Month: March 2019

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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↩!

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Even in Grief, I Still Have Pride

Being part of the disability community means constantly losing friends and allies. I don’t expect that to change.

By Robyn Powell

“Kristen has passed away.” I’ll never forget learning that my best friend died. I was only 11 years old. We lived in the same town and attended school together. She had spina bifida as well as problems with her kidneys. After years of dialysis, it was kidney failure that ultimately killed Kristen.

Now, at 37, I have lost count of the number of loved ones who have died. I do know that it is well over 20. Friends have died. Colleagues have died. Romantic partners have died. Even my first love died a few years ago. Each year I lose at least a few people I care about, and I don’t expect that to change. The deaths of people close to me are something I have come to accept.

Just last month, my friend Carrie Ann Lucas died after her health insurer refused to cover the medication she needed. Yes, she had a progressive disability but its symptoms were exacerbated because she did not receive adequate health care.

Other pioneers in the disability community, whom I looked up to, also died recently. Dr. Anita Silvers, a professor of philosophy at San Francisco State, died after complications from pneumonia. Professor Mike Oliver from the University of Greenwich in England died after a short illness. Oliver is known for developing the social model of disability.

I was born with arthrogryposis, a disability that affects my muscles and joints. I use a power wheelchair and have limited use of my arms and legs. Being disabled is normal for me. Indeed, it is all I know. It is also something I am incredibly proud of.

But each time a disabled friend dies I find myself questioning many things in my life. And one recurring question is this: How I can I maintain my disability pride when I am always surrounded by death? It is not always easy. In fact, at times it can feel insurmountable. While some of my friends have died because of their disabilities, others have died because of broken systems that devalue the lives of disabled people.

Some disabilities are associated with shorter life expectancies, but many are not. And, because of advances in technology and treatment, people with disabilities once considered terminal are living longer. Stephen Hawking, who lived for decades with A.L.S. proved that. Nevertheless, being part of the disability community means being surrounded not just by the life and support, but by death.

Research shows that people with disabilities die younger than nondisabled peers. Sometimes our life spans are shortened because of our disabilities, but that is not always the case. In one study, researchers found that disabled people are more likely than nondisabled people to die from heart disease, cancer, stroke, respiratory disease, accidents suicides and assaults. And while physical and circumstantial factors are at play, it is often the way we are treated that contributes to early death.

Disabled people encounter significant barriers to accessing health care. We are more likely to die because of police brutality (the rate is especially high for disabled people of color), and more likely to experience violence victimization. Also, disabled people often live in poverty and experience material hardships.

I have been around disabled people my entire life. The disability community is where I feel the most comfortable to be myself. They understand my experiences — both good and bad — and offer great insights without trying to fix me or my disability. They don’t see our disabilities as tragedies or something to be ashamed of. They appreciate how much it sucks when an airline breaks my wheelchair or a personal care assistant doesn’t show up, but they also recognize how important disability pride is.

Being a part of the disability community has made me who I am — and I don’t just mean in the physical sense. I have had beautiful and rich experiences, not in spite of, but because I am disabled. I have met truly amazing people whom I would never know if I weren’t disabled. Having a disability has also informed my life’s work. First as a social worker and now as an attorney and researcher, I have committed myself to fight for disability rights. My disability and the experiences I have had make me better at my work. I likely wouldn’t be in this field if I weren’t disabled, but I am thankful that I get to do this work.

Not everyone understands disability pride, which is apparent when a disabled person dies and nondisabled people nearly always repeat the same ableist remarks: “They are no longer suffering.” “She is now free to run.” “He is finally cured and now dancing among the angels.” I can’t say hearing these things doesn’t get to me; it does. These comments diminish the lives both of the dead and the living. Most of us are fine not running; we are not suffering, and we do not want to be cured.

During difficult times, I sometimes find myself wondering why I allow myself to continue to be surrounded by death. Having disabled friends means frequent loss. Death and disability are uncomfortable bedfellows. But to avoid this constant grieving would mean to rid myself of a community that I love.

In some ways, I believe that being surrounded by death has allowed me to live a more fulfilling life. I try to cherish my time with loved ones, intensely aware that it could be the last time I see them. I also strive to live in the moment, appreciating the little things in life. Because I have experienced so much loss, I know the importance of celebrating the good times.

Death is unavoidable. But as a disabled person, I am all too aware that death and disability are inextricably linked. Because of my disability, I have an enriched life. I have also experienced tremendous heartbreak. In the end, I have come to understand that I will love, and I will grieve. There’s something almost freeing about accepting that harsh reality.

Complete Article ↪HERE↩!

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Here’s What Mortality Can Teach Us about Living in the Moment

“Maybe we need the promise of death to guard against taking life for granted.”

By Sunita Puri

I drove back to my home the next day, pensive. In my kitchen that evening, I picked at a burrito I’d grabbed from a food truck down the street. I drove home starving, but lost my appetite after a few bites. Outside my window, Sunset Boulevard was a river of light, a constant stream of headlights and bike lamps, colorful blinking restaurant signs and fluorescent streetlights. In a shadowed parking lot, dark figures moved quickly toward cars.

Something weighed on me, though I couldn’t articulate it precisely. I wandered around my place, sitting on my couch and moving to a chair, picking up a book and setting it down to watch TV instead. I turned the TV off and considered going to bed early. Maybe a good night’s sleep would fix my restless mind.

And then a question surfaced. What if I suffered a sudden stroke, as Auntie had? Her situation had at first reminded me of my parents’ mortality, but what of my own? Perhaps this crossed my mind because Auntie and I shared a common heritage, and she had suffered a sudden catastrophic event, which could happen to anyone regardless of their age. Maybe the fact that I had faced another transition point, my last week at my first attending job, contributed subconsciously to my mind’s sudden insistence that I consider the meaning of endings. Whatever the reason, I began once again to consider my own answers to the questions I had asked my parents. I knew that I was mortal, that at some point my body would shut down.But though my rational mind knew this, sometimes it felt like mortality didn’t apply to me. I was a doctor. I was there to tend to other people’s mortality. I thought back to all the years I’d clung to the idea of delayed gratification, the times when I’d put my life on hold until I’d completed an educational milestone. If I persisted in my studies, I’d told myself countless times, I’d someday have all the time in the world to enjoy life. I panicked now as I considered what my life would mean if it ended tomorrow in an accident.

What had I learned about death in doing this work? I’d seen that no amount of considering or preparing for it made it easy. Talking about it to prepare frightened loved ones, saying or writing good-byes (if one was lucky and lucid enough to do so), and trying to make peace with a higher power might soothe us and help us. We feared it and sought to control every aspect of it, even considering physician-assisted suicide to give us a sense of agency over an unconquerable aspect of human existence. But if death was not only a medical fact but also a spiritual and sacred passage, then it would always have a certain mystery that was perhaps worth accepting rather than attempting to control. Because we can’t control it. We can’t always anticipate or prepare for it. What we define as a “good death” may not be in the cards for us. But maybe we can use the inevitability of death to live differently. Maybe we need the promise of death to guard against taking life for granted.

I thought back to the many times I feared death as an outcome for my patients, convinced that it was my job to forestall it, to control and manipulate nature. Giving death this much power distorted my view on life—my own, and that of my loved ones and patients. Fighting and fearing death obscured finding meaning in living moments.

What if I regarded my own death with reverence instead of fear? I wondered. Or, even more radically, what if I had some sort of gratitude for the transience of my life? Would it change what I worried and cared about? Wasn’t it necessary to think about this when I was in the midst of building a life? Or rather, living my life? And the more I thought about mortality and what it had come to mean to others and what I thought it meant to me, I realized that life was simultaneously so vast and so small.

It was daybreak after a good sleep and exhaustion as the stars emerged. It was the first crisp bite of an apple, the taste of butter on toast. It was the way a tree’s shadow moved along the wall of a room as the afternoon passed. It was the smell of a baby’s skin, the feeling of a heart fluttering with anticipation or nerves. It was the steady rhythm of a lover’s breathing during sleep. It was both solitude in a wide green field and the crowding together of bodies in a church. It was equally common and singular, a shared tumult and a shared peace. It was the many things I’d ignored or half appreciated as I chased the bigger things. It was infinity in a seashell.

I thought and thought that night, making mint tea and taking a few sips, watching the steam rise from the cup and then disappear. It felt strangely calming to focus on the cooling of heat, to appreciate the fact of temporary warmth. Maybe this, too, was the lesson of mortality: appreciating what we have now, in the midst of life, knowing that it is all a temporary gift.

I didn’t want the sum total of my life to be only a collection of my worldly achievements, boxes of degrees, and lists of patients I’d treated. I thought of what I had pushed off or considered unimportant, the things I promised myself I’d do when I “had the time.” I’d call the friend I had been meaning to call for the past year since I moved to LA. I’d take my mother to the beach in Santa Barbara. I’d take a pottery class. I’d write regularly to my uncles in Mumbai. I’d learn to cook Thai food. I’d adopt a puppy. I’d deal with my fear of bugs and go camping. These all seemed like such cheesy wishes as I thought about them. But these were the things I didn’t want to leave my life without doing. Which meant they weren’t small things.

That night was the beginning of a conversation I continue to have with myself, especially in the moments when the wrong parts of my life feel big and cast shadows over the smaller things. Those are the times I return to my copy of the Gita, having stumbled across a passage that perfectly captured how the fact of death has taught me to live differently:

No matter how strongly you ascribe to the universal delusion that you can avoid pain and only have pleasure in this life (which is utterly impossible), sooner or later you must confront the fact of your inevitable aging and eventual death Therefore, because death stirs people to seek answers to important spiritual questions it becomes the greatest servant of humanity, rather than its most feared enemy.

And there it was—the life lesson, and the death lesson. Vast and small, interlinked. Infinity in a seashell.

Adapted from THAT GOOD NIGHT by Sunita Puri, published by Viking, an imprint of Penguin Publishing Group, a division of Penguin Random House, LLC. Copyright © 2019 by Sunita Puri.

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B.C. man throws party as he undergoes medically-assisted death

‘The one thing that I don’t feel is loss,’ says widow

Musician Dan Laramie wanted lots of music at his party before he had a medically assisted death.

By Dominika Lirette 

When Dan Laramie died, he went out on his own terms — with music, whiskey and cigars.

“He really wanted a party,” said Stef Laramie, Dan’s widow. “He really wanted a celebration and I loved that idea. It just made it so great.”

The 68-year-old South Okanagan man had a medically-assisted death last Saturday at a close friend’s home in Keremeos, while surrounded by 50 friends and family. 

“We had to make sure that we got it out there, that people really understood that at this celebration it would be his last heartbeat and that he would be assisted in dying,” said Laramie.

‘Way too much’

About two months ago, Dan Laramie decided he wanted to have a medically-assisted death, Stef Laramie told Daybreak South‘s Brady Strachan.

Dan Laramie had diabetes since childhood, but the disease had grown worse and he was having problems with his blood pressure, kidneys and heart. 

Stef said Dan wrote 30 songs while he was in the hospital.

Last May, a surgeon told Laramie at an appointment that he’d have to amputate a couple of toes and he was immediately hospitalized. Laramie had an aggressive form of gangrene, which later led to other amputations including half of his foot and part of his leg.

“It got to be way too much. Right from the beginning he always said ‘I just don’t want them nipping away at pieces of me to try and save me if I can’t be saved’,” Stef Laramie said.

Dan Laramie’s condition continued to deteriorate at a rapid pace. There was calcification in his blood vessels, his organs were failing, and they realized his body was no longer able to heal at the rate it needed to for him to live.

Musician

Dan Laramie was a musician, so it was important to him that the final gathering with friends and family had lots of music.

Stef Laramie, who is a singer, said she and her husband once had a Karaoke band called K-town and a five-piece rock band called Lulu and The Lazy Boys.

“Dan was just an amazing guitar player. He could play rhythms, and leads, and bass, and all kinds of things all at once,” said Laramie. “When he was in the hospital he wrote 30 songs.”

One of the songs he wrote was about the nurses who cared for him, and they sang it at his party.

‘Just magical’

Dan Laramie’s friends, sister, son, daughter, grand kids and even some of his nurses all came to the party.

There was food, and single malt whiskey and cigars that an old friend brought for Dan.

“It was just magical how everybody looked after each other. People would burst into tears sometimes and somebody would just be kind and give them a hug,” said Stef Laramie

Stairway to Heaven

Towards the end of the night, Dan Laramie’s doctor and a nurse arrived to assist with his death. 

“You could see sort of an energy in the room where people could feel that it was time,” said Stef Laramie.

Once Dan Laramie signed the papers and said he was ready, his family gathered at his bedside.

Dan told his friends and family that when it came time for him to die, he wanted them to cheer and applaud, said Stef.

“I can’t even tell you how beautiful the look, the smile was in his eyes,” she said.

As requested, his friend, Michael Fitzgerald, played Stairway to Heaven, as the first needle was administered.

“Dan wanted applause…so oh my gosh did we ever clap and cheer,” said Stef Laramie.

“He was so ready and it felt like everything that we talked about… all these people coming, made it the absolutely perfect exit.”

Not sorrowful

“The one thing that I don’t feel is loss,” she said. “If he had died in a way that we had no notion of it, by surprise…then it would be sorrowful. But I don’t think dying should be sorrowful.”

After this experience, Stef Laramie said she learned that if you have a great life, death doesn’t mean as much. 

“You don’t have to let anybody start dying before they have left.”

Complete Article ↪HERE↩!

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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.”

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Facing the end with a friend:

The misperceptions and realities of hospice care

People who work in hospice care are often asked how they can work in a setting where most of the people around them are facing the end of their life — isn’t it “depressing”?

Put simply, hospice is end-of-life care that is both clinical and emotional in nature. It is designed to relieve suffering for the patient and his or her family during the last days of life — typically the final six months to a year. It is initiated only when curative treatments are no longer an option. Hospice workers and volunteers help their patients live their last days in peace and comfort, receiving care that meets their wishes.

For those with limited time remaining, hospice care enables them to focus on enjoying their friends and family during their final days. This is made possible with integrated clinical, emotional and spiritual support from a team of professionals. They include physicians to manage symptoms and pain; nurses who meet with patients and their families to gain a better understanding of their ongoing needs; and certified nursing assistants, including home health aides who provide hands-on care and support, as well as help with the activities associated with daily life.

Volunteer perspectives

Deana Ozuna is a hospice volunteer for Southwest Medical Hospice. She had worked for 13 years in various administrative departments in health care locally and began volunteering in hospice care in 2006. She has encountered the “isn’t it depressing?” question before, and her answer is a resounding “no.”

“I accept things as they are,” she said. “Everyone wants to be cared for. They want to be acknowledged. Connecting with people and seeing smiles on their faces just make me feel so good.”

George Pratt is also a hospice volunteer for Southwest Medical Hospice and has done so along with his wife Patricia since 2008.

“Sometimes I would agree, it can be sad, but I look at it this way — if I have reached the last chapter of my life, I’d like someone there with me. The family also needs relief from the stress and strain of the situation. The end is inevitable, whether you are there or not. Being with them at the end to give them a ray of sunshine is a good thing.”

April Stewart is the chief nursing officer for Nathan Adelson Hospice. She’s been working in hospice for 12 years. “Hospice is who I am,” she said.

Ozuna said that attitude is everything. She said one key is “the ability to be upbeat and smile when you walk into the room. They love it because they so often are around people acting somber and restrained. When I first started doing volunteer work, people were thrilled to see a smile, and they want to talk and learn about me. They are happy to have company.”

Pratt agrees, adding that “you need to be comfortable simply sitting and conversing with people. You need caring and patience.” Pratt said that he often revisits various chapters of his own life and speaks with patients on a wide range of topics. “It’s a matter of being able to listen, to show that you care.”

The job isn’t as depressing as people might think, said Stewart. “This is the most rewarding job I have ever had,” she said. “Hospice patients have the most beautiful stories to share. How lucky are we to be a part of someone’s life at this point in their journey? If we as a team can come together and provide true hospice care in the way it was intended, it is an amazing journey for all involved and can make a very sad, emotional time a little less scary.

Discovering a niche

After working in numerous hospitals and intensive care units, Dr. Dean Tsai, a medical director of hospice and palliative medicine for SMH, felt that medical care was often delivered without asking what the patient’s goals were, especially as patients got sicker and the treatments got more difficult. After helping a patient in respiratory failure to be comfortable as he was compassionately extubated, he sought out more experience in hospice care, leading to working full-time in the field in 2007 and transitioning to his job as medical director in 2008.

“It’s actually the most rewarding job I’ve ever had,” Tsai said. “We get heartfelt gratitude from families every day. Yes, it can be sad, at times, but it’s not depressing and almost always rewarding. I get to listen to patients tell their stories and often talk about what is most important in life.”

Tsai notes that the hospice setting and facing your own mortality can actually be a gift of sorts.

“Much of the time, despite the despair of dying, if one is given the fact that their time is very limited, it allows them to say their goodbyes, prepare their legacy, make amends or speak to loved ones,” he said. “This is considered the gift of hospice.”

For Dr. Lisa Rosenberg, also a medical director of hospice and palliative medicine for SMH, her first hospice experience was volunteering while a medical student. While she originally had planned to be a neonatologist, she realized her calling was for older adults. She later worked 15 years as a geriatrician, spending time with patients near the end of their lives. End of life care was always part of her work. She considers her move to hospice as the best professional decision she’s ever made.

Rosenberg has witnessed that some patients and their families can be good at emphasizing the positive or the negative, depending on their personality.

“Part of it is who we are, the other part is acceptance of the situation and accepting assistance,” Rosenberg said. “Sometimes it is a sorting through of one’s life or relationships. When someone recognizes that their time is limited, it can actually be a gift. We have resources to help with that.”

Stewart received a bit of on-the-job training when beginning her hospice career.

“These skills develop over time. The wife of my first hospice patient in 2007 told me, ‘We like you and we want you to be our nurse.’ I shared with them that I was still new to hospice so I would be in a supportive role,” Stewart said. “She then said to me, ‘If you come and care for my husband, I will show you how to be a hospice nurse.’ It turns out that she had been a hospice nurse for many years before she retired. I learned a tremendous amount from the two of them. Mainly — go into each situation with an open mind and open heart, determine what is needed of you, and make sure it happens. People don’t always need medical intervention. More often than not — they need your hand or your shoulder. Be present.”

Other misperceptions

Tsai and Rosenberg have encountered other misperceptions beyond the “depressing” question, like where the care takes place.

“Hospice is a service, not a place,” said Tsai.

While hospice care can take place in a clinical setting, a lot of hospice care takes place in the home.

“When people are enrolled in hospice, you don’t have to ‘go anywhere,’ and you aren’t necessarily bed-bound,” Rosenberg said. “The vast majority are cared for by family members at home with all the needed medications, equipment and support from our team. We continue to manage disease and symptoms. If a new symptom emerges, and a new medication is needed, we can have it in the home in less than two hours. We deliver great care and when things need to happen quickly, they happen very quickly.”

Stewart said that there is often confusion about medications in hospice.

“Some people still think that hospice just medicates people with morphine to the point that they can no longer be alert and starves them,” she said. “It is so sad and creates a lot of barriers in care. The truth is the patient is the one in charge of their care — that’s what hospice is all about.”

Rosenberg said that hospice care can take various forms. It’s about meeting the needs of patients and their families wherever they are at that point in their journey.

“If someone has stage-4 cancer and says they want to go on a cruise or go to a friend’s wedding, we can help them with these goals,” Rosenberg said. “If someone is electing to pass peacefully at home surrounded by loved ones — which is how death has happened in most of mankind’s recent history — rather than a hospital room, we support that.”

When the end comes

One particular memory has remained with Stewart.

“I once had a patient who was married to his wife for 50-plus years. When he began to transition to his final journey he said to me, ‘Please promise me one thing. I want my beautiful wife to be the last thing I see.’ I promised him I would do my best to make sure that happens. I was providing continuous bedside care.

“The time came for his wife to turn in for the night. He started to exhibit signs that he may pass. I went and got his wife and told him she was there with him. I sat him up and he was able to open his eyes as he took his last breath while holding her hands.

“It was the most beautiful expression of love I have ever seen.”

Pratt said that thinking of the good times is a good approach.

“Whenever I am with a patient, we don’t talk about the end. We talk about the journey — grandkids at the holidays, gratitude for having grandkids,” Pratt said. “One of the military service members I’ve worked with, he’s thankful he came home from the war, thankful that he married, thankful he raised a family, thankful that he traveled with his wife. You focus on the accomplishments and not the end.”

If others are encountering a similar struggle with a friend or family member with a terminal illness, he encourages them to just not give up.

“Treat them no differently than you would a friend. I’ve seen families that came together, some that pulled apart,” Pratt said. “When the whole family pulls together, that is best. It’s a team effort.”

Rosenberg said she has had hard days in her work, but most days are very good. One recurring difficulty she has witnessed is when a patient said they are tired of fighting, and a well-meaning family member said, “you have to fight.”

“That is very hard,” the doctor said. “It’s important to listen to patients, to hear their wishes for this stage of their life and to be respectful of them.”

Rosenberg sees hospice care as a return to a more natural state of care, pointing out that 150 years ago, people typically died at home surrounded by family and friends. It’s often now turned into a medical event.

“Mostly, I think what we do is beautiful. We don’t put patients on the path to dying. They let us come in and support them. We’re all in the same place working to relieve suffering and maximize joy and meaning.”

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Would you help your good friend die?

“Paddleton” is a road movie with a heavy destination

This Ray Romano and Mark Duplass drama, currently on Netflix, explores how to help someone have a dignified death

By Mary Elizabeth Williams

I don’t know what your definition of a true friend is, but mine would definitely include “willing to help me die.”

The Netflix feature “Paddleton” is a laconic road movie about the relationship between the terminally ill Michael (Mark Duplass) and Andy (a restrained, terrific Ray Romano), his upstairs neighbor and best friend. Not much happens. Except life and death. Michael has the good fortune to have metastatic cancer in California, which means he can exercise the state’s right to die option. “I don’t want to do it alone, and I was hoping,” he tells Andy as they casually nibble cashews one afternoon. “You would help me out.”

The concept of how to have a decent death has provided plenty of fictional inspiration over the years. Sixteen years ago, Ryan Murphy’s “Nip/Tuck” did a haunting arc about a woman with late stage breast cancer enlisting her lover, a doctor, to assist her in making a peaceful exit. The Oscar-winning 2012 “Amour” similarly explored assisted death as an act of love. And just two years ago, “Grace and Frankie” introduced Babe, a free-spirited pal of the girls who asks for help planning a blow-out farewell party — and a glitch-free ending for her life. Estelle Parsons was lauded for her guest role, but not everyone was a fan. One ethics blog subtly described the episode as “Grace and Frankie kill their friend.”

California’s End of Life Option Act came about in no small part thanks to the legacy of Brittany Maynard, a 29 year-old Anaheim woman who spent her final months advocating to die with as much agency as possible before her brain cancer took over. She died in Oregon in 2015, surrounded by family and loved ones but far from home, because she needed to be in a state that would provide the appropriate environment. Physician assisted death is currently legal in seven states and the District of Columbia, though it continues to face numerous legal challenges.

But “Paddleton” isn’t a right to die movie. There is no courtroom battle to be fought, nor any secretive pact to be made. When Andy initially goes through the routine dance of assuring Michael that he can’t give up because “miracles happen,” Michael counters, “They already gave me the prescription.” Andy grapples with his assigned role a moment, then stoically tells him, “OK.”

The men take a leisurely six-hour drive to one of the few pharmacies in the state that will fill the prescription. They bicker and drink and have loose, random and often very funny conversations. They return home and face the increasingly imminent fact that one of them will not be there much longer.

“Paddleton” (named for one of the men’s made-up games) was co-written and co-stars Mark Duplass, so it comes as no surprise it has a certain mumblecore je ne sais quoi. Scenes stretch out almost aimlessly. The repetitive routines of two schlubby, not very dynamic individuals play out in real time. There are no noble speeches. Yet within the film is a resonant meditation on the uniquely bewildering experience of imminent grief. “I’m the dying guy!” Michael yells to Andy at one point late in the story. “I’m the other guy!” Andy retorts, helplessly, heartbroken.

I’ve spent a lot of time the last several years being the other guy. I’ve sat with friends shriveling in their hospital beds. I’ve attended family funerals other relatives wouldn’t. I watched “Paddleton” a few hours before learning of the sudden death of one of my daughter’s oldest friends. And all I’ve ever really learned from all of it is that whether you’re prepared for it or not, the loss of someone you love will hit you like a baseball bat, and keep hitting you for longer than you ever thought possible.

The men in “Paddleton” are overgrown kids who like puzzles and pizza. Yet there are few tasks in life that demand as much delicacy and grit as facing death, and that task they manage with exemplary skill. As they sit together on Michael’s floor, preparing a final cocktail, Andy deadpans, “I don’t even know if you had to buy this particular pill. A hundred of anything would . . . you know.” He is sincere and reassuring and not somber. And when he later goes alone into the kitchen to mix the drink, Andy adeptly performs the chore, pausing only briefly to rip off a paper towel to dab his eyes.

I aspire to die someday with dignity, though I’m not currently making a fantastic show of living with it. Neither are any of the characters of “Paddleton.” They are — even the peripheral ones — awkward and strange and pretty weird. Maybe most of us are. And as much as we deserve a death with dignity, we long for one with empathy, shared with a friend who’ll hold our hand as we leave, and miss us when we’re gone.

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