Why Dying People Often Experience a Burst of Lucidity

— New research shows surprising activity levels in dying brains and may help explain the sudden clarity many people with dementia experience near death

By Jordan Kinard 

Long the fixation of religions, philosophy and literature the world over, the conscious experience of dying has recently received increasingly significant attention from science. This comes as medical advances extend the ability to keep the body alive, steadily prying open a window into the ultimate locked room: the last living moments of a human mind.

“Around 1959 humans discovered a method to restart the heart in people who would have died, and we called this CPR,” says Sam Parnia, a critical care physician at NYU Langone Health.  Parnia has studied people’s recollections after being revived from cardiac arrest—phenomena that he refers to as “recalled experiences surrounding death.” Before CPR techniques were developed, cardiac arrest was basically synonymous with death. But now doctors can revive some people up to 20 minutes or more after their heart has stopped beating. Furthermore, Parnia says, many brain cells remain somewhat intact for hours to days postmortem—challenging our notions of a rigid boundary between life and death.

Advancements in medical technology and neuroscience, as well as shifts in researchers’ perspectives, are revolutionizing our understanding of the dying process. Research over the past decade has demonstrated a surge in brain activity in human and animal subjects undergoing cardiac arrest. Meanwhile large surveys are documenting the seemingly inexplicable periods of lucidity that hospice workers and grieving families often report witnessing in people with dementia who are dying. Poet Dylan Thomas famously admonished his readers, “Do not go gentle into that good night. Rage, rage against the dying of the light.” But as more resources are devoted to the study of death, it is becoming increasingly clear that dying is not the simple dimming of one’s internal light of awareness but rather an incredibly active process in the brain.

What is terminal lucidity?

For decades, researchers, hospice caregivers and stunned family members have watched with awe as people with Alzheimer’s or other forms of dementia suddenly regain their memories and personalities just before death. To their family members it might seem like a second lease on life, but for many experienced medical workers, it can be a sign the end is near. Christopher Kerr, chief executive officer and chief medical officer at the Center for Hospice and Palliative Care in Buffalo, N.Y., has studied the lucid visions of several hundred terminally ill people. He says these events “usually occur in the last few days of life.” Such “terminal lucidity” is defined as the unexpected return of cognitive faculties such as speech and “connectedness” with other people, according to George Mason University’s Andrew Peterson, a researcher of bioethics and consciousness who co-authored a study of the phenomenon commissioned by the National Institutes of Health.

This connectedness goes beyond the return of lost communication ability and situational awareness. “One thing that seems to be quite profound for family members who observe lucidity is something we call the ‘old self’ emerging,” Peterson says. “There seems to be clear evidence that they’re aware not merely of their surroundings … but additionally understanding what their relationships to other people are”—be it the use of a nickname or a reference to a longstanding inside joke.

As surprising as these events might seem, they are quite common. “Our study wasn’t a prevalence study,” says Jason Karlawish, a gerontologist at the Penn Memory Center and senior principal investigator of the NIH study. Nevertheless, he adds, “what we found is lucidity was more common than it was the exception in dementia patients, which would suggest that the idea of it being terminal is not entirely correct.” Instead he suggests that episodes of lucidity should be seen as part of the “disease experience” rather than as aberrant events. “We’ve actually found that a variety of these episodes occurred months, even years, before the person died,” Karlawish notes. Even so, many experts including Kerr and Parnia agree that most of these episodes are associated with the approach of death. “It’s almost like they’re preparing themselves to die,” Parnia says.

The potential implications of these widespread, temporary cognitive resurgences are profound. “It suggests there may be neural networks that are remaining, and/or pathways and neural function, that could help potentially restore cognitive abilities to individuals we otherwise think are permanently impaired,” Peterson says.

Nevertheless, research into this phenomenon is still in its early phases. “We don’t actually know what’s going on in the brain during the dying process that may in some way connect to these episodes,” Peterson says. Despite this uncertainty, other research into brain activity near or at the time of death could provide scientists and clinicians greater insight into some of the processes occurring in the diseased and dying brain.

What happens in the brain as people die?

In a study published in Proceedings of the National Academy of Sciences USA in May, researchers at the University of Michigan observed a surge of organized brain activity in two out of four comatose people who were undergoing cardiac arrest after being removed from life support. This work built on more than a decade of animal research, including a 2013 PNAS study that revealed a similar surge in synchronized brain activity in rats exposed to a cardiac toxin and a 2015 study in which rats were killed by asphyxiation. In all of these investigations, the researchers found that gamma-wave activity surged within the first few minutes of cardiac arrest and then ceased. Gamma waves are a frequency of brain wave typically associated with wakefulness, alertness and memory recall.

Jimo Borjigin, a neurologist and an associate professor of molecular and integrative physiology at the University of Michigan, was involved in all three studies. The surge of gamma waves in dying subjects was particularly intense in a brain region Borjigin refers to as the “posterior cortical ‘hot zone,’” located near the back of the skull. Some other researchers believe this region may also be essential to conscious experience. The parts of the brain in this area are related to visual, auditory and motion perception—a phenomenon Borjigin believes is involved in the out-of-body experiences reported by people who come close to death and recover. She adds that gamma-wave activation patterns akin to those observed in the comatose people are associated with activities that include the recognition of a familiar image—such as a human face—in healthy people.

In both the human and animal studies, the subjects’ brain showed a spike in activity after the sudden reduction of oxygen supply, Borjigin says. “It starts to activate this homeostatic mechanism to get oxygen back, either by breathing harder or making your heart beat faster,” she adds. Borjigin hypothesizes that much of the surge in more complex brain activity observed in humans and animals undergoing cardiac arrest is also a result of the brain attempting to reestablish homeostasis, or biological equilibrium, after detecting a lack of oxygen. She further speculates that these survival mechanisms may be involved in other changes in cognition surrounding death. “I believe dementia patients’ terminal lucidity may be due to these kinds of last-ditch efforts of the brain” to preserve itself as physiological systems fail, Borjigin says.

NYU Langone’s Parnia agrees that the brain’s reaction to the loss of oxygen is at least partially responsible for lucid experiences surrounding death. Between 2017 and 2020 Parnia led a study called AWARE II, in which researchers monitored the brain activity of more than 500 critically ill people in the U.S. and U.K. who were receiving CPR. The patients were exposed to audiovisual stimuli while undergoing CPR to test their memory of events after cardiac arrest. Those who survived were later interviewed about how aware they were during the resuscitation process. According to Parnia, one in five survivors reported lucid experiences that occurred after their heart stopped. The AWARE II team also observed an unexpected spike in brain activity during CPR, he says. “Within 20 seconds of cardiac arrest, the brain flatlines,” Parnia says. Yet “usually within five minutes—but it could be longer—we’re seeing a reemergence of a transient period of brain electricity.” He adds that the frequencies of brain activity observed are similar to those associated with conscious experience.

Parnia believes the dying brain loses the usual suppression mechanisms that allow us to focus on individual tasks during our day-to-day lives. “When you die, your brain is deprived of oxygen and nutrients, so it shuts down,” Parnia says. “This shutting down process takes away the brakes…, and suddenly what seems to be happening is: it gives you access to parts of your brain that you normally can’t access…. All your thoughts or your memories or your interactions with everyone else come out.” But he stresses that the experiences of people undergoing cardiac arrest are lucid, not merely hallucinations. “They’re not delusional,” Parnia says of the resuscitated people he studied, and what they’re experiencing is “not dreams or hallucinations.” Although his previous studies focused on resuscitated critically ill people, Parnia believes that terminal lucidity in people who are comatose or have dementia may be the product of a similar process. He is currently participating in a study on the latter phenomenon.

A full explanation for the conscious experiences of dying people remains elusive. But research increasingly paints a picture of death as an incredibly active and complex process—and, perhaps more importantly, “a humanized one,” as Kerr describes it. As for people with dementia, Karlawish says that rather than assuming their consciousness has been irrevocably changed, “we should still pay close attention to their mind because some aspects are still there, though they may be quite damaged.”

Complete Article HERE!

What is a death rattle?

— What to expect when expecting the end of life

By Julie Power

What is a good death? What is a death rattle?

No question is off limits for palliative care nurse specialist Rachael Zielinski, who tells families and relatives that death and dying are not something to whisper about.

To make her point, she raises her voice. “As a community we need to reclaim the experience of death and dying. It is OK to talk about it,” she tells a workshop called Last Days attended by 20 people in Sydney’s south.

A palliative care nurse with 20 years of experience, Zielinski also wants to bring back the D words: death, dying and dead. Euphemisms like “passing” or “gone” can be confusing, she said, recounting the confusion of a woman who didn’t realise her death was imminent.

About 160,000 people die in Australia each year. Zielinski has seen hundreds die.

Every Christmas Day she remembers the first death she saw: Mrs Merriweather’s nearly 40 years ago.

Then only 18 and living in Sandgate, England, Zielinski sat with the older woman in her final moments and then kept vigil next to the woman’s body.

Last Days was developed by aged and community care provider HammondCare to demystify death and help people navigate death and dying. More sessions across Sydney have been funded by NSW Government’s Sydney North Health Network.

HammondCare’s Dr Andrew Montague said carers, family members and friends were often unprepared for what may be confronting at end of life.

“There is a need to help those who care for people at end of life to equip them to navigate their journey,” said Montague, the general manager health and hospitals. “It will also seek to encourage more openness in making and documenting end-of-life choices.”

According to a survey of 1000 Australians last year by Palliative Care Australia, 88 per cent of respondents agreed it was important to start thinking and talking about their wishes and preferences for care (if they were to become seriously or terminally ill). Despite that, only 56 per cent of those surveyed had talked about or recorded their end-of-life wishes.

Katrina Pearson was at the session to discuss how to manage the palliative care of her mother Robyn, now 72, who was diagnosed with a degenerative disease 11 years ago.

Pearson spoke with her mother about her wishes – before she agreed to go into an aged care facility when she could no longer walk. “It is important to talk about it, and it was good that we talked when she was able to do so.”

Research from Western Australia’s palliative care experts found many people thought palliative care was for the last days of life, thinking their doctor or specialist had given up. Yet research from the United Kingdom found people who receive palliative care earlier live longer and have a better quality of life.

Zielinski said: “We love early referrals. When we get people who are in the terminal phase, we get upset. We could have done so much more.”

Palliative care’s practical aspects include writing a will, delegating someone to make decisions about care, managing symptoms and pain, and identifying what is important in the final days and where and how someone wants to live and die.

Often the wishes of the dying are far from grandiose, such as a desire to eat at a local restaurant once more, look out on a garden, have grandchildren visit or have their dog on the bed.

“Many want to stay at home, in their same bed, but may change their opinion,” Zielinski said. “Dying in a hospital is not a failure.”

But dying at home takes a village.

Zielinski hopes the Last Day’s three-hour workshop and workbook will provide a place to ask questions and challenge preconceptions that caring for someone at the end of their life is something technical, private and hidden.

“Death and dying are the last taboo. We are all going to die, and many of us will care for someone who is dying.”

Death was a process like birth, with recognisable stages and progression, said Zielinski. Unlike birth, though, there are few workshops for families, and no books on “what to expect when you are expecting [to die]” or film adaptations.

The person dying usually sleeps more and eats and drinks little or nothing, which can upset families used to making food to demonstrate love and affection.

“Someone in their last days may only want a tiny spoonful of yoghurt,” she said.

The dying person may attempt to eat to show their love, too.

She recalled a woman who made her husband a grazing plate of a tiny piece of “posh chocolate”, a minuscule bit of sandwich, and fruit.

“He took a little nibble from the sandwich and put it back,” Zielinski said.

That upset his wife.

“I said [to her], ‘That is just the most beautiful thing I’ve seen. It’s a pure gift of love. Look at that, he actually doesn’t need or want it.’ So it’s about education. It’s about understanding those changes.”

Families frequently find “the death rattle” – experts call them terminal secretions – distressing because they think the person dying may be in pain or anguished.

“It is like a snore, which you are not aware you are doing,” she said.

It is caused by uncleared mucus at the back of a throat, she told the workshop. “That gurgly sound you hear, well, that person is so deeply unconscious, they’re not aware that that saliva is sitting there – that they are not trying to cough or swallow to get rid of it. But the sound will distress you. So remember that Rachael said this might happen. It’s not distressing Mum or whomever that is.”

Many deaths are gentle but a few are traumatic. In those cases it is often the words of a carer or a family member, even a prayer or a kind word, that make more of a difference than any medicine.

That was the case with a deeply religious woman who couldn’t be calmed until a pastoral care worker kneeled with her and prayed. She died soon after.

“I have never seen anything like that,” said Zielinski. “We [health professionals] can’t do what [family and friends] can do. We are empowering people to think they have a place.”

A pilot of the program over the past two years found 73.9 per cent of participants strongly agreed that they know more about how to support a person in their last months, weeks and days of life, while nearly 70 per cent understood what to do to relieve physical symptoms.

Complete Article HERE!

Most People Feel This First Before They “Die of Old Age,”

— Including Losing Senses

by

Death is something we will all face. Nobody knows when our time is up, but it’s estimated that 56 million people die each year.  The average lifespan for men in the United States is 74.5 and for women it’s 80.2,  according to World Data, and before we pass chances are we’ll experience the death of a loved one, friend or colleague.

Even if you have a warning that your loved one is dying, it’s not something you can really prepare for. Grief is a terrible thing to go through, but knowing the final stages of life can be helpful. “There are stages to death, and when they are recognized and accepted, it opens the door for peace and grace,” Niki Yarnot, MSW, LASW, a career and life coach who previously worked for 10 years as both an inpatient and outpatient hospice social worker, tells us.

Each person’s journey is unique and different. Some people will have a steady decline, while others will transition quickly. That said, there are often signs that the end is near. “Healthcare workers approaching the conversation around the end of life is SO important.  Michelle Saari MSc, RD emphasizes. “Nutrition is one of the key indicators we see that the end of life may be coming.  We see a lot of unintentional weight loss, decreased appetite, loss of independence in eating their meals, difficulty swallowing.  As Clinical Dietitians, we tend to see the end coming six months out.  It is so important that we are trained to talk about the end of life early, so that loved ones can not only prepare themselves, but also so they aren’t surprised when the time is coming.

Tomi Mitchell, a Board-Certified Family Physician with Holistic Wellness Strategies tells us, “Death by old age is an intriguing concept, but it is rarely as simple as people assume it to be. Contrary to popular belief, death due to old age is not actually caused by the body physically wearing out or breaking down. Instead, it is usually a combination of diseases and other illnesses that accumulate over time resulting in organ failure and ultimately death. As people get older, their bodies become weaker which makes them more susceptible to physical ailments like heart disease and stroke; these are two of the most common causes of death among those of advanced age. Other risks that older individuals face include cancer, dementia, diabetes, and respiratory issues – all of which can contribute to an older person’s demise within a matter of years or even months.  Various lifestyle choices such as poor diet, lack of exercise, smoking, excessive drinking, drug abuse, and stress can also have wide-reaching implications when combined with age-related factors. In short, death due to old age is not necessarily caused by one specific factor – instead, it is often the result of multiple issues connected with aging or unhealthy living.”

Erin Blakely, LNHA and MSW adds, “Technically, no one dies of old age. As we get older our bodies naturally start to decline in physical capacity as well as energy levels. This is due to the aging process, which is an incredibly complex set of biological changes that occur slowly over time. As you age, your cells start to break down and become less efficient, leading to weakened muscles, slower reaction times and overall decreased physical or mental performance. Your immune system also takes a hit as you get older. Older people tend to be more susceptible to illnesses such as colds and flu due to their weakened immune systems. Your body’s ability to fight off infection decreases over time as well, which can lead to other health complications such as cancer or heart disease.

When it comes to death from old age, there are several potential causes. The most common cause is cardiovascular disease, which refers to any condition that affects the heart or blood vessels (e.g., high blood pressure or coronary artery disease). Other common causes include stroke and various forms of cancer. Additionally, some people may die from complications related to chronic illnesses such as diabetes or dementia. Another factor contributing towards death from old age is simply the gradual deterioration of bodily systems over time.  This can be accelerated by lifestyle factors such as poor diet or lack of exercise.  But ultimately even healthy individuals cannot escape the effects of aging on the body forever, your physical capabilities will fail you and cause your eventual demise.”

Nancy Mitchell, a Registered Nurse with Assisted Living Center states, “Dying of old age isn’t a mysterious phenomenon like some people make it sound. Death always comes with a cause, whether it was detected earlier, treated without success, or neglected over the years. There’s always some condition or illness behind death, even when people die in their sleep. The most common cause of “death in old age” are heart attacks, cancers, and strokes. In some cases, it’s an infection that the aging body struggles to fend off unsuccessfully.  That’s the point of conducting autopsies—to discover the true reason behind a passing. No one ever writes “died in peace” on a death certificate. There must be an underlying medical cause.”

Dr. Mitchell says, “The end of life is something that we all must face someday, and while there are no hard and fast rules as to how it should unfold, some believe there may be stages in the process. Depending on the culture or Life Story approach, these stages may include letting go physically and emotionally, preparing practical matters such as finances, addressing unfinished business such as relationships, reaching a deeper level of consciousness, accepting reality and death, preparing for a spiritual journey, or actively planning a “good” death. These concepts can often help those dealing with loss to make sense of their experiences as well as to honor their loved ones who have departed. Though no two stories will follow the same path, being mindful of life’s unique journeys can help us appreciate our connections beyond the physical realm.”

Yarnot explains, “There are stages to death, and when they are recognized and accepted, it opens the door for peace and grace. Someone may be “dying” over the course of days, weeks, even months. As the final days enter though, identifiable changes begin. People often experience visioning. Often they appear to be speaking to loved ones who have died before them. They may be standing next to the bed, or sitting in a nearby chair – but the dying individual sees and hears them clearly. It is important to note, this is not a hallucination. Hallucinations cause distress and fear. Visioning is generally peaceful and calming.. You might also notice the dying individual looking up and to the right corner of the room – again, a sign of visioning.”

According to Dr. Mitchell, “When someone enters the final stage of life, the first sense to begin deteriorating is usually smell. As the loss of this sense progresses, people may find themselves struggling to enjoy the foods and beverages they used to love. They can also lose the ability to detect unpleasant odors in their environment. As a result, it’s essential for caregivers of those in this stage to keep the living spaces clean of any unwanted or bad smells. Also, introducing pleasant fragrances like scented candles, flowers or aromatic oils can help bring comfort and a sense of familiarity to those approaching death. Ultimately, keeping their sense of smell intact is one way that we can honor and show our admiration for those in their last moments on earth.”

Blakely says, “For those with death imminent, you can usually recognize the signs of the physical changes occurring with their body.  For example, their breathing may become more labored and shallow. This is especially true if they are experiencing congestive heart failure or another illness that affects their ability to breathe. They may even take short pauses in between breaths—a sign that their body is slowing down and preparing for death. Another physical sign that someone is nearing death is a change in their skin color. As time passes, their skin color may turn pale or ashen gray due to reduced circulation from lack of movement or oxygen deprivation from difficulty breathing. In some cases, the skin may also have a yellowish hue due to jaundice, which is often caused by liver malfunction. A decrease in urine output can also be an indication that someone’s life is coming to an end. The kidneys are responsible for producing urine, but when the body begins shutting down, they will produce less and less until eventually they stop altogether. The color usually changes as well to darker colored urine.”

happy family on couch

Jennifer Prescott, RN, MSN, CDP, founder of Blue Water Homecare and Hospice in Austin, TX says, “An end of life rally, or “terminal lucidity” may occur with your loved one. We see individuals wake up, ask for a Big Mac and fries, attend an event or have a normal visit with a friend or family member. This sudden burst of energy can allow family members one last opportunity to show love, make peace and apologize if necessary.”

Dr. Mitchell states, “An end-of-life rally involves an important period of time that a dying person experiences—where they make a final effort to remain mentally and physically present. A rally may include physical comfort measures to make the individual more comfortable, as well as spiritual guidance or a chance to make peace with their past and/or future plans. A patient may also get to spend time with friends and family, discuss funeral arrangements, or even write letters or start projects that can be completed after their death. During this difficult time, it is important for loved ones to provide psychological and emotional support so the person can transition peacefully.”

Portrait of sad mature woman sitting on couch at home and looking away with worry and anxiety.

Dr. Mitchell says, “The final stage of dying is a time that marks the end of life. Signs that someone is about to die will depend on what illness they have but typically include difficulty breathing, changes in mental alertness, and physical weakness. In the days leading up to death, a person may become unresponsive and show signs of exhaustion. These feelings can be both disorienting and painful for family and loved ones who witness this process but being with someone during their dying moments can provide comfort and solace in addition to bringing closure to a life’s journey.”

Saari explains, “The final stage at end of life is a loss of consciousness and the body systems shutting down. We see the non-essential body systems start to slow down.  Food and fluid intake is quite small, increased sleep and fatigue, less interactions.  It’s a peaceful time and the goal is to make them as comfortable, pain free, and peaceful as possible.  As a health care practitioner, our goal is to make them have the most peaceful dying process possible and support their loved ones in the transition.”

Prescott shares, “Physically, the body begins its final process which ends when the body is unable to sustain life.  At this time the body is unable to maintain homeostasis and we see physical changes that are best managed with comfort enhancing measures through hospice care.  The physical changes experienced during the dying process include temperature changes (hot or cold), skin color changes called mottling that indicate the blood is failing to circulate appropriately, increased sleeping, changes in mental status, decreased oral intake, incontinence, decreased urine output and breathing pattern changes and congestion.  These physical changes are the body’s sign that it is slowing down and cannot maintain proper heart and lung function to maintain life.   It is important to note that these are all normal changes at end of life and some symptoms such as shortness of breath, cough and congestion can be helped with medications prescribed by the hospice physician or attending physician.

The second dynamic occurs on the emotional, spiritual, and mental side.  During this time a person begins to withdraw from their surroundings (including relationships) and conversations (and will eventually lose the ability to communicate).  The process is usually a slow decline in a person’s ability to speak, and we see increased sleeping.  Each person follows their own path; however, some want to have conversations to resolve any unfinished business in one’s life or a person will report hallucinations such as seeing people that have passed away previously in their room.  Some may experience restlessness. Many people need to hear that it is ok to “let go” or “die” in order to feel at peace.  Others may crave forgiveness, appreciation, and love to feel able to accept this time of transition.  It is helpful to reassure your loved one during these times and contact your hospice nurse to help if they are uncomfortable, or restless.  Sometimes restlessness is a lack of oxygen and there are oral medications such as Morphine, that can help in small doses to decrease a person’s sense of breathlessness and allow for better oxygenation.” 

Empathic young lady embracing soothing crying depressed elder mommy, sitting together at home

Saari shares, “I always speak with my patient’s loved ones and suggest that they simply focus on savoring their moments with their loved ones. Allow the healthcare workers to provide them with their physical needs, while the family simply focuses on every moment they can hold their hand. Many feel as though they aren’t doing enough, so they can provide mouth care, listen to their favorite music, talk to them about wonderful memories. Focus on treasuring those final moments and making peace with a final farewell.”

Dr. Mitchell says, “Those who are in the presence of a loved one who is close to death can find it emotionally challenging, so offering necessary and meaningful support is important. It involves being present, being aware of all the changes happening both physically and emotionally, allowing time for emotions to be expressed, and providing space and an opportunity to have meaningful conversations that cover topics from reminiscing about the past to discussing matters such as any unresolved issues or last wishes.

Furthermore, sitting and talking with those affected can provide comfort at a time when nothing else seems relevant. Ultimately, loving support can make a difference in their lives by enabling them to maintain a sense of self-respect and dignity as they enter into their final stages of life. In addition to providing emotional and physical support, it is important to consider practical matters such as making sure that their end-of-life wishes are respected. This can involve discussing topics such as the type of care they would prefer in their last stages of life, funeral arrangements, and any other decisions related to the end of life. Being present.”

Complete Article HERE!

What to expect in the last moments before death

— It can be difficult to know exactly when someone is going to die, or has died. This page details some of the most common signs.

The following symptoms are often a sign that the person is about to die:

  • They might close their eyes frequently or they might be half-open
  • Facial muscles may relax and the jaw can drop
  • Skin can become very pale
  • Breathing can alternate between loud rasping breaths and quiet breathing.
  • Towards the end, dying people will often only breathe periodically, with an intake of breath followed by no breath for several seconds. This can be upsetting to witness as the person seems to stop breathing only to start again. There might be one or two last gasps a minute or so after what seemed like the last breath, before breathing eventually stops.

When someone dies

The moment of someone’s death is often very profound, even when you have expected it for a long time. You might want to talk to someone or call family and friends to let them know. You might prefer to be alone.

Some people feel overwhelmed with sadness, for others it can take days, weeks or months to process how they feel.

If you have been caring for the person you might feel exhausted, and the relief and finality of the moment of death can take you by surprise.

Every person’s experience of dying and bereavement is unique. However you are feeling, there are organisations and resources to help you. If you think you could benefit from bereavement support visit our page on how to find bereavement services.

Complete Article HERE!

A Son’s Decision to Help His Father Die

— Ben Griffith’s dad chose a method to end his life that was controversial — but protected by a Supreme Court ruling

John Griffith in 1989 cradling granddaughter Jordan.

By John Rosengren

1990: The right to refuse medical treatment

Ben Griffith rose before the sun the morning of March 18, 2022, packed his car and began the long drive from his house in Frankfort, Ky., to suburban Kansas City, Mo. The time had come to help his father die.

Months earlier, when John Griffith made clear to his three sons that he would end his life by denying himself food and drink rather than go into an assisted-living facility, his two older sons objected. Only Ben, the youngest at 67, agreed to keep vigil with his 99-year-old father. Now that John’s quality of life had deteriorated to the point where he would rather die than have his misery prolonged with unwanted treatment in assisted living, Ben was heading to his father’s house.

From their many conversations on the subject over the previous decade, Ben knew his father would have chosen the route of assisted suicide if it were legal in Missouri, as it is in 10 states and the District of Columbia. But it wasn’t. In September 2021, in a power-of-attorney directive, John had given his sons the authority, in the event that he was incapacitated, “to direct a health care provider to withhold or withdraw artificially supplied nutrition and hydration (including tube feeding of food and water).” Now, instead of assisted suicide, John had opted to voluntarily stop eating and drinking, a process known in right-to-die circles by the acronym VSED. The process generally takes between seven and 15 days. Because it can be painful, many who opt for it also seek palliative care through hospice services — which is what John Griffith did.

Seated at the kitchen table of his Frankfort home and surrounded by family photos, Ben recounts his father’s experience with life and death. (Ben participated fully in this article; his eldest brother, Tim, did not comment; his elder brother, Jon, offered this comment: “I just know that Ben did a great job representing the family and our experience of going through VSED with Dad. I don’t need to add anything more.”)

There’s a frost threatening that evening, so Ben and his wife, Patricia, have moved inside a dozen or so plants now safely perched along the kitchen counter. Ben, a piano tuner with short gray hair, is tall and lanky like his father, who was 6-foot-4. His words occasionally give way to emotion. His soft blue eyes, also like his father’s, are warm and kind.

John Griffith — born Dec. 12, 1922, in South Carolina, the son of a Methodist minister — was a man of such strong principles and resolve, he bordered on obstinate. Despite widespread public support for the United States’ involvement in World War II, Griffith at 19 opposed war “for any cause whatever” and refused to register for the draft, which he considered a “contradiction of Christian teachings, democratic liberty and individual freedom.” Instead, as he wrote in an essay for the book “A Few Small Candles: War Resisters of World War II Tell Their Stories,” he served 24 months in federal prison.

The influence of a Quaker attorney willing to defend him pro bono sparked John’s conversion to the Religious Society of Friends. After his release from prison, he attended William Penn College, a Quaker institution in Oskaloosa, Iowa, where he met and married Reva Standing. They raised four sons. Griffith spent his working career managing a farmers cooperative. When their oldest son, Chris, was murdered in 1986, Griffith stuck to his pacifist convictions and opposed the death penalty imposed on his son’s killer.

Reva suffered a stroke in 2003 and showed early signs of dementia in the hospital. Despite his belief that it was wrong to end another’s life in war or by capital punishment, John made the decision to honor her wishes and remove his wife of 56 years from life support in what he considered an act of compassion. “It was clear if she came home, there would be a loss of brain function,” Ben says. “He knew one of her biggest fears was living with dementia.”

Neither father nor son could bear watching a loved one suffer unnecessarily — a point driven home by the experience of Ben’s mother-in-law. In 2016, when Patricia’s 93-year-old mother began losing her sight, she moved into an assisted-living facility and eventually a nursing home after going completely blind. “She fell gradually into a shell,” Ben says. “Her existence was getting not very good.”

 

It was so painful for Ben to watch that he started searching online for ways he could end her life to put her out of her misery and not get arrested. But his father urged him not to do anything that would have negative consequences for his wife and their two adult children. Ben tears up at the telling. “I could have ended her life,” he says. “She suffered — but he said, ‘Don’t do it, Ben.’ ”

Her ordeal seemed to spark something in John. Already into his 90s by then, he began contemplating the end of his own life, which he discussed openly with his sons. Patricia’s mother’s situation “cemented the idea for him: If you go into assisted living, you lose a lot of choices,” Ben says. “If something happens, they call for help. You go to the hospital and they treat you. Same thing if you are in a nursing home. If you’re unresponsive, they are going to treat you.” John made it very clear that he did not want to go into assisted living or a nursing home.

A man as spiritual as he was stubborn, John had meditated daily for years, an hour or so at a time, an essential part of his religious faith and practice. He also swam a mile most every day at the local YMCA. At 90, he set eight state swimming records for nonagenarians on his daily swim, according to Ben. He had decided that once he could no longer swim, life would no longer be worth living and he would begin VSED. “He had identified the red line,” Ben says.

More from The Unwritten Rights Issue

John “had his last swim at 98,” Ben recalls. His “will to live” did continue, but he was losing physical strength. He was having trouble walking and would soon have to use a wheelchair. And he felt himself slipping cognitively. So that’s how he came to fill out his health-care directive in September 2021. With the help of Compassion & Choices, a nonprofit organization that advocates for access to aid in dying, he also filled out an advance directive addendum indicating his desire throughout various stages of dementia that others “keep me comfortable while stopping all treatments and withholding food and water so that I can die peacefully.”

That fall John discussed his VSED intentions with his primary care physician, who did not approve. The doctor tried to talk John out of the idea over the course of several visits. But John would not be dissuaded.

He informed his sons of his plans in a Zoom call. The two older sons protested. Tim, who had been his father’s primary caregiver, taking him to appointments and helping him at home, tried to persuade his father to move into assisted living instead, according to Ben. But their father refused. He would stay in the two-bedroom townhouse he and his wife had lived in for years and die by his own design. There was no talking him out of it. “If he was going to do something, he was going to do it,” Ben says.

From left: John Griffith celebrating his high school graduation in 1940; with wife Reva in a wedding photo from May 1947.

Though Tim and Jon would visit, they did not want to be accomplices to VSED; Ben alone agreed to be with their father continuously throughout the process. “I felt it was an act of love,” Ben says.

In January 2022, John developed a cough. The prescribed medication he took for it made him confused, even after he stopped taking it. He had trouble focusing during his meditation. He began to notice “a sharp decline, both in memory and in my ability to make decisions,” he wrote in a letter to family, friends, neighbors and his spiritual community. In February, he was diagnosed with dementia.

Physically, he was also failing fast. He could no longer stand on his own. He needed the help of home health-care attendants using a lift device to get from his bed to his wheelchair and back again. He was outfitted with a catheter. By late February, his quality of life had sunk to the point of no return. “It’s exhausting to get through every day,” he explained in his letter. “I’ve had a good life. I think the time for VSED is now.” In another Zoom call with his sons, he told them the same. He eventually set March 19 as the date to begin his life-ending fast.

Ben and his brothers hired a hospice service to provide palliative care. But the assigned chaplain, a Catholic priest, said he could not in good conscience minister to someone committed to dying by their own doing. Another chaplain, who was not Catholic, took his place.

“While I agree with the Court’s analysis today, and therefore join in its opinion, I would have preferred that we announce, clearly and promptly, that the federal courts have no business in this field. … This Court need not, and has no authority to, inject itself into every field of human activity where irrationality and oppression may theoretically occur, and if it tries to do so it will destroy itself.”— Justice Antonin Scalia, concurring, Cruzan v. Director, Missouri Department of Health

Others objected, too. Some covertly, some overtly. His next-door neighbor did not disagree with his decision explicitly, though she did come over to read the Bible with John. “She wanted to make sure he was right with Jesus,” Ben says. Once John began the VSED process, Ben says, she stopped visiting.

A key word in the 14th Amendment’s due process clause is “liberty,” a concept that runs deep in the American psyche. “We think of it in terms of: Each individual person controls their own body, especially if you’re an adult and competent,” explains Rob Gatter, a professor at Saint Louis University’s law school and director of its Center for Health Law Studies. “It’s the same reason motorcyclists get mad when states say you have to wear a helmet: … I’m a competent adult and I don’t need the state to be my parent. I make choices for myself understanding if I’m wrong I suffer the consequences. My body does not belong to the state. My body belongs to me.”

Ben arrived at his father’s townhouse in Gladstone, Mo., about 3 o’clock the afternoon of March 18, having driven the better part of 11 hours. He had braced himself for the ordeal, knowing it could become more difficult if his father wavered and requested food or water. Ben could not deny him that. “It’s voluntary,” Ben says. “If a person wants food or water, you give it to him. I had done my homework with Compassion & Choices and read their list of guidance. It says remind the person, ‘Dad, you know you’re doing VSED. If you take ice chips or water, it’s going to delay the process.’ I prepared before I left for that.”

Ben found his father in good spirits. “I am convinced that there is something more: that human consciousness is independent of the body and that the death of the body is not an ending of consciousness — it is rather a passing,” John had written a couple of weeks earlier. “Into what? I confess that I do not know, but I have a deep, abiding trust in the Divine Ground of all existence that the major world religions have variously called God, Mind, Allah, Tao, etc. My parting wish for my friends is that they nurture compassion and walk humbly in the presence of Unfathomable Mystery.”

In addition to the hospice staff coming and going and a home-health caretaker on duty 24/7 beginning March 19, there was a stream of visitors to John’s house the first several days. Neighbors, fellow Quakers and other friends stopped by to spend time with him. John made small jokes at times and laughed with them. Tim and his family also visited. Tuesday, March 22, John was happy to see his son Jon, who arrived from Vermont. He had energy to send some emails. He spent half an hour being interviewed over the phone by someone from Compassion & Choices, which tired him out. The hospice team gave him a bath. Several times a day, Ben gave him the medications prescribed by the hospice nurse — Haldol to ease anxiety and hydromorphone to soothe pain — by squirting them into his mouth with a syringe.

By Wednesday, the fifth day of his fast, John was weakening. It was more difficult for him to get in and out of his wheelchair, even with the power lift. The hospice nurse added lorazepam to John’s list of medications to help him relax. The next day, Thursday, he was talking less, and when he did speak, he didn’t make much sense. He insisted on getting out of bed at one point, then drove his wheelchair into the kitchen but did not seem to know what to do once he got there.

John Griffith on his 90th birthday in 2012, with sons, from left, Jon, Ben and Tim, holding Sammie the dog.

By Friday, March 25, John’s face had lost its color, and his eyes had dulled. One of the nurses tended to his feet and lower legs, which had swollen with fluid. Ben began to sense his father’s life would soon be over.

The process was difficult to watch. Some couldn’t. Matt, married to Tim’s daughter, found it too upsetting to interact with John when he visited. But Ben stayed the course. “I was trying to keep in the role of making sure it happened,” Ben says. “I was the protector of the process.”

At one point during the week, someone informed Ben that a caregiver was swabbing his father’s mouth with a sponge soaked in juice — despite being given clear instructions that they were not to give him any food or liquid. Ben had to go into his father’s bedroom and stop her. “It’s really hard for some people to hear that someone isn’t going to eat or drink anything until they die,” he says.

So hard that others want to intervene. But the law is clear. “A physician who treats a patient against their will — even to save their lives — would be guilty of battery,” Gatter says.

Ben worries the Supreme Court’s recent ruling overturning the right to abortion could cloud the right to refuse treatment. “How can you tell a person you cannot make your own decision?” he says. “It’s their legal right. Who’s going to take that away?”

By Saturday, March 26, eight days into his fast, it was clear John had neared the end. He lay on his side in the fetal position, clutching the rails of his hospital bed and moaning. Ben had been sleeping at his brother Tim’s house, a 15-minute drive away, but he decided to spend that night at his father’s townhouse.

A little after 1 a.m. on the 27th, the nighttime caregiver woke Ben and told him death was at hand. Ben found his father still in the fetal position, breathing very slowly. He laid his hand on his father’s shoulder and leaned over him so that his lips nearly brushed his father’s ear. “It’s okay,” he said. “Let your body go. We love you.” And within a few minutes, John Griffith was gone.

Complete Article HERE!

A researcher’s quest to make end-of-life care more equitable for Black Americans

Black Americans are at greater risk for serious illnesses like dementia and kidney failure, but they’re less likely to receive the kinds of care that can make living and dying with these diseases less painful.

By Leslie Walker, Dan Gorenstein

The four months of care Annie Mae Bullock received for her stage 4 lung cancer were rocky at best. But the final three days of that care, her daughter Karen Bullock said, were excellent.

Annie Mae spent those few days in hospice care at home surrounded by loved ones singing, chanting and praying as she passed.

“We did all of the things we knew she would have wanted us to do,” Karen Bullock said. “And we didn’t have to worry about whether we were being judged.”

That was one of the few times during those hard four months that Bullock and her family hadn’t felt judged. They felt judged when Annie Mae initially declined chemotherapy and later on, when she asked why she needed a legal document outlining her end-of-life wishes.

Bullock is grateful that her mother had those days at home in hospice. She knows many Black families don’t get them.

Research shows that, for seriously ill patients, high-quality supports like advance care planning, hospice and palliative care can alleviate suffering for them – and their families. Benefits include reduced pain and emotional distress, and fewer unwanted interventions.

But Black patients, who are at greater risk for many serious illnesses, are less likely to receive these supports than White patients. For example, just 35 percent of Black seniors eligible for hospice care through Medicare actually receive it, compared to 50 percent of White Medicare beneficiaries.

A lonely road

This is a world Bullock has personal and professional experience navigating. She is a licensed clinical social worker and professor at the Boston College School of Social Work. And for the last two decades, Bullock has been studying why seriously ill Black patients – with incurable conditions like cancer or kidney failure – are less likely to get palliative care, and what it would take to change that.

“In retrospect, seeing that my mother could actually die well is what set me on this journey,” Bullock said.

She has struggled to find funding for her work, told repeatedly to focus on other topics or use data sets that already exist.

“But the large data sets don’t answer the questions that have not yet been asked,” Bullock said.

Through two decades of persistence amassing small studies and focus groups, and the work of others, Bullock has identified some of the barriers. The two biggest, she said, are the failure of the U.S. health care system to build trust with Black families and a lack of culturally competent care.

A system that can’t be trusted in life or in death 

America’s legacy of racism runs deep throughout its health care system, shaping the care Black patients receive and the medical decisions they make – including at the end of life, according to Bullock.

She recalled conversations with Black seniors who remember when their local hospital was segregated or when their communities were targeted with toxic waste sites.

“It’s difficult to convince someone that there is a team of people who want you to die well, when nobody cared if you lived well,” Bullock said.

Racial bias still exists in health care today. Nearly 1 in 3 Black adults in a recent survey said they had been treated poorly by a health care provider because of their race or ethnicity. More than 20 studies document that seriously ill Black patients are less likely to have their pain properly treated, diagnosed or managed.

Bullock said it is a rational decision for people to reject services from a system that has not proven trustworthy.

A culturally incongruent model of care

Bullock has focused a lot of her work on hospice – the kind of end-of-life care that benefitted her own mom. It often happens at home and is free of aggressive intervention.

But after studying the care experiences of more than 1,000 older Black adults and caregivers, Bullock came to the conclusion that certain aspects of the hospice care philosophy, which originated in Europe, are what she calls culturally incongruent.

“This is a European model of care that many White people find to be extremely helpful in dying a good death and having their needs met until the end,” Bullock said.

But she points to the spiritual care component of hospice as one common source of incompatibility. Surveys show spirituality plays a much larger role in the lives of Black families, but White hospice workers may not be familiar with those religious traditions and beliefs.

The least ideal time to explain your cultural preferences, said Bullock, is when you are sick or dying.

“When a patient and or family member has to educate you about their culture while they are receiving care, the message you’re sending is, ‘I don’t know anything about you. I haven’t learned to take care of you,’” she said.

A path toward more equitable care for the seriously ill

For years, experts have been calling for greater equity in care for the seriously ill and dying, but the COVID-19 pandemic has brought renewed attention to the issue.

Some experts, including Bullock, are prioritizing collecting better data and diversifying the medical workforce. Others are focused on expanding access to palliative care, which offers much of the same physical, emotional and spiritual support as hospice without requiring patients to cease aggressive interventions. Research shows Black patients tend to prefer having more intensive treatment options available even at the end of life.

Additional attempts to reduce racial disparities include programs that engage Black churches to reach more patients and those that offer more culturally tailored palliative care. More research is needed to evaluate the effectiveness and scalability of these and other interventions.

Bullock acknowledged working on health care equity can sometimes feel like shouting into a void. On especially hard days she returns to the memory of her mother’s final moments.

As Annie Mae appeared to lose consciousness, Bullock’s family wondered if they should continue their praying and singing and chanting.

It was the hospice social worker who explained the hospice philosophy that hearing is the last sense to go, and gave them a piece of advice Bullock will never forget.

“Continue to say the things you want to say,” the worker urged the Bullock family. “She can hear you even if she can’t respond.”

Complete Article HERE!

A new vision for death and dying

— The Lancet Commission on the Value of Death

The story of dying in the 21st century is a story of paradox. Covid-19 has meant people have died the ultimate medicalised deaths, often alone in hospitals with little communication with their families. But in other settings, including in some lower income countries, many people remain undertreated, dying of preventable conditions and without access to basic pain relief. The unbalanced and contradictory picture of death and dying is the basis for the Lancet Commission on the Value of Death. Drawing on multidisciplinary perspectives from around the globe, the Commissioners argue that death and life are bound together: without death there would be no life. The Commission proposes a new vision for death and dying, with greater community involvement alongside health and social care services, and increased bereavement support.