Between life and death:

What a neurologist learned when his brother-in-law fell into a coma

In neurology, there’s a “middle ground” between life and death that providers and patients’ family members alike struggle to navigate—but a new subspecialty could help improve communication around patients’ care, Joseph Stern, a neurologist who’s found himself on both the provider and family side of these difficult brain injuries, writes for the New York Times‘ “Well.”

A family member’s aneurysm leads to difficult decisions

Two years ago, Stern’s brother-in-law, Pat, collapsed with a brain hemorrhage from a ruptured cerebral aneurysm and was taken to UCLA Medical Center. Stern, as Pat’s legally designated health care power of attorney, gave permission for Pat to undergo a “surgical clipping of his ruptured aneurysm” and flew to California to oversee the rest of Pat’s care and communicate those care decisions with Pat’s family.

“Technically, surgery went well,” Stern writes. “But Pat never regained consciousness.” While Pat wasn’t brain-dead, “he remained deeply comatose,” Stern writes.

This, Stern writes, left Pat in a complicated, but all too common, “middle ground” in medicine: he’d experienced a “neurologically devastating injury without brain death.”

In these cases, Stern writes, care-related “decisions can be more difficult” for both family members and providers to know when to stop life-sustaining care. While brain death “is stark and final,” Stern writes that patients with severe neurological injuries who are not brain dead can survive on life-sustaining supports though in many cases they may never wake again.

Stern and Pat’s neurosurgeon, Gregory Lekovic, decided to give Pat a week to improve, and if he didn’t, Lekovic advised the family not pursue more aggressive measures, such as a tracheostomy and G-tube placement. “Lekovic and I worried it would be difficult to back off after those procedures had occurred,” Stern writes.

Pat didn’t neurologically improve after a week, and it was likely that he “would never regain consciousness,” Stern writes.

Stern and Pat’s family had decided to stop treatment, but on the morning they planned to do so one of the neuro-ICU specialists gave them reason to pause. “[O]ne of the neuro-ICU specialists presented a scenario in which Pat might wake up, become able to walk with assistance, and participate with his family,” Stern writes. However, “When pressed, the doctor admitted he was giving us the best possible outcome, rather than the most likely outcome,” Stern writes.

Stern and the family consulted again with Pat’s neurosurgeon, Lekovic, who said if it were his loved one, he’d “make the decision to end treatment,” Stern writes. According to Stern, Lekovic “seemed genuinely sad” saying this.

The importance of empathy and connection

“Doctors often think it is most important to be precise and not make mistakes; to predict the future with medical certainty,” Stern writes. “In my experience, connection and empathy are far more important than certainty. Patients and families want to know that you care about them and that you appreciate their pain in difficult circumstances.”

To help guide families and caregivers through this complicated medical condition, Stern notes that a new field, called neuropalliative care, has emerged. In neuropalliative care, providers “focus ‘on outcomes important to patients and families’ … ‘to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body.'”

Health care providers shouldn’t “focus on the short-term or allow care to be driven by procedures, losing sight of outcome and quality of life,” Stern writes. “We need to approach our patients and their families with open hearts, acknowledging their suffering and the uncertainty we all experience.”

In the case of Pat, Stern explains that his family, particularly Pat’s sons, “appreciated the truth when I explained their father’s prognosis.” Of course, the sons were “devastated at the prospect of losing him,” Stern writes, but “honesty and inclusion in decision-making were important in helping them move forward with their lives”

Complete Article HERE!

Dying in the Neurosurgical I.C.U.

In cases of brain death or neurologically devastating injury, poor communication can make painful situations even harder.

By Joseph Stern, M.D.

The bullet hole in the teenager’s forehead was so small, it belied the damage already done to his brain. The injury was fatal. We knew this the moment he arrived in the emergency room. Days later, his body was being kept alive in the intensive care unit despite an exam showing that he was brain-dead and no blood was flowing to his brain. Eventually, all his organs failed and his heart stopped beating.

But the nurses continued to care for the boy and his family, knowing he was already dead but trying to help the family members with the agonizing process of accepting his death.

This scenario occurs all too frequently in the neurosurgical I.C.U. Doctors often delay the withdrawal of life-sustaining supports such as ventilators and IV drips, and nurses continue these treatments — adhering to protocols, yet feeling internal conflict. A lack of consensus or communication among doctors, nurses and families often makes these situations more difficult for all involved.

Brain death is stark and final. When the patient’s brain function has ceased, bodily death inevitably follows, no matter what we do. Continued interventions, painful as they may be, are necessarily of limited duration. We can keep a brain-dead patient’s body alive for a few days at the most before his heart stops for good.

Trickier and much more common is the middle ground of a neurologically devastating injury without brain death. Here, decisions can be more difficult, and electing to continue or to withdraw treatment much more problematic. Inconsistent communication and support between medical staff members and families plays a role. A new field, neuropalliative care, seeks to focus “on outcomes important to patients and families” and “to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body.”

Not long ago, my surgical partner performed late-night emergency surgery on a young woman who had also been shot in the head. This time, the bullet’s violent impact exploded her skull. It traversed both hemispheres of her brain, including her basal ganglia and thalamus (deep brain regions affecting consciousness). Injury to these areas has a dismal prognosis, as do penetrating injuries to both sides of the brain. But, unlike the first patient with a single bullet hole and no exit wound, the initial explosion decompressed her brain, accommodating swelling rather than producing dangerously high pressures as occurred in the first patient, which led to brain herniation and his death.

This young woman lay in her I.C.U. bed, breathing with the aid of a mechanical ventilator, turned by nurses every two hours, fed through a thin tube passed through her nose into her stomach: never conscious, never moving spontaneously, seemingly unaware of her surroundings. She was likely to remain this way for the rest of her life.

The treating physicians and nurses agreed on the patient’s prognosis, and on a consistent message everyone could support. We met with the family at the young woman’s bedside and later telephoned out-of-state family members. The I.C.U. director and I spoke about difficult medical decisions we’d had to make regarding our own family members, and we asked them what she might want, since they were representing her interests and acting on her behalf. I explained her injury and the likelihood that she would never recover: Together, family members and neuro-I.C.U. caregivers agreed to transition the woman to comfort care and let her die.

Two years ago, I too was on the family side of this situation after my brother-in-law Pat collapsed with a brain hemorrhage from a ruptured cerebral aneurysm. As the only physician in the family and Pat’s legally designated health care power of attorney, I made his medical decisions and communicated with the rest of his family, including his two sons, who were then 16 and 18 years old. This was all the more difficult because a year previously, his wife, my sister Victoria, had died of leukemia, leaving Pat as their children’s sole caregiver.

Pat was taken by ambulance to U.C.L.A. Medical Center in Westwood. Before flying to Los Angeles, I agreed to surgical clipping of his ruptured aneurysm. Technically, surgery went well, but Pat never regained consciousness. While never brain-dead, he remained deeply comatose. His neurosurgeon, Gregory Lekovic, was supportive: he and I discussed a timeline at our first meeting. He recommended giving Pat at least a week to improve. If he did not, Dr. Lekovic counseled us not to allow a tracheostomy and G-tube placement (permanent surgical routes for breathing and nutrition), and opt instead to withdraw treatment. This would be the clear stopping point. Dr. Lekovic and I worried it would be difficult to back off after those procedures had occurred.

Throughout the following week, Pat did not improve at all neurologically. Everyone hoped he was rallying. I felt like a wet blanket, continually challenging the other doctors’ enthusiasm. Understanding his condition and having legal authority to make decisions allowed me to keep a clear view of care objectives, but it didn’t make the situation easier on a personal level. Pat’s children had only begun coming to terms with losing their mother and were now confronting the possible loss of their father. But delaying this loss wouldn’t justify his continued existence without quality of life. He would have hated being comatose or severely impaired in a nursing home, unable to relate to his family or to care for his own basic needs such as eating or toileting, and had feared burdening his family.

The likelihood was that Pat would never regain consciousness. Yet on the morning we had planned to withdraw treatment, one of the neuro-I.C.U. specialists presented a scenario in which Pat might wake up, become able to walk with assistance and participate with his family. When pressed, the doctor admitted he was giving us the best possible outcome, rather than the most likely outcome.

Then Dr. Lekovic, speaking plainly, told us that for himself or his family member, he would make the decision to end treatment. He seemed genuinely sad. Doctors often think it is most important to be precise and not make mistakes; to predict the future with medical certainty. In my experience, connection and empathy are far more important than certainty. Patients and families want to know that you care about them and that you appreciate their pain in difficult circumstances.

My nephews appreciated the truth when I explained their father’s prognosis. While they were devastated at the prospect of losing him, honesty and inclusion in decision-making were important in helping them move forward with their lives.

Even with my training, I wondered if I was making the right decisions. Each affected family faces similar burdens. We all need better help wrestling with decisions in neurologically devastated patients, both through improved communication and the development of neuropalliative services.

Those of us in the medical profession cannot allow ourselves to focus on the short-term or allow care to be driven by procedures, losing sight of outcome and quality of life. We need to approach our patients and their families with open hearts, acknowledging their suffering and the uncertainty we all experience.

Complete Article HERE!

What Does It Feel Like To Die?

By Gabrielle Elise Jimenez

For the past few months, when appropriate, I have asked some of my patients what it feels like to die. My reason for this is because I want to provide better care; I want to truly tap into all the ways that we can relieve someone of the struggles they experience when they are dying. I found it interesting that most people said that usually, no one asks that particular question. I explained my reason for wanting to know, and almost everyone had something to say.

I think we always assume pain is in the forefront, and that has proven to be true but it goes deeper than that. With the pain, comes the fear of never being free of the pain. The emotional exhaustion from having to constantly try something new, or increasing something that doesn’t work, or worse, not having it even touch the pain at all, is a heavy weight to bear. There is a very common thread amongst people who are experiencing pain; no one wants to die feeling that way, or worse, living that way until they die. While medications are effective most of the time, usually they just knock the patient out for an hour or two, and then are woken up by their pain once the medication wears off. Each person told me they do not want to die that way. One person said to me, “every day I lay here in this bed and I don’t move; not because I am paralyzed physically, but because I am paralyzed by the fear of making my pain worse if I move. Every time someone comes in here to reposition me, or check on me, I prepare myself for pain”. This resonated huge for me.

Death is hard enough, but death with pain is a constant debilitating struggle. I certainly can’t speak for anyone else, and I am in no position to tell you what to do, but after hearing this over and over again, and as a patient advocate, I can assure you anyone nearing the end of life, struggling with severe pain does not want to hold on and wait it out. They certainly do not want to feel this way until they take their last breath. My advice is if given the opportunity to ask them what they want or need, and they have a voice, listen to them and respect their wishes. It may not be something you approve of or agree with, but this isn’t about you. Imagine if you were able to be the difference between a painful or a peaceful death.

Emotional pain is a runner up to physical pain for those at the end of life. You would be surprised at how many people are actually not afraid to die. They are not as focused on the death itself, but more often, the amount of time it takes to get there. One person said to me, “every morning I wake up, I want to cry because I am still here”. Lying in a bed, day after day, knowing the inevitable is around the corner can be agonizing. I broke down and cried when a patient said to me, “I just want to die and I can’t. I am given a death sentence, of which I can no longer fight, but I am forced to just sit here and wait. There is no dignity in death. I have to die on someone else’s terms”. How do you respond to that?

They struggle with losing their independence, and having someone else clean and change them. This was repeated often. Having someone else move you from side to side, rolling you over as your head is pressing into the side rail, not even realizing that your shoulder is crunched down under you so hard you ache for hours after. And then, once you are cleaned up, re-positioned how someone else thinks you should be, you just lie there and cry inside. As death nears, they can’t help but think about their death; what it will be like, when it will happen and why the hell it isn’t happening sooner.

Meanwhile on the other side of this, is the family and loved ones crying at your bedside begging you not to leave them. So with everything else you are experiencing, guilt comes along and rears its ugly head. One person said to me, “I feel like I have let them down”. That is a heavy responsibility to carry. It is easy for us to think about how their death will effect us; but what most of us don’t think about, is how our feelings of their impending death effects them. So many have said to me how badly they wish they could tell their loved ones this isn’t their first choice, they didn’t want to get sick, they don’t want to die. They want to say they are sorry; sorry for getting sick, sorry for this long drawn out process, and most of all, sorry for the pain it causes everyone around them. Here they are dying and they want to apologize.

While I heard about the physical and emotional pain, I also heard the lovely things as well. Even people who were usually private and quiet and preferred to be left alone, welcomed the bedside visitors, the memories shared, the music played and the heartfelt goodbyes. They want to know how much they are loved, they want to know they made a contribution, and even though it is a hard pill to swallow, they want to know they will be missed. We think a lot about our own grief, and what saying goodbye to someone will feel like, but they have that too, in a very big way.

Some of the most beautiful conversations I have had are about the visions people see, the people standing next to the bed, or walking by a door or window… the ones that we can’t see. People tend to think they are delirious and afraid, but that is not what they have shared with me. In fact most feel safe and protected knowing there is someone watching over them, and perhaps waiting to guide them safely to wherever it is they will be going. I can’t help but wonder if it is our own fear that we are projecting onto them. What if instead, we asked about who or what they saw, encouraging them to trust us with their visions.

I cringe every time I see someone moving a patient without telling them first; repositioning them every two hours because that is what they were taught, not once thinking if this is truly in their best interest and certainly not thinking of the pain or discomfort this might cause. Whether or not they can verbalize, they should always be treated with kindness and respect. They should be offered a gentle warning before being touched, moved, or given medication. Lights should not be suddenly tuned on above their heads, after lying in a darkened room, covers should not be piled on heavily or quickly removed, and they definitely should NOT be lying naked for all to see when being changed. And please, if someone is actively dying, put the blood pressure cuff down, why are you taking their blood pressure? This irritates me like you can’t believe. Most vital signs can be assessed visually or by touch; at the end of life, please don’t put them through those tests. So many things we could do differently if we took the time to ask them what they need, or if we simply thought about their needs.

I remember awhile back, I walked in to visit a patient and said, “how are you doing today?” which seemed like a valid question. I had no idea the effect that question would have on someone until I received his response. “How do you think I feel, I am dying”. I never asked that question again. I start each visit now with, “it is really nice to see you”.

As I have said in many of my previous blogs, this is their experience not ours. The fact that we assume what they need, without asking, even when they have a voice, is selfish. As a society we have grown disrespectful on many levels and I am reminded of this most of all when talking to people who are at the end of their life. These are human beings who still have a voice and I think it is our responsibility to hear them. If we listen, if we truly take the time to ask them what they need, imagine the care we can provide not only to them, but also to those who do not have a voice, who can’t verbalize their needs. I only spoke to a handful of patients, so my findings do not speak on a global level, but I do think it is a good start to providing better care.

What does it feel like to die? It is emotional, it can be painful, it is usually sad, and it can sometimes be incredibly lonely. People do not die the same way and while there are similarities and common symptoms, each is still very unique. Therefore we need to take the time to listen, to observe, and assess what each person is experiencing, and what they might need when they are going through the dying process. We cannot treat everyone the same way. The only consistencies we should have when caring for someone at the end of their life, is that it is always done with kindness, compassion, respect, and honesty.

Complete Article HERE!

As her grandparents’ love was tested by dementia, a photographer focused on their bond

“When the nurses told Else that Poul could die soon, she stayed with him all the time at the nursing home, sleeping on a mattress next to his bed,” said Sofie Mathiassen, the recipient of this year’s Bob and Diane Fund grant.

By Olivier Laurent

Sofie Mathiassen’s grandparents — Poul and Else — always kept a journal, jotting down in a sentence or two — sometimes more — the small joys of each of their days together. Eight years ago, Poul was diagnosed with dementia and Parkinson’s disease, and, for the past four years, their granddaughter has been photographing their daily lives in Denmark, creating a record of Poul’s last moments on earth.

The work has won the Bob and Diane Fund grant, a cash prize dedicated to raising awareness through photography of the medical crisis around Alzheimer’s and dementia.

“I have always been very close with my grandparents and spent a lot of time with them throughout my childhood,” Mathiassen said. “So, when my grandfather began to get sicker I started photographing him. I wanted to keep him as I knew him, and I could see him fading away from me and from my grandmother and the rest of the family.”

Poul, 82, at the dinner table with his wife, Else.
Else, 83, at the dinner table with her husband, Poul.

Mathiassen’s photos show the bond between Poul and Else as one’s dementia becomes overwhelming and the other works to hold onto what’s slowly disappearing.

“Their story is just one example of what many families are going through,” Mathiassen said. “I hope that people see the love before they see the disease.”

“Photographing your family takes a certain risk and vulnerability,” said Getty Images photographer Chip Somodevilla, one of this year’s judges. “And Sofie has shared her world with us in an intimate and beautiful way. Denmark may have a sophisticated welfare system — but dementia still has the same impact.”

Mathiassen will receive $5,000 to publish her images in a photo book in 2020, said Gina Martin, the fund’s founder and executive director, said.

Poul and Else Mathiassen in their house in Skanderborg, Denmark.
Dinnertime at Poul’s nursing home.
A mural at Poul’s nursing home.
One week after Poul died, Else celebrated her 84th birthday. She lives alone in their house and plans to stay there.

Complete Article HERE!

At 94, she was ready to die by fasting. Her daughter filmed it.

Mary Beth Bowen holds a portrait of her mother, Rosemary Bowen, who died last year at 94. Mary Beth started filming her mother’s last days as she stopped eating and her body shut down.

By Tara Bahrampour

When Rosemary Bowen hurt her back last fall, she was diagnosed with a spinal compression fracture, a common injury for people with osteoporosis. At 94, the retired school reading specialist was active and socially engaged in her Friendship Heights neighborhood, swimming each day, cooking and cleaning for herself, and participating in walking groups, a book club and a poetry cafe. Doctors assured her that with physical therapy and a back brace, she would probably recover in about three months.

Instead, she announced to her family and friends that she had decided to terminate her life by fasting. After saying her goodbyes, she stopped eating, and in the early morning of the eighth day of her fast, she died in her sleep.

But first, Rosemary asked her daughter, Mary Beth Bowen, to film her fast. The final week of her life is now documented, day by day, in a 16-minute film, which was shown publicly for the first time Saturday at the End of Life Expo hosted by Iona Senior Services in Tenleytown.

It may sound macabre to hold a camera up to a dying woman. But Mary Beth said her mother wanted to spread the word that there was a legal, relatively pain-free way to end one’s life. “She thought that more people should take advantage of it,” she said. “She wanted to show people that it could be peaceful and even joyful.”

Rosemary’s plan didn’t completely surprise her family. She had lived through the Depression, when her father lost his job and moved the family to their grandmother’s farmhouse in Magnolia, Wis. Perhaps because of that experience, she was horrified by the idea of imposing on others, even temporarily, to the point where she would stay in a hotel rather than with family. “For all my life, she used to say, ‘People should row their own boats,’ ” Mary Beth said.

Rosemary had seen friends in their 90s who had slowly declined, and as far back as 1979 she wrote about her aversion to an old age with loved ones “shuffling in and out of rest homes visiting me.” When a friend ended her life by fasting, Rosemary decided someday she would do the same.

“At every family reunion she would talk about it — ‘When I get to the point where I can’t care for myself, then I’m going to hasten my death through fasting,’ ” Mary Beth said. “… She said, ‘Old Eskimos, they would just go off and die,’ and she thought that made so much sense.”

After her injury she spent two weeks at a rehab facility, and her daughters talked her into trying out an assisted-living facility. But she hated that she needed help with basic tasks such as cleaning herself, and after two days there she decided to go through with the fast.

Family members begged her to reconsider. Didn’t she want to see her great-grandchildren start to grow up, Mary Beth asked. One of Rosemary’s daughters said she was hurt that Rosemary would not stick around to see her granddaughter graduate.

But Rosemary was adamant. “She said, ‘I’m sorry, but I have to do what’s right for me,’ ” Mary Beth said.

A ‘good death’?

Rosemary would have preferred to take a pill to quickly end her life, but only a handful of states have aid-in-dying laws, and Maryland is not one of them, though it came close to passing such a bill earlier this year. Fasting, or Voluntarily Stopping Eating and Drinking (VSED), is not prohibited by any state.

There is no count of how many people choose this route, but it is gradually entering the public conversation. Radio host Diane Rehm revealed on a 2014 segment that her husband, who had suffered from Parkinson’s disease, had brought about his own death by fasting.

Depending on the person’s health and other circumstances, it can take from a few days to a few weeks before death occurs, according to published studies on the method. Refraining from drinking liquids can significantly hasten the process, as a person can survive for a long time by fasting alone. Proper mouth care is essential for a comfortable death, including keeping the person’s lips moist. Aggressive treatment for pain should also be available.

In a 2015 study, 80 percent of family physicians in the Netherlands who had treated VSED cases said the process had unfolded as the patients wanted; only 2 percent said it hadn’t. The median time until death was seven days. Doctors reported that 14 percent of their patients suffered pain in their final three days, and smaller percentages experienced fatigue, impaired cognitive functioning, delirium, and thirst or dry throat.

The results were similar to that of a 2003 study in which hospice nurses in Oregon were asked if they had treated patients who chose to stop eating and drinking. Eighty-five percent of those patients died within 15 days, and the nurses’ median score for the quality of their deaths, on a scale from 0 (a very bad death) to 9 (a very good death), was 8.

Even so, many advocates for aid-in-dying laws argue that people should not have to draw out their own deaths in such a way. Rehm made that argument vociferously after the death of John Rehm, who chose VSED after his doctor said he couldn’t give him drugs to end his life.

David L. Bowen and his wife Rosemary Bowen.
Rosemary Bowen’s beloved sewing machine

The next step after Rosemary decided she wanted to end her life was getting into a hospice program so she could receive aggressive pain medication and other support during the fast. Although she did not technically qualify for hospice since she didn’t have a terminal illness, an Iona staff member helped find one willing to accept her.

In the days leading up to her fast, Rosemary said goodbye to close friends and family members, and started eating half-size meals. Her last meal, for dinner on Dec. 5, was crab cakes. The next day, she stopped eating — and her daughter started filming.

The first scene shows Rosemary smiling, propped up against a blue satin pillow, her short gray hair framing her face. “I am leaving life with great joy,” she says. “I cannot tell you how content I am and I recommend it highly to do it this way. Be in control. Don’t let people decide anything about you and keep you doing a lot of procedures that are not going to benefit your health at all. Just get on with it and go.”

On Day 3 Rosemary says she feels “Okay. Good. Happy. Relieved.” On Day 4, her voice is still strong, and she has returned from walking down the hall with her walker.

Around then, Rosemary became impatient. She felt fine — too fine — and wondered why death was taking so long. Her daughter pointed out that she was still having small sips of water each day with a pill. So she stopped that, instead relying on tiny wet sponges to hydrate her mouth.

By Day 5, her voice cracks as she reports feeling “weaker, and I’m delighted.”

On Day 6, Mary Beth breaks from her neutral observer role and asks if her mother has any regrets about what she’s doing.

“Absolutely none,” Rosemary says.

“But you know that I would much rather have you live for another year or two,” Mary Beth says.

“Oh God,” her mother says with a grimace.

Mixed reactions

The film does not skip over difficult parts, including the last day Rosemary is conscious, when her mind starts to wander as her organs shut down, and she slips into a deep sleep.

In the audience at Iona, the film elicited mixed reactions.

Gerry Rebach, a former hospice nurse whose mother hastened her death with a fast that took 21 days, said, “It’s not easy, and this movie made it seem easy. I would hate for it to give false impressions.”

Rebach said she cannot imagine herself following her mother’s example. “I think it takes an incredible act of will to be sentient and be able to do that.”

Jean McNelis, a Friendship Heights resident who was friends with Rosemary for 20 years and watched the film Saturday, said she is in the process of figuring out details of her living will, will, and power of attorney. “I don’t have any opinion formed yet about what I want,” she said. “She gave me things to think about.”

Carol Morgan, 78, of Columbia Heights, was upset by the film. Her mother had also fasted to hasten her death in 2006. “It broke my heart,” Morgan said. “I couldn’t bear to see it. … There’s something in me that rebels against it.”

For Mary Beth, the filming was excruciating. She would mostly hold her tears back when she was with her mother, then burst into sobs in the parking garage.

But she saw how happy Rosemary was with her decision. “I felt so gratified that I was helping her on this journey that she was on,” she said. “We were in it together. We’ve always been close, but we became even closer. We’ve never been closer than that last week.”

In the end, helping her mother end her life felt like a sacrament. And filming it felt empowering. Since Rosemary’s death, several of her mother’s friends have told her they are considering following her example, she said.

When Esther Delaplaine, 95, a friend and neighbor, visited Rosemary during her fast, she said, “I had a chance to tell her … how her manner of going was a guide to me in some future that I would be facing.”

That was what Rosemary was hoping for. In the final scene of the film, she can be heard saying, “I feel so privileged to be exiting life like this, and think of all those people who are wringing their hands and saying ‘If only God would take me,’ and all they need to do is give God a little help by holding back on eating and drinking.”

By then, the bed is empty, the blue satin pillow still on it.

Complete Article HERE!

What’s a ‘good death’?

It’s not quite the peaceful drifting off I’d imagined for my dad.

By Harriet Brown

At age 86, my father had survived both colon cancer and a stroke that left him with aphasia. His mind was sharp, though, and he wasn’t depressed. A crack bridge player with a passion for Italian restaurants, he was popular at his assisted living facility even though he couldn’t speak much. He told me he’d lived a good life and wasn’t afraid of dying, and he didn’t want to go through any more medical trauma. No chemo, no radiation, no surgeries, no treatment.

His advance directive read DNR and DNI — do not resuscitate, do not intubate. No one would break his ribs doing CPR or make bruises bloom along his arms trying to find a vein. As his health-care proxy, I was completely on board. I’d read Sherwin Nuland’s “How We Die,” Atul Gawande’s “Being Mortal,” Elisabeth Kubler-Ross’s “On Death and Dying.” Comfort would be the priority and any pain would be “managed,” which I assumed meant erased.

Up to 80 percent of Americans die in hospitals or nursing homes, and a third spend at least 10 days in an intensive care unit before they die, many of them comatose or on a ventilator. A week after his sudden diagnosis of widespread metastatic disease, my father was lucky enough to get a bed in our town’s only hospice, a homey facility staffed with attentive and experienced caregivers. The alternative would have been a hospital bed in my living room, so it was a relief to know that my father was in the hands of professionals. They would know what to do.

And they did. The nurses and caregivers were gentle as they repositioned my father in bed, explaining each move even when it seemed he couldn’t hear or follow. When he could no longer swallow they squirted morphine into his cheek and rubbed it so the medicine would be absorbed. “This will make you feel better,” they would say, and my father would turn his head and open his chapped lips like a baby bird.

But his death was not the peaceful drifting away I’d always imagined, where you floated into a calm, morphine-induced sleep, your breath came slower and slower and then simply stopped. He vomited blood over and over. A lifelong stoic who never complained of pain — even when he’d broken a hip the year before — he twitched restlessly in bed, eyes closed, his brow furrowed and his skin clammy.

The magical “managing” of pain and nausea I’d anticipated turned out to be more aspirational than real. The hospice nurse prescribed one anti-nausea medication, then another, without success. Eventually, Ativan and Haldol settled the nausea, and morphine helped the pain. My father was lucky it helped; about 25 percent of people die in pain. One caregiver confided to me, “There are people whose pain we never get under control.”

For days we watched my father’s cheeks hollow, watched him pluck at the thin blanket that was all he could bear on his body. His kind brown eyes glazed over, and some trick of the light made them look blue under his half-closed lids. Sometimes he sat up suddenly, reaching forward, and then fell back on the pillows. I knew there was a name for this behavior, terminal restlessness, that it’s common during the dying process. I knew the gurgling sounds he made as he breathed came from his body’s inability to clear secretions, and that — according to hospice — it probably wasn’t uncomfortable for him.

Leaving the hospice facility one night, I told my 81-year-old aunt that I wished I had the nerve to put a pillow over his face. “I’ll stand guard at the door while you do,” she replied. Dying is hard work. And it’s hard to watch.

On the last night, I sat with my father until the summer sky began to darken. Then I gathered my belongings and leaned over the bed where he lay unresponsive, his eyes closed, his mouth half-open. I kissed his stubbled cheek. “Dad, I’m going now,” I told him. “It’s time for you to go too.” He died a few hours later. He was alone, as most people are when they die, so I don’t know if it was peaceful, if he made a sound or opened his eyes or just stopped breathing.

After he died, I was haunted by scenes of his suffering. I remembered looking out a hospital window nearly 30 years earlier with my newborn daughter in my arms, realizing that every one of the people I saw on the street had been born. For every person walking down Seventh Avenue, a woman had borne pain that tore her body open. It was a horrifying thought.

Drugs help with the pain of childbirth, but they can’t take it away completely. It’s the same with dying.

“Suffering is an ineradicable part of life, [like] fate and death,” wrote psychologist Viktor E. Frankl in his bestseller “Man’s Search for Meaning.” He was something of an expert, having survived nearly three years in a variety of Nazi camps.

Of course, my father’s suffering was nothing like the kind Frankl witnessed. But still, death, like birth, is a creaturely process, a force that wrenches us onward without consulting our preferences or respecting our sensibilities.

In the weeks after my father’s death, I began to understand in a deeper way the meaning of a good death. No drugs took away all my father’s physical pain and nausea. But in the care he was given, the morphine, the quiet words, the repositioning and cool cloths on his forehead, his suffering was addressed even if it couldn’t be “managed.”

And that, I think, is what we all want. Not just freedom from beeping machines and needles and the cold lighting of an ICU, though that matters, too. Not just the absence of pain, which isn’t possible for everyone. But the solace of being seen and heard and acknowledged brings comfort even in the face of deep suffering.

I hope it’s something we can remember as we move toward a society where more of us can have a truly good death.

Complete Article HERE!

What happens as we die?

As with birth, dying is a process. How does it unfold? Can you prepare for it? And why should you keep talking to a dying person even if they don’t talk back?

By Sophie Aubrey

We’re born, we live, we die. Few things are so concrete. And yet, while we swap countless stories about the start of life, the end is a subject we’re less inclined to talk about.

Conversations about death – what it is, what it looks like – are scarce until we suddenly face it head on, often for the first time with the loss of a loved one.

“We hold a lot of anxiety about what death means and I think that’s just part of the human experience,” says Associate Professor Mark Boughey, director of palliative medicine at Melbourne’s St Vincent’s Hospital. “Some people just really push it away and don’t think about it until it’s immediately in front of them.”

But it doesn’t need to be this way, he says.

“The more people engage and understand death and know where it’s heading … the better prepared the person is to be able to let go to the process, and the better prepared the family is to reconcile with it, for a more peaceful death.”

Of course, not everyone ends up in palliative care or even in a hospital. For some people, death can be shockingly sudden, as in an accident or from a cardiac arrest or massive stroke. Death can follow a brief decline, as with some cancers; or a prolonged one, as with frailty; or it can come after a series of serious episodes, such as heart failure. And different illnesses, such as dementia and cancer, can also cause particular symptoms prior to death.

But there are key physical processes that are commonly experienced by many people as they die – whether from “old age”, or indeed from cancer, or even following a major physical trauma.

What is the process of dying? How can you prepare for it? And how should you be with someone who is nearing the end of their life?

What are the earliest signs a person is going to die?

The point of no return, when a person begins deteriorating towards their final breath, can start weeks or months before someone dies.

Professor Boughey says refractory symptoms – stubborn and irreversible despite medical treatment – offer the earliest signs that the dying process is beginning: breathlessness, severe appetite and weight loss, fluid retention, fatigue, drowsiness, delirium, jaundice and nausea, and an overall drop in physical function.

Simple actions, such as going from a bed to a chair, can become exhausting. A dying person often starts to withdraw from the news, some activities and other people, to talk less or have trouble with conversation, and to sleep more.

This all ties in with a drop in energy levels caused by a deterioration in the body’s brain function and metabolic processes.

Predicting exactly when a person will die is, of course, nearly impossible and depends on factors ranging from the health issues they have to whether they are choosing to accept more medical interventions.

“The journey for everyone towards dying is so variable,” Professor Boughey says.

What happens in someone’s final days?

As the body continues to wind down, various other reflexes and functions will also slow. A dying person will become progressively more fatigued, their sleep-wake patterns more random, their coughing and swallowing reflexes slower. They will start to respond less to verbal commands and gentle touch.

Reduced blood flow to the brain or chemical imbalances can also cause a dying person to become disoriented, confused or detached from reality and time. Visions or hallucinations often come into play.

“A lot of people have hallucinations or dreams where they see loved ones,” Professor Boughey says. “It’s a real signal that, even if we can’t see they’re dying, they might be.”

But Professor Boughey says the hallucinations often help a person die more peacefully so it’s best not to “correct” them. “Visions, especially of long-gone loved ones, can be comforting.”

Instead of simply sleeping more, the person’s consciousness may begin to fluctuate, making them nearly impossible to wake at times, even when there is a lot of stimulation around them.

With the slowing in blood circulation, body temperature can begin to seesaw, so a person can be cool to the touch at one point and then hot later on.

Their senses of taste and smell diminish. “People become no longer interested in eating … they physically don’t want to,” Professor Boughey says.

This means urine and bowel movements become less frequent, and urine will be much darker than usual due to lower fluid intake. Some people might start to experience incontinence as muscles deteriorate but absorbent pads and sheets help minimise discomfort.

What happens when death is just hours or minutes away?

As death nears, it’s very common for a person’s breathing to change, sometimes slowing, other times speeding up or becoming noisy and shallow. The changes are triggered by reduction in blood flow, and they’re not painful.

Some people will experience a gurgle-like “death rattle”. “It’s really some secretions sitting in the back of the throat, and the body can no longer shift them,” Professor Boughey says.

An irregular breathing pattern known as Cheyne-Stokes is also often seen in people approaching death: taking one or several breaths followed by a long pause with no breathing at all, then another breath.

“It doesn’t happen to everybody, but it happens in the last hours of life and indicates dying is really front and centre. It usually happens when someone is profoundly unconscious,” Professor Boughey says.

Restlessness affects nearly half of all people who are dying. “The confusion [experienced earlier] can cause restlessness right at the end of life,” Professor Boughey says. “It’s just the natural physiology, the brain is trying to keep functioning.”

Circulation changes also mean a person’s heartbeat becomes fainter while their skin can become mottled or pale grey-blue, particularly on the knees, feet and hands.

Professor Boughey says more perspiration or clamminess may be present, and a person’s eyes can begin to tear or appear glazed over.

Gradually, the person drifts in and out or slips into complete unconsciousness.

How long does dying take? Is it painful?

UNSW Professor of Intensive Care Ken Hillman says when he is treating someone who is going to die, one of the first questions he is inevitably asked is how long the person has to live.

“That is such a difficult question to answer with accuracy. I always put a rider at the end saying it’s unpredictable,” he says.

“Even when we stop treatment, the body can draw on reserves we didn’t know it had. They might live another day, or two days, or two weeks. All we know is, in long-term speaking, they certainly are going to die very soon.”

But he stresses that most expected deaths are not painful. “You gradually become confused, you lose your level of consciousness, and you fade away.”

Should there be any pain, it is relieved with medications such as morphine, which do not interfere with natural dying processes.

“If there is any sign of pain or discomfort, we would always reassure relatives and carers that they will die with dignity, that we don’t stop caring, that we know how to treat it and we continue treatment.”

Professor Boughey agrees, saying the pain instead tends to sit with the loved ones.

“For a dying person there can be a real sense of readiness, like they’re in this safe cocoon, in the last day or two of life.”

Professor Boughey believes there is an element of “letting go” to death.

“We see situations where people seem to hang on for certain things to occur, or to see somebody significant, which then allows them to let go,” he says.

“I’ve seen someone talk to a sibling overseas and then they put the phone down and die.”

How can you ‘prepare’ for death?

Firstly, there is your frame of mind. In thinking about death, it helps to compare it to birth, Professor Boughey says.

“The time of dying is like birth, it can happen over a day or two, but it’s actually the time leading up to it that is the most critical part of the equation,” he says.

With birth, what happens in the nine months leading to the day a baby is born – from the doctor’s appointments to the birth classes – can make a huge difference. And Professor Boughey says it’s “absolutely similar” when someone is facing the end of life.

To Professor Hillman, better understanding the dying process can help us stop treating death as a medical problem to be fixed, and instead as an inevitability that should be as comfortable and peaceful as possible.

Then there are some practicalities to discuss. Seventy per cent of Australians would prefer to die at home but, according to a 2018 Productivity Commission report, less than 10 per cent do. Instead, about half die in hospitals, ending up there because of an illness triggered by disease or age-related frailty (a small percentage die in accident and emergency departments). Another third die in residential aged care, according to data from the Australian Institute of Health and Welfare.

Professor Hillman believes death is over-medicalised, particularly in old age, and he urges families to acknowledge when a loved one is dying and to discuss their wishes: where they want to die, whether they want medical interventions, what they don’t want to happen.

“[Discussing this] can empower people to make their own decisions about how they die,” says Professor Hillman.

Palliative Care Nurses Australia president Jane Phillips says someone’s end-of-life preferences should be understood early but also revisited throughout the dying process as things can change. With the right support systems in place, dying at home can be an option.

“People are not being asked enough where they want to be cared for and where they want to die,” Professor Phillips says. “One of the most important things for families and patients is to have conversations about what their care preferences are.”

How can you help a loved one in their final hours?

Studies show that hearing is the last sense to fade, so people are urged to keep talking calmly and reassuringly to a dying person as it can bring great comfort even if they do not appear to be responding.

“Many people will be unconscious, not able to be roused – but be mindful they can still hear,” Professor Phillips says.

“As a nurse caring for the person, I let them know when I’m there, when I’m about to touch them, I keep talking to them. And I would advise the same to the family as well.”

On his ICU ward, Professor Hillman encourages relatives to “not be afraid of the person on all these machines”.

“Sit next to them, hold their hands, stroke their forehead, talk to them about their garden and pets and assume they are listening,” he says.

Remember that while the physical or mental changes can be distressing to observe, they’re not generally troubling for the person dying. Once families accept this, they can focus on being with their dying loved one.

Professor Boughey says people should think about how the person would habitually like them to act.

“What would you normally do when you’re caring for your loved one? If you like to hold and touch and communicate, do what you would normally do,” he says.

Other things that can comfort a dying person are playing their favourite music, sharing memories, moistening their mouth if it becomes dry, covering them with light blankets if they get cold or damp cloths if they feel hot, keeping the room air fresh, repositioning pillows if they get uncomfortable and gently massaging them. These gestures are simple but their significance should not be underestimated.

What is the moment of death?

In Australia, the moment of death is defined as when either blood circulation or brain function irreversibly cease in a person. Both will eventually happen when someone dies, it’s just a matter of what happens first.

Brain death is less common, and occurs after the brain has been so badly damaged that it swells, cutting off blood flow, and permanently stops, for example following a head injury or a stroke.

The more widespread type of death is circulatory death, where the heart comes to a standstill.

After circulation ceases, the brain then becomes deprived of oxygenated blood and stops functioning.

The precise time it takes for this to happen depends on an individual’s prior condition, says intensive care specialist Dr Matthew Anstey, a clinical senior lecturer at University of Western Australia.

“Let’s say you start slowly getting worse and worse, where your blood pressure is gradually falling before it stops, in that situation your brain is vulnerable already [from reduced blood flow], so it won’t take much to stop the brain,” Dr Anstey says.

“But if it’s a sudden cardiac arrest, the brain could go on a bit longer. It can take a minute or two minutes for brain cells to die when they have no blood flow.”

This means, on some level, the brain remains momentarily active after a circulatory death. And while research in this space is ongoing, Dr Anstey does not believe people would be conscious at this point.

“There is a difference between consciousness and some degree of cellular function,” he says. “I think consciousness is a very complicated higher-order function.”

Cells in other organs – such as the liver and kidneys – are comparatively more resilient and can survive longer without oxygen, Dr Anstey says. This is essential for organ donation, as the organs can remain viable hours after death.

In a palliative care setting, Professor Boughey says the brain usually becomes inactive around the same time as the heart.

But he says that, ultimately, it is the brain’s gradual switching off of various processes – including breathing and circulation – that leads to most deaths.

“Your whole metabolic system is run out of the brain… [It is] directing everything.”

He says it’s why sometimes, just before death, a person can snap into a moment of clarity where they say something to their family. “It can be very profound … it’s like the brain trying one more time.”

What does a dead person look like?

“There is a perceptible change between the living and dying,” Professor Boughey says.

“Often people are watching the breathing and don’t see it. But there is this change where the body no longer is in the presence of the living. It’s still, its colour changes. Things just stop. And it’s usually very, very gentle. It’s not dramatic. I reassure families of that beforehand.”

A typical sign that death has just happened, apart from an absence of breathing and heartbeat, is fixed pupils, which indicate no brain activity. A person’s eyelids may also be half-open, their skin may be pale and waxy-looking, and their mouth may fall open as the jaw relaxes.

Professor Boughey says that only very occasionally will there be an unpleasant occurrence, such as a person vomiting or releasing their bowels but, in most cases, death is peaceful.

And while most loved ones want to be present when death occurs, Professor Boughey says it’s important not to feel guilty if you’re not because it can sometimes happen very suddenly. What’s more important is being present during the lead-up.

What happens next?

Once a person dies, a medical professional must verify the death and sign a certificate confirming it.

“It’s absolutely critical for the family to see … because it signals very clearly the person has died,” says Professor Boughey. “The family may not have started grieving until that point.”

In some cases, organ and tissue donation occurs, but only if the person is eligible and wished to do so. The complexity of the process means it usually only happens out of an intensive care ward.

Professor Boughey stresses that an expected death is not an emergency – police and paramedics don’t need to be called.

After the doctor’s certificate is issued, a funeral company takes the dead person into their care and collects the information needed to register the death. They can also help with newspaper notices or flowers.

But all of this does not need to happen right away, Professor Boughey says. Do what feels right. The moments after death can be tranquil, and you may just want to sit with the person. Or you might want to call others to come, or fulfil cultural wishes.

“There is no reason to take the body away suddenly,” Professor Boughey says.

You might feel despair, you might feel numb, you might feel relief. There is no right or wrong way to feel. As loved ones move through the grieving process, they are reminded support is available – be it from friends, family or health professionals.

Complete Article HERE!