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Compiled by Lizzy Miles

These are statements made by hospice patient to me over the years indicating their readiness to die. I recognized there was a beauty in the variety of ways the patients chose to express their wishes.

1. "If something is going to happen, let it happen. Life is getting less interesting as the days go by."


2. "Sometimes I wonder why they've all gone and I'm still here."


3. "When I go to bed I always wonder if this will be the time I die."


4. "I've done it all I've seen it all. I could step out."


5. "I'm ready to get up and jump around"


6. "I'm 93 and anything can happen at any time. I have no qualms."


7. "I was put on this earth to die. Today is just as good as tomorrow. We're all going to die. I can't control it."


8. "Right now heavenly home is home. They tell me we'll see our loved ones and never have to say goodbye. That would be wonderful."


9. "Get me out of here."


10. "I'm waiting to ring the bell."
     
11. "I know we're not going to be here forever. Hereafter is another home. It ain't no temporary home. It's permanent and there are no utility bills. No taxes."


12. "I just want to go home."


13. "My goal is to wonder how I fill the days until my days are gone."


14. "I think it would be nice if every single person in the world had a button to push to say, 'okay I'm ready'."

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and regular contributor to Pallimed.org. Lizzy authored a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy currently has a Kickstarter campaign with life advice from hospice patients. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW.

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The editors of Pallimed are proud to announce a new editorial feature: Pallimed Roundup. In these articles we will publish a collection of quotes culled from palliative care professionals around the world.

Our first question was: What advice would you give to graduating palliative fellows?

“Let the patient's and family's goals be your guide. You will be, and should be involved in discussions of discharge planning, financial and insurance issues, hospice and mortality statistics, but your true north should remain the goals of your patient and family.”

-Ross Albert, MD PhD

“Keep loving your patients till the end; they deserve it and you deserve it.”

- Rafael Bloise, MD

“Keep a clinical palliative care practice. Do not let research, administration or business interests destroy your clinical skills and the ethical foundation of all your career, patients and families.”

- Eduardo Bruera, MD

“In palliative medicine we become experts one patient and family at a time; keep learning, keep your heart open, and remember to breathe.”

- Ira Byock, MD, FAAHPM

“Listen to your patients, they have the answers!”

- Jim Cleary, MD quoting Dame Cicely Saunders

“Get yourself, your ideas, and the view that others have of you out of the way. Discover your true voice and use it.”

 - Michael Fratkin, MD

"Be Kind."

- Sonia Fullerton, MD

"Remember to pause and ask yourself 'what is your intention?' before seeing each and every patient."

 - Robert Gerard, MD

“Remember the doctors of old, the ones without antibiotics, morphine, and all the other modern medicaments and machines—the ones that sat bedside, held hands, and listened—for they were the true doctors, the ones who were present and shared the anguish of suffering, the ones who understood the burden of fear was too heavy to carry alone; model them, and you’ll be fine.”

- Paul Rousseau, MD

“Make time for talking with mentors and professional development activities that peak your curiosity, they are gifts you give yourself.”

- Holly Yang, MD

“Keep in close touch with your colleagues for discussing cases, sharing new ideas and information, not practicing in a vacuum, and even getting some emotional support when things are rough. It is more important than ever since we can be so isolated at times. [Use] the AAHPM Forum, blogs, emails, phone consults, HPM meetings, and set up one-day meetings with other medical directors/HPM doctors in your area."

- Don Zacharias, MD

Interested in participating in the next Pallimed Roundup? Have ideas for a question? Please contact Lizzy Miles.

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I have to confess that even though I am a grown woman I seem to like many young adult–teenage books (I am still seventeen at heart). I am frequently asking my daughter and nieces about books they enjoyed when I’m looking for something to read. So far the books I have read include some teenage love stories happening in a futuristic dystopia in which the main characters are at risk of dying because of being in a arena fighting other children like in the hunger games; or being at risk of getting injured while performing difficult stunts like jumping from a train like in the divergent series.


Below are some “palliative” and quality of life (love) related quotes from the book:

•  “There are a number of ways to establish someone's survival expectation without actually asking.  I used the classic "so are you in school?” Generally parents pull you out of school at some point if they expect you to bite in. “

•  “Cancer perks are the little things cancer kids get that regular kids don’t” Hazel 

•  “Depression is a side effect of dying.” Hazel

•  “That's the thing about pain...it demands to be felt.” Hazel 

•  “I already told you my story. I was diagnosed when-“  “No,  not your cancer story. Your story. Interests , hobbies, passions, weird fetiches, etcetera” 

•  “As he read, I fell in love the way you fall asleep: slowly, and then all at once,” Hazel

• 
  

  Okay

  “Oh, I wouldn't mind, Hazel Grace. It would be a privilege to have my heart broken by you.” Gus 

•  I'm in love with you, and I'm not in the business of denying myself the simple pleasure of saying true things. 

• “Maybe 'okay' will be our 'always” 

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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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Image by .m.e.c. via Flickr

For those of you who neither live in Chicago nor devour columns by film critics you may have missed that Roger Ebert went off the air after complications from thyroid cancer surgery left him unable to speak a few years ago. He has still been quite creative and continues to write his syndicated column hosted by the Chicago Sun-Times.

He also has been blogging since April 2008 and just last month he published a fascinating piece about his reflections on his own mortality. The article is filled with many references to various poets, authors and painters, but only one documentary curiously. The title of the piece references the famous poem by Dylan Thomas, "Do Not Go Gentle Into That Good Night." He starts boldly with his lack of concern about what happens after death based on an Epicurean philosophy.

I know it is coming, and I do not fear it, because I believe there is nothing on the other side of death to fear. I hope to be spared as much pain as possible on the approach path. I was perfectly content before I was born, and I think of death as the same state. What I am grateful for is the gift of intelligence, and for life, love, wonder, and laughter.

Some of the other interesting passages (but really go read it in full):

I have no quarrel with what anyone else subscribes to; everyone deals with these things in his own way, and I have no truths to impart.
...
What I expect will most probably happen is that my body will fail, my mind will cease to function, and that will be that. My genes will not live on, because I have had no children. Perhaps I have been infertile. If I discover that somewhere along the way I conceived a child, let that child step forward and he or she will behold a happy man. Through my wife, I have had stepchildren and grandchildren, and I love them unconditionally, which is the only kind of love worth bothering with.
...
In a moment or a few years, maybe several, I will encounter what Henry James called, on his deathbed, "the Distinguished Thing." I may not be conscious of the moment of passing. I have already been declared dead. It wasn't so bad.

It would be nice if we had more open discussions about our own mortality. You will hear that all the time from any hospice or palliative care professional. I think this piece is also notable for a positive reflection on death from an atheist/agnostic perspective, which I have heard some hospice staff at times wonder aloud how one would approach death peacefully. Regardless of your religious or philosophical beliefs Roger Ebert demonstrates a mature, wise approach to his own mortality and I think it is something we could all learn from.

Post-Script:
Take a read of the 500+comments as well.
Read this take on Ebert's post to see how it inspired others to reflect on their mortality.
Just because I wanted to here are all the artists mentioned in the post. (Almost a Pallimed: Arts & Humanities post by itself):

Edgar Allen Poe, Dylan Thomas, Walt Whitman, Vincent Van Gogh, Albert Camus, Thomas Wolfe, Cormac McCarthy, William Shakespeare, Saul Bellow, Brendan Behan, Henry James, Herge, e.e. cummings, Matthew Arnold, WB Yeats, Theodore Roethke, and DH Lawrence.