In explaining his recent signing of the End-of-Life Option Act, Governor Brown wrote, “I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill."

These comments highlight a general lack of understanding about end-of-life symptom management and hospice care. Fortunately, this new bill affords more options than simply requesting life-ending medications. When a terminally ill patient expresses an interest in ending their own life with medication, the bill requires that their physician offer them other alternatives. Hospice care is one of those alternatives and perhaps the most warranted, as it addresses the physical, emotional and spiritual aspects that arise at the end of life.

The underlying philosophy of the hospice movement is that we do not prolong life nor do we hasten death.  It is our mission to provide services that support and comfort patients and their loved ones through life’s final stages, helping them live their best life for the rest of their life.

Hospice honors each patient’s goals and treatment preferences, ensuring their control over their own life decisions. It also provides support for family & caregivers throughout the process, including bereavement services for 13 months after the loss of their loved one. Hospice helps to alleviate a patient’s fears – fear of pain, fear of burdening their families, or fear of being alone at the end of their life.

Hospice care is covered by Medicare, Medicaid and most private insurances. Hospice East Bay, like many other hospices, works individually with patients who have no insurance or lack the financial ability to afford hospice care. With the widespread availability of hospice and palliative care, the choice should rarely be between “dying in prolonged, excruciating pain” and physician-assisted death.

Thirty years ago, if you had asked people on the street about hospice care, they wouldn’t have known a thing. Today people know more but not enough. Over and over again, I hear the same two things from grateful family members. The first is, “Thank you, we couldn’t have done it without you.” The second is, “We wish we had started hospice sooner.” We need to do a better job of helping families understand the benefits of hospice care and plan for what kind of care they would want at the end of their own lives.

We view the passage of this legislation as an important opportunity to promote discussion amongst families about their end-of-life options and educate them about the true benefits of hospice care.

 

Cindy Hatton
President & CEO
Hospice East Bay

Spiritual Care Counselor Bette Birnbaum is often moved to poetry by her experiences with families in hospice. Here is one of her recent poems:


The dog, he knows.
Because he can’t remember the last time they  scratched behind his ears,
or shooed him off the furniture (which he actually prefers to the floor).
He knows.
Because
he’s been shushed for barking at the strangers' wheeling roller bags,
and they forgot to feed him – again.

The cat, she knows.
Because she can’t remember the last time they teased her with a string,
or scooped out the litterbox.
She knows.
Because the house is hushed (which she actually prefers to normal noise),
and they forgot to feed her – again.

The pets, they know.
Because they’ve been locked out in the back yard,
or closed off in the spare bedroom,
or sent away to the neighbors.

The dog and cat, they know.
Because their routines have flown out the window,
and they haven’t heard “good boy” or “here kitty kitty” in weeks,
and they smell decay beneath the antiseptic.

When you see the dog and cat all droopy eared and drop tailed,
or find them trembling in the corner,
or hear them crying for no apparent reason,
please remember that the dog and cat - they know.
Their hearts are breaking, too.

 

Hindu Dancer

In Hinduism, there is a spiritual practice called darsan. When we dance in celebration in the temple, in the presence of the statues and images of the gods and goddesses, we make darsan. We make eye contact with them.

We believe that when we make darsan—when we behold the beloved one steadily and lovingly—we can glimpse the real deity behind the image, give it our affection and receive its affection in return. Darsan means, quite simply, “to see with reverence and devotion.”

One of the most important things we do in hospice is bear witness to our patient’s dying and death. We witness their endurance, their pain, their resiliency, sometimes their failure of courage. As we do in the temple, we do in hospice—we make darsan. We see our patients with reverence and devotion. Through steady, unfearful eyes, we glimpse the soul behind the failing body. We acknowledge the fierce, primordial struggle taking place in the hospital bed between that soul and that body. We—and sometimes we alone—observe a human life playing out its final hand.

It matters. Especially for the ones who die alone, it matters. When the tree falls in the forest, it does make a sound because we are there to hear it. We will remember them. And when we no longer remember them, their death will still matter because it has become part of the sum of who we are. We are the witnesses, the devotees in the temple of death and dying, the ones who make darsan at the close of every precious and remarkable life.

[Elizabeth Chandler Felts is a Spiritual Care Counselor with Hospice of the East Bay. She came to hospice work after 28 years in parish ministry and finds inspiration in the truths and practices of world religions.]

Spiritual Care Counselor Bette Birnbaum is often moved to poetry by her experiences with families in hospice. Here is one of her recent poems:


As a lass in the pews she warbled the hymns,
lifting them High from those green Sundays on.
But the song that struck her deepest chord
was written by Irving Berlin.

Long since the Emerald Isle lost its luster,
years after crossing the oceans white with foam,
she still calls on God to bless America,
bursting with love
for the mountains and the prairies
of the Golden Land that welcomed her
and delivered on every promise.

Now ill and frail and tiny,
she worships from her club chair,
beseeching Heaven to stand beside her and guide her.
Lilting in her holy brogue,
“My home, sweet, home.”

 

I believe that each hospice patient provides me with the opportunity to visit their “house.” I imagine their life as a long house with a door at either end. The house is filled with all of their hopes and dreams, happiness and sadness, disappointments and fears, tears and smiles, occupations and skills, loves gained and lost. It has pictures of family and friends, schoolmates, coworkers, neighbors—mementos of all their experiences.

I knock on the front door and am invited in. I hold the person by their hand. From time to time I am allowed to walk behind, other times ahead, and on occasion I walk beside, observing everything that my patient has been through, everything that she has seen and everything that has happened to her. I follow the path that my patient has laid out for me to observe—at times willingly, other times begrudgingly—through the simple and complex rooms of their elaborate house.

When we arrive at the rear door; I open it for them and they pass through by themselves while I look on. Then, I am honored with the opportunity to move on to the next house.


Spiritual Care Counselor Bette Birnbaum is often moved to poetry by her experiences with families in hospice. Here is one of her recent poems:


Like carnival barkers the daughters announced,
“Come meet our mother, the Levitating Lady,”
So I stepped right up to her bedside
where they conjured up their late father,
a magician,
and told how she, once a librarian,
became the woman he shot out of a cannon.
More times than they could count.

Dressed in leotards,
they toured America
watching their parents’ trailer full of smoke and mirrors
bounce along behind the car
and delighting small-town crowds
eager for the sleight-of-hand offered by the charismatic couple,
he suave in a tux and she glittering in sequins.
They made a shiny and spectacular family.
It was a great way to grow up.

The daughters recall life on the road
as the time when their parents seemed immortal
and no one mentioned the illusion
that
their bodies would forever be vital,
their minds clear,
their spirits strong.
Because, why wouldn’t you believe in magic?

 

Few of us get to choose our last meal on earth. Death row inmates do, and researchers report that those awaiting execution often ask for classic American comfort food: french fries, hamburgers, steak, pie and ice cream.

But most of us consume our last meal unaware that it will be our last. We toss the taco wrapper in the trash, step out onto the sidewalk and are struck by a falling piano. More commonly, we grow old and infirm, gradually forgetting how to swallow. Then one day, we choke on a spoonful of apple sauce, develop aspiration pneumonia and that’s it—the Last Supper.

last-supper-232If we could choose our last meal, knowing It will be our last, what would we choose?

I would start with a baguette torn open and slathered with liver paté, a handful of Niçoise olives and a chilled bottle of sparkling wine. Those treats, often shared with a companion on his deck overlooking the bay, would remind me how magical it is to fall in love.

For the soup course, the cream of chicken soup once served in the Queeny Tower Restaurant at Washington University Medical Center in St. Louis. Many a lunch I grabbed there while my mother got her chemotherapy or saw her oncologist. How many bowls of that soup did I consume before the cancer finally killed her at age 51? To taste it one last time would pull close a homesickness that is all I have left of her.

For the main course, my own fried chicken—which I am not too shy to say is the best you will ever eat. I have never been afraid of deep frying, which speaks volumes about my character: brave, resilient and sassy. I wasn’t born that way, I was made that way by people and experiences for which I am deeply grateful. Even for the hard, ugly stuff, I try to be grateful.

As a digestif, a glass of 20-year-old tawny port. I ordered it some years ago dining out with my father. While waiting for my drink, I stepped away from the table and quietly paid the dinner tab as a gift to my father. When he discovered what I had done, he was angry; I had shown disrespect for him as the family patriarch and provider. It tore open a breach between us that never healed. Sipping that glass of port at my last meal, I would be reminded of the bitterness of regret, of irrevocable loss, of mistakes I can never go back and undo.

At the end of the meal, I would break off one more piece of the baguette and hold up the glass containing the last of the port. I would whisper the old prayers and consecrate the bread and wine, because the deepest relationship of my life has been with something ineffable, beyond my sight. That’s the last thing I would taste on the last day of my life.

In hospice, we invite our patients to throw open the storehouses of their past, bring forth their stories and lay them out one after another, like a banquet on a dining room table. Some dishes they savor, some they pick at; others they push away with distaste or disappointment.

This is no mere stroll down memory lane. This is a patient’s final opportunity to take the full measure of who they are, how they came to be and what it all meant. It is holy ground—the place where love, sadness and longing, forgiveness and redemption, gratitude and blessing, regret, loss and wonder all come together in one last moment of reckoning. Often, there is a sense of fullness and completion; sometimes, the grace of healing.

And at last the meal is finished, the table cleared, the bill paid. We rise and make our way toward the exit. We step across the threshold. The door clicks quietly shut behind us.