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by Rebecca Gagne Henderson (@RebeccaGagne)

The tone and theme of this book is set with the profound and moving epigraph from the Iliad:

“The generations of men are like generations of leaves. The wind scatters one year’s leaves on to the earth, but when Spring comes the luxuriant forest produces other leaves; so it is with generations of men, one grows as the other comes to an end”. Iliad 6 --145

The book is titled My Father’s Wake: How the Irish teach us to live, love and die. Mr. Toolis is a writer, journalist and award-winning filmmaker and documentarian. His family has lived for two centuries in a small seaside village on the Irish Isle of Achill. His childhood in a provincially engrained Irish island culture coupled with his expanding cosmopolitan world experience influences a broadening view of life and death culture. This Homeric journey through the author’s memoirs of witnessing death experiences in a variety of circumstances is written through a decidedly Western and Celtic prism. He blends the realities of his real-world journalistic experiences of war, famine, natural disaster and death with an elegant overlay of the humanities and culture.

Toolis offers us an historic autobiography of the wake through the ages, but it is much more than that alone. He reminds us of what we have lost and surrendered to medicine and technology, or as he refers to it; “The Western Death Machine”. While we palliative care types attempt to imbue sacredness at the bedside which should accompany each death, it is only a sad token -- a shadow -- of what was once a familial and communal sacrament. His depiction of the ancient ritual of the wake and other customs is not sentimental, but an unflinching description of death, grief, and mourning. He draws an analogy between physical exercise and the wake as training for our own deaths -- a way to help us exercise our own anxiety of death. The book follows the author's personal experiences with family members dying through his childhood and young adult life. His description of the collective experience of his father’s death, wake and funeral are poetic and unforgettable. The book then moves to innovative illustrations of death in our current Western culture which may be novel even to us in palliative care.

As an American of Irish-Mexican descent (please recall the affinity that the Mexican people have with death, dying and ancestors), even I learned of ancient rituals and terminology related to death, dying and grief. Over 25 years I of working in palliative care I recognize many of these rituals as they transcend culture and are simply human, for example, the term “keening” which is used to describe wailing women. Toolis explains that often times keening women are hired to wail and “sing” at wakes. This behavior can be seen at Egyptian funerals as coffins are marched through the streets to a final resting place. The description of keening women evoked a memory of an experience I had several years ago. We had been caring for a young West African, Muslim man. As he was nearing death his sister began to wail and fall to the floor. It occurred to me that she was “falling out”. “Falling out” is a grief reaction which I had previously only witnessed in some African-American traditions and communities. This response demonstrates a possible shared cultural grief characteristic which managed to survive hardship and separation over centuries, oceans, and continents and illustrates how deeply culture runs within our human experience. As we all know, there is more we have in common than there are differences.

The author’s experience as a journalist covering many incidents of death, war and terrorism forms his view of death, which may also happen with our work in hospice or palliative care. We wonder about our own deaths; after all of this, will we be the ones to suffer terminal agitation, denial and death anxiety? Toolis describes this phenomenon with aplomb and reflects our own fears, dreams and nightmares.

My Father's Wake: How the Irish teach us to live, love, and die is a beautifully written work which deserves our attention. There are portions of this book which should be required reading for medical and nursing students. My hope is that many of you will read this book and share your thoughts.

Rebecca Gagne Henderson is a palliative APRN in CT. All work and no play makes Rebecca a very dull girl. When not at work Rebecca is occupied with her PhD work. Perhaps she will finish by retirement age which is two years closer than my last post.

To read more book reviews on Pallimed, click here. To see more posts by Rebecca Gagne Henderson, click here. (Links are Amazon Affiliate links which support Pallimed. Also, please shop at your local bookstore.)

Photo credit: Graveyard by Kevin Toolis, used with permission.

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by Staci Mandrola

I love the segment on Last Week Tonight with John Oliver called “How is this still a thing?” His snarky Britishness targets everything from the Sports Illustrated Swimsuit issue to ‘Why do we dress up as other races?’ The skits start out funny but leave you questioning and unsettled.

I hope “going palliative” ends before it shows up on “How is this still a thing?” How do I know "going palliative" is a thing? The phrase is popping up in the academic medical center where I practice palliative care. [And many other hospitals too - Ed.] PT/OT has signed off patients who have a palliative consult ordered (not completed). MDs and APRNs call to ask why their patients are still receiving disease-directed treatment when they “went palliative” last week. Nursing staff asks if they need to continue accuchecks because Ms. A is “going palliative.” Social workers ask why Mr. C hasn’t transferred to the hospice inpatient unit because he “went palliative.”

Aaarrgghh.

“Going palliative” became a thing because hospice became a bad word. Hospice is a synonym in the hospital for dying that makes patients and healthcare professionals upset. We are Americans and we battle through adversity. We praise John McCain for his fighting spirit that will help him beat his cancer. Then we temper the language of courage because we know that none of us will ultimately win the battle. In our hospital, palliative has become a four-syllable bait-and-switch for hospice. And now they have figured it out. When you’re “going palliative”, people use it as code for hospice.

Nope.

Hospice care is for patients who request primarily comfort focused care with the desire to remain in a home-like setting and avoid a medicalized death while having expert management of distressing symptoms. They choose to elect their Medicare Hospice Benefit which is predicated on a physician certifying a prognosis of less than six months. They and their loved ones receive equipment, medication, psychosocial/spiritual care, nursing care and 24-hour support that is a phone call away.

Palliative care is for patients with any prognosis. It can be hours, but it is just as likely to be years. It runs right alongside disease-directed care. Our palliative team consulted on a twenty-year-old battling opioid addiction who needed treatment of severe headache, nausea and dizziness after a motorcycle accident. Our team consulted with a ninety-year-old man who wanted full disclosure of the risks, benefits and alternatives to an open aortic valve replacement. He is alive five years later.

Palliative care manages distressing symptoms at any stage of life and illness. Palliative care provides social, emotional and spiritual support to patients dealing with serious illness and their families. Palliative care helps patients determine what gives their lives meaning and how available medical treatments support or prevent them from continuing to make that meaning.

Palliative care is not an "either/or" choice. It is a “both” choice.

And yes, palliative care may still recommend hospice care when it is appropriate based on that patient’s goals and prognosis.

Why not change our name to “quality of life” care or supportive care? Eventually, healthcare professionals would ask why Ms. A needs accuchecks because she is “going quality of life” or “going supportive.”

“Going palliative” is not a thing. Most palliative care teams won’t employ John Oliver’s brand of snarkiness. But if we don’t continue to educate our colleagues, “Going Palliative-How is this still a thing?” is right around the corner.

Please visit PalliativeDoctors.org for an in-depth look at palliative care, hospice care and the team approach.

Staci Mandrola (@drstacim) is a wife, mother, grandmother and palliative medicine physician who practices in Louisville, KY. Her husband John writes about cardiology and sometimes palliative care issues at Dr John M.

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by Denise Hess

An American pastor recently visited Australia and encountered a curious practice. At the start of meetings, any kind of meeting not just religious ones, she found it is common practice to begin with what is called an “acknowledgment of country.” According to reconciliation.org.au:

An Acknowledgement of Country is an opportunity for anyone to show respect for Traditional Owners and the continuing connection of Aboriginal and Torres Strait Islander peoples to Country. It can be given by both non-Indigenous people and Aboriginal and Torres Strait Islander people.

And it goes something like this:

“I’d like to begin by acknowledging the Traditional Owners of the land on which we meet today. I would also like to pay my respects to Elders past and present.”

I happened to hear this story from that American pastor the same week of the Charlottesville protests and counter protests, and the same week I watched the HBO adaptation of The Immortal Life of Henrietta Lacks. These events made me think again about the role of race in palliative care.

In over a decade of working in palliative care, I can say with confidence that I have never met an all-out “racist” palliative care physician, nurse, social worker, or chaplain. However, everyone of us has biases, prejudices, preconceived ideas of how people “should” act and what they “ought” to do, and we carry these biases with us wherever we go. Awareness helps, efforts to counter bias help, but we cannot rid ourselves of bias.

For example, I don’t think I am alone in noticing that I have pre-conceived ideas and expectations about how a patient or their loved ones will respond to palliative care interventions based on their cultural and ethnic background. This is bias. We are all infected with it.

Also, many of us have been given an unearned advantage, by accident of birth, called privilege, that
opens doors we didn’t even realize were closed to others. Privilege is as invisible as air unless you don’t have it and want to breathe. For example, whites and people of color are likely to have vastly different experiences of serious illness and palliative care. As has been well documented by bright minds among us¹, people of color tend to receive a lesser-quality version of palliative care² after receiving less preventative care, later diagnosis, and more challenging access to curative care in the first place.³

As a white woman, if I were diagnosed with a serious illness, I would likely receive high quality palliative care, assistance with advance care planning, excellent pain and symptom management, and help to die in the place of my choice. As a person of color, I may not receive any of the above.

The excellent health insurance I have is the result of the job I have, which is the result of the education I have, which is the result of the family I have, which is the result of the access they had to jobs, education, and opportunities, which is the result in large part of where they were born, when they were born, the color of their skin, the color of their eyes, the texture of their hair. Without those things, I could be without quality health insurance, showing up in the emergency room for primary care. Chance of birth is the source of my privilege.

To add to that, we are all part of health care systems that have institutionalized, operationalized, and standardized racism as part and parcel of their business models. Racism is embedded within the very fiber of organizations and shows up as disparities, lack of access, uneven quality, poor care coordination, and lower patient safety outcomes.

So how to respond? White guilt is not the answer. White guilt makes me the subject and people of color the object once again. White guilt only changes optics, not practices, and definitely not institutions or systems. However, using privilege for the benefit of others can help. Using our voices and our influence over organizations on behalf of those who have been shut out or excluded from various tables of influence can effect change. But even better, using our privilege to lift up the voices of people of color is an excellent step in the right direction.

“But,” I hear you say, “I am a busy (fill-in-the-blank-doctor-nurse-social worker-chaplain), I don’t have time to use my voice to change the system. I’m just trying to finish my documentation!” Fair enough. Yet, spending the currency in our bank of privilege on behalf of others does not have to (but absolutely can) include protest marches, trips to Washington DC, or even visits to the C suites. We can spread our wealth of privilege in simple yet powerful acts like our friends’ in Australia “acknowledgment of country.” Here are a few palliative care possibilities:

1. Include a person of color in a case presentation as a “positive” example, e.g. not “noncompliant,” “resistant to palliative care,” “opposed to advance care planning.”
2. Increase your cultural curiosity and competence through relationships with those outside your cultural group.
3. Read Between the World and Me by Ta-Nehisi Coates, The New Jim Crow by Michelle Alexander (as a start) or watch the film 13th, or I Am Not Your Negro and discuss as a team.
4. Assess your team’s cultural reach. What groups are over/underrepresented in your patient census based on your local demographics?
5. Inventory your language. Notice where and when you use terms such as “difficult” patient or, “resistant” family, or when you go into a family meeting with the expectation that the family will "want everything done.”
6. Watch for “acknowledgment of country” moments when meeting with patients and their loved ones. Are there opportunities to name the ways disparities may be impacting a patient’s situation? Was care difficult to access? Was quality of care poor? Talk about it.

These micro-non-aggressions and micro-extensions of our own privilege on behalf of others are not insignificant. We do not need to be the “white saviors.” We do not need to lead the charge to eradicate racism from our institutions. That would be appropriation. We need to be allies, learning from the experiences of persons of color, always stepping aside to make room for the neglected voices that need to be heard and honored.

Denise Hess MDiv, BCC-HPCC, LMFT is a palliative care chaplain and marriage and family therapist who currently serves as the Executive Director of the Supportive Care Coalition. She is currently on a quest to try all the donuts in Portland, Oregon.

References
1 Johnson KS. Racial and ethnic disparities in palliative care. J of Palliat Med 2013;16(11). Open Access PDF
2 Welch LC, Teno JM, Mor V. End-of-life care in black and white: race matters for medical care of dying patients and their families. J Am Geriatr Soc. 2005 53(7).
3 2016 National Healthcare Quality and Disparities Report. Rockville, MD: Agency for Healthcare Research and Quality; July 2017.

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by Amy Clarkson

We have a serious problem on our hands. It’s been around for decades, but it seems to be getting worse. Our problem? Death avoidance.

As a society, we keep getting farther away from the reality that death is inevitable. Death has gone from being something visible and an accepted part of life, to something invisible and far too easy to deny.

In the 1800s just as photography was coming into existence it was common to have a post mortem photograph taken just after someone died. These photographs were displayed in the home as a constant reminder of the loss. Death was something that happened in the home. Generations lived near each other, so it was common to have grandchildren present during the last days, as well as in the home around the deceased’s body during the day or two of the vigil and wake before burial.

Even the funeral processions were more visible. As loved ones walked behind a horse drawn carriage carrying the coffin in a slow mournful way, there was no escaping the knowledge of who had died, and all could see the family mourn openly.

Mourning in the 19th century also lent itself to something more visible. Loved ones dressed in black for a period of months to years. This custom allowed others to be reminded of death’s presence on a daily basis.

In our modern sophistication, we have drastically altered most of these past traditions. We don’t always live near family, and our elderly often are hidden away in nursing homes for their last months and years. Death occurs not in the home, but in hospitals and long term care facilities. Our distaste of death has seeped into funerals, which now are called a “celebration of life” with embalming practices to attempt to make the deceased look as alive as possible. We aren’t allowed to grieve for long, it’s too uncomfortable to face death. Mourners are subtly pushed to ‘get over’ their grief quickly and friends prefer not talking about it.

The word death itself is greeted as a morbid term. We use phrases such as “he passed away” or “he went to be with Jesus” to make it easier to say. I’ve seen it done in my own field. People don’t want to say ‘hospice’ because of its association with death, and prefer using the term ‘palliative care’ to push the reality of dying farther away. Another subtle trend is to use the phrase end of life, instead of saying someone is near death. The switch from life to death, diminishes our discomfort with death.

Recently I’ve had people say that even ‘end of life’ is too harsh. Should we come up with a new word for that period of life at the end? Perhaps we could call it the blue period. That way we cannot only avoid the word death but the word end as well.

What harm has our denial caused? Increased futile and sometimes painful treatments at the end, increased fear surrounding death and diminished meaning of life to name a few. We must remember that it is the realization of our mortality that gives us a reason to live.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune. It is re-published here with the author's permission under a Creative Commons license.

Photo credit: "The Grim Reaper" by Trish Steel via Wikimedia Commons under Creative Commons Attribution-Share Alike 2.0 Generic license. 

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by Michael D. Fratkin

The ground is shifting under our feet as our society seems finally to be looking at the nature of human mortality and the way we care for each other…or don’t…as we complete our lives. Zubin Damania, MD aka ZDoggMD is now part of that conversation since the release of “Ain’t the Way to Die” his first not-so-funny medical parody music video focused on how we so many of us die in the hospital in a not-so-funny way. A hospitalist refugee from burn-out at a big academic center, ZDogg continually reinvents himself as an “off-white rap star” with a passion for saying what needs to be said with growing impact.

 

 That doesn’t surprise any of us that have been practicing professionals in palliative care and hospice over the last 35 years. We have done our best to share our perspective and to inform our society. And our society has only just now seem to be paying attention. I sat down with ZDogg for an interview to address a question raised by Atul Gawande in an interview before his plenary at the AAHPM Assembly, “…why the hell aren’t people listening to you?”

 

Michael D. Fratkin, MD is a palliative care physician and founder of Resolution Care, a unique palliative care practice in Northern California. Resolution Care was featured on Pallimed in Dec 2014.

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by Betsy Trapasso

“I am scared that I will forget Joel. I don’t want to forget him.” These words spoken by Ryan Green about Joel, his terminally ill five-year-old son, resonated strongly with me, while watching the documentary Thank You For Playing. How many times have we heard words similar to these from family members of hospice and palliative care patients? How many times have we held their hands and looked into their eyes and assured them that loved ones can never be forgotten?

In Thank You For Playing, co-directors Malika Zouhali-Worrall and David Osit bring us into the world of the Green family who live in Loveland, Colorado. Ryan, the father, is an indie video game developer. Amy, the mother, is a writer. Joel has three young brothers. Ryan and his creative team are developing a video game called “That Dragon, Cancer*” as a way to honor Joel and to document the family’s experience of “raising a child who is supposed to die.” The film begins when Joel is three-years old and it follows the every day life of the family as well as the development of the video game.

*Dr. Meredith MacMartin discussed That Dragon, Cancer for Pallimed back in 2013. -Ed.


Thank You For Playing (2015) - Official Teaser from Thank You For Playing on Vimeo.


Joel was diagnosed with a rare brain cancer at age one and over four years of recurring tumors, surgeries and radiation and chemotherapy treatments he has outlived all the times the doctors thought he would die. Because of these treatments Joel can’t speak but that doesn’t keep him from being playful, loving and full of laughter. In the lighter moments of the film it is endearing to see all the brothers play together and to see how much they love and care for Joel.

In “That Dragon, Cancer,” Joel is a brave knight who fights the cancer dragon. Since babies can’t kill dragons, God fights for Joel. God can win. The Greens are Christians, and like so many of our families, their faith helps to sustain them through Joel’s illness. Players of the video game experience the life of Joel and his family at home and in the hospital. They are able to interact with Joel as he feeds a duck and they can push him on a swing. They see Joel receiving his treatments, sleeping in his hospital bed and sitting with Ryan in a hospital chair.

We see how players react to “That Dragon, Cancer” when Ryan takes an unfinished version of it to the PAX video game conference in Seattle. Players cry and are genuinely moved as they interact with Joel and progress through the game. They see that fighting cancer is a game and they experience what it is like for Joel and the family. Ryan cries as he watches the players and he realizes that there is great potential for the video game because “people get it.”

The scenes of Ryan and Joel in the hospital are heartbreaking. Ryan holds Joel and sings to comfort him. He sleeps with Joel in the hospital bed. Ryan cries and says that he feels helpless as he watches Joel receive more treatments. He wants to hold on tight to Joel and to never let him go. Ryan shares these experiences so that others can see what it is like to have a child with cancer. They are also helpful for our community to see because they show us what parents are thinking and feeling when their child comes to us for care.

When Joel’s brain tumors multiply and grow, the family travels to California so that he can take part in a clinical trial at the University of California, San Francisco. The family tries to live a normal life as we see Joel receiving his treatments. It is a bittersweet time because Amy is pregnant with a girl, whom they have named Zoe. The clinical trial doesn’t work for Joel so they return to Loveland and Joel is placed on home hospice care. Family and friends surround Joel. They hold him, sing to him and pray for him. The screen fades to black and we read that Joel died on March 13, 2014 at 1:52 am.

The film resumes three months after Joel has died. We see the brothers with their newborn sister Zoe. I can’t help but wonder what life is like for them. Ryan and Amy are trying to pick up the pieces in the aftermath of Joel’s death. They have finally decided on an ending for the video game that makes them happy and hopeful. The ending has Ryan and Amy on an island. Joel goes away from them while they stay on the island. Joel moves on and he makes it to the other side to be with God.

Ryan and Amy believe that “That Dragon, Cancer” will help people to see that there can be fulfillment, beauty and meaning in the deepest loss you can experience. Amy says that even though people will love Joel, it is love that will make the video game work. Love is what the players will experience and connect with in the game.

In the film, Ryan talks about how America is afraid of death and that we hide it behind closed doors. He wonders why we are not talking about the way things shape us because the things that make us us can be both tragic and beautiful. These two moving artistic creations, Thank You For Playing and “That Dragon, Cancer,” will help to start conversations about death, grief and loss and we all know that they are incredibly needed in our society.

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I recently viewed Thank You For Playing at the ArcLight Documentary Series in Los Angeles. I spoke with the co-directors, Malika Zouhali-Worrall and David Osit, and they are excited for the Pallimed, hospice and palliative care communities to spread the word about their film.

Thank You For Playing will be screened at the Woods Hole Film Festival in Cape Cod, MA on July 29 and at the Melbourne International Film Festival in Melbourne, Australia in August 2015. It will also screen on PBS POV in the Fall of 2016.

Information and updates about Thank You For Playing, “That Dragon, Cancer” and the Green family are available on these websites. You can also subscribe to be on their email lists.

Thank You For Playing

“That Dragon, Cancer”

The Green family blog

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Betsy Trapasso is a former hospice social worker who now leads Death Cafe LA and advocates for good end of life care. You can read more on her site or follow her on Twitter - @BetsyTrapasso. We are excited to have her writing here at Pallimed!

Photo Credit: Still and poster from the movie "Thank You for Playing"

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by Niamh van Meines

In a recent #hpm chat, we touched on the topic of “redesigning death”. The discussion moved to finding ways to insert hospice and palliative medicine into everyday life, moving away from medicalizing death to humanizing it, or re-humanizing it. Atul Gawande framed it very well in his recent speech at the AAHPM Assembly with one simple statement in regards to dietary restrictions: “Let ‘em have the damn cookie.” And again, at the Institute of Medicine conference on March 20th, Atul Gawande, touched upon emotions and desires that change for people as they grow older. Hopes and goals shift from a medical focus to desires related to being with certain people and enjoying simple experiences. The anticipation that well-being is possible even under difficulties of disability by putting the focus back on the person, no longer on the disease or treatment, and the life the person wants to live. Watch Gawande's full keynote address from the IOM below.



In keeping with that theme, a number of participants in the #hpm chat had suggestions about re-framing the perspective of the hospice and palliative medicine practitioner so that they can embrace “patient centered care” in line with what the patient wants. Here are a few:

What if people put the same enthusiasm into orchestrating the end of their lives that they put into proms and weddings and graduations? #hpm
— Joe Rotella (@JRotellaAAHPM) March 26, 2015

@JRotellaAAHPM @skipbidder Aspirations, accomplishments, legacy-building and meaning-making. so important. #hpm
— Beth Fahlberg (@bethfahlberg) March 26, 2015

@bethfahlberg @skipbidder @JRotellaAAHPM Agreed. But if I redesigned death, I would target aspirations more than suffering #hpm
— Joe Rotella (@JRotellaAAHPM) March 26, 2015

was at ALF, ExecDir starting broad coalition for making Washington County a dementia friendly community. EOL friendly not so catchy.. #hpm
— Shelly Johnsen (@drshelj) March 26, 2015

And at the close of the chat Joe Rotella (@jrotellaAAHPM) wondered what the Most Interesting Man in the World’s take on dying would be. So here are a few thoughts, just for fun! Feel free to tweet your highly entertaining “interesting man in the world thoughts on dying” using the hashtag #InterestingEoL and share it on your social media platform of choice.

1. When he dies, he lives to tell you about it.
2. He gave his father “the talk”, and his father gave it back.
3. His memorial starts 6 months before his death, so he can enjoy the accolades.
4. Instead of the grim reaper following him, he is following the grim reaper.
5. His tears can alleviate suffering, but he never cries.
6. He is the life of the party at his own funeral.
7. He once enrolled with hospice just for fun.
8. If you have a peaceful death, it’s because he let you.
9. He can speak palliative lingo in cardiology terms.
10. His DNR order smells like cologne.

Niamh van Meines is a Hospice and Palliative Care Consultant and Nurse Practitioner at Practitioner Solutions. She assists hospice and palliative care organizations with program development, quality improvement and clinical education. For fun, she likes to hang out with 2 energetic beagles, listen to world music, and explore beaches & national parks with her family.

Join us Wednesday nights for #hpm chat at 9p ET on Twitter.

If you would like to make your quote into an image you can use a meme generator like imgflip.com.

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by Holly Yang, MD

I try to greet each new year by jumping into the ocean and catching a wave. If I'm good about it (and not on call) I try to meet the dawn of the new year in a special kind of hello and thank you. So... I guess it's a good time to highlight a bit of surf culture. Why surfing?  Well, because it is an integral part of who I am, but also because it illustrates beautifully how different ideas of culture impact how we see life and death, and celebrate who we are and were.

Culture is a funny word, and is probably overused.  We tend to view it through the eyes of ethnicity, nationality, or faith, but we each exist in many types of communities each with their own cultures. As you think of your own life, you can probably identify which communities are the ones that are most important to you, which "culture" has the most meaning and helps you define who you are at your core.  Isn't this where we find the stuff in the top three layers of Maslow's?  Isn't that what gives us meaning and purpose?  Isn't this some of what is lost when we find some our patients in the deepest throes of existential suffering?

So how does this connect to surfing?  Well, I can connect most anything to surfing...

"A wave does not need to die to become water. She is already water."

- Thich Nhat Hanh

Surfers are a funny bunch.  It includes people of all educational backgrounds and socioeconomic levels, young and old, male and female.  We are linked by our fierce passion for the ocean, and we know we are a part of something mysterious, awesome, and greater than ourselves.  You only have to sit atop your board at sunset with dolphins playing in front of you, or paddle like hell to get over the huge wave about to break on your head to know that truth deep in your core.  If you practice medicine near a body of water with waves (this includes the Great Lakes too!), you will probably have a surfer for a patient.  Ask about hobbies in your social history.  Know that one of their most profound connections is to that deep blue mystery.  Rell Sunn, known as the Queen of Makaha, exemplified this when she continued to surf despite being hospitalized and getting chemotherapy for her breast cancer.

When a respected members of our tribe dies, we mourn their loss and celebrate their life by having a paddle out.  The Irish have wakes, people in New Orleans have jazz funerals and second line parades, surfers have paddle outs.  The tradition is thought to have originated in Hawaii in the early 1900's and moved to the U.S. mainland and around the world since that time.


Paddle outs can be done as a memorial or a celebration of life, with less or more of the spiritual components.  Most paddle outs are more humble affairs, but all include family, friends, and members of the local surfing community.  There are pictures, food, flowers, not so different from other types of remembrance ceremonies. Some are big affairs as you can see in the videos from the paddle outs for pro-surfer Andy Irons in 2010, or Newport Beach lifeguard Ben Carlson who died in 2014 while in the line of duty. Some are done more than once, the most famous is done annually for the opening ceremony of the Eddie Aikau memorial surf competition held by Quiksilver. UCSB surf club hosted a paddle out for their classmates who were killed in 2014 in Isla Vista. Junior Seau, the NFL player, had a paddle out after his death in 2012. It happens more than you are aware of, but if you have a chance to be a part of one, go. It's a beautiful experience.

In a more traditional version of a Hawaiian paddle out, a Hawaiian Kahuna or Ku'puna stands on the beach in the water with the family and calls in the person's spirit with prayer, and an Alaka'i blows a conch shell which has been blessed in the ocean. Ocean water is brought in a bowl and the family, close friends, and the ashes are blessed by the Kahuna or Ku'puna with wet tea leaves. As the tea leaves touch those close to the deceased, it is a way of passing on the person's mana, or spiritual power. The family publicly thanks the gathered community, prayers are said, and the conch shell is blown again calling out to the spirits. The ashes are wrapped in the tea leaves with the sinking stone, and the people who are going to be paddling out stand on the beach facing the surf and hit their surfboards to make noise as the Kahuna or Ku'puna chants a warrior chant. Next, everyone paddles out on their surfboards (often family is in a boat), and form a circle with the family in the center.  People hold hands, say prayers, and tell stories about the person who has died. The ashes are placed into the water, the flowers and leis are thrown into the center of the circle, and people cheer and splash the water to celebrate the person who has died. Finally, people catch a wave in to shore carried along, surfing, with that person's spirit.

The first paddle out I went to, was for a long-time local surfer whose last name I didn't know until he died of a heart attack on the beach. He was a kind man, who gave me a few gruff pointers when I first started surfing, and yelled, "Paddle!" at me when the wave came. You have to understand that most people either avoid you or grumble at you when you are first starting to surf, so his help was very much appreciated. It was moving for me to witness the powerful ceremony, to be a part of celebrating him and remembering his life.  I learned he was a lifeguard who taught others how to save lives, and it seemed like everyone I'd ever seen in the ocean was in that floating circle. I cheered and splashed, and threw my flowers into the water. As I caught a wave in, I said a little prayer of thanks for Davey's life and for the community that gathered to celebrate it that day, and I felt gratitude for his presence.

Paddle outs are a part of who we are as surfers, a part of our culture. I know there are lots of communities of all types that celebrate people's lives and deaths in unique and interesting, yet sacred ways. I hope to continue to learn from my colleagues and patients these cherished bits of culture that make us all part of a fascinating human story. Hopefully we can get a few more "culture" posts highlighting some of these as we go along. If there are particular ones that pique your interest, let us know and we'll try to shed some light on them. Wishing you all a wonderful next chapter in this adventure called life in 2015!

Special thanks to Kai Buanoi and Unko Mo for helping me with this post.

Image credit: Illustration by Christian Sinclair for Pallimed, original photo "One on One" by Bryce Bradford , shared under Creative Commons CC BY-NC-SA 2.0
Photo credit: Sunset Wave by Holly Yang, used with permission, All rights reserved

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(Ed. - Please welcome another new blogger to Pallimed, Earl Quijada, MD (@equijada). Earl is a hospice and palliative care doctor in the Inland Empire of California. I first met Earl on Twitter and later at the 2011 AAHPM Assembly in Vancouver and I am very excited he is now a Pallimed contributor! - Sinclair)

I know I’m not supposed to say this but I’ll say it once - we’re not a death denying society. I’m starting to learn about death in nonclinical settings. My mind is opening and I’m stoked.

I just returned from 2013 TEDMED where the opening salvo encouraged me to drop my palliative care persona, make intellectual and emotional connections, and ask many questions. I was then immersed in thousands of disparate ideas.

Imagine my feeling when I realized that I don’t understand my patients. Patient perspectives are not seen. This problem, this theme was repeated.

America Bracho, CEO and President of Latino Health Access is solving this problem by turning patients into teachers in the same community. She is creating champions in neighborhoods to teach about diabetes. These teacher/patient relationships share social and environmental denominators. The result is an empowered community. The phrase “non-compliant diabetic” is fading. What if this happened in community where someone was dying? Would it be possible if patient education was done by someone who has gone through the same experience? Would the phrase “he’s in denial” fade? I think so. I want to know.

I feel that I possess listening and understanding skills but really had to take a second look when I realized that there is a whole patient vocabulary that I don’t recognize. Sally Okun, Vice President of Advocacy, Policy, and Safety at PatientsLikeMe is systematically curating a “patient lexicon”. Patients can’t be heard if patients aren’t understood. This patient lexicon will amplify voices so stories can be heard and understood.

An understood story is important. Amanda Bennett, Pulitzer Prize winning journalist and author of The Cost of Hope told a poignant story of her journey with her husband through his illness and eventual death. Through their courtship and marriage they did everything; they travelled, they adventured, they had many children, they had hope. Through his cancer, they "did everything". They had hope. They had directives that clearly stated to “stop everything” when there was “no hope” but they always had hope. They did not have a narrative for death. Denial was not a bug, it was a feature. What people called denial, they called hope. Stories need to be heard.

Michael Hebb

At TEDMED I was mostly an ordinary person. At lunch a CEO for a biotech company talked to me about her father’s death and how she will always remember kindness. On a trolley ride a designer explained how he is designing medical risk communication. He was interested in helping design conversations around death. At a party an EMR specialist talked about how she was moved by a home that housed the dying homeless. The topic of death is compelling because of it’s honesty. No one talked about symptoms, goals, or the normalcy of death. Just the honesty.

This honesty happens amongst ordinary people. I was not surprised when meeting other physicians that death was not on conversation. Michael Hebb, chef and “underground restaurateur, impresario, provacateur” is starting a project called, Let’s Have Dinner and Talk about Death. During these dinners, they talk about the beauty, mystery, fears, and hopes and the challenges of end-of-life planning. The wonder of this is that it’s done in a comfortable dinner setting. Michael stresses that these conversations should not be with physicians, nurses, or lawyers but amongst ordinary people. People want to talk about death when coupled with the right ingredients. Michael’s project is popular, it’s artsy and it’s potentially scalable. It’s such a great idea.

Perhaps the most difficult idea for me to understand is that of horizontal and vertical identity as described by Andrew Solomon, author of Far From the Tree and winner of the National Book Award. He describes horizontal identity as acquired from a peer group and vertical identify as usually respected identities from the parents. Horizontal identities are often viewed as flaws in which he describes deafness, sexuality, and severe mental illness. He heart wrenchingly describes painful ambivalence of parents between love and despair. Perhaps death is a horizontal identity that is overladen illness. Andrew proposes that as illness is moved to identity there is movement towards love and acceptance. I struggle calling death normal as I wouldn’t deafness or severe mental illness. There is no denying death, but recognizing that tension between love and despair.

People long to and are so grateful when they are identified.  The artist Raghava KK  said, "Teach perspective, learn empathy".  He has it right.  I'm taking a view and saying it again - we're not a death denying society.  What do you think?  Is this an idea worth spreading?

Photo Credit (some rights reserved on photos)
TEDMED Panel by Jerod Harris/TEDMED
Michael Hebb by Wayne Price - DeathOverDinner.org

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One could write pages about David and Debbie Oliver's remarkable plenary presentation Friday at the American Academy of Hospice and Palliative Medicine Annual Assembly in New Orleans.  David has stage IV nasopharyngeal carcinoma and has taken his cancer journey to the public.  Before I go any further, I'll refer you to David's book, "Exit Strategy: Depriving Death of Its Strangeness," Paul Tatum's Interview with David at Geripal from August 2012, and below, see a clip from David's Cancer Videoblog in which he talks about cancer and palliative care.


Of the many themes which arose from their presentation, I was especially struck by David's statements about the disclosure of his diagnosis to others and his frequent need to comfort the person receiving the news.  Our culture struggles with the language to respond when surprised by the news that someone we know or meet has a serious illness.  David talked about his 94 year old mentor telling him, "don't panic, don't struggle, relax, and accept it" in the face of the illness, and he's really taken the advice to heart.  Yet I'm sure that many people he meets project their own fears about developing a serious illness, and thus assume that every day is a monumentally and persistently dour struggle.  (I've had medical students and others remark to me before about a terminally ill patient, "how can they be in such a good mood?" as if this were forbidden once the illusion of immortality has been cast aside.)

I think David has the right formula for responding to people.  He deprives death of it's strangeness by providing comfort to them.

I ask most patients what they have told their loved ones and how their loved ones are coping with the patient's illness.  I don't routinely ask patients how others respond to the news of the illness.  What happened when you told your hairdresser?  The doorman?  Your colleagues?  Was their response comforting, unsettling, or downright bothersome?  Do you feel comfortable talking to others about it?  Perhaps those conversations go well.  But when they don't go well, it results in social and psychological suffering.  As David said today, "Don't move too quickly through the (anticipatory) grief!" (i.e. I'm still alive and treat me like I am!)

I briefly surveyed twitter and a few people in person, and there was general agreement that this type of question usually isn't asked (at least by many physicians) although some responded saying that they did usually or always ask about how others respond to their illness disclosure.  I hope this is an opportunity to reflect on the value of this line of questioning and how we might help patients communicate more effectively with those around them in the interest of their social well-being.

Here's a study which further clarifies the emotional work of disclosing a breast cancer diagnosis.

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I'm always struck at the end of a year how much we pay tribute in words and video to those who have died in the prior year.  Famous people always get the lion's share of the attention understandably as we focus on what they have achieved in their career.  Rarely do we get to hear from them in the months leading up to their death about their fears and dreams.

In September 2011, Maurice Sendak, noted children's author and illustrator was interviewed by Terry Gross for NPR's Fresh Air.  During this interview, Sendak is very upfront with his mortality and what matters most to him as he has grown older and his health begins to decline.  The whole interview is a gem, and I invite you all to sit down and find 45 minutes to be uninterrupted in listening to it.  But as I know it is the start of a new week in an ambitious new year, you may not have time for that in your priorities.  So at least take 5 minutes and watch this illustrated clip of the interview that was created by artist Christoph Niemann.


Niemann's listening to this inspired him to make this remixed version with a plaintive piano in the background, which has amazingly taken off to be viewed over 30,000 times on YouTube. Even the comments are pretty civil by YouTube standards!







This received a lot of comments and shares on the Pallimed Facebook page as well where I asked what quotes from the excerpt resonated with people most.  For me it was the statement:

"I cry a lot because I miss people.  I cry a lot because they die and I can't stop them.  They leave me and I love them more."

Gross notes his atheism is holding up while staring into the face of death.  Sendak was frank and open about his atheism and it is interesting to hear his views on afterlife since he does not believe in one.

But he believed in God, you see, and he believed in heaven, and he believed in hell. Goodness gracious, that must have made life much easier. It's harder for us nonbelievers.

Sendak had many musings on his mortality and death and I will explore some of those more on a Pallimed Arts post next week.

Resources:
NPR Interview Transcript

Photo Credits:
Where The Wild Things Are - Wikipedia Commons
YouTube Comment - Screencap

Edit 1/6/13: GeriPal has also posted on the NY Times Sendak video.

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If you have worked in hospice for a few weeks or health care for a few years you will probably come across this question at some point.  What is the right age to take children* to a funeral? This question is asked of everyone involved with the care of the patient not just the social worker or chaplain who you might think are natural targets for such a question.  Deeper underneath this question are ones that children may naturally have about illness, death and dying.  And of course these may be questions the parent do not feel ready to answer, thus the solicitation of guidance.

You can break down the basic answers in a couple of categories that all have their pros and cons.

• No. Absolutely no! - Obviously this answer doesn't take into account any of the unique aspects noted below that may influence the decision.  This response often comes from the feeling that protecting children form the sadder, darker sides of life is the best thing to do.  But this may come at a price later, when the child grows up and really has a less nuanced and full understanding of how death fits with life.  Finding the teachable moment as a parent is one of the trickiest skills to master.
• Yes. Absolutely yes! - Well if absolute one way isn't so smart, absolute in the other direction must be brilliant. (Only in politics, am I right?) Sadly an always yes statement falls into a similar trap of missing the unique identifiers which guide the most beneficial path.  Forcing children to learn about something can backfire if they are not prepared.
• How mature is the child? - Well if you cannot answer the question with an answer, then try a question.  I have heard this often and used it occasionally.  Assessing for a child's maturity and more importantly understanding of the concept of death is not the simplest task.  Sometimes my 6 year old is very mature, often times she is not. The inherently relative nature of the question may not always be helpful. 
• Was the child close to the person? - Closeness to the deceased may or may not be a great indicator of readiness to attend a funeral.  But if the child is cl
• What does the child want to do? This is the BEST RESPONSE IN MY OPINION. It empowers the child to have a say in this very important family event.  From this you can get a sense if the kid feels obligated, indifferent, overwhelmed from the entire situation.  In fact with death and dying discussions with children (and even adults) the best advice I was ever given was to ask what questions they have and answer them simply and leave room for more questions and discussion.  Do not try and be an expert and explain everything to a child.  They will let you know where they want to go with the conversation if you let them.

Other considerations:

• Plan for a separate viewing and/or ceremony for children - If you are not sure how the child may react many funeral homes can work with you and have a smaller viewing or plan a ceremony to honor the loved one.  This way the child is included but does not have to be subjected to the pressure of a larger group and the Aunt who just never has the right thing to say. 
• Access your hospice experts - Even if you have not had services provided by a hospice agency, you can usually reach out to one of the bigger ones in your community and ask to talk to a bereavement counselor and possibly a child-teen specialist.  They have a great knowledge base and can connect families with resources in their community which focus on grief and loss challenges of kids and their families.  Comfort Zone Camp is a great example that runs multiple camps nationwide.

Kansas City Star Mom2Mom poll

What got me thinking about this post was two things.  First, my 6 year old twins have known for a while that daddy works at hospice and helps people who may die.  They ask about graveyards and what happens to people in the ground there.  They have not yet had a chance to attend a funeral, but it is something I have thought about how I would answer personally.  And this morning I was pleased to see this question in my local Kansas City Star paper.  The polled mothers from their Mom2Mom micro-site.  about their thoughts and I was pleased to see this subject as part of the local Kansas City Star newspaper poll to mothers.  As always the comments illuminate the discussion. Some excerpts:

• I've tried to teach my kids (even when I can tell they don't want to hear it) that everything living will die someday. Death is part of life ("Circle of life, Simba"). That discussion is wasted if they're too young to comprehend.
• I was 8 when I went to my first funeral and it was my father's and it was very uncofortable/terrible experience for me. Still to this day I remember the image of my fathers's body in the casket and the memory of seeing my father like that haunted me!

Are there any tips you might share?

*I use the term broadly here to even reach to young adult.


References:

Black, D. (1998). Coping with loss: Bereavement in childhood BMJ, 316 (7135), 931-933 DOI: 10.1136/bmj.316.7135.931 (Open Access PDF)

Holland, J. (2004). Should Children Attend Their Parent's Funerals? Pastoral Care in Education, 22 (1), 10-14 DOI: 10.1111/j.0264-3944.2004.00281.x (Open Access PDF referring to this study)

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A reporter for the New York Times recently made this statement (see video below):

"I think the Japanese tend to try to maintain a veneer of calm and not breech topics that might be alarming or insulting (emphasis added).  For example, until recently, it was the norm for families not to tell a family member who had cancer (about the cancer) just to save suffering on the part of the family member and we see some of that mentality at play in some of the communications we have seen from Japanese officials who have refused to confirm what turns out now to be a very serious situation at the Fukushima Daiichi plant.  They were very slow in acknowledging some of the dangers."