What Is Dying Like?

— A Nurse Explains What Dying Bodies Do

It’s hard to ask your doctor what dying will be like. Death is a gut-wrenching reality for everyone. If you have an incurable illness, knowing what to expect as your body shuts down helps you prepare for as “good” of death as possible.

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  • If you have an incurable illness, knowing what to expect as your body shuts down helps you prepare for as “good” of death as possible.
  • There are similarities to every death, but each dying person’s journey is unique.
  • Normal signs and symptoms of dying are increased fatigue and weakness, social withdrawal, increased pain, loss of appetite and thirst, and altered mental status.
  • Changes in the bladder, bowel movements, breathing, and vital signs are also normal.
  • Facing these changes alone can increase suffering. Seek help earlier in your journey from your loved ones and a palliative care specialist.

A “good” death to most people is free of avoidable suffering and aligns with their cultural, spiritual, and relational wishes as much as possible. To achieve a more peaceful death, studies and experts say preparing helps.

As a hospital nurse, I cared for many dying people during their final hours and walked their families through the process. Every last breath was sacred and unique. The patients who learned about death and talked about what they wanted to develop a realistic plan for their comfort. They were more likely to avoid unnecessary suffering for themselves and their families.

At a point in the dying process, you’ll become unconscious and no longer able to express your wishes. Talking sooner than later about your end-of-life needs empowers your family and caregivers to care well for you when that time comes.

What it’s like to die: signs and symptoms of natural dying

A “natural” death refers to someone dying of a terminal illness or old age. More sudden death due to a traumatic injury will have some of these similar signs but at a more rapid pace depending on the injury. These signs and symptoms occur during the last few months to hours of a dying patient.

1. Weakness and fatigue

As the end nears, it’s normal to feel weak and sleepy, but the timeline differs for everyone. Some become weak quickly while others – often younger or healthier at diagnosis – take longer but then decline rapidly.

It’s okay to sleep as much as you need. Try to time your daily tasks and activities for when you’re more likely to have energy.

As you get weaker, a simple activity like sitting outside, going out to eat, or being with your children can cheer you up, even if it’s exhausting. But there may be a point where you simply can’t do it anymore.

Be honest with your loved ones and caregivers about how you’re feeling. Rather than push yourself too hard, be willing to ask for help when your muscles become too weak to move on their own.

2. Social withdrawal

As you progress toward death, you may feel less social. It can be hard to tell this to your loved ones, especially if you’re from a culture or community that many people want to visit. But it’s okay to let them know if you want fewer visitors. Try your best to explain how you feel, assuring them it’s not their fault.

At the end of life, some people want to be surrounded by friends and family instead of becoming less social. Let your loved ones know if you enjoy their visits.

As you feel more withdrawn and weaker, consider the remaining important things you wish to say and try to have the courage to say them before it’s too late.

3. Pain

Your pain may increase as your disease advances or your joints stiffen, but no one should suffer needlessly. Medications, hospice care, and alternative health treatments all help ease your discomfort.

It is difficult for your loved ones to see you hurt. Be sure you talk thoroughly with them about how you want to manage your pain. You may want enough medication to ease the pain while also staying awake with loved ones. Or, you may want the medicine to help you sleep painlessly for much of the day.

Take oral pain medications 45 minutes before the pain becomes intense or before you have an activity planned. Use consistent language to describe your pain so loved ones and caregivers understand when it changes. Make a list of questions about pain management to ask your hospice nurse during their next visit, such as when to call them about increasing pain and how best to take your pain medication. Consider alternative treatments like acupuncture, massage, music therapy, or Reiki.

As you near death and can no longer talk, your loved ones and medical providers will watch for nonverbal signs of pain like grimacing, moaning, stiffening, resistance when they try to move you, calling out, restlessness, or labored and uncomfortable breathing. They can give you medications for any signs of discomfort.

You can trust that with medical help like hospice, you’ll be more comfortable and peaceful.

4. Loss of appetite and thirst

Nearly all patients lose their appetite as they near the end. Your brain will not trigger hunger and thirst sensations during the final stage of death, so you may have no desire to eat or drink.

Eating and drinking less – or not at all – is a normal part of dying as the body stops using nutrients like it did when it was healthier. As a result, your hospice nurse won’t advise trips to the hospital for intravenous (I.V.) fluids or artificial nutrition.

Your loved ones might fear you’ll “starve to death” and plead with you to eat or drink, believing it will increase your comfort and strength. Remind them with kindness that you’re not uncomfortable. When your body is dying from an incurable illness, it will continue to shut down no matter how much you eat.

Eating or drinking less may make your mouth dry and uncomfortable, however. You or your loved ones can apply lip balm and mouth moisturizer. You can also lightly moisten oral sponges with water to moisten your mouth.

5. Dreams, visions, and hallucinations

In the final days and hours, you may become less alert, drifting in and out of consciousness. Many dying patients have dreams and visions of lost loved ones, God, or other spiritual realities. You may experience hallucinations or a surge of energy just before you die. Some feel an increased awareness of death as it gets closer.

For most people, this delirium or altered state of consciousness is peaceful and not distressing.

However, if you become agitated, medications like haloperidol can restore your comfort. Caregivers can also check for other problems like pain, constipation, bladder infections, or side effects of medication.

If you experience such symptoms when you are still awake and alert, it can be helpful to talk with loved ones or care providers like end-of-life doulas and hospice nurses, counselors, and chaplains.

6. Bladder and bowel changes

At different stages during the dying journey, you may notice bowel and bladder changes.

Your urine may change color due to organ failure, and you may urinate less. Depending on your disease process, you might lose control of your bladder – also called bladder incontinence.

Incontinence can cause skin breakdown for bedridden patients. If this happens, some medical providers recommend a urinary catheter if they increase patient comfort while protecting their skin. A catheter may also be recommended if your bladder is retaining urine.

Constipation is not uncommon at the end of life. Your medical providers should counsel you on taking stool softeners and laxatives for constipation. These should be stopped or decreased, however, if you stop eating.

It may feel awkward, but it’s always best, to be honest about these symptoms with your caregivers.

7. Skin changes

In the later stages of the dying process, your skin may change in temperature and color as it stops functioning. During your final days, your body will move blood away from your arms and legs while it shunts it to the vital organs. These changes can make you feel cold and make your skin look pale, gray, or blotchy.

Some people, however, feel warm and flushed or develop a slight fever. A cool cloth on one’s forehead may ease the heat.

Keep your loved ones informed when you get too cold or hot. This helps them understand your body’s trend to care for you when you’re unconscious. Heated blankets and heating pads can be helpful but can also burn your skin if ignored.

8. Breathing changes

When people are within days to hours of dying, their breathing changes. Sometimes it’s very slow and regular with only a few breaths each minute. For others, it’s slow and irregular where they may breathe three breaths and then wait 45 seconds to take another breath.

Some patients breathe very fast, then slow down, pause, breathe fast again, and so on. This is a normal end-of-life breathing pattern called Cheyne-Stokes respiration. It can occur when the brain forgets to trigger breathing.

When you reach your final breaths, agonal breathing is common. Agonal breaths look like the patient is trying to gulp for air and can be distressing to loved ones if they’re unfamiliar with it. Nurses sometimes nickname it “guppy” breathing because the mouth opens wide and the jaw and shoulders work to pull oxygen into the lungs.

When the diaphragm and other muscles weaken, phlegm builds up in a dying patient’s airways, making a rattling sound when they breathe. This is known as the “death rattle.” If this rattle occurs to you, it will not feel uncomfortable, but the sound can be distressing to loved ones. Your caregivers may reposition your body or your neck to reduce the rattle.

If a medication like atropine is given at the beginning of your final days, it may improve the death rattle later when it occurs in your final hours.

These breathing changes – even agonal breathing and the death rattle – rarely, if ever, cause discomfort. They are a normal part of dying and occur when you are in a relaxed and unconscious sleep.

If your breathing does look painful, very labored, or very rapid, your loved ones or nurses will give you a medication like oral or I.V. morphine, because the labored breathing may be a sign of pain. Morphine is typically the end-of-life pain medication of choice because it not only dulls the pain but also eases your breathing.

You may want to continue wearing oxygen as you reach the end. In most cases, it will not lengthen your life significantly during the final days, but some people find it comforting.

9. Heartbeat and blood pressure changes

Changes in your heartbeat and blood pressure will also occur. Your heart rate may become irregular and eventually weaker as your heart fails. These are normal changes and are not treated at the end of life. To de-medicalize the dying process for the patient and their loved ones, most medical providers will stop monitoring vital signs during a patient’s final days.

Facing death takes profound courage. If you have an incurable illness and know death approaches, gather your loved ones and your medical team around you. Consult with a palliative care specialist sooner than later to help you through the journey. Be sure to talk openly with them about tough topics such as what it’s like to die and how they can help make you comfortable.

Complete Article HERE!

I retrained as a hospice nurse – and lost my fear of death

A year after being widowed, Laura Horn began volunteering in a hospice, sitting with people who were about to die. She soon realised she could do more for them …

‘I’ve had life experience’ … Laura Horn.

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Laura Horn has found what she calls her end-of-life career, “a vocation to last the rest of my life”. In her 60s she decided to train as a registered nurse, specialising in hospice care. “I’m a brand new nurse but that’s not what’s important,” she says. “I’ve had life experience.” After Margaret, her wife of 20 years, died “suddenly and unexpectedly”, Horn understood she had to make a change. She had been thinking about volunteering in a hospice, after her mother and both parents-in-law were given palliative care. Following Margaret’s death in January 2017, Horn applied to the Zen Hospice Project in San Francisco, which trained volunteers to sit with the dying. They told her: “Wait a year. You can’t do it right away.”

Looking back, she says, they were right. “You can’t jump into something new until you have grieved appropriately.” She had “good therapy” and did what she calls “walking grief – I mean, I walked everywhere”. A year later, she reapplied. “They said, ‘Why do you want to do this?’ and my first sentence was, ‘I know loss.’”

As well as Margaret, she had outlived her parents, her parents-in-law and her brothers. They both “died of substance abuse, one of a heroin overdose, and the other of long-term substance abuse. That, I’m sure, was part of my motivation,” she says. “That kind of pain can also lead to openness and joy, and that’s what I’ve discovered.”

Volunteering was “a truly transformative” experience for her and Horn realised she wanted more. “I thought, I want to do the nursing part too.” As an undergraduate, she had studied biology, and her early work was in public health before she switched to education research. Most of her career was spent “trying to determine what helped students succeed in college and beyond. But I always had the sense that I would circle back to the world of health,” she says.

At 63, she enrolled at one of the very community colleges whose impact she had been researching, to take the prerequisite courses – anatomy, physiology, microbiology, pharmacology. From there, she applied to nursing school at 65, on an accelerated one-year programme for graduates.

The intensity was staggering. “I was devoting every waking hour to studying and my clinical work,” she says. The friends who had supported her after Margaret’s death, and lived nearby in Berkeley, California, cooked for her three nights a week. Horn would visit for an hour, then leave to study. “We called it ‘catch and release’,” she says. Her two children with Margaret had left home but were supportive. When she graduated, one of her friends made a little sign out of brightly coloured paper – “It’s never too late” – and stuck it to the back of her mortarboard.

In some measure, Horn has put herself back at the heart of the storm, in a place of death and loss, which she occupies for three shifts a week at the hospice where she works in Oakland. How emotionally taxing is her new career?

“We are not part of the family so there is that distance,” she says. “We are here with you at this important time. We are here to normalise the experience and we teach family members what to look for, and not to be scared. It’s emotionally taxing but not overwhelming.”

Now 68, Horn has noticed her own attitude to death evolving. “I think I have relaxed around it,” she says. “After seeing all I have about death I’m not so scared of dying. I have a limited amount of time left on this Earth and I will try to make the most of it. And not be too terrified.”

Most of all, she has realised that palliative nursing care is “a reciprocal relationship with patients and families”. She hopes “to find real balance in that, to learn from them as they learn from me. If I’ve learned nothing else, we can’t live a full and meaningful life without deep relationships. And that’s what I’m hoping for.”

Complete Article HERE!

The hardest word

— Study finds doctors, families avoid saying ‘death’

By Paul John Scott

A new study has found that conversations between families and physicians who treat critically ill infants avoided direct language in 92% of all references to death and dying, but that the two parties did so through different linguistic evasions.

The study, conducted by Duke University researchers between September 2018 and 2020, analyzed 68 recorded conversations between physicians and 24 participating families of infants hospitalized for neurologic conditions in an intensive care unit.

It was published in the journal JAMA Network Open.

“This study was really inspired by a recognition that it can be hard to talk clearly and directly about challenging, high-stakes topics,” said Dr. Monica Lemmon, an associate professor of pediatrics and population health sciences at Duke and lead author of the paper. “We aimed primarily to characterize the way death is discussed.”

While it is commonplace to use softer language for death and dying in day-to-day conversations, in order to minimize confusion, consensus guidelines within medicine the paper noted “emphasize the importance of clear communication, including avoiding euphemism use.”

In the new study, researchers found 33 out of 68, or 45% of all family meetings, involved a discussion of death. There were 406 recorded references to death within those meetings — 275 made by clinicians, and 131 made by family members. Of those, the words “die,” “death,” “dying” and “stillborn” were used just 15% of the time by family members, and 5% of the time by physicians.

“What was most striking was the direct use of the words themselves … were used quite rarely,” Lemmon said. She said that “families often used colloquialisms or common phrases to reference death,” while “clinicians instead most often used medical jargon, which may be less clear to people who aren’t medically trained.”

Physicians used medical jargon 43% of the time when discussing death during the study, which included as examples terms for death such as “event,” “code,” “episode,” “arrest,” or “irretrievable drop” in heart rate.

Families preferred colloquialisms 34% of the time, the paper found. These included phrases such as “pass away,” and “not make it.” The paper identified two other forms of euphemisms: expressions referring to survival — like “don’t live,” or “not survive” — and the use of pronouns in place of death, such as “it,” “this,” “that” or “something.”

In an accompanying commentary, a trio of pediatricians from the University of Minnesota Medical School placed the findings within a larger problem described as “jargon oblivion” in medicine. For lead author Dr. Michael Pitt, the new study provides physicians with a framework to better understand what that looks like in practice.

“I think what this study adds is actual proof to what we expected,” he said. “Which is that we tend to avoid these difficult words — death, dying — at the bedside during important conversations with families. They elegantly quantified that in a study where they recorded and transcribed these transcripts, and showed that providers rarely used these terms.”

The harm, Pitt says, is that families may need to hear the word death to understand that death is what is being discussed.

“They hear ‘we did everything we could’ (and) they might want to reply, ‘OK, get somebody else to do something, then.'”

Pitt recalls that when his father recently died, “the nurse called my mom and said, ‘He’s no longer with us,'” he said.

“She initially thought that meant that he’d been transferred, or gotten lost … you’re having the most serious conversation of a family’s life, yet they may not understand what you’re saying unless you use clearer language.”

Dr. Brenda Schiltz is a pediatric critical care specialist at Mayo Clinic who has had numerous conversations with families in which she was required to discuss the actual or possible death of a child. “I think it’s a good paper,” she says of the Duke study.

“It wasn’t surprising at all, to be honest,” she adds. “We teach trainees all the time about when we’re breaking bad news … to be very concrete, to use the word ‘death.’ But even when do all those teachings, it’s a hard thing to tell somebody. It’s a very hard thing to tell somebody.”

Schiltz says that while clear communication about death is critical, it often is a shift in thinking for physicians.

“Not only is it hard,” she said, “as a physician and everybody that’s on the medical team, we’re trying to save these babies. No one wants to feel as if we lost that battle. We’re always fighting. We’re always trying to keep hope alive, and try one more thing … It’s tough to admit when, despite our best efforts, we can’t save somebody.”

The study did not look at whether the families studied preferred direct language about death, Lemmon notes, or whether the euphemisms identified produced any confusion in the conversations.

“Some euphemisms might be quite clear to all the parties involved,” she said. “Especially when they’re used by a family member and mutually understood by the clinical team. That said, it’s important there’s a shared understanding of what we’re all talking about, and for this particular study, the outcome of death is something critically important for everyone to be on the same page around.”

Complete Article HERE!

When a patient wants you to help them die

By Kristen Fuller, MD

We are dedicated to helping our patients, but there are limits to what we can do to help.

A clinic patient of mine was dying of pancreatic cancer. He was as orange as a pumpkin and had an implantable morphine pump for pain. He was in palliative care and hospice, and regardless of medications to help alleviate his symptoms, he was miserable.

His suffering was unbearable. He wanted nothing more than to pass away sooner, in peace, and no longer be in pain.

“‘This is not living,’ he told me. ‘I am just waiting to die.’”
— Kristen Fuller, MD

He voluntarily stopped eating and drinking, refused a feeding tube, and eventually developed severe psychosis. I consulted with his medical team members about offering him “death with dignity,” but they were uncomfortable with this.

He passed away on day 12 by starving himself. His loved ones were beyond scarred by this experience.

The COVID-19 pandemic has exposed the profound tragedy of people dying alone in hospitals, suffering and scared, without the comfort of their loved ones. The pandemic demonstrated modern medicine’s limits in relieving suffering and granting someone peace.

How can we best serve our patients in such situations?

Ways to help patients at the end

Medical aid in dying—also known as death with dignity—is the voluntary act (for both physician and patient) to help end the suffering of a mentally competent adult patient who is terminally ill with less than a 6-month life expectancy (hospice-eligible). The patient has the right to ask for a prescription medication they can self-ingest to die peacefully.

Individuals who want this end-of-life care option tend to be offended when it’s called “assisted suicide,” because they desperately want to live, but are going to die whether or not they utilize this avenue.

The Journal of Palliative Medicine published peer-reviewed clinical criteria for “physician aid in dying”—not assisted suicide.[1] The term “physician-assisted suicide” is archaic and stigmatizing to physicians and patients who have experienced death with dignity.[2]

In the US, death with dignity or medical aid in dying are explicitly distinguished from euthanasia.

Euthanasia, also called mercy killing, is administering a lethal medication by another human being to an incurably suffering patient.[3]

It may be voluntary (requested by the patient) or involuntary. Euthanasia is illegal in the US, but voluntary euthanasia is legal in Colombia, Belgium, Canada, and Luxembourg, and is decriminalized in the Netherlands.

History and guidelines

Medical aid in dying was first passed as legislation in Washington state in 2008, and has since become available for patients in Washington, DC, California, Colorado, Hawaii, Maine, Montana, New Jersey, Oregon, Vermont, and Washington.

Multiple safeguards are in place to prevent cases of abuse or coercion.

The patient must be deemed competent, two physicians must authorize the medication, and there’s also usually a 15-day waiting period between the first and second doctor’s approval before a medication is authorized.

Suppose the patient chooses to take the medication after authorization. They can ingest the pills at their chosen time, choosing the manner and location of their death—one last act of control in the face of a debilitating illness.

What does the AMA say?

The AMA adopted a neutral position on death with dignity in 2019, affirming for the first time that “physicians can provide medical aid in dying according to the dictates of their conscience without violating their professional obligations.”[4]

The Association stipulated that physicians who participate in medical aid in dying adhere to professional and ethical obligations, as do physicians who decline to participate.

Other well-known national medical associations that have taken a neutral stance on death with dignity by withdrawing their opposition to the practice include the American Academy of Family Physicians, the American Academy of Hospice and Palliative Medicine, and the American Academy of Neurology.

Empowering patients

According to the Oregon Health Authority, approximately one-third of patients who receive prescription medication to pursue death with dignity in Oregon do not take the medication.[5]

However, they are said to be relieved that they are in control at the end of their life, which helps alleviate some anxiety about potential suffering in their last days. Each patient should be empowered to make end-of-life care decisions based on their unique culture, beliefs, and spiritual values.

“The power should be in the patient’s hands.”
— Kristen Fuller, MD

Hopefully, we can be conduits to give our patients respect, autonomy, and privacy during their last days.

Complete Article HERE!

Race and ethnicity affect end-of-life care for dementia patients

— More than half of Medicare beneficiaries are diagnosed with dementia during their lifetime and, of those diagnosed who receive intensive end-of-life care, most are from racial and ethnic minority groups, according to a new study.

“While people with dementia received intensive services less often than people without dementia, those with dementia who did receive intensive services were more likely to be from racial or ethnic minoritized groups,” says Elizabeth Luth.

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Intensive treatment includes mechanical ventilation, intubation, feeding tube initiation, and new dialysis.

Researchers have known that race and ethnicity play a role in the intensity of medical care at the end of life, but the difference is more pronounced among individuals with dementia, they say.

“Dementia appears to have a multiplicative effect,” says Elizabeth Luth, an assistant professor in the family medicine and community health department at Rutgers University and lead author of the study published in the Journal of the American Geriatrics Society.

“This difference is not problematic if it reflects patient preferences for intensive services,” says Luth, who is also a faculty member at Rutgers’ Institute for Health, Health Care Policy & Aging Research. “However, additional research is needed to understand whether these differences may be attributable to other factors, including systemic racism, discrimination, poor physician communication, and other barriers to accessing health care.”

To measure the role of race and ethnicity in end-of-life care for people with dementia, Luth and colleagues calculated total medical costs for 463,590 Medicare beneficiaries nationwide. Using claims data, the researchers tallied inpatient, outpatient, carrier, skilled nursing facility, and hospice expenditures for patients’ final 30 days of life. Higher costs indicated greater care intensity.

In addition to determining 51% of Medicare patients die with a dementia diagnosis claim, the researchers made another discovery: Race and ethnicity may influence how people with dementia live out their final days.

“While people with dementia received intensive services less often than people without dementia, those with dementia who did receive intensive services were more likely to be from racial or ethnic minoritized groups,” Luth says.

The magnitude of this effect differed by dementia status. For example, among people without dementia, compared to non-Hispanic Whites, Asian American, and Pacific Islanders had 73% higher odds of intensive care at the end of life. However, among persons with a dementia diagnosis, Asian American and Pacific Islanders had 175% higher odds of receiving intensive procedures.

The findings should prompt efforts to improve end-of-life care and outcomes for people with dementia, Luth says. Medicare reimbursements for physician-led advance care planning conversations could help, she says, as would end-of-life care counseling for all hospitalized patients.

“In the absence of a designated decision maker, the default approach in end-of-life care is to provide intensive services,” Luth says.

“If there isn’t anybody advocating either way, whether it’s the family or the patient themselves, the default is always more hospitalization, which might not be the type of care the patient wants or needs.”

Complete Article HERE!

Shift in Child Hospice Care Is a Lifeline for Parents Seeking a Measure of Comfort and Hope


Hospice nurse Raul Diaz checks Aaron Martinez’s vital signs. Despite his mom’s seemingly healthy pregnancy, Aaron was born with most of his brain cells dead, the result of two strokes and a massive bleed that occurred in utero.

By Bernard J. Wolfson

When you first meet 17-month-old Aaron Martinez, it’s not obvious that something is catastrophically wrong.

What you see is a beautiful little boy with smooth, lustrous skin, an abundance of glossy brown hair, and a disarming smile. What you hear are coos and cries that don’t immediately signal anything is horribly awry.

But his parents, Adriana Pinedo and Hector Martinez, know the truth painfully well.

Although Adriana’s doctors and midwife had described the pregnancy as “perfect” for all nine months, Aaron was born with most of his brain cells dead, the result of two strokes and a massive bleed he sustained while in utero.

Doctors aren’t sure what caused the anomalies that left Aaron with virtually no cognitive function or physical mobility. His voluminous hair hides a head whose circumference is too small for his age. He has epilepsy that triggers multiple seizures each day, and his smile is not always what it seems. “It could be a smile; it could be a seizure,” his mother said.

Shortly after Aaron was born, doctors told Adriana, 34, and Hector, 35, there was no hope and they should “let nature take its course.” They would learn months later that the doctors had not expected the boy to live more than five days. It was on Day 5 that his parents put him in home hospice care, an arrangement that has continued into his second year of life.

The family gets weekly visits from hospice nurses, therapists, social workers, and a chaplain in the cramped one-bedroom apartment they rent from the people who live in the main house on the same lot on a quiet residential street in this Inland Empire city.

A photo shows two nurses attending to 17-month-old Aaron Martinez while his mother, Adriana Pinedo, holds him.
Adriana Pinedo holds her son, Aaron Martinez, during a visit with hospice nurses Raul Diaz (left) and Shannon Stiles. Pinedo describes the weekly hospice visits from nurses, therapists, social workers, and a chaplain as “our lifeline.”

One of the main criteria for hospice care, established by Medicare largely for seniors but also applied to children, is a diagnosis of six months or less to live. Yet over the course of 17 months, Aaron’s medical team has repeatedly recertified his hospice eligibility.

Under a provision of the 2010 Affordable Care Act, children enrolled in Medicaid or the Children’s Health Insurance Program are allowed, unlike adults, to be in hospice while continuing to receive curative or life-extending care. Commercial insurers are not required to cover this “concurrent care,” but many now do.

More than a decade since its inception, concurrent care is widely credited with improving the quality of life for many terminally ill children, easing stress on the family and, in some cases, sustaining hope for a cure. But the arrangement can contribute to a painful dilemma for parents like Adriana and Hector, who are torn between their fierce commitment to their son and the futility of knowing that his condition leaves him with no future worth hoping for.

“We could lose a life, but if he continues to live this way, we’ll lose three,” said Adriana. “There’s no quality of life for him or for us.”

Aaron’s doctors now say he could conceivably live for years. His body hasn’t stopped growing since he was born. He’s in the 96th percentile for height for his age, and his weight is about average.

His parents have talked about “graduating” him from hospice. But he is never stable for long, and they welcome the visits from their hospice team. The seizures, sometimes 30 a day, are a persistent assault on his brain and, as he grows, the medications intended to control them must be changed or the doses recalibrated. He is at continual risk of gastrointestinal problems and potentially deadly fluid buildup in his lungs.

Adriana, who works from home for a nonprofit public health organization, spends much of her time with Aaron, while Hector works as a landscaper. She has chosen to live in the moment, she said, because otherwise her mind wanders to a future in which either “he could die — or he won’t, and I’ll end up changing the diapers of a 40-year-old man.” Either of those, she said, “are going to suck.”

While cancer is one of the major illnesses afflicting children in hospice, many others, like Aaron, have rare congenital defects, severe neurological impairments, or uncommon metabolic deficiencies. 

“We have diseases that families tell us are one of 10 cases in the world,” said Dr. Glen Komatsu, medical director of Torrance-based TrinityKids Care, which provides home hospice services to Aaron and more than 70 other kids in Los Angeles and Orange counties.

A photo shows Aaron Martinez sleeping in a crib.
Aaron Martinez sleeps in the bedroom he shares with his mother and father in Pomona, California.

In the years leading up to the ACA’s implementation, pediatric health advocates lobbied hard for the concurrent care provision. Without the possibility of life-extending care or hope for a cure, many parents refused to put their terminally ill kids in hospice, thinking it was tantamount to giving up on them. That meant the whole family missed out on the support hospice can provide, not just pain relief and comfort for the dying child, but emotional and spiritual care for parents and siblings under extreme duress.

TrinityKids Care, run by the large national Catholic health system Providence, doesn’t just send nurses, social workers, and chaplains into homes. For patients able to participate, and their siblings, it also offers art and science projects, exercise classes, movies, and music. During the pandemic, these activities have been conducted via Zoom, and volunteers deliver needed supplies to the children’s homes.

The ability to get treatments that prolong their lives is a major reason children in concurrent care are more likely than adults to outlive the six-months-to-live diagnosis required for hospice.

“Concurrent care, by its very intention, very clearly is going to extend their lives, and by extending their lives they’re no longer going to be hospice-eligible if you use the six-month life expectancy criteria,” said Dr. David Steinhorn, a pediatric intensive care physician in Virginia, who has helped develop numerous children’s hospice programs across the U.S.

Another factor is that kids, even sick ones, are simply more robust than many older people.

“Sick kids are often otherwise healthy, except for one organ,” said Dr. Debra Lotstein, chief of the division of comfort and palliative care at Children’s Hospital Los Angeles. “They may have cancer in their body, but their hearts are good and their lungs are good, compared to a 90-year-old who at baseline is just not as resilient.”

All of Aaron Martinez’s vital organs, except for his brain, seem to be working. “There have been times when we’ve brought him in, and the nurse looks at the chart and looks at him, and she can’t believe it’s that child,” said his father, Hector.

A photo shows a nurse giving 17-month-old Aaron Martinez medicine via an oral syringe.
Hospice nurse Shannon Stiles gently administers Aaron Martinez an oral medication. Many hospice organizations are reluctant to take children, whose medical and emotional needs are often intense and complex.

When kids live past the six-month life expectancy, they must be recertified to stay in hospice. In many cases, Steinhorn said, he is willing to recertify his pediatric patients indefinitely.

Even with doctors advocating for them, it’s not always easy for children to get into hospice care. Most hospices care primarily for adults and are reluctant to take kids.

“The hospice will say, ‘We don’t have the capacity to treat children. Our nurses aren’t trained. It’s different. We just can’t do it,’” said Lori Butterworth, co-founder of the Children’s Hospice and Palliative Care Coalition of California in Watsonville. “The other reason is not wanting to, because it’s existentially devastating and sad and hard.”

Finances also play a role. Home hospice care is paid at a per diem rate set by Medicare — slightly over $200 a day for the first two months, about $161 a day after that — and it is typically the same for kids and adults. Children, particularly those with rare conditions, often require more intensive and innovative care, so the per diem doesn’t stretch as far.

The concurrent care provision has made taking pediatric patients more viable for hospice organizations, Steinhorn and others said. Under the ACA, many of the expenses for certain medications and medical services can be shifted to the patient’s primary insurance, leaving hospices responsible for pain relief and comfort care.

Even so, the relatively small number of kids who die each year from protracted ailments hardly makes pediatric hospice an appealing line of business in an industry craving growth, especially one in which private equity investors are active and seeking a big payday.

In California, only 21 of 1,336 hospices reported having a specialized pediatric hospice program, and 59 said they served at least one patient under age 21, according to an analysis of 2020 state data by Cordt Kassner, CEO of Hospice Analytics in Colorado Springs, Colorado.

Hospice providers that do cater to children often face a more basic challenge: Even with the possibility of concurrent care, many parents still equate hospice with acceptance of death. That was the case initially for Matt and Reese Sonnen, Los Angeles residents whose daughter, Layla, was born with a seizure disorder that had no name: Her brain had simply failed to develop in the womb, and an MRI showed “fluid taking up space where the brain wasn’t,” her mother said.

When Layla’s team first mentioned hospice, “I was in the car on my phone, and I almost crashed the car,” Reese recalled. “The first thought that came to mind was, ‘It is just the end,’ but we felt she was nowhere near it, because she was strong, she was mighty. She was my little girl. She was going to get through this.”

About three months later, as Layla’s nervous system deteriorated, causing her to writhe in pain, her parents agreed to enroll her in hospice with TrinityKids Care. She died weeks later, not long after her 2nd birthday. She was in her mother’s arms, with Matt close by.

“All of a sudden, Layla breathed out a big rush of air. The nurse looked at me and said, ‘That was her last breath.’ I was literally breathing in her last breath,” Reese recounted. “I never wanted to breathe again, because now I felt I had her in my lungs. Don’t make me laugh, don’t make me exhale.”

Layla’s parents have no regrets about their decision to put her in hospice. “It was the absolute right decision, and in hindsight we should have done it sooner,” Matt said. “She was suffering, and we had blinders on.”

A photo shows Adriana Pinedo sitting at home and feeding her son, Aaron, with a bottle.
Adriana Pinedo spends much of her day alone with her son. She has chosen to live in the moment, she says, because otherwise her mind wanders to a future in which either “he could die — or he won’t, and I’ll end up changing the diapers of a 40-year-old man.”

Adriana Pinedo said she is “infinitely grateful” for hospice, despite the heartache of Aaron’s condition. Sometimes the social worker will stop by, she said, just to say hello and drop off a latte, a small gesture that can feel very uplifting. “They’ve been our lifeline,” she said.

Adriana talks about a friend of hers with a healthy baby, also named Aaron, who is pregnant with her second child. “All the stuff that was on our list, they’re living. And I love them dearly,” Adriana said. “But it’s almost hard to look, because it’s like looking at the stuff that you didn’t get. It’s like Christmas Day, staring through the window at the neighbor’s house, and you’re sitting there in the cold.”

Yet she seems palpably torn between that bleak remorse and the unconditional love parents feel toward their children. At one point, Adriana interrupted herself midsentence and turned to her son, who was in Hector’s arms: “Yes, Papi, you are so stinking cute, and you are still my dream come true.”

Complete Article HERE!

‘So many people are terrified of death.’

Death doulas provide end-of-life support.

Need emotional or spiritual support at the end of life? Hire a death doula.

By Jessica Hall

When Diane Button’s grandfather died at 85, he had a smile on his face and a sense of peace that made her want to learn his secret.

Being with him in the final hours of his death after watching his life caring for others as a doctor inspired Button to get a master’s degree in counseling and start volunteering with hospice programs. She then trained as a ‘death doula,’ wrote books about living well, and now teaches at the end-of-life doula professional certificate program at the Larner College of Medicine at the University of Vermont.

“It wasn’t so much to learn about dying as it was to learn about living well and ultimately dying well,” Button said.

Button is part of a growing number of so-called ‘death doulas’ who provide nonmedical care and support for people who are dying. Similar to the dynamic between a midwife and a birth doula, a physician or hospice caregiver would provide medical care at the end of life, while a death doula provides emotional and spiritual support and help to the patient and the family and friends.

There’s currently no licensing, no industry standards and no insurance reimbursement for death doula services. Doulas can be volunteers or get paid out of pocket.

Without licensing requirements, it’s difficult to track the number of people providing end-of-life support doula services. But since its inception in 2017, the National End-of-Life Doula Alliance has grown to 1,350 members in 49 states (all except South Dakota) and 13 countries.

Karen Reppen, an end-of-life doula and a member of the board of the National End-of-Life Doula Alliance, attributes the growth in awareness and numbers of doulas, in part, to COVID, when people often died alone, as well as the growth of the hospice movement and the sheer numbers of people closer to dying as baby boomers age.

“More people are willing to explore options beyond the hospital and what the medical system can provide,” Reppen said. “We no longer have multigenerational homes, communities may not be as tight knit as they once were, everyone is working – caregiving is a huge, huge challenge. Nonmedical support is needed to survive death with some grace.”

“There’s incredible need for support when you’re a caregiver and your loved one is dying. Whether it’s to simply walk the dog, go grocery shopping, get a few minutes to yourself, get help in navigating the medical information – there’s so many reasons to have some support,” Reppen said.

“Caregivers are very strained. The need for compassionate, skilled people to hold that space in our progressively isolating society is so valuable,” Reppen said. “So many people are traumatized and terrified of death. Even people with family and friends surrounding them may need help. Really, there is no other thing that we’re all guaranteed to share than the fact that we’re going to die.”

Robert Gramling, a palliative care physician and a core faculty partner for the University of Vermont doula program, agreed that the pandemic created an opportunity to talk about death in a way society hadn’t before.

“It can be terrifying to be sick. The COVID pandemic brought into sharp relief that death is part of life. The tragedy of social distancing has sharpened our focus on the space of being alone and isolated. It catapulted us into a public health crisis of loneliness and isolation. Our world is thirsty for this,” said Gramling.

The program at University of Vermont, which is online, is just one certificate program offered around the country. It attracts people from all stages of life, from diverse backgrounds – social workers, chaplains, hospice workers, family caregivers – all with the central desire to learn about death and dying.

“There will be a tipping point where it becomes more accepted. I think with the pandemic the world is valuing more this idea of ‘I want to be known. I want to be dignified and accepted,’” Gramling said. “We’re bubbling toward a tipping point that talking about death becomes part of life. Our world is becoming more open.”

“The doulas’ role is to fill the gaps any time people are feeling lonely or not heard. Anywhere along the course of a serious illness doulas can provide space with nonjudgment,” Gramling said.

Doulas can help younger, healthy people with advance directives, sit vigils for the dying or create legacy projects of stories to pass down to other generations.

Button said more doctors are referring patients to end-of-life doulas once medical needs can’t be met anymore.

“The time has come for doulas to emerge. The pandemic opened up the conversation about death and dying. So many people were impacted by it. The pandemic opened the door a crack and gave them a glimpse of mortality,” Button said.

“It’s an honor to be invited to the bedside of the dying,” Button said. “It’s emotional. It’s deep work of the heart.”

Complete Article HERE!