The Watershed Moment: Choosing to Embrace Hospice Care

What is a watershed moment? It is a turning point from which things will never be the same. A fork in the road. You might recall the precise twinkling in time that changed the direction of your life, path, or thinking – forever. For our purpose, that watershed moment occurs when a person chooses to recognize and embrace the inevitable transition from curative treatment to palliative care within hospice.

In this blog, I review and comment on the Netflix Documentary End Game: An Academy Award nominated film about palliative care and the practice of mindfulness at the end-of-life. Four patients and their families share the intimate moments of receiving a terminal diagnosis and their struggle with the next steps.   

Directors: Rob Epstein and Jeffrey Friedman.

A forty-minute documentary released January, 2018.

87% of movie-goers liked this film and reviewers gave it 7.2/10 rating.

Not a bad rating for a “tell-it-like-it-is” film about dying.

The movie is filmed at the University of California Medical Center and the Zen House Hospice Center of San Francisco.

Language: English and Persian; with Spanish subtitles.

Synopsis: Dr. B. J. Miller, a Palliative Care Specialist seeks to change the public’s view of dying and approach to death. Not a lot of consumers are familiar with the phrase “palliative care” (described in my previous blog). It is an emerging medical field and anyone in the health and hospice industry is seeing its innovations bantered about at national conferences, online, and in newly-published books and films. Dr. Miller describes palliative medicine very simply: “Living as well as possible for as long as possible” (with a terminal illness).

Dr. Miller comes by his wisdom on suffering and death from an encounter with an electrical wire, as a nineteen-year-old student at Princeton. He lost both legs below the knees and one arm below the elbow. One of the lessons he learned: “Emotional suffering is really just the gap between the life you want and the one you actually got.” That insight sounds logical, prudent, and very thought-provoking. But obviously, shoveling wisdom and lowered-expectations into that wide gap by learning “to love the life you got” is not always easy (especially in our pleasure-seeking, instant-gratification-grabbing western culture).

The mission of the Zen Hospice Project (portrayed in the film) is to enhance the experience of care for both caregivers and care recipients by teaching mindfulness and compassion as practical tools to improve well-being at the end-of-life. Through this unique approach, they inspire one another to live fully in the face of universal loss: “Don’t run away from suffering and don’t run away from death – embrace it, run head-long into it, and smack dab onto it. Feel it, muck around in it, and be comfortable feeling unsettled for a bit.” However, this might be a foreign concept for those of us not trained from early on to embrace hardship and discomfort, or who tread timidly into the acceptance of reality. The Buddhists do a much better job.

Incidentally, I have often believed that one of my duties as a chaplain was to help my patients “muck around in death.” To be okay with “feeling unsettled.” To not be afraid to look death straight in the eye and not blink. When a patient can spit in the eye of death, that patient relegates death to the position of servant.

The film offers us a chair at bedside, as these patients and families work through the shock of a shortened prognosis and grapple with treatment options and comfort measures. Many patients debate the merits of extending their time on earth through painful and exhausting treatments: how many months can be purchased from God? Quantity over quality or quality over quantity? Obviously, we would prefer both; if only we were selecting options from a dinner menu.

But this is exactly the intersection where palliative medicine meets hospice: it promises us what curative treatment cannot – comfort for the time that is remaining. I know from personal experience and my professional work that watching most people confront the reality – that Dying has begun – is hard.

Because of my career helping people die well, my mortality is always before me. Therefore, I try to live consciously: in the moment, accepting of my own circumstances, grateful and full of joy, purposeful and deliberate when making choices, and to be of service to others. I have faith that God is in the details of my life. I understand that Mother Time is not my friend — so I get on with it; living each day to the fullest. Whatever each day gently requires or haughtily demands – I face with resolve and hope.

Dr. Miller encouraged his patients “to make friends” with death. At the least, if not friendly, then less adversarial. What? Maybe we aren’t comfortable with embracing death with a big old bear hug; but maybe just a “slight nod of the head and a curtsy would do,” to acknowledge the companion who is now velcroed to our hip.

In my spiritual practice, like midwives and doulas who design birthing plans for mothers-to-be, I like to create a birth plan for the patient’s soul (read my forthcoming book). Chaplains want to place patients in the emotional and spiritual position to call the shots at the end-of-life; not hand the “party-planning” over to the demanding push-and-pull of the circumstances that surround death. Therefore, the sooner a patient can access the hospice benefit the better — “making friends” takes time.

According to research in a May 2017 article by Authors B. Stuart and L. Bering in the Harvard Business Review, “over one-quarter of all hospice patients get enrolled in hospice when they have less than three days left to live; many coming straight from the ICU. Unfortunately, for many patients and their families, hospice is just another emergency service tacked onto the end of a long siege of hospital treatment.” We must prepare for our own death as we would for an important exam, the birth of a baby, to obtain a foster care license, to build a new home, or our wedding day. A good death takes careful planning.

What is evident from this film, is how little consumers know about hospice and how ill-prepared many of us are to make that transition from hospital to hospice. We are born and conditioned to fight and fight and fight to stay on this earth – our home base (often way past our expiration date). All ages dig their heels in and cling to the bedpost when death comes knocking.  Often, my first task as a Chaplain is to “grease the bedpost” and to “loosen the dirt around shoes.”

Dr. Miller suggests that patients hold the mystery of dying with trust and faith. There is a best-selling book out now called, “Life Will Be the Death of Me,” by Chelsea Handler. I propose that we flip that title to reveal the true consequence of a good passing: “Death Will Be the Life of Me.” The art of living and the art of dying are one and the same. At the very end, dying is no longer the realm of medicine or science — it is purely human and divine. It is about patience, vulnerability, trust, surrender, love, and dignity.”

Hospice is not about “giving up.” It is about “letting go.” A huge distinction. It is about saying good-bye; for now. Often, in the final hours, my patients would sit up or even speak for the first time (in days), in response to a vague presence of deceased family members or angels that they sensed at the foot of the bed. Yes, the end of earthly life is all about miracles – maybe just not the ones we thought we needed or prayed for.

In the film, End Game, the main story is centered on a forty-six-year-old wife, mother, and her family. I watched this film from a fairly clinical perspective, even though I’ve witnessed the long and emotional deaths of my mother, father, and husband. But when Mia’s twelve-year-old son climbed into her hospice bed to hug her, it was the first time during this film that my stoic countenance cracked. I have a twelve-year-old grandson and I imagined myself in that bed with James curled up next to me; and me, trying to feverishly pass on those final tidbits of caution and guidance for his future. By allowing the producers to pull back the curtain on the decisions and process of dying, these brave and generous family members help viewers get acquainted with loss and dying (an education that needs practice and reinforcement over and over throughout life).

Maybe when Dr. Miller suggests that patients reach out to touch death, he means taking the time to actually envision it. Really think it through – step-by-step. Talk to death: “I know the time is near. I chose a wonderful medical/spiritual team to mentor me through this. I will be comfortable and not alone. I am not afraid. I know where I am going. I can do this.” Let the mantra take hold of you. Say farewell to your own body that has served you so well for so long: honor each body part by naming it – with gratitude and love. Breathe deeply. Let go – sink and rise, bob along – swim with the process.  It’s easier to get out of a riptide if one doesn’t fight against it.

Sometimes I have patients reflect on those periods when they were challenged to leave established comfort zones and to accept something challenging and scary. They journaled about those recollections. Most often, they could cite situations where they had muscled up the fortitude to take that first step. From those early experiences – they learned lessons from both “failure” and success, grew in confidence, overcame hurdles and doubts. Most importantly, they made it to the other side. And so they remembered: those previous forays into darkness, onto the territory of uncertainty, and into the cloud of unknowing. They retrieved those lessons and inserted them into the ultimate loss – letting go of one’s physical dimension, to birth a soul. Most importantly, don’t meet God “at the gate” as a stranger; make friends now. God always loves, but if you have loved – you will bring to heaven the fruits of such a deep friendship with your Creator- a reunion will be that much sweeter.   

Takeaways:

• Every family debates the moment of surrender: Mia’s mother and husband disagree if the watershed moment has arrived. He feels that treatment could secure more time and eventually result in curative or perhaps miraculous benefits. On the other hand, Mia’s mother who recalls her daughter’s birth, cannot tolerate watching her daughter suffer. Without an advanced-directive, the husband’s hopeful preference will take precedence over a mother’s angst. And so we are left to watch the loving husband and mother parley the pros and cons.

• Every adult should have an advanced-directive for treatment preferences at the end of life on file at their physician’s office. Mia did not have one — she was only forty-eight. At the least, let your loved ones know what you want at the end – now.
• I met with my lawyer to write my directives before a trip to China two years ago. We would be flying over North Korea on the return flight during the period when Kim Jung Un was shooting missiles over the Sea of Japan. According to press reports, one of those launches almost hit an American Airlines flight heading to Los Angeles. I wasn’t taking any chances — I also updated my Will (which was long overdue since my husband’s death). My sister-in-law suggested I might stay home — too dangerous. Nah. If I go down at the hands of the North Korean dictator, that would make quite a splash (literally) and make great fodder for some budding author’s first book.

• Perhaps one way to “shake the hand of death and play nice” can be reflected by creating an advanced-directive. At one time, I foolishly believed that if I sat down to plan and write down my thoughts on dying, I would tempt fate. So I postponed and postponed and postponed this important task. It doesn’t work like that – I promise.

• To die well means to live well. If one is afraid of plunging into life and chooses to live small — dying might be more challenging as well. By that, I don’t mean that everyone should launch into their bucket list. Fortunately, living well means accepting the reality of one’s own life circumstance and choosing to live with joy. Bloom where you are planted.

• We need to help all people (in every class and ethnicity) live well; so they can die well.

• The process of decision-making during the transition from hospital-to-hospice is all part and parcel of the undertaking of grief and growth in spiritual maturity.

• You can find information on the Zen Hospice Project at https://www.zenhospice.org.

Also, check out the Zen Hospice Blog.

• Only one criticism of this amazing film: I didn’t understand the choice of the title — “End Game.” The process of dying is not a form of competitive sport. On the other hand, the title is catchy. Also, the movie the “Avengers: Endgame” was coming out a year later, so maybe they capitalized on that. Regardless, a minor hiccup for this powerful film.

• Our triune God promises to be with us as we exhale our last breathe, and return us more fully to the Ultimate Relationship – Love. (John 14:1-4)