Will Machines Be Able to Tell When Patients Are About to Die?

The doctor-patient relationship—the heart of medicine—is broken: Doctors are too distracted and overwhelmed to truly connect with their patients, and medical errors and misdiagnoses abound. In Deep Medicine, physician Eric Topol reveals how artificial intelligence can help.

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A few years ago, on a warm sunny afternoon, my 90-year-old father-in-law was sweeping his patio when he suddenly felt weak and dizzy. Falling to his knees, he crawled inside his condo and onto the couch. He was shaking but not confused when my wife, Susan, came over minutes later, since we lived just a block away. She texted me at work, where I was just finishing my clinic, and asked me to come over.

When I got there, he was weak and couldn’t stand up on his own, and it was unclear what had caused this spell. A rudimentary neuro exam didn’t show anything: his speech and vision were fine; muscle and sensory functions were all OK save for some muscle trembling. A smartphone cardiogram and echo were both normal. Even though I knew it wouldn’t go over too well, I suggested we take him to the emergency room to find out what the problem was.

John, a Purple Heart–decorated World War II vet, had never been sick. Only in recent months had he developed some mild high blood pressure, for which his internist had prescribed chlorthalidone, a weak diuretic. Otherwise, his only medicine over the years was a preventive baby aspirin every day. With some convincing he agreed to be seen, so along with his wife and mine, we drove over to the local ER. The doctor there thought he might have had some kind of stroke, but a head CT didn’t show any abnormality. But then the bloodwork came back and showed, surprisingly, a critically low potassium level of 1.9 mEq/L—one of the lowest I’ve seen. It didn’t seem that the diuretic alone, which can cause less extreme reduction in potassium, could be the culprit. Nevertheless, John was admitted overnight just to get his potassium level restored by intravenous and oral supplement.

All was well until a couple of weeks later, when he suddenly started vomiting bright red blood. He was so unwilling to be sick that he told his wife not to call Susan. But she was panicked and called Susan anyway. Again, my wife quickly arrived on the scene. There was blood everywhere, in the bedroom, in the living room, and bathroom. Her father was fully alert despite the vomiting and a black, tarry stool, both of which were clear indications that he was having a major gastrointestinal bleed. He needed to go to the ER again. At the hospital a few hours later, after an evaluation and a consultation with a GI specialist, an urgent endoscopy showed my father-in-law had esophageal varices—a network of abnormal blood vessels—that were responsible for the bleeding.

To do the procedure of localizing the source of bleeding, John was anesthetized and given fentanyl, and when he finally got to a hospital room in the evening, he could barely say a few words. Soon thereafter he went into a deep coma. Meanwhile his labs came back: his liver function tests were markedly abnormal, and his blood ammonia level was extremely high. An ultrasound showed a cirrhotic liver. We quickly came to the realization that the esophageal varices were secondary to end-stage liver disease. A man who had been perfectly healthy for 90 years all of a sudden was in a coma with a rotted liver. He was receiving no intravenous or nutritional support, but he was receiving lactulose enemas to reduce his blood ammonia level from the liver failure. His prognosis for any meaningful recovery was nil, and the attending doctor and the medical residents suggested that we classify him as a do-not-resuscitate order.

Arrangements were made over the next few days for him to come to our house with hospice support, so he could die at home. Late on a Sunday night, the night before we were to take my father-in-law home to die, my wife and daughter went to visit him. They both had been taught “healing touch” and, as an expression of their deep love, spent a few hours talking to him and administering this spiritual treatment as he lay comatose.

On Monday morning, my wife met with the hospice nurse outside the hospital room. Susan told the nurse that, before they went over the details, she wanted to go see her father. As Susan hugged him and said, “Dad, if you can hear me, we’re taking you home today.” John’s chest heaved; he opened his eyes, looked at her, and exclaimed, “Ohhhhhhh.” She asked him if he knew who she was, and he said, “Sue.”

If there was ever a family Lazarus story, this was it. Everything was turned upside down. The plan to let him die was abandoned. When the hospice transport crew arrived, they were told the transfer plan was ditched. An IV was inserted for the first time. The rest of the family from the East Coast was alerted of his shocking conversion from death to life so that they could come to visit. The next day my wife even got a call on her cell phone from her father asking her to bring him something to eat.

My lasting memory of that time is taking John on a wheelchair ride outside. By then he’d been in the hospital for 10 days and, now attached to multiple IVs and an indwelling Foley catheter, was as pale as the sheets. Against the wishes of his nurses, I packaged him up and took him in front of the hospital on a beautiful fall afternoon. We trekked down the sidewalk and up a little hill in front of the hospital; the wind brought out the wonderful aroma of the nearby eucalyptus trees. We were talking, and we both started to cry. I think for him it was about the joy of being alive to see his family. John had been my adopted father for the past 20 years, since my father had died, and we’d been very close throughout the nearly 40 years we had known each other. I never imagined seeing him sick, since he had always been a rock. And now that he had come back to life, compos mentis, I wondered how long this would last. The end-stage liver disease didn’t make sense, since his drinking history was moderate at worst. There was a blood test that came back with antibodies to suggest the remote possibility of primary biliary cirrhosis, a rare disease that didn’t make a lot of sense to find in a now 91-year-old man (the entire family had gotten to celebrate his birthday with him in the hospital). Uncertainties abounded.

He didn’t live much longer. There was debate about going to inject and sclerose the esophageal varices to avoid a recurrent bleed, but that would require another endoscopy procedure, which nearly did him in. He was about to be discharged a week later when he did have another bleeding event and succumbed.

What does this have to do with deep changes with AI? My father-in-law’s story intersects with several issues in healthcare, all of them centering on how hospitals and patients interact.

The most obvious is how we handle the end of life. Palliative care as a field in medicine is undergoing explosive growth already. It is going to be radically reshaped: new tools are in development using the data in electronic health records to predict time to death with unprecedented accuracy while providing the doctor with a report that details the factors that led to the prediction. If further validated, this and related deep learning efforts may have an influence for palliative care teams in more than 1,700 American hospitals, about 60 percent of the total.

There are only 6,600 board certified palliative-care physicians in the United States, or only one for every 1,200 people under care, a situation that calls out for much higher efficiency without compromising care. Less than half of the patients admitted to hospitals needing palliative care actually receive it. Meanwhile, of the Americans facing end-of-life care, 80 percent would prefer to die at home, but only a small fraction get to do so—60 percent die in the hospital.

A first issue is predicting when someone might die—getting that right is critical to whether someone who wants to die at home actually can. Doctors have had a notoriously difficult time predicting the timing of death. Over the years, a screening tool called the Surprise Question has been used by doctors and nurses to identify people nearing the end of life—to use it, they reflect on their patient, asking themselves, “Would I be surprised if this patient died in the next 12 months?” A systematic review of 26 papers with predictions for over 25,000 people, showed the overall accuracy was less than 75 percent, with remarkable heterogeneity.

Anand Avati, a computer scientist at Stanford, along with his team, published a deep learning algorithm based on electronic health records to predict the timing of death. This might not have been clear from the paper’s title, “Improving Palliative Care with Deep Learning,” but make no mistake, this was a dying algorithm. There was a lot of angst about “death panels” when Sarah Palin first used the term in 2009 in a debate about federal health legislation, but that was involving doctors. Now we’re talking about machines. An 18-layer DNN learning from the electronic health records of almost 160,000 patients was able to predict the time until death on a test population of 40,000 patient records, with remarkable accuracy. The algorithm picked up predictive features that doctors wouldn’t, including the number of scans, particularly of the spine or the urinary system, which turned out to be as statistically powerful, in terms of probability, as the person’s age. The results were quite powerful: more than 90 percent of people predicted to die in the following three to twelve months did so, as was the case for the people predicted to live more than 12 months. Noteworthy, the ground truths used for the algorithm were the ultimate hard data—the actual timing of deaths for the 200,000 patients assessed. And this was accomplished with just the structured data in the electronic records, such as age, what procedures and scans were done, and length of hospitalization. The algorithm did not use the results of lab assays, pathology reports, or scan results, not to mention more holistic descriptors of individual patients, including psychological status, will to live, gait, hand strength, or many other parameters that have been associated with life span. Imagine the increase in accuracy if they had—it would have been taken up several notches.

An AI dying algorithm portends major changes for the field of palliative care, and there are companies pursuing this goal of predicting the timing of mortality, like CareSkore, but predicting whether someone will die while in a hospital is just one dimension of what neural networks can predict from the data in a health system’s electronic records. A team at Google, in collaboration with three academic medical centers, used input from more than 216,000 hospitalizations of 114,000 patients and nearly 47 billion data points to do a lot of DNN predicting: whether a patient would die, length of stay, unexpected hospital readmission, and final discharge diagnoses were all predicted with a range of accuracy that was good and quite consistent among the hospitals that were studied. A German group used deep learning in more than 44,000 patients to predict hospital death, kidney failure, and bleeding complications after surgery with remarkable accuracy.

DeepMind AI is working with the US Department of Veterans Affairs to predict medical outcomes of over 700,000 veterans. AI has also been used to predict whether a patient will survive after a heart transplant and to facilitate a genetic diagnosis by combining electronic health records and sequence data. Mathematical modeling and logistic regression have been applied to such outcome data in the past, of course, but the use of machine and deep learning, along with much larger datasets, has led to improved accuracy.

The implications are broad. As noted physician-author Siddhartha Mukherjee reflected, “I cannot shake some inherent discomfort with the thought that an algorithm might understand patterns of mortality better than most humans.” Clearly, algorithms can help patients and their doctors make decisions about the course of care both in palliative situations and those where recovery is the goal. They can influence resource utilization for health systems, such as intensive care units, resuscitation, or ventilators. Likewise, the use of such prediction data by health insurance companies for reimbursement hangs out there as a looming concern.

Going back to my father-in-law’s case, his severe liver disease, which was completely missed, might have been predicted by his lab tests, performed during his first hospitalization, which showed a critically low potassium level. AI algorithms might have even been able to identify the underlying cause, which remains elusive to this day. My father-in-law’s end-of-life story also brings up many elements that will never be captured by an algorithm. Based on his labs, liver failure, age, and unresponsiveness, his doctors said he would never wake up and was likely to die within a few days. A predictive algorithm would have ultimately been correct that my father-in-law would not survive his hospital stay.

But that doesn’t tell us everything about what we should do during the time in which my father-in-law, or any patient, would still live. When we think of human life-and-death matters, it is hard to interject machines and algorithms—indeed, it is not enough. Despite the doctors’ prediction, he came back to life and was able to celebrate his birthday with his extended family, sharing reminiscences, laughter, and affection. I have no idea whether human healing touch was a feature in his resurrection, but my wife and daughter certainly have their views on its effect. But abandoning any efforts to sustain his life at that point would have preempted the chance for him to see, say good-bye to, and express his deep love for his family. We don’t have an algorithm to say whether that’s meaningful.

Complete Article HERE!

Music therapy ministers to patient needs in ‘winter of life’

In this Feb. 4, 2019 photo, Donald Granstaff, 92, sings Louis Armstrong’s “On the Sunny Side of the Street” at his Princeton, Ky., home with board certified music therapist Kenna Hudgins, a contractor with Pennyroyal Hospice. Hudgins designs Donald’s weekly music therapy sessions to help decrease any feelings of isolation.

By MICHELE VOWELL

“At 92 years old, I finally learned to do as I’m told,

The sun comes up, the sun goes down,

The earth keeps goin’ ’round and ’round.

I’m content where I am.

In the winter of life, I do the best that I can.”

Princeton resident Donald Granstaff spends much of his time these days looking back on his life.

The 92-year-old husband, father, Navy veteran, musician, preacher and missionary served his country and God for decades around the globe. Today, Donald often reflects on those times from his bedroom while under the care of Pennyroyal Hospice.

“I was thinking the last few days, what have I accomplished?” he said Monday afternoon. “Around the world twice. Haiti and the West Indies — all that. And all I can come up with is the guys that I prayed with and I lead them to the Lord. And, I suppose that’s what it’s all about.”

To help Donald face the winter of his life, Kenna Hudgins, board certified music therapist, brings her keyboard, drums, guitar and even a tambourine, weekly to share an hour of tunes with the elderly patient at his home. Hudgins and Donald sing familiar songs and play the instruments together in an effort to make his transition easier.

“The main goal I initially assessed (for Donald) was for anticipatory grief — to work through the acceptance of the fact that we are terminal and now on hospice (care),” she said. “He’s very aware, so day after day just knowing that it’s coming and there will be changes and decline. Life is hard. Music therapy offers a way to process that musically.”

Music therapy

“Anyone who responds to music can benefit from music therapy, especially in hospice,” Hudgins said. “Music plays a role in all of our lives. It always has. It’s why we can watch a movie and feel scared, feel love or feel emotion. Music causes neurologic response — it affects our whole brain — in multiple areas simultaneously. Because of that, music therapy is not about being a musician. It’s not about understanding music. It’s about just responding.”

Hudgins, who is a contractor with Pennyroyal Hospice, uses her skills as a board certified music therapist to address the needs of patients in Christian, Todd, Trigg, Lyon and Caldwell counties in western Kentucky.

“Hospice is very grounding,” Hudgins said. “Every day that you go into somebody’s house and they’re dealing with their struggles, it brings you back to true purposes — day-to-day tasks and stresses don’t matter as much because life is short. Personally, it’s just a very rewarding field.”

Communicating with hospice social workers, Hudgins identifies patients who may benefit from music therapy. She asks family members for 10 minutes of their time to visit their loved one and share a song or two with them to assess his or her responses.

“I don’t usually talk much about it, I just let them experience it,” she said, smiling. “I’ve never been told not to come back and it’s never just 10 minutes.”

Hudgins said everyone has memories associated with certain music.

“A therapist’s job is to find that music that is significant to that person,” she said.

Working with some patients can be difficult, Hudgins said, because of the emotions tied to facing the end of life, but sharing music with them is rewarding.

“Music is so joyful,” she said. “When I get to bring joy to a family and a loved one … that’s not a sad job. … I’m really blessed to just be a part of their lives. To bring joy is just huge.”

Music with Donald

After working with Donald for several weeks, Hudgins said her therapy goals for him shifted to decreasing his feelings of isolation.

“I try to get as much participation from him physically, whether that’s playing the keyboard or drumming,” she said. “As his hands might get more stiff, clapping — anything to get his body engaged. If his body is unable, then just getting him to verbally participate. That, in and of itself, will decrease isolation.”

In Monday’s music therapy session, Hudgins wanted Donald to sing some love songs with her while playing instruments.

“With Valentine’s day coming up next week, we’re going to do sweetheart songs,” she said.

“The old sweetheart songs,” Donald said. “That’s the best kind, the old ones.”

The duo harmonized to Bing Crosby’s “Let Me Call You Sweetheart” as Hudgins played the keyboard.

“Let me call you sweetheart

I’m in love with you

Let me hear you whisper

That you love me too …”

In the middle of the song, Don stopped singing to share a childhood memory.

“I used to hear my dad sing that one all the time,” Donald said.

“Yeah? Did he sing it to your mom?” Hudgins said.

“Yeah. He worked in vaudeville for a long time,” he said. “He played mandolin and violin, and he sang all the time. He loved to sing.”

“Good memories,” Hudgins said.

Donald married his own sweetheart Betty 68 years ago. They exchanged vows on June 16, 1950.

“It was my birthday,” he said.

In the living room, Betty sat on the couch quietly listening to her husband sing and play music with Hudgins. She said music therapy is a comfort to her and Donald, who played several instruments, including the organ, keyboard and drums since he was a boy.

“I love that he’s even trying,” she said after the session. “I think this is a good thing for him because he was a musician. It meant so much to his heart. That was his life.”

Back in his bedroom, a second song, Frank Sinatra’s “My Funny Valentine,” also sparked Donald’s memories of his father.

“That’s a good song,” he said. “He used to sing songs like it.”

“I’m glad I’m making you think about your dad. I haven’t heard you talk a lot about him,” Hudgins said.

“He was quite a man. Yeah boy! He was something else,” Donald said, remembering times they would go fishing together at Lake Barkley. “He owned a couple of boats. Nice, big boats. And I used to go with him on the boats.”

Midway through the hour, Hudgins sang the chorus to a song about Donald’s life they wrote together after three or four music therapy sessions.

“I am a husband, a father, a preacher, a teacher

A born-again, saved-by-grace man …”

“When I came out of college, I was a really smooth character,” Donald said, listening to the lyrics. “I was fast and furious, and I didn’t stay that way very long. I was saved in June 1959, and before that I was a ‘religious’ human being …”

Early in their marriage, Donald and Betty took their five children to the mission field in the British Isles of the Caribbean and later in Haiti. Donald also helped another missionary build a radio station in Dominica. When they moved back to the U.S., he pastored a few churches in McMinnville, Tennessee, and Princeton. For a time, he often played the organ in the Barkley Lodge dining room.

“He was a musician from the time he was little,” Betty said. “Every church we were a part of he would play the organ until he wasn’t able to physically.”

Now, Betty said, some days can be difficult.

“Sometimes I have an overwhelming sadness. It’s hard to see him not be able to do anything,” Betty said, crying. “God love him, he never complains. Never, ever complains about anything. He’s just always up and very sweet. He’s still a testimony to everybody that visits him because of his attitude.”

Happy Trails

To close out Monday’s music therapy session, Donald and Hudgins sang the Roy Rogers and Dale Evans classic, “Happy Trails.”

“Who cares about the clouds when we’re together?

Just sing a song, and bring the sunny weather.

Happy trails to you,

Until we meet again.”

“I think it’s good. It can help lift you up,” Donald said of music therapy with Hudgins. “I’m not like some guys. Some guys get tired of it, throw their hands up and leave. I’ll try.”

Hudgins said Donald “still has a lot of life in him.”

“Whether (the patient) is a musician or not, music is a way to connect with the outside world. It can pull you into different areas of your own life, make you feel alive again,” she said.

Part of Donald’s legacy will be the song he and Hudgins wrote together.

“We have created a tangible song that he can leave for his family,” she said. “His family are musicians so they can actually play that song and play it with him.”

The chorus is:

“I am a husband, a father, a teacher, a preacher

A born-again, saved-by-grace man.

I’m a musician, woodworker, a servant, missionary

But most of all I’m just a good ole boy from Kentucky.”

Donald and Hudgins plan to meet next week for music therapy.

“Every one of us has had music in our lives that has impacted us,” Hudgins said. “It’s my job to figure out what is going to impact someone at the end of their life for the best end-of-life experience possible.”

Complete Article HERE!

Shaina Garfield redesigns death with eco-friendly macramé coffin

LEAVES from Shaina Garfield on Vimeo.

By kieron marchese 

soon after shaina garfield realised her vision for an eco-friendly coffinshe noticed that what she had actually made was a coffin for herself. after being diagnosed with chronic lyme disease four years ago, the prospect of death caused a preoccupation that would eventually inspire her work as an industrial designer. as she tackled the prospect of dying, she discovered an interesting contradiction between something that essentially brings people closer to earth, and the harmful impact death practices have on the planet. after a closer look, traditional burials, embalming and cremation, all involved the pollution of nasty chemicals and toxins.

shaina garfield spoke at design indaba 2019, a three-day conference bringing together the world’s leading creatives to share their work

speaking at design indaba 2019 shaina notes that we’ve become so far removed from nature as a result of human exceptionalism – the belief that humans are the most important entities in the universe. so she came up with ‘LEAVES’, a textile coffin built from sustainable materials, that hopes to bring us closer to the planet that we live on.

LEAVES is a textile coffin built from sustainable materials

composed of a netting that wraps around the deceased, LEAVES works to make the burial process a much greener ritual. the design uses rope which has been treated with a dye and embedded with spores, encouraging fungus growth that speeds up decomposition and eats any toxins in the body. a tree is then planted on the burial site, making the most of this nutrient rich soil. instead of cemeteries, shaina imagines luscious areas where nature is representative of the greater purpose our bodies can have.

as much as it lessons the impact humans make on the planet, LEAVES also promotes positive discussions around death. drawing from funeral practices around the world, shaina considered ways in which her designs could help to support people with their grief. she imagines those mourning the death of someone coming together to tie the knots necessary to make the coffin, a meditative experience that intends to help with emotional healing.

those mourning the death of someone can come together to tie the knots necessary to make the coffin

shaina describes herself as an advocate celebrating people and the earth‘, and it’s this relationship that forms the basis of her work. in a powerful description she exposes the reality that at death we are actively disconnected from nature. we choose at all costs to ‘keep ourselves in a domestic dream‘ and in the process, our consideration for the planet is nil. the natural resources it takes to make coffins, the toxins that are emitted into the air during cremation, and the chemicals seeping out of graveyards because of embalming, are all cause to believe that our attitudes towards death and the planet we live on are wrong.

the design uses rope which has been treated with a dye and embedded with spores
fungus growth that speeds up decomposition and eats any toxins in the body
shaina describes herself as an ‘advocate celebrating people and the earth‘
shaina imagines luscious areas where nature is representative of the greater purpose our bodies can have.

Complete Article HERE!

A doctor in California used a video-link robot to tell a patient he was going to die.

The man’s family is upset

By Dakin Andone and Artemis Moshtaghian

Preparing for the death of a loved one is difficult no matter the circumstances.

But Annalisia Wilharm said she never expected a doctor would deliver the bad news about her grandfather via a video screen on a robot.

Wilharm was sitting by her grandfather’s bedside in the ICU of the Kaiser Permanente Medical Center in Fremont, California, last Monday night when the machine rolled into their room and a doctor, appearing via live video link, offered his grim prognosis. Her grandfather Ernest Quintana, 78, died the next day.

“I think they should have had more dignity and treated him better than they did,” Wilharm told CNN. “No granddaughter, no family member should have to go through what I just did with him.”

Wilharm told CNN her family knew that her grandfather would die soon. But they’re angered by the way the situation was handled and how the news was delivered. She said she and her family hope no one else receives the same treatment.

Ernest Quintana died after being told by a doctor who visited him via robot that there were no more treatment options left.

“I was so scared for him and disappointed with the delivery,” Wilharm said, choking up. “And I could tell by the look on his face what that did to him.”

A spokeswoman for the hospital offered “sincere condolences to the family” in a statement sent to CNN.
“We take this very seriously and have reached out to the family to discuss their concerns,” said Michelle Gaskill-Hames, a senior vice president and area manager of Kaiser Permanente Greater Southern Alameda County.

“Our physicians and nurses were in regular, in-person communication with the patient and family about his condition from the moment he entered our hospital,” she added. “The evening video tele-visit was a follow-up to earlier physician visits — it did not replace previous conversations with patient and family members and was not used in the delivery of the initial diagnosis.”

For years, Quintana had lived with chronic obstructive pulmonary disease, a progressive lung disease that make makes it hard to breathe. It includes emphysema and chronic bronchitis.

Last Monday, doctors at the hospital conducted tests to assess the state of Quintana’s lungs. That evening, Wilharm told her mother and grandmother — Quintana’s wife of 58 years — that the pair should go home and get some rest.
Soon after a robot with a video screen came into the room, accompanied by a nurse who remained silent. A doctor on the screen began speaking to them.

Wilharm said she had no idea who the doctor was or where he was located.

She filmed the interaction on her phone as the doctor relayed the results of her grandfather’s tests.
In the footage viewed by CNN, the doctor on the screen tells Quintana, “Unfortunately there’s nothing we can treat very effectively.”

The doctor explains they can give Quintana morphine to make him more comfortable, but that would make breathing more difficult.

Wilharm then tells her grandfather the doctor is recommending hospice care at home.

“You know, I don’t know if he’s going to get home,” the doctor says, adding that the best treatment plan at that point was to begin focusing on Quintana’s comfort.

Wilharm told CNN that at that point she had to call her mother and grandmother so they could get back to the hospital.

“It didn’t matter (to the hospital) that his wife of 58 years wasn’t there for that,” she said.

Wilharm told CNN that her family was under no illusions about her grandfather’s condition.
“We knew that we were going to lose him,” Wilharm told CNN in a phone interview Saturday. “Our point is the delivery (of the news). There was no compassion.”

When her grandmother returned to the hospital, she asked the nurses about the robot. According to Wilharm, they explained the hospital was small and the robot was used to make rounds at night.

Gaskill-Hames, the hospital spokeswoman, said the health care provider is “continuously learning how best to integrate technology into patient interactions.”

“In every aspect of our care, and especially when communicating difficult information, we do so with compassion in a personal manner,” she said, adding that the term “robot” is “inaccurate and inappropriate.”

“This secure video technology is a live conversation with a physician using tele-video technology, and always with a nurse or other physician in the room to explain the purpose and function of the technology,” Gaskill-Hames added. It “allows a small hospital to have additional specialists such as a board-certified critical care physician available 24/7, enhancing the care provided and bringing additional consultative expertise to the bedside.”

Wilharm told CNN that a doctor had visited Quintana in person earlier in the day.

Wilharm said the in-person doctor was “very sweet” and held her grandfather’s hand as she spoke with him about hospice care and his options.

Gaskill-Hames said the hospital does not encourage the use of technology to replace personal interactions between patients and health care workers.

“We understand how important this is for all concerned, and regret that we fell short of the family’s expectations,” she said.

Wilharm agrees.

“That was one of the worst days of my life,” she said.

Complete Article HERE!

A matter of life and death

Dr. Steve Hadland learned over time to appreciate the “majesty and mystery” of death.

By Ellen Shehadeh

Dr. Steve Hadland began his medical career as an emergency room physician, fixing people and saving lives at all costs. These days he treasures his work as a hospice physician associated with Hospice of Petaluma, tending to the terminally ill and allowing them to die in comfort. Two extremes, one might say, but understandable given the intervening events in his life.

Steve’s practice melds a deep belief in social justice, reverence for life in all forms and enduring, self-described conservative views about end-of-life practices. His youthful face and genial manner, combined with an easy laugh and a soothing voice, belie the depth of his thinking, intellect and perceptions. He is informed not only by medical writings but also by psychology, literature, philosophy and classical music. One feels both calm and welcome in his presence.

Steve was the youngest in a conservative family growing up in Chicago. He attended university in Iowa City, studying astrophysics as a stepping stone to an astronaut program, and later majored in neuroscience. “University was a political and social awakening, as well as an intellectual one,” he says. He participated in marches and protests against the Vietnam War and for civil rights.

He longed to break out even further from his roots, however, and what better place than California, where “legend loomed for surfing and blondes.” He never quite managed the surfing thing, but wasted no time marrying his first wife, a blonde, during the summer of love, which coincided with his first year at Stanford Medical School. Their marriage of seven years included major involvements in the civil rights, anti-war and human potential movements.

All along, he had thoughts and profound feelings about end-of-life experiences, in part influenced by a Tolstoy novella, “The Death of Ivan Ilyich,” which he read in a death and dying course at Stanford. “It inspired me then, and continues to inspire me, year after year,” he says of the book, which he recommends “to anyone who really wants to know about what it’s like to die.”

Steve’s first job out of medical school, in 1972, was in a Kaiser emergency room. The nurses recognized his empathic nature and would steer the most difficult patients his way. Yet he recoiled at the Herculean efforts by staff to revive a dying patient, “all the excitement, the IVs,” and how quickly and “disrespectfully” staff abandoned a corpse when resuscitation efforts failed. At the time, there was no such thing as “do not resuscitate” or hospice.

Steve sought a different kind of medical experience and, in the fall of 1974, he arranged an interview with Dr. Michael Whitt in Point Reyes Station. He remembered the area from a drive many years before; “It cast a spell on me,” he says. Dr. Whitt’s liberal medical practice included home births, which at the time were popular in alternative communities, but Steve was stunned that he would deliver babies without liability insurance.

Steve’s conservative orientation and lack of maturity led him to decline a job offer by Dr. Whitt but, many years later, he would run a small integrative medical practice and pain management clinic out of his Point Reyes Station home. Ironically, he never secured liability insurance. “The influence of West Marin,” he quips.

Newly divorced in 1978, Steve encountered a single mother of three from Holland who was working as a Kaiser receptionist to pay her way through nursing school. They married two years later and, after 38 years, “it looks like it’s going the distance,” he says, laughing. Anneke van der Veen became an emergency room nurse, but they never worked together professionally, realizing the potential pitfalls of mixing business with pleasure.

Steve had traveled to England in 1978 to visit the first modern hospice. Although he was impressed with the approach, “I could tell I wasn’t ready for it,” he says. It was 12 years later that he helped start a hospice in Santa Clara, which he ran for five years along with an oncologist friend. He explains: “The world said, ‘You seem to be ready.’”

As society’s views about death and dying dramatically changed over the years, so clearly have Steve’s. Fifty years ago, death was a taboo subject and doctors rarely broached it with their terminal patients or even gave them an honest diagnosis. Now people take advantage of many choices, like refusing to eat and drink or using lethal medications now sanctioned by law. In California, the End of Life Option Act allows a patient to self-administer a lethal cocktail, but only after being judged by two physicians to be of sound mind and six months from death.

Some people object to the strictness of this law, which does not allow someone to assist in a patient’s suicide if the patient is physically or mentally unable to self-administer, even if it had been the patient’s expressed wish. In some states such assistance could be considered euthanasia or even murder.

Steve agrees with this self-described conservative view. “I don’t think it’s a bad thing; we don’t know what’s going on [inside their head]” or what kind of life these patients, some with Alzheimer’s and dementia, might have that we cannot fathom, he says. Surprisingly for a hospice worker, he was still opposed to the law when it was passed in July 2017, because “it’s a slippery slope.” How slippery? He cites a law in the Netherlands that now allows not only terminally ill patients but also depressed people to legally receive the fatal cocktail.

Steve explained that under California law, doctors may not legally list the cause of death as suicide when a patient has taken his or her own life. But the law “does allow a reference to the use of aid-in-dying meds as a contributing factor in the death, including the underlying fatal illness.” Steve, as a personal practice, does not include aid-in-dying medicines on the death certificate “to protect the patient from any backlash involving the choice of an induced death.”

Today Steve appreciates what he calls the “majesty and mystery” of death. Along with survivors, he participates in ancient rituals—“beautiful ceremonies” like washing and dressing the body—and finds it deeply humbling.

Steve is a spiritual man. He is influenced by the teachings of Jean Klein, a European who had an awakening in India. Although it is difficult to summarize Klein’s ideas, one important teaching is, “I am not identical with my thought process.” Steve believes that most of what one knows can be understood through other means, “coming from the heart and a sense of pure being.” This understanding has given him confidence to communicate with a dying person without words. “There is something in me that I know will make a difference. I am not anxious or worried, and am not in my head,” he explains.

About society’s recent openness to discussing death and dying, Steve cannot be more positive. It used to be, “If I don’t talk about it, it won’t happen.” The effect of the hospice movement has been to “lift the lid about frank, open discussions about death and dying. It helps people plan and frees them from living in a false reality, or a web of lies,” he says.

Naturally, one so intimate with death has opinions and thoughts about what awaits us all in the end. And what is the best death, to go quickly or to linger for a while? Not surprisingly, Steve believes that for himself, the ideal death would be when you know it is coming. “You get to finish your life, and say your goodbyes,” he says.

Steve also believes in a “continuity of consciousness.” This idea came to him intuitively years ago, after the death of his beloved dog, Misha, whose picture is prominently displayed on his office wall among other family photos. He tells this story, choking back tears.

“As I stood over the grave, I called out loud, ‘Where have you gone?’

A small voice inside asked, ‘Did you love me?’

‘Yes.’ ‘Do you still love me?’

‘Yes.’

‘Then that’s where I am.’”

Steve says, “My co-workers, patients and families living with the experience of dying have taught me much of what I know about love. Not the romantic love, of course, but something more encompassing, a feeling of compassion and connection with others that grows into this deep feeling of commonality and love.”

Complete Article HERE!

The animal lover giving a peaceful end of life to terminally ill creatures

– while defying death herself

 


 
Alexis Flemming has dedicated herself to giving terminally ill animals the best last days of their lives – despite recently almost dying herself.

The animal lover, who lives with autoimmune diseases, was recently given only a few days to live before an operation helped control her condition.

Now recovering, she is back giving care to the variety of animals she has taken in at her animal hospice and sanctuary in Scotland.

She was inspired to set up the Maggie Flemming Animal Hospice in 2016 after her beloved bullmastiff Maggie died suddenly at the vets.

Alexis’s beloved bullmastiff Maggie died while away from her at the vets in 2016.

“Not being able to be with someone you love when they die can be quite traumatic,” she says.

As she walks through the sanctuary to the hospice, she knows every pig, sheep and chicken by name.

She wants all the animals to have a dignified end.

“They come here to spend however long they have left, a few days, a few weeks – sometimes even a few years – and I do end-of-life care to give them peace, comfort and friendship,” she says.

Alexis works hard to see which activities the animals enjoy most.

At the hospice, situated just outside Kirkcudbright in Dumfries and Galloway, Alexis makes a point of discovering what the animals like.

For some it’s sweets and reading. For her 19-year-old pal Bran, it’s adventures in the car.

“Bran was dumped on the street when he was about 17, he had a tumour on his spleen. Bran came to us with just six weeks to live and that was two and a half years ago,” she explains.

Bran is still going strong at 19, defying the terminal prediction of vets two years ago.

Bran is still going strong but Alexis admits her own health problems have made it harder to keep up with the care demands.

“It’s very hard to deal with that much grief. There was a time last year when I did 10 end-of-life cares in one month, that really took its toll. I was really ill at the end of that because my health isn’t very good anyway,” she says.

Inevitably her own recent doomed diagnosis – while thankfully avoided – has made her re-evaluate her life and work.

Bran enjoys a new lease of life, after being taken in by Alexis, that involves adventures out in the car.

“I almost died twice. Even if you think you’re the most life-grabbing, go-getting person, when you’re told you’ve only got a few days left and you survive that, every day is just… you make the most of it,” she says.

On dealing with the mortality of her farmyard friends, she says: “I know how I felt thinking it was almost my end and I know it’s almost their end so let’s just make the most of it, let’s not hang around and think of the sadness.”

She is now developing what is the first purpose-built animal hospice in the UK. She believes it could be one of the first of its kind in the world.

“We try to never turn anyone away if we can help it, but it’s very important to do end-of-life care properly, so we have very small numbers [and] we only do end-of-life for three animals at any time,” she says.

The passionate animals rights advocate believes “most animals in our society are denied a peaceful life and death”.

But she says she remains focused on helping the animals living out their final days in her care.

“Doing this kind of work you realise anything can happen at anytime and it could be today, it could be tomorrow, it could be a month from now, I just don’t know,” she says. “I try not to dwell on it too much.”

Complete Article HERE!

Sitting Up With the Dead:

Lost Appalachian Burial Customs

By Hope

From the peaks of the Blue Ridge and the Great Smoky Mountains, to the river valleys of the French Broad and Catawba, North Carolina has a long history that is steeped in rich Appalachian traditions. Despite the Hollywood “hillbilly” stereotype, Appalachians carry a sense of pride for their culture, language, and heritage.

Isolated from the outside world, Appalachian regions have long struggled with rough rocky terrain for farming and plagued with poverty. Immigrants from Europe began migrating to the area in the 18th century with a large proportion of the population being Ulster Scots and Scotch-Irish. Many pioneers moved into areas largely separated from civilization by high mountain ridges and our pioneer ancestors were rugged, self-sufficient and brought many traditions from the Celtic Old World that is still a part of Appalachian culture today.

If you grew up Appalachian, you usually had a family relative who was gifted and could foresee approaching death, omens or dreams of things to come.

There was always a granny witch to call on when someone was sick and needed special magic for healing. Superstitions about death were common and were considered God’s will. One thing for sure, no matter how hard you fought it, death always won.

Appalachian folks are no stranger to death. For the Dark Horseman visited so frequently, houses were made with two front doors. One door was used for happy visits and the other door, known as the funeral door, would open into the deathwatch room for sitting up with the dead. Prior to the commercialization of the funeral industry, funeral homes and public cemeteries were virtually nonexistent in the early days of the Appalachian settlers.

For Whom the Bell Tolls…

In small Appalachian villages, the local church bell would toll to alert others a death has occurred. Depending on the age of the deceased, the church bell would chime once for every year of their life they had lived on this earth. Family and friends quickly stop what they were doing and gather at the deceased family’s homestead to comfort loved ones. Women in the community would bring food as the immediate family would make funeral preparations for burial. The men would leave their fields to meet together and dig a hole for the grave and the local carpenter would build a coffin based on the deceased loved one’s body measurements.

Due to the rocky terrain, sometimes dynamite was used to clear enough rock for the body to be buried. Coffins used to be made from trunks of trees called “tree coffins”. Over time, pine boxes replaced the tree coffins. They were lined with cloth usually made from cotton, linen or silk and the outside of the coffin was covered in black material. If a person died in the winter, the ground would be too frozen to dig a grave. In this case, the dead would simply be placed in a protected area outdoors until spring.

After the bell tolls, every mirror in the home would be draped with dark cloth and curtains would be closed. It was believed that by covering the mirror, a returning spirit could not use the looking glass as a portal and would cross over into their new life. The swinging hands on the clock were stopped not only to record the time of death, but it was believed that when a person died, time stood still for them.

Preparing the Body

Before the use of embalming, the burial would be the next day since there were no means of preserving the body. To prepare the body, the deceased would be “laid out” and remained in the home until burial. The body would be placed on a cooling board or “laying out” board. Depending on the family, the “laying out” board might be a door taken off the hinges, a table, ironing board or piece of lumber. Many families had a specific board for the purpose of laying out the body that had been passed down from generations.

The “laying out” board would then be placed on two chairs or sawhorses so the body could be stretched out straight. Depending on what position the person was in when they died, sometimes it was necessary to break bones or soak parts of the body in warm water to get the corpse flat on the board. As rigor mortis began to set in, some folks have actually heard bones cracking and breaking which would cause the corpse to move as it began to stiffen. The board would then be covered with a sheet and a rope was used to tie the body down to keep it straight and to prevent it from suddenly jerking upright.

Post-mortem picture of the body placed on a cooling board or “laying out” board.

Scottish traditions used the process of saining which is a practice of blessing and protecting the body. Saining was performed by the oldest woman in the family. The family member would light a candle and wave it over the corpse three times. Three handfuls of salt were put into a wooden bowl and placed on the body’s chest to prevent the corpse from rising unexpectedly.

Once the body was laid out, their arms were folded across the chest and legs brought together and tied near the feet. A handkerchief was tied under the chin and over the head to keep the corpse’s mouth from opening. To prevent discoloration of the skin, a towel was soaked in soda water and placed over the face until time for viewing. Aspirin and water were also used sometimes to prevent the dead from darkening. If the loved one died with their eyes open, weights or coins were placed over the eyes to close them.

Silver coins or 50 cent pieces were used instead of pennies because the copper would turn the skin green. Once the corpse was in place, the body would then be washed with warm soap and water. Then family members would dress the loved one in their best attire which was usually already picked out by the person before they passed. The body of the dead is never left alone until it was time to take the deceased for burial.

Sitting Up With the Dead

After the body has been prepared, the body is placed in the handmade coffin for viewing and placed in the parlor or funeral room. The custom of “sitting up with the dead” is also called a “Wake”. Most times a handmade quilt would be placed over the body along with flowers and herbs. The ritual of sending flowers to a funeral came from this very old tradition. The aroma from the profusion of flowers around the deceased helped mask the odor of decomposition.

Flowers as a form of grave decoration were not widely used in the United States until after the mid-nineteenth century. In the Southern Appalachians, traditional grave decorations included personal effects, toys, and other items such as shells, rocks, and pottery sherds. Bunches of wildflowers and weeds, homemade plant or vegetable wreaths, and crepe paper flowers gradually attained popularity later in the nineteenth century. Placing formal flower arrangements on graves was gradually incorporated into traditional decoration day events in the twentieth century.

Family members “Sitting Up” with the dead in the parlor or funeral room.

The day after the Wake, the body would be loaded into a wagon and taken to the church for the funeral service. Family and friends walked behind the wagon all dressed in black. The church bell would toll until the casket was brought into the church. This would be the last viewing as friends and family walked past the casket to take a final look at the body. Some would place a variety of objects in the coffin such as jewelry, tobacco, pipes, toys, a bible and every once in an alcoholic beverage.

Today, a strong sense of community continues to dominate Appalachian burial customs even though the modern funeral industry has changed the customs slightly. The social dimension has changed completely since caskets are commercially produced and graves are seldom dug by hand. Modern funeral homes have made the task of burial more convenient but the downside is there is less personal involvement. Personalized care for the dead is an important aspect of family and community life in Appalachia. And we can certainly say for sure that the days of conducting the entire procedure necessary to bury a person, all done by caring neighbors, with no charge involved, are no longer practiced.

Complete Article HERE!