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Is it Possible to Die of a Broken Heart?

After 55 years of being by his side every day, being apart was more than she could handle when he became ill.

by

[S]omehow she knew it would be the last time she saw him. They had lived together in their house for 37 years until it became necessary to move to an Assisted Living Facility. Not their choice at all, but they could no longer maintain their home, their finances, their nutritional needs and more.

They met in their mid-twenties on a blind date at the beach. They sat on a blanket smoking cigarettes; she, shy and unsure of herself, was immediately intrigued and attracted to the young man a year and a half her junior. She must have had an open heart; he had just had all his teeth pulled. She didn’t care; she saw a kind and gentle soul. Two months later, he had a new set of teeth and a bride, marrying in his parent’s backyard.Within five years they had two children, a boy, and a girl, just like she wanted. She loved being a mom and a wife. They moved as a family across the country twice, settling in Central Florida and buying a home after many years of renting.

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My parents rarely fought. They bickered and disagreed, but I don’t remember any ugly scenes. I just remember love. Whenever they did get on each other’s nerves, it didn’t last long. Especially if  I put their favorite song, The Nearness of You, on the record player. It was impossible for them not to stop fussing and begin to laugh and hug and kiss each other when they heard it.

They loved each other’s company. It was rare they were apart if they weren’t working. They just loved to be together. A lot of husbands don’t enjoy going to the grocery store with their wives. Dad always did. Probably to keep her from spending too much, but regardless, they did it together. I have many memories of them walking through grocery stores and malls holding hands. My parents didn’t have any issues with public displays of affection.

I have fond memories of them bowling and square dancing together too. They got up together every morning, and went to bed together at the same time every night, after the evening news. When they both retired, they drove around the country, stopping to visit friends and family. Just the two of them. Inseparable.

As with many people, aging was not kind to my mom and dad. He went through a bout of Leukemia and shingles. She – a heart attack, congestive heart failure, kidney issues and breathing trouble. Her heart surgery went fine, but she contracted MRSA in the hospital and required more intensive surgery that she nearly didn’t survive.

But she pulled through. She was a fighter and she needed my father. And he needed her too. He sat by her side every day in ICU, then at the long-term hospitals and rehab facilities where she was moved for recovery.

Finally, she came home and they enjoyed a few quieter years together with me checking on them daily.

But there soon came a time when they needed more. Much more.

Dad was showing signs of Dementia. Medicine and meals were missed. Food was rotting in their fridge. Bills weren’t getting paid. Little by little, their well-being was eroding and I was struggling to help them maintain.

It took a crisis of their phones being shut off and nearly their electricity too, to really understand their situation, and while it was one of the toughest decisions I ever made, I moved them to an ALF and sold their home.

For a while, Dad did well. Even though he had early dementia, he still was able to drive and he became involved in activities. Mom was less happy, but she was safe, her medications were managed for her and I was finally able to sleep.

And for a couple years, life was status quo. Until it wasn’t.

Little by little, Dad’s mind began to slip and then continued to slip away. It started with him sleeping more than usual which I attributed to depression; sleeping is a great escape when you feel you are “having your life taken away from you.”

And the slide continued. His confusion increased as his cognitive mind decreased. One of the hardest days was having to take his car away. His self-care began to erode. There were days he didn’t get dressed or shave. He wasn’t eating very much. He slept much more of each day than he was awake.

Mom was frightened. She felt isolated and alone. I could tell she was grieving as she watched the man she loved so deeply slowly disappear. I felt the grief as well. The meds the neurologist prescribed we had hoped would slow down what was happening to his mind. didn’t seem to be slowing down anything at all.

Then the phone calls from the ALF staff began.

“We are having a problem with your father. He is wandering into other resident’s rooms.”

We all knew it wasn’t intentional. He just had no idea where his apartment was, after five years of living there. And with each passing day, it became obvious he needed more help with activities of daily living as he could no longer care for himself and Mom was unable to care for him.

This was where the heartbreak began. Dad had always provided for the family and Mom and always been, well, Mom, the nurturing rock as many mothers are. When she became sick, he took over, administering her medications including insulin four times a day. Now neither of them could help each other and he was becoming a shell of the man he used to be.

A painful decision was made to move him to the Alzheimer’s unit. My parents had never been separated before. Mom moved to a smaller apartment a short time after. She became increasingly depressed as his mind continued to drift.

I spent hours trying to reach him. Singing to him. I have read many studies that music is the last thread some Alzheimer’s patients hang onto and there were times he would nod and hum along.

Mom hated going to see him in the Alzheimer’s unit. It bothered her immensely. My stress increased as well trying to help both of them. She called me often, leaving voice mails if I wasn’t available, always asking about my dad. How was he? She was so worried about him. Her grief was palpable.

About six weeks after his move to the unit, Mom asked to go see him. Her color was not good. We entered the unit and found Dad sitting outside his room in his chair – the one I brought down so he would have something familiar. He seemed lost in his own world.

I paused as I heard the music on the sound system. The Nearness of  You was playing. What were the odds that their song was filling the room. Divine intervention perhaps?

“Dad,” I whispered in his ear. “Listen. Do you hear the music? It’s your song. And look, it’s your bride.”

He nodded slightly and looked at Mom. I began to sing in his ear the words and he continued to nod. I glanced at Mom; tears were running down her cheeks. Somehow I helped him stand up, and she did too and they gave each other a hug. I asked him if there was anything he wanted to say to her and he croaked out “I love you,” in a raspy voice, then sat down and closed his eyes.

Mom was shaking by now and asked me to take her back to the main area, out of the Alzheimer’s unit. It was just too painful for her.

The next day, the call from the ALF was not about him, but her. She was being rushed to the hospital: her broken heart had stopped beating.

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Complete Article HERE!

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The dying process: What to expect when someone is close to death

There’s evidence that even unconscious people can hear conversations and words spoken to them

By Bianca Nogrady

Hollywood has a lot to answer for when it comes to our ideas of what death looks like.

The majority of deaths on screen are violent, bloody, traumatic affairs, with few realistic portrayals of what a death from illness or so-called “natural causes” actually looks like.

Little wonder we have such a fear of death, and especially of being in the presence of it.

It’s still a terrifying notion, because most of us have no idea what we will see.

My own curiosity about death led me to write a book on the topic.

In bringing together medical research and personal stories from those who’ve undergone near-death experiences, I learned a lot.

Dying can be calm and peaceful; it can be awful, shocking, traumatic. Most of the time, it’s a little bit of both.

 

The expected

There are some fairly common things that happen when someone is approaching death.

They will often eat less and less, and — as things get closer — even stop drinking fluids.

They will also sleep more and more, and in many cases start to slip in and out of consciousness.

The final stages of dying also tend to involve some distinctive, and sometimes distressing, changes in breathing.

Breathing rhythms

One of the breathing rhythm changes is called Cheyne-Stokes breathing; a cycle of anywhere from 30 seconds to two minutes where the dying person’s breathing deepens and speeds up, then gets shallower and shallower until it stops.

Then there is a pause, which can sometimes stretch on so long that you think the person has stopped breathing altogether … before the cycle resumes.

Another is the awfully-named ‘death rattle’, caused by a build-up of saliva or secretions at the back of the throat.

 
This happens because the dying person is not clearing their throat or swallowing.

It can also sound like there is congestion in the dying person’s lungs.

Unfortunately, not much can be done about either of these signs, but perhaps some comfort can be taken from the fact that there is little evidence either of them is a sign of distress or discomfort.

Can you hear me?

As people near death, their limbs, hands and feet may get cold, and the colour of their skin may change from a healthy pink to a sallow, grey or mauve tinge. Sometimes their skin can be clammy and their hair plastered down with sweat.

While the dying person may be unresponsive, there is growing evidence that even in this unconscious state, people are aware of what is going on around them and can hear conversations and words spoken to them, although it may feel to them like they are in a dream state.

There is also evidence that people in this state are hypersensitive to touch, so soft, gentle physical contact is best.

The unexpected

What should you expect in the final stages of dying?

Sometimes death can deliver one last gift to loved ones who have been long denied meaningful interactions because of disease such as Alzheimer’s disease, dementia or brain tumours.

Terminal lucidity, or ‘lightening up’ was first described in the medical literature as early as 1833.

It refers to a period of awareness or consciousness, sometimes a complete return to form and personality in someone who may have been gone — to all intents and purposes — for many years.

They may recognise close family members for the first time in a very long period. They may also crack a joke, smile and interact as if they had never left.

It can be a silver lining, but a brief one.

It heralds that death is imminent, but can offer people a last precious glimpse of the person they love.

Final conversations

Many people and studies have also reported the dying apparently being visited by and having animated conversations with unseen people in the room.

Sometimes they appear to be talking to a loved one who has long since died — a parent, partner, or sibling. Sometimes it’s a religious figure.

But studies of this suggest that it is almost always a positive experience for the person who is dying; they begin to talk of journeying and being welcomed.

Restless death

Perhaps less welcome — and equally as uncommon, occurring in around 1 to 2 per cent of deaths — is pre-terminal agitation.

This could be as minor as someone plucking at the bed sheets, restlessness and fidgeting, but it can be as dramatic as someone who might be hours away from death running down a hospital corridor yelling and screaming.

These are generally expected signs that death is near.

Death, when it comes, can sometimes be as simple as one last long exhalation with nothing following. The pulse stops, the skin may suddenly take on a waxy hue, and in the majority of situations, this is the moment when we begin to grieve.

But sometimes the unexpected can happen.

The shocking

Death can be shocking enough. But imagine if you had said your final goodbye, the last breath has come and gone, then the person who you thought was dead suddenly draws a gasp and twitches.

Agonal breathing or agonal gasps are the last reflexes of the dying brain.

They are generally viewed as a sign of death, and can happen after the heart has stopped beating.

Another strange and disturbing reflex that has been observed after death is called the Lazarus reflex.

People who have been declared brain dead and have had artificial ventilation turned off have been seen to raise their arms and lower them slowly, sometimes crossed across the chest, sometimes by their side.

Brain death may also be accompanied by other reflexes that are no more a sign of life than the jerk of your knee when it is tapped with a hammer.

These include repetitive facial twitches, slow toe twitches and even the entire leg twitching.

Thankfully these more disturbing aspects of death tend to be rare.

Being with someone when they die may be a confronting and even terrifying prospect to many.

But of those people who have sat with a loved one — or even a stranger — when that person died, very few regret it.

For most people who are present at this event, it is a gift; a chance for stillness and communion and honesty and reflection that we are rarely granted at any other time in life.

Complete Article HERE!

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How clergy can help believers die a ‘good death’

U.S. clergy may be increasing the sting of death for many members of their flocks.

By David Briggs

[T]wo new studies find that many clergy are both ill-prepared and reluctant to fully engage in end-of-life conversations with terminally ill congregation members and their families.

The result, both studies suggest, is that more believers may be spending their final days enduring painful treatments with little chance of success in intensive care units rather than receiving comfort care at home.

One of the studies was a national survey of more than 1,000 clergy. The other involved in-depth interviews with 35 ministers from five states. The research raises three critical areas of concern:

· Too much faith in miracles: More than three in 10 clergy in the national survey said they would strongly agree with a congregant who said, “I believe God will cure me of this cancer.” Eighteen percent affirmed the belief that every medical treatment should be accepted “because my faith says to do everything I can to stay alive.”

· Lack of knowledge: In the in-depth study, spiritual leaders showed little knowledge of end-of-life care, including the benefits of palliative care and potential harms associated with invasive interventions. “Many grossly overestimated the benefits of aggressive medical procedures at the end of life,” researchers reported in the Journal of Palliative Medicine. Three-quarters said they would like more training in end-of-life issues.

· Fear of overstepping boundaries: The default position of many clergy, even those who personally believed it was against God’s will to suffer unnecessarily, was to merely support the decisions of dying congregants and their family members.

But even such passivity has consequences, researchers said, in that it can enable congregants to seek potentially nonbeneficial treatments that are associated with increased suffering.

The larger problem was summarized by one study participant: “We have not done a good job…on preparing people to die–that they don’t need to live the last days of their lives under terrible and excruciating pain.”

Competing principles

The new studies are part of The National Clergy Project on End-of-Life Care,

What is clear in both studies is the complexity in end-of-life decision making.

Spiritual principles such as the sacredness of life and the capacity for divine healing may come into conflict with other religious principles to comfort the suffering and place faith that God will care for individuals after this life.

For example, clergy were asked in the national study what they would talk about when visiting a patient with cancer and no hope for a cure.

Fifty-six percent said it is important to encourage acceptance of dying as part of God’s plan. Two-thirds would place a priority on suggesting hospice as a good idea. Eighty percent said it is important to talk about heaven and life after death.

Yet, 60 percent also would strongly encourage prayer for physical healing, holding out hope for a miracle.

At one extreme, 18 percent of clergy endorsed the idea of accepting every medical treatment to prolong life, and 16 percent said doctors and nurses should do everything possible to extend the life of a patient.

The clergy most likely to place their faith in divine healing were from the black church, Pentecostal and evangelical traditions and those serving low-income congregations, researchers noted in the Journal of Pain and Symptom Management.

The attitudes mattered to their flocks.

Clergy that endorsed life-prolonging religious values were approximately half as likely as other clergy to have a discussion concerning entering hospice, stopping treatment or forgoing treatment. The absence of a clergy-congregant hospice discussion was associated with less hospice and more ICU care.

In the in-depth interviews, no clergyperson said aggressive care was an “absolute good.” Several said it hampered a good death, and one said it was an “absolute bad,” researchers reported.

Yet despite their own strong views, many clergy refrained from influencing decisions about end-of-life care.

The ministers said they did not offer guidance out of respect for the “free will” of congregants, but researchers indicated a lack of knowledge of the medical consequences also played a role.

Humble approach

What can be done to assist clergy in helping religious individuals make better informed decisions about end-of-life care?

Clergy education is critical, researchers from both studies said.

The studies concluded that clergy training focused on the intersection of religious values and medical issues at the end of life offer several opportunities for improving care, including:

· Closing the gap between the clergy’s beliefs and actions.

· Empowering clergy to counsel congregants about the moral and spiritual implications of end-of-life medical decisions.

· Supporting religiously informed decision making by patients that minimizes unnecessary physical and spiritual suffering.

· Creating partnerships of ministers and disease-based and palliative care clinicians.

What clergy say – and what they do not say – can make a major difference in whether believers experience a “good death,” the studies find.

“There are times,” one black minister from Chicago told researchers, “Death itself is a cure to what ails you. It’s the healing.’’

Complete Article HERE!

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Death with dignity

When end-of-life wishes collide with untenable costs

My grandmother and grandfather celebrating their 50th anniversary.

By

[I]ntellect was the core of my grandmother’s identity. Rita loved reading biographies, watching dramas, and traveling to new countries. But about ten years ago, her mind began to deteriorate. Now she cannot read, speak or recognize people — the antithesis of her previous intellectual self.

Then she lost the ability to eat. When a piece of food went down the wrong pipe three years ago, her lungs filled with fluid and the pneumonia that followed brought her and the entire family to the hospital. The doctor suggested we consult a palliative care specialist and let her die peacefully. The alternative was to insert a feeding tube.

Rita had recorded her end-of-life wishes. The document reads, “I feel especially strongly about the following forms of treatment … I do not want tube feeding.” But the same document also assigned her health care decisions to my grandfather. And he couldn’t let her go. “She doesn’t know how great the new technology is,” he stressed.

Despite Rita’s explicit wishes, she sits on the couch now, her vacant gaze fixed to the TV screen where Mary Poppins plays on repeat. She doesn’t comprehend that the vivid world in which Julie Andrews sings and dances is one she used to inhabit too.

For some, innovative devices like Rita’s feeding tube are a medical miracle. For others, they prolong a painful and unwanted existence. Even though Rita wanted to die at the natural time, she lost the mental capacity to execute that decision.

When faced with a terminal illness, many mentally competent people recognize the harrowing challenges ahead. These challenges span from loss of autonomy, like my grandmother’s case, to physical deterioration and excruciating pain. To allow these patients more freedom in determining their future, six states have legalized physician-assisted dying.

But even that path has hurdles, as the price of the conventional life-ending medication Seconal has ballooned to upwards of $3,000 under pharmaceutical giants prowling for profit. The steep price has driven doctors, mortally-ill patients and health care experts to wrestle with financial inequality at the final moments of life.

“It’s an example of inequities in our health care system. People have a right to do something but they don’t have a right to get it at a reasonable price,” says Dr. Stuart Youngner, a professor of bioethics and psychiatry at Case Western Reserve University.

Washington state legalized physician-assisted dying in 2008, and the price of Seconal has gradually risen from a few hundred dollars to over $3,000, according to a study published in JAMA Oncology. The highest increase was in 2015, when the Canadian pharmaceutical company Valeant Pharmaceuticals acquired the drug and doubled its price from $1,500 to $3,000.

The increase occurred a month after aid-in-dying legislation was introduced in California, potentially expanding Seconal’s market. Valeant Pharmaceuticals stated that the price was determined by multiple factors including generic alternatives and development costs. (Although the drug has been available since the 1930s.)

This certainly isn’t the first time Valeant has garnered criticism. State and federal agencies have launched multiple investigations into the company’s troubling prices and practices. And Valeant isn’t the only culprit. In December, the Senate investigated high drug prices, and the constant need for pharmaceutical companies to repay investors created a “business model that harms patients, taxpayers and the U.S. health care system,” according to their report.

“What does it mean with yet another instance of pharmaceutical companies seeming to increase the cost of medicines to artificially drive up prices?” asks bioethicist Dr. Robert Arnold, director of the Palliative and Supportive Institute at the University of Pittsburgh Medical Center. “It seems to me that that question isn’t unique to this issue. That question has happened an enormous number of times over the last couple years.”

“As a society,” he continues, “how do we deal with these issues of man-made shortages of medicine?”

A team of doctors in the Northwest grappled with just that question. Doctors at End of Life Washington counsel terminally ill patients and their families about end-of-life options. Some clients couldn’t afford Seconal. Others couldn’t fathom shelling out thousands of dollars to simply die a peaceful death. So seven doctors got together to create a less expensive life-ending medication.

“We all felt responsible for giving patients another option that would be affordable,” says Dr. Therese Law, the medical director of End of Life Choices Washington and a retired physician of 35 years who helped develop the medication.

The team participated in meetings and conference calls over the next few months. They discussed various compounds and dosages that could be used for the lethal mixture. The medication would be prescribed by a physician and obtained at a compounding pharmacy, which dispenses medications whose components and dosages are tailored to the individual patient.

“I think it was a very careful deliberation between pharmacists and prescribing physicians and cardiologists. We talked about various different medications and their effects and their side effects,” Law says.

The doctors had to continuously assess the medication. A few family members reported that the first combination led to a painful burning sensation in the person’s throat. The second version made some deaths take too long. The doctors are currently gathering data to research a third protocol.

“Their intent I do not challenge, nor do I challenge the patient’s desire to have this done. I’m wondering about if their execution of their goals might not be optimal … Is there a better way of approaching the problem?” says Dr. Maurie Markman, the president of Medicine and Science at Cancer Treatment Centers of America.

Part of the problem is that a perfect parallel does not exist. Canada legalized euthanasia last year, in which a doctor uses a lethal injection to hasten a patient’s death. In Europe, drugs called barbiturates are often used, but Americans can’t purchase them, as the European Union applied sanctions to limit barbiturate exports to the United States in opposition to its death penalty.

Should physicians devote their time to helping patients circumvent pharmaceutical greed? This doesn’t seem like the way doctors should spend their time or the way patients should get their healthcare. And Seconal represents a particularly poignant example, since terminally ill patients have often spent an enormous amount of money on medication already.

“In a sense it’s ironic, because a lot of the critics of physician-assisted suicide are worried that poor people will be taken advantage of,” Younger says. “It looks like in this case poor people will be discriminated out of it, not discriminated into it.”

My grandmother is stuck in a manmade medical purgatory, a state she never would have chosen for herself. To some it represents progress, but to me, it’s hard to watch. As society continues to propel medicine forward, we need to allow people choice in how they die. And the right to a dignified death should extend to everyone — regardless of how much money is in their wallet.

Complete Article HERE!

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You may not be able to get buried the way you want to in Colorado

By Oscar Contreras

[P]eople don’t generally think about how they want to celebrate the inevitable, but a few do. They may want a traditional party or they may want something more unusual: A sky burial in the mountains, a Viking funeral by a lake or if they’re really into history, they may want to get mummified.

If you’re among the few, you may want to rethink your options. But before we go into the why, let’s review some of these funeral practices.

What is a sky burial, a Viking funeral and mummification?

A sky burial, also known as a celestial funeral, is a simple practice in Tibetan culture where a corpse is left on a mountaintop to be devoured by birds of prey.

According to Tibet Vista, in Tibetan Buddhism philosophy it is believed that if vultures feed off the dead body, the dead has no sin and that their soul has gone peacefully into the heavens.  

Strangers are not allowed to attend the ceremony and family members are not allowed to be present at the burial site.

A Viking (Norse) funeral is generally thought to have been the preferred method for disposing of a body in the Nordic countries. Legend has it that warriors and other high-ranking people were sent sailing away and were set ablaze so that their bodies had a higher chance of reaching Valhalla.

We said “legend” because that’s not how Nordic peoples disposed of their dead. Yes, it is true – you’ve been fooled by Hollywood once again.

Norse funerals actually involved making burial plots shaped as ships marked by stones, according to TheFuneralSource.

Cremation did take place, but it did not involve a boat sailing into the sunset.

The deceased were also disposed of with their goods they used in life, so they could use this in the afterlife.

Mummification is the process by which the skin and flesh of a dead person can be preserved for thousands of years, as was the case with pharaohs in ancient Egypt.

While the practice has died out, a company in Utah is offering “modern mummification” and not just for you – your pet can also join you in the afterlife if you so desire.

Tough luck, Colorado

If you left a mark in life and wanted to leave one in death, you may not want to have your body disposed of in the state of Colorado.

“Final disposition” of a body is defined by Colorado law as disposing of human remains by means of “entombment, burial, cremation, or removal from the state.”

Nowhere in the law is it stated that you are allowed to have a sky burial, a “Viking funeral” or get mummified by your relatives.

Allowed burial practices in the state of Colorado

There is no law that prevents you from burying a loved one on private property. But – there’s always a but – the burials must be recorded with your local county clerk 30 days after the burial has taken place. 

Check with your county clerk before taking this step.

The same goes for scattering ashes – you must check with your local city and county offices to see what the regulations are and if you can proceed with the decedent’s wishes.

Want to scatter ashes in national lands, like Rocky Mountain National Park? It is allowed! But you have to have a permit to do so.      

Green burials, a growing trend in Colorado 

Less costly goodbyes known as “green burials” are growing in popularity in Colorado.

Natural Funeral, a Lafayette-based funeral service business, is helping people die as naturally as possible with minimal impact to the earth.

So what’s a green burial or natural funeral? It involves having the body placed directly into the ground in a pine casket or shroud. There is no fancy headstone, concrete vault, or costly casket. Instead, the company uses flat granite markers.

The green funeral home is hoping to open by this summer. 

Complete Article HERE!

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So, you want to hire a death doula?

Three things to consider

By Amy Wright Glenn

It is estimated that 6 percent of American women now hire birth doulas for emotional, physical and even spiritual support during labor and delivery. Twenty years ago, when the birth and postpartum doula movement was in its nascent stage, this percentage was certainly much, much lower.

In fact, 20 years ago, the word “doula” itself evoked quizzical looks. Even 10 years ago, following my initial certification with DONA International, friends, family and colleagues would often inquire: “What’s a doula?” Today, the term has become a part of our common lexicon. Most Americans recognize its meaning: A birth doula is a professional trained in comfort measures, listening techniques and providing compassionate care to women as they labor to give birth.

But, what about death?

How many Americans have heard of “death doulas”?

Today, wise and creative cultural pioneers lead a burgeoning movement in applying key elements of the birth doula model to train people to companion each other in death. Given that our experience of death has become so institutionalized and medicalized, applying the doula model of care to death and dying represents a sane and needed grounding in the wisdom of compassion, companioning and proven comfort measures.

Henry Fersko-Weiss is such a pioneer. Author of “Caring for the Dying: The Doula Approach to a Meaningful Death,” Fersko-Weiss has trained more than 350 death doulas through the International End of Life Doula Association. Fersko-Weiss believes that the end-of-life doula movement will grow faster than the birth doula movement did because the birth doula movement “brought the word doula into American consciousness.”

As someone who holds space for both birth and death, I’m hopeful that Fersko-Weiss is right. My specialty is in working with bereaved parents who know the pain of miscarriage, stillbirth and/or infant death. I’ve witnessed firsthand that there is much wisdom to be gained by applying the doula approach of caregiving to the concluding threshold points of our earthly existence. Certified hospice and palliative nurse and end-of-life doula Deanna Cochran agrees. Cochran has been mentoring and training death doulas since 2010. She remembers her initial pull to death doula work after working for several years in acute care and oncology. She remembers how it became “overwhelmingly clear” that “so much needless suffering was going on, and I wanted to be a part of changing that.”

When our loved ones are dying, we certainly work diligently to end needless suffering. But much of human suffering is emotional and psychological. Physical pain can be alleviated through medicine, but what of the pain of grief? Just as more and more American women have turned to birth doulas to help buoy their courage and strength as they traverse the landscape of labor and delivery, more and more Americans – should they know death doulas exist – will turn to death doulas to companion them through the wilderness of loss.

So, what to look for when hiring a death doula? Consider these three simple points.

  1. Seek out someone who has experience and training. Seek out a certified death doula, if possible. A growing number of organizations offer quality end-of-life doula training. Inquire if a certified and/or trained doula works in your vicinity. If possible, interview more than one potential candidate to ascertain which doula will be the best match for your situation. Inquire about their training, past experience, philosophy in holding vigil and what specific comfort measures they can bring to both the dying and the bereaved.
  2. Seek online and/or phone support as needed. Trained death doulas may not live in your area, but in the age of Skype and FaceTime, one can still benefit from a virtual companion. While there is much to be said for face-to-face interaction and the healing power of comforting touch, it is better to have quality support than to go without care. If you are the primary caregiver for a dying relative or friend, reaching out to expand your own support network is especially a very good idea.
  3. Read and research about the doula approach to caring for the dying. It’s certainly possible to bring key aspects of doula caregiving into one’s personal experience with family and friends. Knowledge and insight gained can help you strengthen your confidence and expand your skill set as you offer your presence in vigil for the dying.

Each month, I receive emails from individuals interested in finding an end-of-life doula. “Can you help me find a death doula? My grandfather is dying.” Or “My mother is nearing death and I’m alone in caring for her, can you recommend an end-of-life doula who can support us?” Such requests carry the weight of a great deal of sadness. It’s helpful to remember that we don’t have to walk through the valley of bereavement alone. Whether our grieving is extremely complicated or pretty straightforward, it is real. It hurts. And death doulas are here to offer up their compassion and skill. They hold us as we hold our sorrow.

Complete Article HERE!

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Can Comfort Care At The ER Help Older People Live Longer And Suffer Less?

As baby boomers age, more older Americans are visiting the emergency room, which can be an overcrowded, disorienting and even traumatic place.

By Melissa Bailey

[A] man sobbed in a New York emergency room. His elderly wife, who suffered from advanced dementia, had just had a breathing tube stuck down her throat. He knew she never would have wanted that. Now he had to decide whether to reverse the life-sustaining treatment that medics had begun.

When Dr. Kei Ouchi faced this family as a young resident at Long Island Jewish Medical Center, he had no idea what to say. The husband, who had cared for his wife for the past 10 years, knew her condition had declined so much that she wouldn’t want to be rescued. But when Ouchi offered to take out the tube, the man cried more: “She’s breathing. How can we stop that?”

Ouchi had pursued emergency medicine to rescue victims of gunshot wounds and car crashes. He was unprepared, he says, for what he encountered: a stream of older patients with serious illnesses like dementia, cancer and heart disease — patients for whom the life-saving techniques he was trained to perform often only prolonged the suffering.

As baby boomers age, more of them are visiting the emergency room, which can be an overcrowded, disorienting and even traumatic place. Adults 65 and older made 20.8 million emergency room visits in 2013, up from 16.2 million in 2000, according to the most recent hospital survey by the Centers for Disease Control and Prevention. The survey found 1 in 6 visits to the ER were made by an older patient, a proportion that’s expected to rise.

Half of adults in this age group visit the ER in their last month of life, according to a study in the journal Health Affairs. Of those, half die in the hospital, even though most people say they’d prefer to die at home.

The influx is prompting more clinicians to rethink what happens in the fast-paced emergency room, where the default is to do everything possible to extend life. Hospitals across the country — including in Ohio, Texas, Virginia and New Jersey — are bringing palliative care, which focuses on improving quality of life for patients with advanced illness, into the emergency department.

Interest is growing among doctors: 149 emergency physicians have become certified in palliative care since that option became available just over a decade ago, and others are working closely with palliative care teams. But efforts to transform the ER face significant challenges, including a lack of time, staffing and expertise, not to mention a culture clash.

Researchers who interviewed emergency room staff at two Boston hospitals, for instance, found resistance to palliative care. ER doctors questioned how they could handle delicate end-of-life conversations for patients they barely knew. Others argued that the ER, with its “cold, simple rooms” and drunken patients screaming, is not an appropriate place to provide palliative care, which tends to physical, psychological and spiritual needs.

Ouchi saw some of these challenges during his residency in New York, when he visited the homes of older patients who frequently visited the emergency room. He saw how obstacles like transportation, frailty and poor vision made it difficult for them to leave the house to see a doctor.

“So what do they do?” Ouchi asks. “They call 911.”

When these patients arrive at the emergency room, doctors treat their acute symptoms, but not their underlying needs, Ouchi says. In more severe cases, when the patient can’t talk and doesn’t have an advanced directive or a medical decision-maker available, doctors pursue the most aggressive care possible to keep them alive: CPR, intravenous fluids, breathing tubes.

“Our default in the ER is pedal to the metal,” says Dr. Corita Grudzen, an emergency physician at NYU Langone Medical Center who studies palliative care in the ER. But when doctors learn after the fact that the patient would not have wanted that, the emergency rescue forces families to choose whether to remove life support.

When older adults are very ill — if they need an IV drip to maintain blood pressure, a ventilator to breathe, or medication to restart the heart — they are most likely to end up in an intensive care unit, where the risk of developing hospital-acquired infections and delirium is increased, Grudzen says. Meanwhile, it’s not clear whether these aggressive interventions really extend their lives, she adds.

Some have sought to address these problems by creating separate, quieter emergency rooms for older patients. Others say bringing palliative care consultations into regular emergency rooms could reduce hospitalization, drive down costs and even extend life.

There’s no hard evidence that this approach will live up to its promise. The only major randomized controlled trial, which Grudzen led at Mount Sinai Hospital in New York City, found that palliative care consultations in the emergency room improved quality of life for cancer patients. It did not find statistically significant evidence that the consultations improved rates of survival, depression, ICU admission or discharge to hospice.

Trying to avert suffering

But frontline doctors say they’re seeing how palliative care in the ER can avert suffering. For instance, Ouchi recalls one patient — a man, in his late 60s — who showed up at the emergency room for the fifth time in six months with fever and back pain. Previous visits hadn’t addressed the underlying problem: The man was dying of cancer.

This time, a nurse and social worker called in a palliative care team, who talked to the patient about his goals.

“All he wanted was to be comfortable at home,” Ouchi says. The man enrolled in hospice, a form of palliative care for terminally ill patients. He died about six months later, at home.

Now Ouchi and others are trying to come up with systematic ways to identify which patients could benefit from palliative care.

One such screening tool, dubbed P-CaRES, developed at Brown University in Providence, R.I., gives ER doctors a list of questions. Does the patient have life-limiting conditions such as advanced dementia or sepsis? How often does the patient visit the ER? Would the doctor be surprised if the patient died within 12 months?

Doctors are using the tool to refer patients at the University of California-San Francisco Medical Center at Parnassus to palliative care doctors, says Dr. Kalie Dove-Maguire, a clinical instructor there. The questions pop up automatically on the electronic medical record for every ER patient who is about to be admitted to the hospital.

Dove-Maguire says UCSF hasn’t published results, but the tool has helped individual patients, including a middle-aged man with widespread cancer who showed up at the ER with low blood pressure. The man “would have been admitted to the ICU with lines and tubes and invasive procedures,” she says, but staff talked to his family, learned his wishes and sent him to home hospice.

“Having that conversation in the ER, which is the entry point to the hospital, is vital,” Dove-Maguire says.

Measured in minutes

But time is scarce in ERs. Doctors’ performance is measured in minutes, Grudzen notes, and the longer they stop to make calls to refer one patient to hospice, the more patients line up waiting for a bed.

Finding someone to have conversations about a patient’s goals of care can be difficult, too. Ouchi enlisted ER doctors to use the screening tool for 207 older ER patients at Brigham and Women’s Hospital in Boston, where he now works as an emergency physician. They found a third of the patients would have benefited from a palliative care consultation. But there aren’t nearly enough palliative care doctors to provide that level of care, Ouchi says.

“The workforce for specialty palliative care is tiny, and the need is growing,” says Grudzen.

Palliative care is a relatively new specialty, and there’s a national shortfall of as many as 18,000 palliative care doctors, according to one estimate.

“We’ve got to teach cardiologists, intensivists, emergency physicians, how to do palliative care,” she said. “We really have to teach ourselves the skills.”

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