Tag: Conscious Dying

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How the Death Positive Movement Is Coming to Life

From joining coffin clubs to downloading apps like WeCroak, here’s how a growing number of people are living their best life by embracing death.

Are you ready to join the death positive movement?

by Stephanie Booth

Taking a dirt nap. Biting the big one. Gone — forever.

Given the gloom and painful finality with which we speak about death, it’s no wonder that 56.4 percent of Americans are “afraid” or “very afraid” of the people they love dying, according to a Chapman University study.

The cultural mindset is that it’s something terrible to be avoided — even though it happens to all of us.

But in recent years, people from all walks of life have begun to publicly push back against that oxymoronic idea.

It’s called the death positive movement, and the goal isn’t to make death obsolete. This way of thinking simply argues that “cultural censorship” of death isn’t doing us any favors. In fact, it’s cutting into the valuable time we have while we’re still alive.

What does that look like, exactly?

This rebranding of death includes end-of-life doulas, death cafes (casual get-togethers where people chat about dying), funeral homes that let you dress your loved one’s body for their cremation or be present for it.

There’s even the WeCroak app, which delivers five death-relevant quotes to your phone each day. (“Don’t forget,” a screen reminder will gently nudge, “you’re going to die.”)

Yet despite its name, the death positive movement isn’t a yellow smiley face–substitute for grief.

Instead, “it’s a way of moving toward neutral acceptance of death and embracing values which make us more conscious of our day-to-day living,” explained Robert Neimeyer, PhD, director of the Portland Institute for Loss and Transition, which offers training and certification in grief therapy.

Death as a positive mindset

Although it’s hard to imagine, what with our 24-hour news cycle that feeds on fatalities, death hasn’t always been such a terrifying prospect.

Well, at least early death was more commonplace.

Back in 1880, the average American was only expected to live to see their 39th birthday. But “as medicine has advanced, so has death become more remote,” explained Ralph White.

White is the co-founder of the the New York Open Center, an inspired learning center that launched the Art of Dying Institute. This is an initiative with a mission to reshape the understanding of death.

Studies show that 80 percent of Americans would prefer to take their last breath at home, yet only 20 percent do. Sixty percent die in hospitals, while 20 percent live their last days in nursing homes.

“Doctors are trained to experience the death of their patients as failure, so everything is done to prolong life,” White said. “Many people use up their life savings in the last six months of their lives on ultimately futile medical interventions.”

When the institute was founded four years ago, attendees often had a professional motivation. They were hospice nurses, for instance, or cancer doctors, social workers, or chaplains. Today, participants are often just curious individuals.

“We consider this a reflection of American culture’s growing openness to addressing death and dying more candidly,” White said.

“The common thread is that they’re all willing to engage with the profound questions around dying: How do we best prepare? How can we make the experience less frightening to ourselves and others? What might we expect if consciousness continues after death? What are the most effective and compassionate ways of working with the dying and their families?”

“The death of another can often crack us open and reveal aspects of ourselves that we don’t always want to see, acknowledge, or feel,” added Tisha Ford, manager of institutes and long-term trainings for the NY Open Center.

“The more we deny death’s existence, the easier it is to keep those parts of ourselves neatly tucked away.”

Death as a community builder

In 2010, Katie Williams, a former palliative care nurse, was attending a meeting for lifelong learners in her hometown of Rotorua, New Zealand, when the leader asked if anyone had new ideas for clubs. Williams did. She suggested she could build her own coffin.

“It was a shot from somewhere and totally not a considered idea,” said Williams, now 80. “There was no forward planning and little skill background.”

And yet, her Coffin Club generated massive interest.

Williams called up friends between the ages of 70 and 90 with carpentry or design skills she thought could be useful. With the help of a local funeral director, they began building and decorating coffins in William’s garage.

“Most found the idea appealing and the creativity exciting,” said Williams. “It was an incredible social time, and many found the friendships they made very valuable.”

Pearl, a New Zealand Coffin Club member, poses with her pet chicken in her decorated coffin.

Nine years later, although they’ve since moved to a larger facility, Williams and her Coffin Club members still meet every Wednesday afternoon.

Children and grandchildren often come too.

“We think it’s important that the young family members come [to] help them to normalize the fact that people die,” explained Williams. “There’s been so much ‘head in the sand’ thinking involved with death and dying.”

Younger adults have shown up to make coffins for terminally ill parents or grandparents. So have families or close friends experiencing a death.

“There’s lots of crying, laughing, love and sadness, but it has been very therapeutic as all ages are involved,” said Williams.

There are now multiple Coffin Clubs across New Zealand, as well as other parts of the world, including the United States. But it’s less about the final product and more about the company, Williams pointed out.

“It gives [people] the opportunity to voice concerns, get advice, tell stories and mingle in a free, open way,” said Williams. “To many who come, it’s an outing each week that they cherish.”

Death as a life changer

Janie Rakow, an end-of-life doula, hasn’t just changed her life because of death. She helps others do the same.

A corporate accountant for 20 years, Rakow still vividly remembers being mid-workout at a gym when planes struck the World Trade Towers on September 11, 2001.

“I remember saying to myself, ‘Life can change in one second,’” said the Paramus, New Jersey, resident. “That day, I wanted to change my life.”

Rakow quit her job and started volunteering at a local hospice, offering emotional and spiritual support to patients and their families. The experience profoundly changed her.

“People say, ‘Oh my gosh, it must be so depressing,’ but it’s just the opposite,” Rakow said.

Rakow trained to become an end-of-life doula and co-founded the International End of Life Doula Association (INELDA) in 2015. Since then, the group has trained over 2,000 people. A recent program in Portland, Oregon, sold out.

During a person’s last days of life, end-of-life doulas fill a gap that hospice workers simply don’t have the time for. Besides assisting with physical needs, doulas help clients explore meaning in their life and create a lasting legacy. That can mean compiling favorite recipes into a book for family members, writing letters to an unborn grandchild, or helping to clear the air with a loved one.

Sometimes, it’s simply sitting down and asking, “So, what was your life like?”

“We’ve all touched other people’s lives,” said Rakow. “Just by talking to someone, we can uncover the little threads that run through and connect.”

Doulas can also help create a “vigil plan” — a blueprint of what the dying person would like their death to look like, whether at home or in hospice. It can include what music to play, readings to be shared aloud, even what a dying space may look like.

End-of-life doulas explain signs of the dying process to family and friends, and afterward the doulas stick around to help them process the range of emotions they’re feeling.

If you’re thinking it’s not so far removed from what a birth doula does, you’d be correct.

“It’s a big misconception that death is so scary,” said Rakow. “99 percent of the deaths I’ve witnessed are calm and peaceful. It can be a beautiful experience. People need to be open to that.”

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Thich Nhat Hanh’s final mindfulness lesson:

How to die peacefully

Thich Nhat Hanh, 92, reads a book in January 2019 at the Tu Hieu temple. “For him to return to Vietnam is to point out that we are a stream,” says his senior disciple Brother Phap Dung.

“Letting go is also the practice of letting in, letting your teacher be alive in you,” says a senior disciple of the celebrity Buddhist monk and author.

By Eliza Barclay

Thich Nhat Hanh has done more than perhaps any Buddhist alive today to articulate and disseminate the core Buddhist teachings of mindfulness, kindness, and compassion to a broad global audience. The Vietnamese monk, who has written more than 100 books, is second only to the Dalai Lama in fame and influence.

Nhat Hanh made his name doing human rights and reconciliation work during the Vietnam War, which led Martin Luther King Jr. to nominate him for a Nobel Prize.

He’s considered the father of “engaged Buddhism,” a movement linking mindfulness practice with social action. He’s also built a network of monasteries and retreat centers in six countries around the world, including the United States.

In 2014, Nhat Hanh, who is now 92 years old, had a stroke at Plum Village, the monastery and retreat center in southwest France he founded in 1982 that was also his home base. Though he was unable to speak after the stroke, he continued to lead the community, using his left arm and facial expressions to communicate.

In October 2018, Nhat Hanh stunned his disciples by informing them that he would like to return home to Vietnam to pass his final days at the Tu Hieu root temple in Hue, where he became a monk in 1942 at age 16.

As Time’s Liam Fitzpatrick wrote, Nhat Hanh was exiled from Vietnam for his antiwar activism from 1966 until he was finally invited back in 2005. But his return to his homeland is less about political reconciliation than something much deeper. And it contains lessons for all of us about how to die peacefully and how to let go of the people we love.

When I heard that Nhat Hanh had returned to Vietnam, I wanted to learn more about the decision. So I called up Brother Phap Dung, a senior disciple and monk who is helping to run Plum Village in Nhat Hanh’s absence. (I spoke to Phap Dung in 2016 right after Donald Trump won the presidential election, about how we can use mindfulness in times of conflict.)

Our conversation has been edited for length and clarity.

Brother Phap Dung, a senior disciple of Thich Nhat Hanh, leading a meditation on a trip to Uganda in early 2019.

Eliza Barclay

Tell me about your teacher’s decision to go to Vietnam and how you interpret the meaning of it.

Phap Dung

He’s definitely coming back to his roots.

He has come back to the place where he grew up as a monk. The message is to remember we don’t come from nowhere. We have roots. We have ancestors. We are part of a lineage or stream.

It’s a beautiful message, to see ourselves as a stream, as a lineage, and it is the deepest teaching in Buddhism: non-self. We are empty of a separate self, and yet at the same time, we are full of our ancestors.

He has emphasized this Vietnamese tradition of ancestral worship as a practice in our community. Worship here means to remember. For him to return to Vietnam is to point out that we are a stream that runs way back to the time of the Buddha in India, beyond even Vietnam and China.

Eliza Barclay

So he is reconnecting to the stream that came before him. And that suggests the larger community he has built is connected to that stream too. The stream will continue flowing after him.

Phap Dung

It’s like the circle that he often draws with the calligraphy brush. He’s returned to Vietnam after 50 years of being in the West. When he first left to call for peace during the Vietnam War was the start of the circle; slowly, he traveled to other countries to do the teaching, making the rounds. And then slowly he returned to Asia, to Indonesia, Hong Kong, China. Eventually, Vietnam opened up to allow him to return three other times. This return now is kind of like a closing of the circle.

It’s also like the light of the candle being transferred, to the next candle, to many other candles, for us to continue to live and practice and to continue his work. For me, it feels like that, like the light is lit in each one of us.

Eliza Barclay

And as one of his senior monks, do you feel like you are passing the candle too?

Phap Dung

Before I met Thay in 1992, I was not aware, I was running busy and doing my architectural, ambitious things in the US. But he taught me to really enjoy living in the present moment, that it is something that we can train in.

Now as I practice, I am keeping the candlelight illuminated, and I can also share the practice with others. Now I’m teaching and caring for the monks, nuns, and lay friends who come to our community just as our teacher did.

Eliza Barclay

So he is 92 and his health is fragile, but he is not bedridden. What is he up to in Vietnam?

Phap Dung

The first thing he did when he got there was to go to the stupa [shrine], light a candle, and touch the earth. Paying respect like that — it’s like plugging in. You can get so much energy when you can remember your teacher.

He’s not sitting around waiting. He is doing his best to enjoy the rest of his life. He is eating regularly. He even can now drink tea and invite his students to enjoy a cup with him. And his actions are very deliberate.

Once, the attendants took him out to visit before the lunar new year to enjoy the flower market. On their way back, he directed the entourage to change course and to go to a few particular temples. At first, everyone was confused, until they found out that these temples had an affiliation to our community. He remembered the exact location of these temples and the direction to get there. The attendants realized that he wanted to visit the temple of a monk who had lived a long time in Plum Village, France; and another one where he studied as a young monk. It’s very clear that although he’s physically limited, and in a wheelchair, he is still living his life, doing what his body and health allows.

Anytime he’s healthy enough, he shows up for sangha gatherings and community gatherings. Even though he doesn’t have to do anything. For him, there is no such thing as retirement.

Eliza Barclay

But you are also in this process of letting him go, right?

Phap Dung

Of course, letting go is one of our main practices. It goes along with recognizing the impermanent nature of things, of the world, and of our loved ones.

This transition period is his last and deepest teaching to our community. He is showing us how to make the transition gracefully, even after the stroke and being limited physically. He still enjoys his day every chance he gets.

My practice is not to wait for the moment when he takes his last breath. Each day I practice to let him go, by letting him be with me, within me, and with each of my conscious breaths. He is alive in my breath, in my awareness.

Breathing in, I breathe with my teacher within me; breathing out, I see him smiling with me. When we make a step with gentleness, we let him walk with us, and we allow him to continue within our steps. Letting go is also the practice of letting in, letting your teacher be alive in you, and to see that he is more than just a physical body now in Vietnam.

Eliza Barclay

What have you learned about dying from your teacher?

Phap Dung

There is dying in the sense of letting this body go, letting go of feelings, emotions, these things we call our identity, and practicing to let those go.

The trouble is, we don’t let ourselves die day by day. Instead, we carry ideas about each other and ourselves. Sometimes it’s good, but sometimes it’s detrimental to our growth. We brand ourselves and imprison ourselves to an idea.

Letting go is a practice not only when you reach 90. It’s one of the highest practices. This can move you toward equanimity, a state of freedom, a form of peace. Waking up each day as a rebirth, now that is a practice.

In the historical dimension, we practice to accept that we will get to a point where the body will be limited and we will be sick. There is birth, old age, sickness, and death. How will we deal with it?

Thich Nhat Hanh leading a walking meditation at the Plum Village practice center in France in 2014.

Eliza Barclay

What are some of the most important teachings from Buddhism about dying?

Phap Dung

We are aware that one day we are all going to deteriorate and die — our neurons, our arms, our flesh and bones. But if our practice and our awareness is strong enough, we can see beyond the dying body and pay attention also to the spiritual body. We continue through the spirit of our speech, our thinking, and our actions. These three aspects of body, speech, and mind continues.

In Buddhism, we call this the nature of no birth and no death. It is the other dimension of the ultimate. It’s not something idealized, or clean. The body has to do what it does, and the mind as well.

But in the ultimate dimension, there is continuation. We can cultivate this awareness of this nature of no birth and no death, this way of living in the ultimate dimension; then slowly our fear of death will lessen.

This awareness also helps us be more mindful in our daily life, to cherish every moment and everyone in our life.

One of the most powerful teachings that he shared with us before he got sick was about not building a stupa [shrine for his remains] for him and putting his ashes in an urn for us to pray to. He strongly commanded us not to do this. I will paraphrase his message:

“Please do not build a stupa for me. Please do not put my ashes in a vase, lock me inside, and limit who I am. I know this will be difficult for some of you. If you must build a stupa though, please make sure that you put a sign on it that says, ‘I am not in here.’ In addition, you can also put another sign that says, ‘I am not out there either,’ and a third sign that says, ‘If I am anywhere, it is in your mindful breathing and in your peaceful steps.’”

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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.”

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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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