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

— Including Losing Senses


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.

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.


  • 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!

Seven Common Requests From Dying Patients

Patients want comfort and peace at the end of life, but each one defines this differently. Death is a deeply personal journey, and more than anything when facing death, patients want medical providers and loved ones to hear and value their unique needs.

By Sharleen Lucas, RN

  • Dying patients want comfort and peace. Each patient defines this differently, but there are 7 common requests they make.
  • They want dignity and open talks about their illness and their treatment.
  • They want to be comfortable.
  • They want relief from burdens, time with loved ones, and a legacy that outlives them.
  • They may even want to die alone.

Death is a sacred journey, unique to each person. Knowing what a dying loved one wants is what matters.Patients with advanced illnesses may have a few days or years to live. The phrase “end-of-life” refers to the final stage of an incurable disease or injury. A time frame does not define this last stage of life because it’s a unique journey for each person.

“Every death journey follows along the same path in different ways,” explains Delta Waters, a death doula, and registered nurse. Like birth, each patient has unique symptoms and desires.

Patients, end-of-life specialists, and researchers agree on these seven common requests from dying patients.

1. Dignity

Dignity refers to a person’s inherent nobility and worth. Respecting a patient’s dignity is one of the most common values held by patients, loved ones, and medical providers alike.

But dignity is not an objective, one-size-fits-all concept. It means something different to each person.

“To most end-of-life patients, dignity means, ‘Until my dying breath, I feel like you treat me as if I’m alive and cared for,'” said Beth Patterson, a certified end-of-life doula, and veteran palliative care chaplain.

To one patient, feeling alive and cared for might mean staying on a life-saving machine until they die. To another, however, removing devices is more dignified. Some patients may want a family member to care for their bodily needs, while others may hire an objective caregiver.

Either way, honoring a patient’s wishes whenever possible is the best way to honor their dignity.

2. Open talks

When you’re well, you don’t care to talk about sickness. But when you’re sick, almost everyone wants to talk.

According to a 2011 study of Californian’s attitudes toward end-of-life, 79% of people would “probably” or “definitely” want to talk with a doctor about end-of-life treatment if diagnosed with a serious illness.

Most patients want frank discussions, but some don’t, asking doctors to give the hard truth to their loved ones instead. Many want to know how the medical team will treat their pain and symptoms. A few want to know what the end will be like. Sometimes patients want advice on talking with family or finding meaning in their final days.

Studies confirm that when medical providers talk openly with patients and their loved ones about their dying journey, it improves the quality of life for the patients and their families. It also decreases excessive treatment – which often causes greater patient suffering.

The 2011 study in California found that a quarter of Californians faced language issues with their medical providers, drastically reducing their quality of care. To prevent this, medical providers are required to provide interpreters.

But not all talking needs to be about a patient’s end-of-life treatment, Waters told me. A simple chat over a cup of coffee about whatever comes to their mind helps dying patients feel normal.

3. Comfort and symptom relief

It’s not surprising that dying patients want to be comfortable. Most importantly, comfort means symptom relief, but it also includes how and where they want to die. Most people prefer to die a natural death at home rather than in a hospital connected to machines.

Common end-of-life symptoms include pain, shortness of breath, increasing weakness, anxiety, nausea, loss of appetite, and thirst. Some patients want these symptoms controlled to the point where they mostly sleep. Others choose to endure some discomfort to be awake with loved ones.

Doctors and nurses provide many medical tools for managing symptoms. Patients may also find relief from complementary and alternative therapies.

The goal of symptom relief is comfort – as defined by the patient. Not clearly understanding a patient’s symptoms and desires for comfort can increase their suffering.

4. Relief from burdens

End-of-life patients worry about their families, their finances, and what the end is like. Most of all, dying patients want to know their loved ones will be okay.

One of the best ways to ease these burdens is hospice care. Hospice offers holistic care and counseling for patients facing their last six months of life. With care provided by nurses, aides, medical social workers, counselors, and volunteers, hospice is typically free of charge thanks to Medicare coverage and hospice fundraising.

Sadly, however, most patients wait too long to start hospice. Instead of using hospice for their last six months of life, about 50% of patients only use it for their final 18 days or less.

Contacting hospice sooner helps relieve patients and loved ones of their worries. At a time when every day counts, hospice may even lengthen patients’ lives for up to 29 days.

5. Time with loved ones

Most dying patients want to spend as much time as possible with loved ones. Many want to strengthen relationships, resolve old hurts, and pass on love, wisdom, and stories.

In his book, Dying Well, Dr. Ira Byock says there are five necessary statements to say to your loved ones at the end of life.

  1. Forgive me
  2. I forgive you
  3. Thank you
  4. I love you
  5. Good-bye

These statements help relieve the spiritual and relational burdens of both the dying and their loved ones.

6. A legacy

Loretta Bruening, Ph.D., founder of the Inner Mammal Institute, writes, “You are hard-wired to care about what you leave behind when you’re gone…The neurochemistry that drives animals to promote their genes is what drives you to care about your legacy. Understanding that is important to your happiness.”

Contributing to others and leaving a legacy is called generativity in psychology. It refers to the need of humans later in life to leave their mark. They want to create something that will live after they die.

End-of-life studies support this, saying dying patients show a need to contribute to their community to feel needed, significant, and remembered. Some patients create gifts, start projects, continue to work or make financial donations. Others offer time and knowledge to their community and loved ones.

After working with thousands of dying patients, Patterson knows the importance of a legacy unique to each person. She told me about one patient who left a legacy of “words and actions” by earnestly creating videos for his wife and the first responders he led as captain of the fire station. In contrast, Patterson also recalled a Buddhist coworker who felt no need to create a legacy because her “life was her legacy.”

7. Maybe to die alone

As Waters reminds us, “In the end, even though death is a universal human experience, it’s still a solitary journey for each person.” And some want it that way.

As an RN, I cared for a dying patient in the hospital who lived days longer than his family expected. At age 90, with a failing heart, we thought death would come quickly. His family sat with him each day, taking turns at night. They grew exhausted after several days but were grateful to be with him.

They wondered why he held on so long. We discussed that perhaps he wanted to die alone, so the family decided to go to dinner together, leaving the patient with our staff for an hour.

Not long after they left, his breathing changed and slowed, eventually stopping before the family returned.

Patients who want to die alone are common, according to hospice staff and death doulas. It can be hard on loved ones, but letting patients die alone if they want to is another way to honor their wishes and dignity.

There’s no “right” way to die. Death is an individual’s sacred and one-of-a-kind moment. What matters is honoring each patient’s unique dignity and desires.

Complete Article HERE!