Dying In A Hospital Means More Procedures, Tests And Costs

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When it comes to the end of life, hospital stays are more intensive and more expensive than alternatives.
When it comes to the end of life, hospital stays are more intensive and more expensive than alternatives.

People who die in the hospital undergo more intense tests and procedures than those who die anywhere else.

An analysis by Arcadia Healthcare Solutions also shows that spending on people who die in a hospital is about seven times that on people who die at home.

The work confirms with hard data what most doctors and policymakers already know: Hospital deaths are more expensive and intrusive than deaths at home, in hospice care, or even in nursing homes.

“This intensity of services in the hospital shows a lot of suffering that is not probably in the end going to offer people more quality of life and may not offer them more quantity of life either,” says Dr. Richard Parker, chief medical officer at Arcadia.

Arcadia analyzed all the Medicaid claims data for a private Medicaid insurance company in one Western state and detailed how many billable medical procedures each patient received and where. Patients in hospitals were billed for far more medical interventions in the last days of their lives than people who died in other settings. The company declined to name the state or company.001

The study showed that 42 percent of patients died at home at a cost of about $4,760 for their last month of life, while 40 percent died in a hospital at a cost of $32,379. Dying in a nursing home was the second most expensive locale, inpatient hospice was third and an emergency room was fourth.

“In the end, everyone died. They all died,” Parker tells Shots. “If we look at this retroactively, retrospectively — and we could go back and ask people — I bet most of them would say I’d rather be home with my family.”

Parker says the cost of hospital deaths paid for by Medicare or private insurance are likely even higher because they pay doctors and hospitals more for their services.

Many studies have shown that people, when asked, say they’d prefer to die at home rather than in a hospital. However, those wishes aren’t always realized if a person hasn’t given clear instructions to a doctor or family member.

Parker says hospitals are designed to cure people who are ill rather than to allow people to die peacefully.

“The culture of American medicine today and for the last several decades is to keep treating patients regardless of the quality of life,” he says. “A lot of physicians have been reluctant to admit that the patient’s life is coming to an end.”

The picture is more complicated than the data show, says Dr. Lachlan Forrow, a professor of medicine and medical ethics at Harvard University.

Many patients move from home to hospice to hospitals and back during the last 30 days of life. And some may end up in the hospital because their pain or symptoms weren’t adequately controlled at home.

Still, he says, hospitals are just not good at caring for dying people.

“We do lots of very expensive things in hospitals to people in the last part of life who would rather be home, and we do those in part because in the hospital they get paid for,” he says.

It’s the only way to justify keeping in a hospital the people who need around the clock nursing care but can’t get it at home.

“If we really tried to make sure people at home could have what they needed at home, we could take better care of them, with less medical system-caused suffering, at lower cost, sometimes much lower cost,” he says.

Complete Article HERE!

‘I don’t like dying’: 5-year-old who chose to forgo treatment, sparking debate, has died

By Travis M. Andrews

Michelle Moon and her daughter Julianna Snow.
Michelle Moon and her daughter Julianna Snow.

Most 4-year-olds cannot grasp the concept of death. Most don’t have to, but Julianna Snow was forced to consider and reckon with her own mortality at that young age.

Julianna, of Washougal, Wash., was diagnosed with Charcot-Marie-Tooth Disease, which is one of the world’s most common inherited neurological disorders, according to the National Institutes of Health. It’s a progressive disease that damages the nerves affecting certain muscles. In most cases, it’s relegated to the arm and leg muscles, sometimes so mildly doctors don’t even find it upon examination. But there are many mutations of CMT, and symptoms range in severity.

Julianna’s case was one of the most severe.

The disease affected the muscles she needed for chewing and swallowing, then those needed for breathing. Her lungs would fill with mucus and cause pneumonia. When this happened, doctors would need to perform nasotracheal suctioning, an exceedingly painful procedure in which a tube is threaded through the nose and down the throat, past the gag reflex and into the lungs in order to remove dangerous mucus build-up.

Julianna despised it.

Most children scream and need to be restrained during the procedure, but Julianna was eventually too weak to do anything but cry, her nurse Diana Scolaro — who often performed the procedure — told CNN. And while most children can be sedated for the process, Julianna was too weak.

She remained conscious for each one, feeling every second of pain.

After each session, Scolaro would tell Julianna, “Rest now, baby. Maybe you can make it two hours before we have to do it again.”

Scolaro told CNN, “It’s not for the faint of heart to take what she took.”

Juliana’s condition continued to worsen. She eventually required a pressurized mask to pump oxygen into her lungs, which were too weak to do it themselves. She was fed through a tube inserted into her stomach. Her tiny body had grown too frail to fight off another bout of pneumonia, or even the common cold.

In October 2014, Dr. Sarah Green sat down with Julianna’s parents, neurologist Michelle Moon and former Air Force pilot Steve Snow, to have a difficult conversation. The next time Julianna got sick, she would likely die. If doctors managed to save her, her quality of life would almost certainly be poor.

It was a decision Moon and Snow could have made on their own, and they had — they were going to bring Julianna to the hospital if she got sick again.

But then they decided to ask Julianna.

Juilanna Snow.
Juilanna Snow.

As Moon explained on Anderson Cooper’s “AC360, “Julianna had to go through hundreds of rounds of nasotracheal suctioning. She knows exactly what that was. She was awake for every single one. I think she has a right. I think she has a say.”

So Moon sat her 4-year-old daughter down to have a series of the most heart-wrenching conversations a parent could imagine.

“Julianna, if you get sick again, do you want to go to the hospital again or stay home?” she asked her daughter in a conversation she blogged about on her personal blog and for the Mighty.

“Not the hospital,” the girl said.

In another conversation, Julianna asked whether her mother wanted her to get treatment. Moon asked what Julianna wanted.

“I hate NT. I hate the hospital,” she said.

“Right. So if you get sick again, you want to stay home,” her mom said. “But you know that probably means you will go to heaven, right?”

“Yes.”

“And it probably means that you will go to heaven by yourself, and Mommy will join you later.”

“But I won’t be alone,” Julianna replied.

“That’s right. You will not be alone.”

“Do some people go to heaven soon?” the 4-year-old asked.

“Yes. We just don’t know when we go to heaven,” her mom said. “Sometimes babies go to heaven. Sometimes really old people go to heaven.”

“Will Alex go to heaven with me?” Julianna asked, referring to her 6-year-old brother.

“Probably not. Sometimes people go to heaven together at the same time, but most of the time, they go alone,” Moon told her. “Does that scare you?”

“No, heaven is good,” her daughter said. “But I don’t like dying.”

The two had many more conversations in this vein, Moon trying to ensure that, as much as possible, Julianna understood what dying means. Not only can most 4-year-olds not grasp the concept of death, most people can’t.

Still, a decision had to be made, and Julianna helped make one.

“I want to make it clear these are not Julianna’s decisions or choices,” Moon toldPeople. “They are Steve’s and my decisions, but we look to Julianna to guide us.”

Her parents respected her wishes.

“She made it clear that she doesn’t want to go through the hospital again,” Michelle told CNN. “So we had to let go of that plan because it was selfish.”

On Tuesday, Julianna died at 5 years old.

“Our sweet Julianna went to heaven today,” Moon wrote on the blog dedicated to her daughter. “I am stunned and heartbroken, but also thankful. I feel like the luckiest mom in the world, for God somehow entrusted me with this glorious child, and we got almost six years together.”

Since Moon first posted on the Mighty, a blog about people with disabilities, and began her own blog, Julianna’s story has received national attention. CNN wrote a two-part series on the family, which was also featured on “AC360.” People magazine profiled the family. Even the Korean Broadcasting System traveled to Washington state to film Julianna for a Christmas Day documentary (below, but not in English).

As her story grew, so too did backlash in response to their decision.

“Your daughter sounds super smart but, please, don’t let her be anything like the decision-maker on this. I’m so grateful my parents heard my articulate little 4 year-old thoughts, factored them in, and didn’t confuse my strong verbal skills with an older emotional age,” wrote one commenter on the Mighty.

“The fact that she used leading questions does not sit well with me. As an attorney, I cannot even use those types of questions when cross examining. So, to present the questions in such a format induces the child in subtle prompts to answer in a particular way … furthermore, a four year old lacks the full capacity to decide their own” mortality, wrote another.

“I am so sorry for the lack of support you and your husband get from people who do not know you or young Julianna,” one wrote in response.

Even bioethicists weighed in.

New York University bioethics professor Arthur Caplan told CNN, “This doesn’t sit well with me. It makes me nervous. I think a 4-year-old might be capable of deciding what music to hear or what picture book they might want to read. But I think there’s zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn’t really develop until around age 9 or 10.”

Others disagree.

“To say her experience is irrelevant doesn’t make any sense,” Chris Feudtner, director of the Department of Medical Ethics at the Children’s Hospital of Philadelphia said in response. “She knows more than anyone what it’s like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna.”

Karla Langlois, a hospice nurse who worked with Julianna, agreed.

“I think she’s very capable of having input into the end of her life,” Langlois toldPeople. “I don’t know that it’s appropriate for every child but in this scenario it’s very appropriate.”

She lived, she was real, and she mattered.”

Read Moon’s full blog post about Julianna’s passing here.

Dear friends,

Our sweet Julianna went to heaven today. I am stunned and heartbroken, but also thankful. I feel like the luckiest mom in the world, for God somehow entrusted me with this glorious child, and we got almost six years together. I wanted more time, of course, and that’s where the sadness comes in. But she is free now.

I will have more to say later. For now, this is what is in my heart.

Today, I just want the world to know that there was a girl named Julianna.

She was a bright light. An old and delightful soul.

She loved love, and “everyone except for bad guys.”

She was an unabashed princess and she elevated everyone around her. We were all kings, queens, princes and princesses by association.

She urged us to play, to really focus on just playing. She encouraged us to be our most colorful and fabulous self. (One of her last words to me: “What’s that?” to my gray sweater…)

Her mind was “always going.” It took us to a beautiful world without limits.

Her words were startling. Sometimes I thought that people wouldn’t believe the conversations I recorded. How could a five year old know those things? But if you spent any time with her, you knew.

She fought hard to be here, harder than I’ve seen anyone fight, with a body that was too frail for this world. She was so brave — and I hated that she had to be so brave. This last fight was not to be won by her body. It was tired, and it needed to rest. And when it did, she was comfortable.

Today, she is free. Our sweet Julianna is finally free.

Please do not forget her. She lived, she was real, and she mattered.

I cannot believe that she’s gone. Already, I worry that some of her has faded, and I need to remember all of her. The way her warm little hands felt, the hugs she would give by asking you to drape her arm around your neck. The kisses she blew. They never ran out.

Please remember our precious girl: she was Julianna.

Complete Article HERE!

How to talk to a queer person who is afraid of dying

Josh Mercer wears a T-shirt in honor of two of his friends who were killed at the Pulse nightclub in Orlando.
Josh Mercer wears a T-shirt in honor of two of his friends who were killed at the Pulse nightclub in Orlando.

I spent most of Sunday thinking about what I would text my mom if I was hiding in a nightclub bathroom and believed a gunman was about to kill me. I pictured the bathrooms of my favorite clubs. I imagined where I would hide. I imagined how I would try to barricade the door. I pictured what my body would look like on the floor.

I wish I could say I left my apartment that day and fearlessly celebrated Pride month. I wish I could say I attended a rally or a vigil, or even just got drunk at a bar with my queer brothers and sisters. I wish I could say I became a living testament to LGBT courage in the face of violence and hatred.

But I didn’t. I lay on my couch and imagined being shot and killed in a bathroom.

I understand why so many people have chosen to respond to the massacre in Orlando with proud public displays of solidarity with and support for the LGBT community. The history of LGBT people in the United States is a story of resilience, even in the face of incredible pain and loss. We respond to a world that asks us to disappear by chanting, “We’re here! We’re queer! Get used to it!” We celebrate Pride partly as an act of defiance and perseverance.

After the shooting in Orlando, it’s tempting to push ahead to the part where the LGBT community pulls itself up by its bootstraps and recommits to fighting bigotry and making the world a more welcoming place. I am tempted by that, too.

At the same time, LGBT people aren’t superheroes. What happened in Orlando opened wounds in people thousands of miles away from the gunman. LGBT people are grappling with the fact that there is no such thing as a “safe space,” that we created the idea of a “safe space” to stay sane, but it is an illusion.

It’s hard to overstate the mental and emotional damage that realization has on queer people. For me, it has been a profoundly isolating experience. Fear makes you want to retreat from the world, makes you want to stop talking and pull away from anything that might put you at risk.

I walked to work Monday morning, searching for copycat executioners in the eyes of strangers on the street. I packed gym clothes and caught myself wondering if my tank top was too flamboyant. I watched straight people discussing queer bodies on television and wondered how they could talk about Orlando if they didn’t understand what it’s like to walk into a gay club and think, “Finally, I’m safe — this is home.”

I don’t know what to do with any of that. Even now, I’m writing because I desperately want to feel like I have some control over what happens to me. To do something, however small, to make myself feel like I have a grip on things. It isn’t working.

If you have queer people you care about in your life, talk to them. Always, but especially now. Maybe they seem fine. Maybe they live somewhere that feels very far away, in distance and culture, from Orlando. Maybe it feels like an uncomfortable subject to bring up.

You should still talk to them.

Many LGBT people have spent years keeping problems — especially problems related to being LGBT — to ourselves. We have become masters of seeming fine, of convincing ourselves that we are fine, when we are not fine. Because we badly want to be fine.

There is a good chance your charming, confident, smiling gay friend feels deeply scared and unwelcome in the world.

Ask them how they’re doing. Tell them you love them. Tell them your love doesn’t come with caveats. Tell them it’s okay to cry. Tell them they don’t deserve to be scared. Tell them that it’s okay to be scared anyway. Tell them it’s okay to be afraid of dying. Tell them that they matter to you — and that you want them here, alive, now.

None of that will stop an LGBT person from being afraid of dying. Nor will it stop them from mourning the dead. The only way to deal with pain and trauma is to sit with it until it’s done with you.

Complete Article HERE!

Grieving a Suicide Death

By Eleanor

cemetery angel

 

According to Centers for Disease Control and Prevention in 2013 there were 41,149 suicides in the United States.  This rate is equal to 113 suicides each day or one every 13 minutes.  Surveys have shown that 40% of adults know at least one person who has died by suicide and upwards of 20% of adults report their lives have been significantly impacted by suicide.

I’m sorry we didn’t write this post sooner.

I have a lot I want to cover, so I won’t waste time on introductions.  I do realize, though, that some of you won’t read this post all the way through.  For those of you who know yourselves well enough to know you won’t finish, I want to let you know that I will link to additional resources at the end of this post.  Also, I want to invite anyone who has been touched by suicide to share your experiences in the comments below.  Although we can offer general thoughts on this subject, it is your insight that adds truth and nuance to this discussion and helps those facing similar circumstances feel less alone.

First things first, our usual disclaimer…

Although commonalities exist amongst people who have experienced a certain type of loss, individual grief is unique to the person experiencing it and their relationship with the person who died.  Although we can talk in averages and generalities, no article, grief theory, or set of symptoms will ever perfectly sum up your grief experience. Further, although you might be able to relate to aspects of another person’s grief (and vice versa), no one can completely understand how anyone else feels. With this in mind, we recommend you learn what you can from your commonalities with other grievers, but take differences with a grain of salt.

How we talk about suicide…

Although we may have a long way to go in understanding suicide and effective suicide prevention, thankfully progress has brought us far beyond the dark days when suicide was looked upon as a crime or religious offense.  Progress, though, is multifaceted and while our understanding of suicide has grown more compassionate, our language has not.

For this reason organizations like the World Health Organization, National Institute for Mental Health, American Association for Suicidology, American Foundation for Suicide Prevention and countless others have been working to shift suicide-related terminology.  Although there are many fine points to this conversation, I simply want to impress the following upon you…

When referring an individual’s death from suicide…

Don’t say…She committed suicide.”

Do say… “She killed herself” or “She died by suicide”

I know most of you are used to saying “committed suicide” and you certainly aren’t alone.  Many people in our society have yet to get this memo, but now you have.  Please, the time has come for us to choose language around suicide that does not condemn or stigmatize the person who has died or those who love them.

Suicide as a traumatic loss…

When a loved one kills themselves, the death is often experienced as traumatic.  We typically use Wortman & Latack (2015) definition of traumatic loss…

“A death is considered traumatic if it occurs without warning; if it is untimely; if it involves violence; if there is damage to the loved one’s body; if it was caused by a perpetrator with the intent to harm; if the survivor regards the death as preventable; if the survivor believes that the loved one suffered; or if the survivor regards the death, or manner of death, as unfair and unjust.”

This definition touches on many experiences common to suicide death including the death being sudden, untimely, violent, regarded as preventable, etc. However there are other traumatic loss risk factors associated with suicide such as feelings of blame, witnessing the death, and finding the body.  Deaths that are also potentially traumatic events can result in trauma and grief responses compounding and intertwining.  These may manifest as the following (these are just a few so if you’d like more information on grieving a traumatic loss, head here):

  • Recurrent intrusive thoughts about the death
  • Shattered assumptions about the world, onself, and others
  • Feelings of guilt and blame
  • Fear and avoidance of grief and trauma reactions, etc.

It’s important to note, it is not the nature of a death that makes it traumatic, rather how the event is interpreted and processed by the individual. This means that, regardless of the circumstances around the death, it is not a given that it will be experienced as traumatic. One cannot underestimate the impact of personal factors like emotional regulation, cognitive responses, secondary stressors, coping style, prior history of trauma, and access to support and resources in determining how a person responds to an event.

when people are suicidal

When grieving a suicide death one may experience…

The search for answers:

In the wake of death, people often seek to construct a meaningful narrative that helps them to find peace and understanding in what happened.  So asking questions like “what if?”, “why?”, and “what’s the point?” is a common grief response.

After a suicide death, as with any other type of death, the bereaved seeks to make sense of what happened.  However in this instance they may find that many of their questions are either unanswerable or lead to undesirable conclusions (whether these conclusions are true or not).

Until the question of “why” can be answered, grieving family and friends may continue to search and ruminate.  It is not uncommon for themes of personal blame to arise as a person questions their role in their loved one’s suicide and what they could have done to prevent their death.  Unfortunately, the bereaved may vastly overestimate their own role and the role of others (i.e. what family and friends did or didn’t do), as opposed to blaming things like mental illness which is quite often present.  Whether rational or not, grieving family and friends may struggle with distressing thoughts like…

  • I never really knew him.
  • She didn’t feel comfortable confiding in me.
  • She was in intense pain
  • I’m to blame. I should have done more to prevent his death.
  • I’m to blame. I pushed him into the decision to kill himself.
  • She didn’t love me enough to live.
  • My family members are to blame.

The impact of expectedness…

Although suicide is often sudden, it is not always unexpected and so not all who experience the death of a loved one struggle to answer the question of “why?”.  In many instances there has been discussion of suicidal thoughts or past suicide attempts.  Maple et al (2007) found in interviews with suicidally bereaved parents that “preparedness” was linked with an ability to anticipate and explain their child’s death.  They note,

“Once they had acknowledged the inevitability of suicide they were able to weave this possibility, unwelcome as it was, into their life story to develop a coherent explanation.”

Family conflict:

Family can be an incredible source of comfort and healing after a death.

Family be a source of distressing conflict and misunderstanding after a death.

Which of these statements is true?  Both…sometimes within the same family at the same time!

Regardless of the circumstances surrounding the death, things like complicated family dynamics, shifting roles, and different coping styles can test and challenge a family. After a suicide death additional conflict may emerge because…

  • The deceased’s mental illness and suicidal behavior created disruption and placed strain on the family as a whole.
  • Family members disagree about how they want to acknowledge the death publicly or how they want to discuss the death privately within the family.
  • Different family members come up with different explanations for why their loved one killed him- or herself
  • Blame

Feelings of rejection and abandonment:

Evidence has shown that suicidally bereaved individuals experience higher levels of rejection compared with other bereaved groups.  In grief, feelings of guilt, blame, regret, and rejection defy all logic and reason. Even when it’s evident that the suicide was not an act of intentional abandonment, it may feel that way to the people left behind in death’s wake.

Worries about developing mental illness:

Approximately 90% of those who die by suicide have one or more mental disorders.  When the deceased is connected to the bereaved through genetics, especially in the instance of a child grieving a parent’s suicide death, they may worry that they too will develop mental illness and some day make the choice to kill themselves.

Indeed, some research has indicated that a family history of suicide increases suicide risk.  So if you know a child, or adult for that matter, struggling with these concerns don’t immediately disregard their worries.  If you are someone grappling with this concern, know that it is normal and if you’re really worried then it never hurts to seek out a little support and psycho-education from a therapist or counselor.

Fear of grief reactions:

After a death mourners often feel as though they are going crazy, and, as noted, those who have experienced a traumatic loss often experience intensified and prolonged grief/trauma reactions.  If a person interprets their symptoms as dangerous, threatening, or indicative of a larger mental or physical problem, they are more likely to fear and inhibit their reactions.  Concerns about one’s own reactions following a death add to existing emotion by causing additional anxiety, depression, anger or shame.  Those who are fearful of their reactions may also engage in maladaptive and persistent avoidance of triggers or reminders which can contribute to the development of postraumatic stress disorder and which prevent the mourner from finding meaningful ways to continue their bond with their loved one.

Relief:

It is common for a person to feel relieved after a loved one dies when the loved one had been living in pain and suffering. For those who die from illness, the relief comes from knowing they are no longer in physical pain.  And when a person dies from something like suicide or overdose, the relief may come from a place of knowing that their loved one is no longer struggling with emotional pain.

One may also feel relief if the loved one’s suicidal behavior (or other types of behavior) had previously put a strain on the family.  This doesn’t mean that the person grieving the loss wouldn’t trade their relief to have their loved one back for just one moment, or that they don’t also feel intense pain and sadness.  Relief is simply one response in their big, messy, hurricane of grief.

Feelings of isolation, stigma and/or shame:

Sadly, there is a stigma attached to mental illness and suicide.  Others can’t imagine the mental and emotional pain that would cause a person to kill themselves and so they might make assumptions or judge the deceased’s actions, calling them weak or selfish or who knows what else.

This being the case, it’s no wonder that many people choose not to open up about their loved one’s death.  Stigmatized losses may also be referred to as disenfranchised losses, which you can read more about here.  The following are just a few potential causes for isolation, stigma, and shame following a suicide death:

  • Isolation and shame may result from the family’s decision to keep the suicide a secret.  Feeling unable to acknowledge the truth, those grieving the loss may feel as though they have to lie or live in silence.
  • Shame may result from thoughts of personal blame and responsibility.
  • Shame may result from the belief that one can’t control or manage their own grief reactions.
  • Isolation and shame may result from a lack of social support or because others don’t acknowledge the death.
  • Shame, isolation and stigma may be felt in response to messages from media and broader society about suicide
  • Isolation may result from perceived rejection and thoughts of worthlessness.

Complete Article HERE!

The Journey Towards Death

Recognizing the Dying Process

coping-with-death-process

By Angela Morrow, RN

The dying process usually begins well before death actually occurs.

Death is a personal journey that each individual approaches in their own unique way. Nothing is concrete, nothing is set in stone. There are many paths one can take on this journey but all lead to the same destination.

As one comes close to death, a process begins; a journey from the known life of this world to the unknown of what lies ahead.

As that process begins, a person starts on a mental path of discovery, comprehending that death will indeed occur and believing in their own mortality. The journey ultimately leads to the physical departure from the body.
There are milestones along this journey. Because everyone experiences death in their own unique way, not everyone will stop at each milestone. Some may hit only a few while another may stop at each one, taking their time along the way. Some may take months to reach their destination, others will take only days. We will discuss what has been found through research to be the journey most take, always keeping in mind that the journey is subject to the individual traveler.

The Journey Begins: One to Three Months Prior to Death

As one begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it.

They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact with and care for. They are beginning to contemplate their life and revisit old memories. They may be evaluating how they lived their life and sorting through any regrets.

They may also undertake the five tasks of dying.

The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn’t need the energy from food that it once did. The dying person may be sleeping more now and not engaging in activities they once enjoyed. They no longer need the nourishment from food they once did. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.

One to Two Weeks Prior to Death

Mental Changes

This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.

The dying person may also experience hallucinations, sometimes seeing or speaking to people that aren’t there.

Often times these are people that have already died. Some may see this as the veil being lifted between this life and the next. The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.

Physical Changes

The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:

  • The body temperature lowers by a degree or more.
  • The blood pressure lowers.
  • The pulse becomes irregular and may slow down or speed up.
  • There is increased perspiration.
  • Skin color changes as circulation becomes diminished. This is often more noticeable in the lips and nail beds as they become pale and bluish.
  • Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
  • Speaking decreases and eventually stops altogether.

Journey’s End: A Couple of Days to Hours Prior to Death

The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed and talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person’s final physical expression before moving on.

The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. “Cheyne-Stokes” breathing, rapid breathes followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.

Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dyingduring this time.

Eventually, breathing will cease altogether and the heart stops. Death has occurred.

Complete Article HERE!

Fear of death underlies most of our phobias

By , and 

Some people focus their fear of death on smaller and more manageable threats.
Some people focus their fear of death on smaller and more manageable threats.

Awareness of our mortality is part of being human. As author and existential philosopher Irvin Yalom said, we are “forever shadowed by the knowledge that we will grow, blossom and, inevitably, diminish and die”.

There is growing research exploring the overwhelming anxiety that the inevitability of death, and our uncertainty about when it will occur, has the power to create. A social psychological theory, called terror management theory (TMT), is one way to understand how this anxiety influences our behaviour and sense of self.

Coping mechanisms

According to this theory, we manage our fear of death by creating a sense of permanence and meaning in life. We focus on personal achievements and accomplishments of loved ones; we take endless photos to create enduring memories; and we may attend church and believe in an afterlife.

These behaviours bolster our self-esteem and can help us feel empowered against death. For some, however, periods of stress or threats to their health, or that of loved ones, may result in ineffective and pathological coping mechanisms.

These people might focus their real fear of death on smaller and more manageable threats, such as spiders or germs. Such phobias may appear safer and more controllable than the ultimate fear of death.

We might take endless photographs to create a sense of permanence.
We might take endless photographs to create a sense of permanence.

This makes sense because when we look closely at the symptoms of several anxiety-related disorders, death themes feature prominently.

When children experience separation anxiety disorder, it is often connected to excessive fear of losing major attachment figures – such as parents or other family members – to harm or tragedy from car accidents, disasters or significant illness.

Compulsive checkers repeatedly check power points, stoves and locks in an attempt to prevent harm or death. Compulsive hand washers often fear contracting chronic and life-threatening diseases.

People with panic disorder frequently visit the doctor because they’re afraid of dying from a heart attack. Meanwhile, those with somatic symptom disorders, including those formerly identified as hypochondriacs, frequently request medical tests and body scans to identify serious illness.

Finally, specific phobias are characterised by excessive fears of heights, spiders, snakes and blood – all of which are associated with death. Phobic responses to seeing a spider, for instance, typically involve jumping, screaming and shaking. Some researchers argue these extreme responses could actually represent rational reactions to more significant threats, such as seeing a person with a weapon.

Priming death

More evidence for the TMT hypothesis comes from studies showing that death anxiety is capable of increasing anxious and phobic responding.

Compulsive hand washers
Compulsive hand washers

These studies use a popular “mortality salience induction” technique to prime death anxiety in people with other anxiety disorders. The technique involvesparticipants writing down the emotions that the thought of their own death arouses, as well as detailing what they think will happen as they die and once they are dead.

Spider phobics primed like this had increased reactions to spiders, such as avoiding looking at spider-related images, when compared to spider phobics not primed with death. And compulsive hand washers spent more time washing their hands and used more paper towels when primed with death.

Likewise, those with social phobias took longer to join social interactions. After they had been reminded of death, they also viewed happy and angry faces as more socially threatening – as these faces indicate judgement – than neutral, seemingly innocuous faces.

Is fear of death normal?

Given that we are all going to die at some point, death anxiety is a normal part of the human experience. For many of us, thinking about death can evoke fears of separation, loss, pain, suffering and anxiety over leaving those we love behind.

According to terror management theory, this fear has the power to motivate a life well lived. It stimulates us to cherish those we love, create enduring memories, pursue our hopes and dreams and achieve our potential.

Death anxiety is a normal part of human experience.
Death anxiety is a normal part of human experience.

Death anxiety becomes abnormal when it forms the basis of pathological thoughts and behaviours that interfere with normal living. Many obsessive-compulsive hand washers and checkers spend significant amounts of time each day in ritualistic behaviours designed to reduce the threat of dirt, germs, fire, home invasion or threats to themselves and loved ones.

Similarly, those with phobias may go to extreme lengths to avoid what they fear and react with extreme distress when confronted with it. When these thoughts and behaviours lead to impaired functioning, anxiety is no longer considered “normal”.

Treatments, such as cognitive behaviour therapy, for a range of disorders may need to incorporate new strategies that directly address death anxiety. Without such innovation, the spectre of death may tragically haunt the anxious across their lifespan, until it is too late.

Complete Article HERE!

Listening to patients at the end of their lives is crucial – so why don’t doctors do it?

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Communications skills training in medicine is patchy, undervalued and not a clinical imperative – but 90% of doctors say it should be mandatory

 ‘Promoting better communication can signal to every doctor that the difficult skill of really listening to patients is one that can be learned in the same way as suturing a wound.’
‘Promoting better communication can signal to every doctor that the difficult skill of really listening to patients is one that can be learned in the same way as suturing a wound.’

The new patient is an elderly, diabetic lady whose heart has been teetering on the edge of failure for the past two years. She likes saying that her husband’s death broke her heart – it might have been so but at age 80, diabetes, uncontrolled hypertension and a series of heart attacks have also taken their toll. The last little while has been particularly eventful, with practically a hospital admission each month despite maximal therapy.

She sees a different physician every time to tackle her immediate problem – fluid overload on one visit, diuretic-induced dehydration the next; sky high sugars one month, dangerously low ones the next. There are short-term solutions but no overarching intent of management. Everyone, including the patient, simply skids from one disaster to the next. She looks defeated and miserable. This time, her exhausted son pulls me aside and says, “I know you are the expert, but am I alone in thinking that treatment is futile?”

He was being sensible, not cruel, as he feared. He was right that treatment was futile and what was missing was a narrative of his mother’s long illness that included death as an end point. Avoiding even the mention of mortality, we were doing the patient, her family and ourselves a disservice.

His words brought home two truths. First, that patients are entitled to more thorough explanations and better conversations about their health. Second, that we are seeing an emerging theme in medicine, where patients and families are seeking to define the boundaries of care when doctors either don’t or won’t.

In fact, the timeless business of dying has never had a higher profile, which is why the results of a recent survey by the Royal Australasian College of Physicians make for sobering reading.

The RACP end of life working party, of which I was a member, surveyed more than 1,500 physicians to identify their knowledge and practice of advance care planning and end of life care. Unsurprisingly, the majority reported routinely caring for patients who were likely to die within 12 months. On a weekly basis, one third of doctors observed provision of treatments inconsistent with known patient wishes and one-third observed treatment with little chance of benefit.

And while doctors overwhelmingly agreed that discussing end of life care was important, only a minority actually translated the intention into action. Barriers included a lack of time but just under half of the physicians felt insufficiently trained to undertake what is easily one of the most consequential conversations in the doctor-patient relationship. As a result, a dismal 17% of physicians expressed confidence in knowing the end of life preferences of their patients.

More than any other group, apart from general practitioners, physicians are expected to conduct difficult and sensitive conversations with chronically ill patients to define goals, and hence, boundaries, of care. A surgeon’s adroitness with the scalpel is best paired with the wider perspective of a physician who deliberates whether the patient will survive the operation. A tricky biopsy is within the radiologist’s reach but it’s the physician who asks whether it’s the right thing to do. This is not to diminish one speciality or elevate another but merely to acknowledge that our combined skills are necessary to provide appropriate and judicious healthcare.

When it comes to sustained communication with hospitalised patients about complex and chronic illness and helping them navigate the end of life, the burden on physicians has always been higher, which is why it’s a worry when as a group, they express uncertainty about their ability to provide this core component of care.

At the end of life, physicians are typically the doctors expected to explore your deepest longings and regrets, your strongest convictions and worst fears. In between, they deliberate resuscitation status, stop antibiotics, encourage palliation and provide counsel to the frazzled resident who says, “He is dying but the family wants everything done. How should I respond?”

002No matter how prepared one is for the end of life, for most of us there is accompanying consternation, grief and anxiety. One might reasonably expect a physician to be the custodian of good health but also the guarantor of comfort and dignity in death. It’s clear that physicians aspire to be that doctor but confess to needing help. In the survey, a staggering 90% of physicians thought that communication skills training should be mandatory.

It isn’t, you ask. No, and it has never been. Such training in medicine, especially when it pertains to end of life care, is patchy, undervalued and considered an optional extra rather than a clinical imperative. In an era where we have mapped the human genome and talk about cancer moonshots we have consistently failed to provide not just physicians, but all doctors, with the tools to be effective communicators.

It’s often feared that in discussing mortality a doctor will extinguish hope – and there is indeed a tension between maintaining hope and telling the truth – but patients tell us they value honesty and doctors know it’s the right thing to do.

Becoming a tactful, sensitive and honest communicator is a lifelong process but it’s important enough that it shouldn’t be left to chance. But this is exactly what medical schools and hospitals largely do. And then we lament that despite all the advances in medicine, doctor-patient communication remains a fraught problem that underpins a significant majority of healthcare complaints.

Hospitals hate removing doctors from the floor because it costs money. Many are dubious that communications training can alter a doctor’s fundamental approach to patients, so they end up dealing reactively with problems.

But promoting better communication can influence organisational culture by signalling to every doctor that the difficult skill of really listening to patients is one that can be learned in the same way as suturing a wound or interpreting an ECG.

Doctor-patient communication has long been viewed as an indulgence that comes at the cost of service delivery. Fire training is mandatory as is training in cultural sensitivity. It is mandatory to know how to resuscitate a patient but not how to broach end of life care.

Patients are increasingly taking charge of their needs and concerns at the end of life and physicians will be forced to listen and respond accordingly. It’s hard to find nine out of 10 doctors agreeing over anything. If they are clamouring to become better communicators, it’s time we took note.

Complete Article HERE!