of the Waiting Room Revolution podcast, defines advance directives as “an expression of someone’s values and wishes based on what’s most important to them in their life.”

Advance directives were first introduced in the U.S. in 1967 as a component of advance care planning. Reaching a step beyond informed consent, they help people prepare for inevitable and unpredictable life events that can impact a person’s ability to direct their own care. These documents provide space in which patients can wield more power and autonomy in shaping their health care experiences, particularly as it relates to end-of-life care, says Dr. Winemaker.

Types of Advance Directives

There are several types of advance directives, including (but not limited to) living wills, health care powers of attorney, do-not-resuscitate (DNR) orders and physician orders for life-saving treatment, says Ferdinando Mirarchi, D.O., chief medical officer of the Institute on HealthCare Directives.

Physician orders for life-saving treatment (POLSTs) outline a plan of end-of-life care that reflects the patient’s care preferences as well as their health care provider’s judgment based on a medical evaluation. This advance directive is only valid once agreed upon and signed by both parties.

A living will is a written document that outlines a person’s health care wishes for end-of-life care in the event that something prevents them from voicing their own values, wants, wishes and needs for whatever reason and they cannot make such decisions on their own. Living wills typically tell health care providers what treatments the person does or doesn’t want when the individual no longer has the competency to make such decisions, and some include religious preferences as well.

“They are [written] documents that provide a way to express your wishes if you can’t speak for yourself,” adds Dr. Mirarchi.

A health care power of attorney, also called a health care proxy or health care agent, is someone a person appoints or designates to advocate for them in the event that they can no longer advocate for themselves.

The importance of choosing a power of attorney cannot be overstated. Dr. Winemaker describes the role as a culmination of all the previous conversations they’ve had with the person about what they value and the tradeoffs they’re willing to make. They need to pick what the person they’re advocating for would want and put their wishes in the context of the given situation. A power of attorney is only as good as how well they know their role, says Dr. Winemaker.

Do-not-resuscitate (DNR) orders are medical orders written by a doctor explicitly instructing health care providers not to use cardiopulmonary resuscitation (CPR) should the patient’s breathing stop or heart stop beating. “Depending on the state, these orders can also be written as a cardiopulmonary arrest,” Dr. Mirarchi.

Various guidelines for each of these advance directive documents are outlined in state laws and often templated by specialized attorneys. You may also create similar documents on your own. The more specific a person is with the information they include in an advance directive, the more closely their wishes will be followed when the time comes.

Why Are Advance Directives Important?

Advance directives are essential for patient autonomy. They empower a person to have their wishes honored in the event that they’re no longer able to speak for themselves.

What’s more, the use of advance directives is linked to higher utilization rates of palliative care (health care for people living with a serious illness), reduced stress toward end of life, improved communication between health care teams and patients’ families, and reduced health care costs, according to research in the Journal of Gerontological Nursing.

It’s important to understand the broader context of how advance directives play a role in how people experience health care. “We have to [acknowledge] that 90% of us will end up with some condition that will result in multiple [health care] decisions,” says Dr. Winemaker. “We have to [be ready to] make [these] decisions for ourselves and [others]. It’s not ‘if’— it’s ‘when.’”

Coordinate with your or your loved one’s health care team to keep time on your side, advises Dr. Winemaker. “Don’t put yourself at a disadvantage or work in crisis mode. This is a part of life, and just like with everything else, planning is the best medicine,” she says.

Dr. Winemaker also explains that it’s important for patients to play a more active, consumerist role in their health appointments by expressing person-centered requests.

“The health care system is all about bi-directional sharing—it helps diagnose an illness and treat the illness,” she says. Often, the goal is to keep people going for as long as possible and keep the illness quiet as long as possible. However, quality of life is often superseded by the pursuit of longevity. So, it’s crucial to be open, honest and proactive with your care team so they can make recommendations and treatment plans that best suit your specific situation and personal preferences.

In fact, the point of an advance directive and participating in advance care planning is to go against the health care conveyor belt—you won’t get what you need unless you’re vocal about your wishes, says Dr. Winemaker. Your treatment plan should reflect who you are.

When Should You Make Advance Directives?

There’s no “best” time to file advance directives, but Dr. Winemaker says the sooner they’re in place, the better. And remember care planning is not a one-off conversation, but rather a series of discussions with your loved ones and yourself about what suits you best.

“When you’re healthy, reflect on what movies you watch on Netflix,” suggests Dr. Winemaker. “Think of ‘The Notebook’ or ‘Still Alice.’ What would you do in either of those situations? Think of yourself in multiple scenarios and what you’d want, and share those [details] with people around you as soon as possible.

Meanwhile, there are certain points in life when it can be advantageous to update advance directives, says Dr. Winemaker, which include (but aren’t limited to):

  • When you become a partner or spouse
  • When you become a parent
  • When you lose someone important to you
  • When your contact information (telephone number, physical address, email address, etc.) changes
  • When your selected health care power of attorney is deceased or you want to select another person in their place

Generally, advance care plans or advance directives should be updated and reviewed annually similar to how you schedule an annual health care appointment with your primary care physician.

When Are Advance Directives Implemented?

Each type of advance directive serves a unique purpose and is implemented in certain situations.

POLSTs are implemented once both the patient and their health care provider agree and sign off on a medical treatment plan as it relates to the person’s current health status.

Living wills go into effect when the person enters any of the conditions listed in their living will document. At this point, the document becomes operative and is followed by all care team members, explains Dr. Mirarchi.

Meanwhile, a health care power of attorney can be utilized at any point in a person’s life when they aren’t able to make a health decision for themselves, be it due to an acute health emergency or progression of a chronic illness.

And DNR orders become active when a person stops breathing or their heart stops beating, at which time the care team isn’t allowed to perform CPR to resuscitate them.

What Happens if You Don’t Have Advance Directives?

Without advance directives, the specific outcomes of your care are more uncertain. “From a health care perspective, there are times when the health care team can act in an emergency in the patient’s best interest, but that’s reactive care—not proactive care,” says Dr. Winemaker. You or your loved one likely wants to be in a position of control over their care, which requires having a plan.

“If it’s not an emergency situation, [the health care team has] to try to find people who are in the person’s life. Ultimately, if a decision needs to be made, they can also go to a higher-level attorney or representative,” explains Dr. Winemaker. There are various contacts the health care system can use to make a legal decision on a patient’s behalf.

Unaware of what a patient wants, the health care team and family members they’re able to contact are often left to make decisions based on what they think they know about the patient. Naturally, a lack of advance directives in such circumstances can cause undue stress and burden for loved ones who, even with good intentions, might make the wrong decisions for the person in need of care.

Common Challenges With Advance Directives

According to Dr. Mirarchi, one common challenge with advance directives is something he refers to as “medical stranger danger.” Advance directives are documents often written with the help of attorneys and then interpreted by health care professionals, explains Dr. Mirarchi, so it’s not surprising that misunderstandings that can turn into medical errors occur. More specifically, his research shows advance directives can “get prematurely misinterpreted as a DNR order, and DNR orders can get misinterpreted as do-not-treat orders.” However, he adds that while most people in medicine are “medical strangers” to you, your doctors are often people who actually know you well enough to make informed decisions as it pertains to your care.

The goal is for the health care team to make decisions that honor what a person says they want, says Dr. Winemaker. There’s a process to override someone if they’re not making a fit or good decision, but you typically don’t have to escalate a situation to that level. And often, a person’s decision is coming from a good place.

There’s no time like the present to get started on your advance directives if you haven’t already— and encourage your loved ones to do the same. Once you have them in place, remember to review them at regular intervals as well to make sure they still represent your wishes and desires.

Complete Article HERE!

End of Life Stages Timeline

— What to Expect

By Angela Morrow, RN, BSN, CHPN

When a person is dying there is an end-of-life stages timeline that can help their loved ones understand what is happening to them.

The dying process usually begins well before death takes place. Sometimes, you can recognize the signs that a person is dying by the physical, mental, and emotional changes that are part of the end-of-life timeline.

Death is a deeply personal journey. Nothing about the process is certain or set in stone except for the outcome. There are many paths a dying person can take, but the stages at the end of life do have some similarities.

This article will go over the end-of-life timeline. You will learn about each stage of dying, starting with what happens about one to three months before death; during the last two weeks before death, and in the last few days of life. Understanding the signs of each stage of death will help you prepare and understand what is happening when your loved one is dying.

The End of Life Stages Timeline

The end-of-life timeline starts when someone is very ill and will not recover. At this point, your loved one may have been ill for a long time, or they may have just recently learned that the end is near. In either case, the dying process is set in motion.

Dying is a journey from the known life of this world to the unknown of what lies ahead. Each person starts on a mental path of discovery knowing that death will happen and believing in their own mortality. Ultimately, they will leave their body.

There are several milestones on the dying journey, but not everyone stops at them all. Some people may stop at only a few, while others experience each one and take their time throughout the process of dying. Sometimes, the process takes only days, while other people travel a road for months.

While the paths they take can differ, here’s where the dying process begins for most people.

End of Life Timeline: 1 to 3 Months Before Death

The dying process often comes into view about one to three months before death. Many of the experiences that take place at this first end-of-life stage are broadly common but the specifics can depend on the individual.

There are also social and cultural factors that shape a person’s dying experience—for example, gender roles can be a factor. Research has shown that men are less likely than women to openly talk about their mortality and end-of-life wishes. One reason might be that men find it more difficult to ask for help and want to avoid coming across as being “needy.”

That said, these differences are not necessarily unique to one gender identity; there are plenty of women who struggle to talk about their death and do not want their loved ones to feel “burdened” by caring for them during the dying process.

As a person approaches their death, their religious and cultural background also influences how they feel about the dying process. Depending on their beliefs, certain practices, rituals, and customs can be steps along the end-of-life timeline.

Mental and Behavioral Changes

As a person starts to accept their mortality and realizes that death is approaching, they may start to withdraw. They are beginning the process of separating from the world and the people in it.

During this stage, your loved one may say no to visits from friends, neighbors, and even family. When they do accept visitors, it might be hard for them to interact with you. In those moments, you may struggle with your feelings about them because you feel rejected.

This stage is also one of reflection. A dying person is thinking about their life and revisiting old memories.

Physical Changes

As the body starts to slow down, a dying person may have a reduced appetite and weight loss. This is actually OK because the body no longer needs as much energy. A dying person may start sleeping more and stop doing their regular activities—another reason why they need less nourishment.

The body chemistry is naturally altered during this end-of-life stage and that can cause a mild sense of happiness and well-being (euphoria).

The dying person may stop feeling hungry or thirsty at this stage. While this can alarm their loved ones, they are not suffering in any way by not eating; it is an expected part of the journey they are taking.

End of Life Timeline: 1 to 2 Weeks Before Death

The dying process starts to move faster in the last week or two of a person’s life. The acceleration can be frightening for their loved ones, especially if they are upset by the changes taking place.

As your loved ones’ death is approaching, you may want to “correct” them if they say things that don’t make sense but try not to. At this stage, it’s better to listen to and support your loved one.

For example, your loved one might say that they see or hear a person who died before them. In those moments, just let your loved one tell you about it. You might feel frustrated because you can’t know for sure what they are going through in those moments—are they hallucinating? Are they having a spiritual experience? The uncertainty can be unsettling but it’s part of the process. The best thing you can do is love them.

Mental and Behavioral Changes

During this stage of the end-of-life timeline, a person will mostly be sleeping. When they are awake, confusion and altered senses are common. It’s possible that a loved one will experience delusions, like fearing hidden enemies or feeling invincible. It can be hard for you to witness these changes, but it’s important that you remain supportive.

The dying person may have hallucinations at this stage. They may see or speak to people who are not there, including those who have already died. Sometimes, people feel that this is like the veil between two worlds lifting.

The dying person can be restless during this time. They may pick at their bedsheets or clothing and their movements and actions can seem aimless and make little sense to those around them.

Physical Changes

At this point in the end-of-life timeline, a dying person’s body is having a hard time maintaining itself. Your loved one may need help with just about any form of activity. For example, a person may have trouble swallowing medications or may refuse to take the ones they are prescribed. If they have been taking pills for pain, they may need liquid morphine now.

During this end-of-life stage, signs that death is near include:

  • Body temperature that’s a degree lower than normal (or more)
  • Lower blood pressure
  • An irregular pulse that may slow down or speed up
  • Increased sweating
  • Skin color changes, with pale or bluish lips and nail beds
  • Breathing changes (e.g., a rattling sound and cough)
  • Less or no talking
  • Sudden arm or leg motions

End of Life Timeline: Days to Hours Before Death

The last couple of days before death can surprise family members. At this stage, your loved one may have a sudden surge of energy as they get closer to death. They may want to get out of bed, talk to loved ones, or eat food after having no appetite for days or weeks.

You may take these actions as signs that a dying person is getting better, but the energy will soon go away. It can be hurtful to watch this happen but know that this is a common step within the end-of-life timeline. These energy bursts are a dying person’s final physical acts before moving on.

The surges of activity are usually short. The previous signs of being close to death return more strongly once the energy has been spent.
At this stage, a dying person’s breathing becomes more irregular and slower. Rapid breaths followed by periods of no breathing at all

(Cheyne-Stokes breathing) may occur. You may also hear a “rattling” sound as a dying person breathes.

These changes can be unpleasant to witness but you should try to remember that your loved one is not uncomfortable.

Your loved one’s hands and feet may start looking blotchy, purplish, or mottled. The changes in skin appearance may slowly go up the person’s arms and legs. Their lips and nail beds will turn bluish or purple, and their lips may droop.

At this end-of-life stage, a dying person usually becomes unresponsive. They may have their eyes open but not be able to see their surroundings. It is widely believed that hearing is the last sense to leave a dying person. Knowing this can remind you that it’s still valuable to sit with and talk to your dying loved one during this time.

When your loved one stops breathing and their heart stops beating, death has occurred. They have reached the end of their journey.

Summary

Many people wonder if they will recognize that a loved one is dying. There are often signs that begin a month to three months before death. Knowing these signs may help you prepare for your loved one’s death, and bring comfort to you as you face the physical and mental changes that happen along the end-of-life timeline.

Complete Article HERE!

Researchers Identify 8 Signs of Impending Death

Findings could help families prepare and aid in end-of-life care choices

By

Researchers say they have identified eight specific physical signs that strongly indicate that someone with advanced cancer is entering the last days of life.

The investigators focused on telltale signs that a patient has, at most, just three days to live. The hope is that this information will help family members and other caregivers better handle an impending death, as well as be more prepared for choices that may have to be made during end-of-life care.

“I think the bottom line is that our study identified several classical signs that can be observed by the bedside by doctors, nurses and even family caregivers, which may help them to determine with confidence that the patient has entered the final days of life,” said study lead author Dr. David Hui. He is an assistant professor in the department of palliative care and rehabilitation medicine at the University of Texas MD Anderson Cancer Center in Houston.

He also said that “we believe these signs may apply to both cancer and even non-cancer patients, because these signs occur as part of the natural process of dying.”

Hui and his colleagues reported their findings in the Feb. 9 online edition of Cancer.

To compile their list, the researchers monitored physical changes that occurred just prior to death among more than 350 advanced-stage cancer patients. They were being treated at one of two cancer centers: one in the United States and one in Brazil. All of the patients were in an acute palliative (end-of-life) care unit.

Physical changes were noted twice daily, according to the study.

During the study time frame, more than half (57 percent) of the patients died. And in the end, the authors settled on eight indicators that seemed to most accurately predict imminent death.

Those included: an inability to close the eyelids; diminishing ability to react to visual stimulation; a reduced ability to react to sounds and words; facial drooping; non-reactive pupils; hyperextension of the neck (this causes the head to tilt further back when lying down); vocal cord grunting; and bleeding in the upper digestive tract.

“It is important to point out that only a small proportion of patients may have each of the signs before death,” said Hui, “although a majority would have at least one of the signs in the last three days of life. The presence of these signs strongly suggests that death will occur in the next three days. However, absence of these signs does not suggest that death will not occur.”

Some signs seemed to be more common than others, with some occurring among just 5 percent of the patients while others were seen among nearly 80 percent during the last three days of life, according to the study.

Hui also cautioned that there will always be exceptions to the rule, and his team’s list will not cover all situations. Exceptions, he said, would include cases of sudden death or when intensive care unit patients are breathing by means of mechanical ventilation.

Dr. R. Sean Morrison is director of the Lilian and Benjamin Hertzberg Palliative Care Institute at the Mount Sinai Icahn School of Medicine in New York City. He said that, while doctors are already very familiar with signs of impending death, the list could be very helpful for families struggling to come to grips with a disorienting set of circumstances.

“Within the palliative care community, this is very well understood,” Morrison noted. “And this is certainly not just about cancer. This would apply to anyone dying of heart disease, lung disease or even dementia, because the symptoms that are identified in this cancer population are almost universal for anyone approaching the end of life.

“But from a clinical perspective as physicians, I don’t think this list will prove terribly helpful,” he added. “Because what we’re talking about here is really people hours from death who really can’t respond or are not interactive or are essentially in a coma approaching death. So I would hope and expect that by this point a discussion of patient goals and family needs would have already taken place, long before, along with any decisions about blood tests and treatments.”

Still, Morrison said the list could be “helpful for the family, and for helping us guide families. Because one of the things that families wrestle with is how long do I have with my loved one? And we’re not always that good at predicting that. So this may help give families a time frame for knowing how long the vigil is going to be.”

Complete Article HERE!

What Comes After Death?

— Clinicians can help young patients integrate existing belief systems to process grief

By Rebecca Morse, PhD, MA

I once attended a funeral during which the guests were invited to take a flower from atop a young mother’s casket as a memento. A little boy, her son, was being held by his father. He had been remarkably quiet throughout the funeral and interment process up to this point. Then, I began watching him, watch them. He was looking from the line of people to the casket, to his father, to the line of people, to the casket, to his father. He was starting to fidget. And suddenly, amid the silence, he asked his father “Daddy! Why are they taking mommy’s flowers? They are the lastest she’ll ever have?!”

The purpose of this story? To emphasize that this little boy, with only a handful of years on this earth, who couldn’t possibly have a full, contextual understanding of death, on some minute yet significant level got it. His mother would never get more flowers. At least, none she would be able to appreciate.

Last month, I wrote about how medical professionals should always provide honest and fact-based information when talking to pediatric patients about dying. Yet the question remains: What comes after death?

Children may not ask questions indicative of an existential crisis. They often ask very practical questions: What happens after we die? What will happen to me after I die? Is there a heaven? We must educate those who work with and around children: kids live in a world where death exists and we don’t help them if we don’t tell them, help scaffold their understanding, and better their ability to process difficult emotions.

Having established that children understand more than we recognize, how do we, as health professionals, discuss what comes next? First, the pragmatic recommendations: When discussing anything with a child, it’s best to ensure that the parents or legal guardians know what you will be sharing and why. Second, it’s critical to be mindful of culture. Depending on the family’s background there may be constraints or considerations integral to their belief system. And although the goal is transparency and honesty, to establish a trusting relationship with the child, it doesn’t help if the healthcare professionals and guardians are at odds with one another.

It can also be helpful to ask the child what they know already. What have they learned from their family? What does the child think? Children are remarkable observers. They “science” the world around them; correlation does imply causation to them. So, knowing and being able to understand their existing framework or cognitive schema(s) will help guide you in what to say. Even a child as young as 3 or 4 years old can make correlational connections, as did the young child in my story.

In my thanatology courses on children and death, I often require students to watch the movie “Ponette.” It’s a perfect example of what not to do. As each adult and older child gives Ponette different responses after her mother dies, she now must navigate conflicting narratives. And none of it makes sense to Ponette, who is engaging in a very healthy grief response: seeking proximity to her deceased mother and wanting to find ways to communicate with her spirit.

When discussing the afterlife and what comes next with kids, if you know the family’s belief or faith you can work with, not against, what the child has already internalized as their working model for their assumptive world. It’s not our place to undermine the child’s trust in their parents or guardians, or to question what the family has taught the child.

So, what might this look like in a clinical setting?

Step 1: Be honest about what you don’t know first-hand. Unless you are Frankenstein’s monster, it’s safe to assume you haven’t been dead yourself or returned from the grave. It’s okay to tell a child that you don’t know. In terms of sharing what you believe, there may be limitations on what you may or may not share based on professional ethical or legal guidelines, in addition to the need to respect the legal and moral rights of the parents.

Step 2: Ask. This is a good opportunity to ask the child what they believe. A child doesn’t need us to have all the answers. Children need a secure attachment base, and to know they can trust the adults in their world. Regardless of the child’s faith of origin (meaning their caregiver’s or cultural belief system that they are still internalizing), they need consistency in messaging, and their caregivers serve as a primary attachment figure. This can be challenging when the child or family has a different belief system than your own. This is where spiritual cultural humility is imperative; never undermine faith just because you don’t share it (e.g., thanatologists dealing with difference). By finding out what the client feels is salient, we can help them process their emotions around it.

Step 3: Help the child learn to label their emotions. Research has demonstrated that when parents have a more extensive vocabulary for emotion-related words, their children are more advanced in both their social and emotional development. Lev Vygotsky, an early developmentalist, was particularly interested in how we can structure learning in children; he posited that a child’s ability to learn and reach their potential is not limited as much by their own abilities, as it is by the ability of the “teacher” or more expert peer to “scaffold” learning. When children can have their emotion-related expressive language scaffolded (meaning built up or supported by a more experienced person), they show better emotional self-regulation. One final tip: children process through play, so don’t be surprised if they engage in imaginary playacting or games to practice what they are learning and to develop self-regulation. It’s perfectly normal if one moment they are crying or distressed and then minutes later they are laughing and silly. Children may also practice social scripts around loss through make-believe interactions with imaginary friends — this is healthy and adaptive as they are learning to adapt to their new world.

Talking with children about death is one of the most challenging things grown-ups must do. I know many parents who would much rather discuss sex than death and dying. Oftentimes, it may fall on healthcare professionals to provide support. Similar to discussing dying with a child, when discussing what comes after death it’s important to keep in mind the child’s cognitive ability, offer honesty titrated in language they can understand, and remember that grief may manifest itself in different ways such as upset tummies, headaches, irritability, and changes in eating and sleeping patterns.

Moral of the story? The best thing we can do to help children deal with death is to lean into those difficult discussions, work within their existing understanding, and allow them to process at their own pace.

Complete Article HERE!

What to do when someone receives a terminal diagnosis

This step-by-step guide has advice for what you can do when you or someone close to you has been given a terminal diagnosis, and the ways you can access hospice care.

How you might feel

Hearing that an illness cannot be cured can be a shock, and it can be frightening.

It is common to feel lots of different emotions, including numbness, shock, anger, sadness and even denial.

Whether you have a terminal diagnosis or are caring for the person who has, you don’t have to go through this alone as there are people and services available to support you.

What to do next

After receiving a terminal diagnosis, there are two important things you should do next:

  • Make an appointment with your GP to find out what support is available. If you are the person with the diagnosis, consider whether you want to take a family member or close friend with you, or would rather go alone. You might be feeling lots of emotions which can make it hard to take information in.
  • Make contact with your local hospice to find out what support they can offer. Their staff are specialists in end of life care and will help you understand what you are facing, and suggest appropriate care. Hospice care is free for patients, their carers and family members.

If someone living at home receives a terminal diagnosis 

If you think hospice care could be helpful for yourself or the person you are caring for at home, contact a GP or district nurse to discuss your situation and ask if they can refer you to the local hospice.

Some hospices can take self-referrals, so it might be worth contacting them directly to ask about this.

Once you’ve spoken to a doctor or the hospice, the following things will usually happen:
The doctor will arrange a health needs assessment to make sure the right access to care, support and equipment is provided.

Equipment to make things more comfortable and safe might be necessary. There are supplies of equipment such as adjustable beds, commodes or incontinence aids that can be made available – ask the GP or nurses about this.

Talk to an occupational therapist about what equipment you might need. A physiotherapist or occupational therapist can also help with things like breathing difficulties.

If someone in hospital receives a terminal diagnosis

Many hospitals have access to a palliative care team who can provide advice and support.

  • Ask your nurse or doctor if you can be referred to the hospital’s palliative care team
  • The palliative care team can help with a referral to the local hospice so that you can get support from the hospice when you leave the hospital.

What do I do now?

Hearing the news that someone you love, or a friend of yours, has been diagnosed with a life-limiting condition will be a real shock.

This video is intended to help you support them, and find out more about what will happen next. It’s important to know that you will not be alone. There is help out there not just to support and care for your loved one, but for you as well.

Complete Article HERE!

4 Simple Ways Parents Can Survive The Death Of A Child

By John Cappello

There are many forms of grief that you will face in your life. Some are more difficult to fathom than others. The tough ones like a failed relationship or the loss of a job are rough enough, but there is one loss that is considered the most challenging of all.

The loss of a child.

The loss of a child is not an experience that you expect to endure because it is such an unnatural occurrence. A child is part of your legacy and, to many, becoming a parent is the highest form of achievement that you can accomplish in your life. When a child is lost it affects your very core.

The sense of damage is often unbearable.

To Move Forward, Find A Way To Cope

It does not matter how the child was lost. The hurt of the loss never really goes away. There can be a sense of failure that surrounds this kind of loss and healing from it may simply be impossible.

The solution to moving on from this tragedy is to learn how to cope with it.

1. Face the shock of premature death

Premature death is shocking and keeping it together is not easy. The mental, physical and spiritual pain from the loss of your offspring can create a cycle of other events that can stifle the strongest individuals.

It can create chaos in other areas of your life that had been relatively stable.

A spiral of other unpleasantries can occur if you are not careful. There are no set answers for coping with this problem, but an individual strategy can be created to help.

Since there is no formula for handling this kind of tragedy, you must employ whatever positive behavior you can produce to soothe your pain.

2. Practice the virtue of commitment

The topic of the loss of a child is not easy to discuss but it is necessary because it is a form of grief that is life-altering. Friends or close colleagues are often told to “mind their own business” but this kind of behavior is not helpful to you or them because they are suffering from the same loss.

The others who are hurting may not suffer the same degree of pain, but they are attempting to process the loss as well.

It may sound trite to speak of virtues at this time, but this is a moment when they can matter the most. The virtue of commitment is one of the first that is exhibited by many parents who have lost a child.

This virtue is very important because re-committing yourself to your spouse, significant other, closest family, and friends is essential in the healing process.

You can nurture each other through your pain.

The touch of another loved one — hugging you or holding your hand — is a life link to coping. Re-committing to your spouse or significant other validates the bond that each of you has and the one that was there when you created or adopted your child. Devotion, cuddling, and intimacy allow you some respite and are unique moments that only the two of you can share.

It is your partner who understands your feelings the most and this is not the time to push them away. Your other friends and family are there for you and you are there for them. Ironically, the bond you have with those closest to you becomes stronger during this difficult situation.

This kind of tragedy can bring out problems in a relationship and force those issues to the forefront. 

Many couples separate after a child is lost because other problems that were not pressing are now front and center. It is another heartbreak that results from losing a child, but it may be necessary for an individual to cope if the relationship is not strong enough to survive.

Seeking and giving acknowledgment to others after losing a child is monumental in carrying on. If you do not have anyone to who you can turn at this moment, then seeking help from a therapist or an outreach program is a necessity for your well-being. Emotional support is critical because it is needed at this time.

Some isolation and privacy are expected after your loss but there is a point when isolation becomes negative and accepting the love, support, and nurturing others have for you is a good thing. It will make you feel wanted and that your loss is not discounted in any way. A balance between isolation and socializing with loved ones can prevent negativity.

3. Seek perspective

The act of taking care of yourself is paramount with any form of grief but this type of grief is most likely shared by others. You are the most important person who needs the love and nurturing of others at this time, but it is you who must learn to persevere. You may not be used to accepting help, but it may be one of the things that assist you in your self-care.

It is your act of self-love and other virtues that will help you cope. You may never be able to overcome all your grief from your loss but learning to function positively is a necessity. Being magnanimous in this loss and gaining perspective will hopefully come to you at some point. These attributes are essential in keeping a positive outlook on your future.

A sense of guilt and feeling that you did something wrong may surround your loss. Parents who suffer this loss often feel they did not protect their child enough, but this is just a sign of a good parent grieving. Forgiving yourself if you have a sense of failure is a necessity for your ability to cope with this loss.

Your child lives on in the Spirit World and your relationship with them continues in spirit. It is not the situation that is the most desirable, but it is your belief in it that can bring you some peace of mind. A spiritual perspective is necessary during extreme situations because it is a higher power that will give you the fortitude that you need.

Prayer, meditation, and memorializing your child can bring a sense of peace. The ability to find or develop positive skills to manage is essential for coping. Expressing your emotions is healthy but negative actions or approaches will simply create adversity and more difficulties that can damage your life.

4. Know that life is worth living

A loss of a child is devastating but it does not mean that life is not worth living or that you cannot move ahead in the future. It is an unfortunate part of your journey that you cannot ignore. You did not deserve this tragedy, but it occurred, and it has altered your life forever.

Coping with grief is not easy and this type of grief is the most difficult. Re-committing to those who love you and the ones you love is helpful. Seeking professional help and/or support groups is advisable, but it is only you who can determine your path forward. Navigating this uncharted path is an individual one but trying to have a positive perspective is necessary for you to survive.

Your spiritual life is an important ingredient for coping and should be relied upon for perspective.  Memorializing and recalling the joy of having made a child in your life is a good thing. You may never fully recover from your loss but at least you may learn to cope with the tragedy and try to grow from it.

Complete Article HERE!

9 tips to talk to kids about death under any circumstances from natural causes to mass shootings

Children process death in different ways and it’s important to respect their grieving process and let them know you’re there for support.

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  • When discussing death with kids, experts advise honesty and plain language rather than euphemisms.
  • Aim to tailor the conversation to their age and stick to the facts, avoiding overwhelming details.
  • Kids often need more time to process what happened, so prepare for more conversations later on.

You’ll likely have to tackle the topic of death with your kids at some point, whether that conversation is spurred on by a death in the family, a school shooting in the news, or simple curiosity.

It’s natural to feel a little uneasy approaching this conversation due to your own discomfort and fear around death, or because you’re afraid of upsetting your child, says Reena B. Patel, a licensed educational psychologist and board-certified behavior analyst. Even so, talking to your child about death can help them understand this difficult topic more easily.

What’s more, in the case of publicized tragic events like school shootings, it’s especially important to take the lead in discussing what happened with your child rather than let them find out from the media, says Bethany Cook, a licensed psychologist in private practice.

The news is written and reported in an effort to captivate the viewer, Cook says. In other words, it’s not crafted to your child’s age or level of understanding, and it won’t be able to answer any follow-up questions they have or provide emotional support, she says.

When deciding how to approach the subject of death with a child, Parenting Nerd co-founder Elizabeth Hicks recommends taking their age and emotional maturity into account. If you’re bringing it up because someone your child knows recently died, you should also factor in their relationship with the deceased.

These expert-approved tips can help you talk to your kids about death in a gentle and supportive way.

1. Choose a time and place carefully

Ideally, you want to approach the topic of death in a private and quiet setting, when you and your child have nowhere to be and don’t feel rushed in the conversation.

If your child has a favorite stuffed animal, blanket, or toy they like to carry around or sleep with, you might give it to them to hold for comfort before starting the conversation.

It’s OK to share a loved one’s death with more than one child at the same time if there isn’t a big age difference between them. However, if they aren’t close in age, you may want to have separate conversations so you can tailor your language accordingly.

When sharing the news of a tragic event, such as a school shooting, Cook recommends choosing a private, comfortable space with minimal distractions and presenting the information in chunks.

“The first piece should be geared toward the younger family members,” she says. “Keep it simple, clear, and concise.”

You might start by saying something along the lines of, “Did you hear about something that happened at a school in [XYZ state] today?” If they did, you can ask:

  • “What did you hear?”
  • “How do you feel about it?” “Do you have any questions?”

If they aren’t yet aware, Cook recommends saying something along the lines of, “Someone went into a school with a gun and killed some people.”

Then, give them a chance to ask questions and share their feelings. After you validate those feelings, Cook recommends setting younger children up with an activity, like a movie or engaging toy, in another room so you can continue the conversation with older children.

Adolescents and teens may have more intense emotional reactions to this news, so be prepared to validate their feelings while reassuring them as best as you can that the school staff is trained to keep them safe.

2. Be honest and concrete

While you might feel tempted to withhold news of a death in an attempt to protect your child, Patel says it’s important to be direct and transparent.

Children often know when you aren’t telling the complete truth. Even if you have good intentions, that dishonesty could erode their trust in you.

You don’t need to share all the details of a person’s death with a younger child, who may not even be able to grasp them. When it comes to older children, though, don’t intentionally leave out key facts — even if the facts are potentially upsetting.

Say a relative died of an accidental drug overdose but the official cause of death was heart failure . Hannah Ly, a child therapist in private practice, advises against saying “They had a heart attack” without mentioning the drug use.

“Leaving out facts could lead to emotional distress when they find out the truth as an adult,” she says.

3. Start small and let them take the lead

In order to avoid overwhelming your child with too much information up front, Patel recommends sharing in doses. Start with simple facts about who died and what death means. Then, allow them to take control of the conversation by giving them an opportunity to ask questions.

For instance, if you tell your child a loved one died due to an illness, like cancer, they might ask why a doctor couldn’t make it better. You can respond matter-of-factly by saying “Doctors can’t always fix everything.” Or, if they don’t ask any questions, that’s OK, too.

Remember, they may need to digest the concept of death in bits and pieces, so just know they might come back to you with more questions on another day. Even if they don’t, you might always follow up yourself in a day or two, after they’ve had some time to process the news.

4. Avoid certain euphemisms

You may feel uncomfortable using the words “death” or “dead,” but Patel advises against using euphemisms to soften the blow. This kind of language can cause misunderstandings and confusion and ultimately do more harm.

For example, if you say the person “went on a long journey,” your child may then be retraumatized when they realize the person will never actually come back. Or, if you say they “went to sleep,” Ly says your child may develop anxiety at bedtime and become afraid they might die in their sleep.

Ly advises focusing on the basic facts of what happened. Say a loved one died naturally due to age. You might explain to a younger child that after many years of life, your body gets so tired that eventually your heart stops beating, your brain stops thinking, and you stop breathing.

5. Allow space for every emotion

Keep in mind that children can experience grief in widely varying ways, just like adults. They may:

  • Express anger, sadness, or confusion
  • Cling closer to you or isolate themselves
  • Need to talk about it a lot to process it, or become quieter and more withdrawn
  • Seem unaffected by the loss

According to Patel, there is no right or wrong way for them to grieve. Ideally, you want your child to understand no emotion is off-limits so they feel safe and supported in expressing themselves however they need to.

Explain that they can come and talk to you any time. When they do share with you, make sure to validate their feelings by saying things like:

  • “It sounds like you’re really upset, and that’s totally normal.”
  • “Of course you’re sad — lots of people feel that way when they have to say goodbye to someone.”

“Let them know it’s OK to cry, and it’s also OK if they need alone time,” Patel says.

If their grief is affecting other areas of their life, such as their performance at school, Ly advises seeking guidance from a mental health professional.

You might start by mentioning the changes you’ve noticed in a curious and non-judgmental way, and asking your child why they think they might be struggling. You can also talk to their teachers to get their perspectives and observations, Cook says.

6. Feel free to express your own grief

You may worry that expressing your own emotions around death will make things worse for your child — but in reality, experts say it’s much better to show your grief than stifle your emotions in an effort to protect them.

You can normalize grief and mourning for your child by openly expressing your emotions, Patel says. It also helps to model healthy coping skills, like journaling, connecting with loved ones, and practicing good self-care.

Children tend to model the behavior they pick up on from the adults in their lives. If they notice you’re comfortable discussing death, and your feelings around it, they’re more likely to do the same.

Conversely, avoiding discussing the death or your feelings about it can send a message that talking about death is somehow bad or harmful. They might then avoid the topic, too — which Ly says may prevent them from fully processing their emotions not only in response to that particular death but others down the road.

7. Keep their age in mind

While it’s important to speak honestly with your child about death, it can be challenging to do so while steering clear of unnecessary details that may traumatize them.

Experts recommend considering your child’s age to find a balance. Here’s how each age group typically perceives and understands death:

Preschool (ages 3-5)

At this age, children may still think of death as temporary or reversible. They may have trouble understanding that when someone dies, they don’t come back. A 2018 study found that media representations of death can often contribute to these unrealistic ideas about death. For instance, an analysis found that 31.6% of the deaths in 57 Disney and Pixar films were portrayed as reversible.

According to Cook, it’s OK if your child isn’t able to grasp the finality of death just yet. You can continue to reinforce the fact that it’s permanent through examples — like how once a tree dies, it doesn’t grow back.

Elementary school (ages 5-9)

At this stage, your child may be coming to grips with the idea that everything and everyone dies eventually, and that death is permanent. They may start expressing concern about their parents or friends dying and begin asking a lot more questions about death in general.

“Magical thinking” at this age can cause them to question whether something they said or did caused the person’s death, or whether they can say or do anything to bring them back.

You can reassure them the person’s death was not their fault without dismissing their feelings.

Middle childhood (ages 9-12)

Once they reach this age range, kids often start to acknowledge that death applies to them, too, so they may have more philosophical questions about life and death. They might be more inclined to dig into “why” death happens, especially when it comes to tragic events like murder and suicide.

Certain events can threaten their sense of safety in the world, which makes it important to reassure them you’ll always do your best to keep them safe. It can also help to offer them plenty of choices in everyday life so they can maintain a sense of control in an unpredictable world. For example, you might:

  • Give them three options for how they’d like to spend their Saturday afternoon.
  • Let them pick between a few different outfits for school.
  • Encourage them to select which book they’d like to read at bedtime.

You can also offer multiple options for how to commemorate the deceased person so they can say goodbye in the way they’d like to.

Teens (ages 13-18)

At this point, your child likely has a strong understanding of what death means, so you can focus your conversations around empathizing with and validating their feelings — which may range from sadness or fear to anger and numbness.

Cook advises continually checking in with them to remind them that you’re there to listen, without pressuring them to talk if they don’t want to.

“Follow their lead,” Ly says. “Normalizing the grieving process and giving them space is important.”

If your teen is unwilling to share their feelings with you, but you sense they may need some emotional support, Ly suggests offering to help them connect with a counselor.

8. Shape the conversation according to how the person died

How a person died will play a part in:

  • What you tell your child
  • How much you should share
  • The way you choose to discuss the topic

A sudden death

For example, if a person died suddenly due to a heart attack or car accident, Patel says your child may be in shock and have a lot of questions since they didn’t have the chance to say goodbye.

A natural death

A death due to age can lead to a larger discussion about the circle of life, Patel says. She says you can feel free to use metaphors in nature to help young children understand death — like pointing out how a flower starts as a seed, gets bigger and bigger until it stops growing, starts wilting, and eventually stops living.

Once your child begins to recognize that all plants and animals die, too, they may have an easier time transferring this understanding to people.

A death due to illness

On the other hand, if the person died due to an illness, whether Alzheimer’s or COVID-19, you might explain they had a disease that makes your body stop working as it should. Ly says you can use similar wording to simplify death related to mental health conditions, too.

A death due to suicide

When telling a child about a death by suicide, it helps to answer questions honestly but focus more on your child’s feelings, rather than the details.

It’s essential to:

  • Offer reassurance that nothing your child did or said caused the loved one’s death
  • Stick to the facts
  • Encourage questions
  • Prepare to have multiple conversations about suicide — not just in the days after you share the news, but in the weeks and months to come

If a relative who had depression died by suicide, you might tell a young child, “Their depression made them so sad they didn’t want to feel anything anymore, and so they decided to stop their body from working.”

You could also emphasize to older children that depression is a mental health condition, not a choice or personal failing.

For more guidance on talking about suicide with children and teens, visit the American Foundation for Suicide Prevention.

A violent death

If you find yourself needing to explain a murder, school shooting, or other violent death, keep it simple and only use language they’d understand. For instance, if they ask why the shooting happened, you might say, “People who are hurt and angry sometimes hurt other people.”

9. Other helpful strategies

Death can bring up a lot of feelings like fear, uncertainty, and vulnerability for your child. Some strategies experts recommend for comforting them include:

Make a memory box

Patel advises helping your child to put together a bereavement box filled with special tokens that remind them of the person who died.

This activity can promote positive memories about the person and help them process their grief at the same time. On days when they’re thinking about the deceased person, they can pull out their memory box to help them cope.

Items to add might include:

  • Photographs
  • Cards written by that person
  • A sample of their cologne or perfume
  • Personal items of theirs like jewelry or a passport
  • Keepsakes like tickets from travel or events your child attended with the person

Write a goodbye letter

If your child feels sad they never got to say goodbye, Hicks says you can encourage them to write a letter to the deceased. You can tell your child the letter offers the space to say anything they wish they got to say. If they’re not sure how to begin, ask them how that person made them feel, or what they loved most about them.

Another option, according to Hicks, is to give your child a journal and let them know it’s their safe, private space to share whatever they’re feeling.

Keep up routines

Since the unpredictability of death can disrupt a child’s sense of security, it’s a good idea to maintain as much structure and consistency in their life as possible.

Try to keep up with routines when it comes to schoolwork, meal times, play, and other activities.

Lean on other resources when needed

You can find many books about death specifically geared toward children in your bookstore or local library. Some of these may help fill in the gaps you find most challenging to explain.

Ly recommends reading “The Invisible String” and “When Dinosaurs Die” to check whether either option might help you explain loss to your child.

The National Association for the Education of Young Children has also compiled a list of additional books and other helpful resources. Find that here.

Consider professional support

In some cases, your child may benefit from talking with a therapist about their grief.

A small 2013 study examined children and adolescents with prolonged grief disorder, a condition marked by feelings of intense longing and intrusive thoughts about a deceased loved one six months or more after their death.

Researchers found that children who received nine sessions of cognitive-behavioral therapy, a common form of talk therapy, experienced a reduction in symptoms of grief, depression, and post-traumatic stress disorder.

Patel, Ly, and Hicks say a child may be finding it difficult to cope if they have:

  • Trouble falling or staying asleep
  • Increased nightmares
  • Changes in appetite
  • Less interest in their favorite activities, including socializing with friends
  • Persistent worrying about death, especially pertaining to parents and caregivers
  • Frequent angry outbursts or temper tantrums

If you notice these behaviors — or any others that seem to affect your child’s health and well-being — your child may need additional support to begin healing.

A good next step involves connecting with your child’s teacher or guidance counselor for more support. You can also reach out to a therapist or counselor or ask your child’s pediatrician if they can recommend one.

Insider’s takeaway

As a general rule, death is best explained to children in a simple and straightforward way, without misleading euphemisms. Always offer the opportunity for your child to ask questions, and make it a point to validate any feelings they share.

You don’t need to hide your own grief — in fact, expressing it openly tells your child two important things: Their feelings are natural, and it’s OK to express those emotions openly.

Just know talking to your child about death won’t be a one-and-done conversation. You can share information in smaller doses to avoid overwhelming them, but you’ll also want to let them know your door is always open, so to speak, so they can come to you with any questions or fears.

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