When Letting Go Becomes a Luxury
Silva was sitting in a wheelchair next to her husband, John, who had been admitted to the emergency department due to chest pain and dementia. Silva herself was recovering from hip surgery which had necessitated their downsizing and moving to assisted living just five days prior. While John resided in the memory care unit, Silva qualified for the independent living quarters. The stress was tearing the two of them apart and no less than ten family members were at bedside, caught in the middle of this heartbreaking upheaval.
Despite John’s tears and agitated state, he seemed to be destined for a better place. He had a weak heart and a history of a previous stroke and PTSD, yet he maintained the demeanor of a soldier when called to attention by the ED staff. Unbeknownst to Silva, she had become the primary focus of John’s treatment plan. John did not wish for or require hospitalization; he needed palliative care. Silva needed to be able to let go of the metaphorical handle that was preventing others from entering her domain.
The gift of receiving palliative care is that it is less about letting go and more about allowing others in. As a physician, I am often called to woo patients and entice them with the latest, greatest care plan. At my work station, Silva and her son listened intently to my sales pitch regarding palliative care. Building upon the premise that assisted-living is where the living is easy, I explained palliative care bridges advance care and end-of-life transition. It often allows patients the luxury of staying home after they let go of the need to be hospitalized.
Silvia had the choice of doing this the easy way or the hard way. The hard way involved admitting and schlepping John through the tumultuous maze of the hospital, ultimately having him admitted to a skilled-nursing facility. This would leave John even more separated from Silvia. The luxurious way was to have John maintain his footing and dignity through remaining as nearly and dearly as possible next to Silvia. When couples cannot bear to be apart, they suffer undo stress in the long run. How to make the best of a difficult situation is realizing upfront what is important to hold on to and what to let go of.
A recent Fox News article commended the bravery of 14-year-old girl named Jerika Bolen on her decision to forego living with spinal muscular atrophy and withdraw ventilator support at the end of summer. Bolen’s physician, a pediatric palliative care practitioner, stated that the standard of care for patients with spinal muscular atrophy is to provide comfort measures. Reportedly, Bolen expressed that she was “super happy” and no longer needed to think about anything bad.
Similar to Jerika, Silva had to let go of the need to prolong John’s life in order to grant him peace of mind and offer less heartache for everyone involved. A palliative nurse was consulted in the ED and arrangements were made for John to return home. John seemed to be all smiles as I bid farewell. We mutually thanked each other for our career service and the family expressed gratitude. The state of great comfort – luxury – is the quintessential wish to die for and the appropriate accommodation for those near the end of life.
Whereas Prince did not have an estate plan before his untimely death, I am weirdly planning to be here today (in Phoenix) and gone tomorrow (to St. Louis). When my father takes his last breath this week or next, I anticipate that a part of my life will stop as he passes – rapidly moving from a state of living to mourning. Not only is death inconvenient, it’s awkward. Dad dreads waking up each day and realizing that he is still alive. In the back of Mom’s mind, she wonders if there isn’t a pill to make this all better. Needless to say, some states have such a pill. Was my faithful mother having second thoughts about the sin of euthanasia actually being a blessing for both the living and the dying?
I stand by the phone as my six siblings take turns watching over dad both day and night, torn between my duties as an ER doctor and doing my part as a family member. I am scheduled to be in St Louis next week to speak at a conference, but will Dad hold out that long? Is it practical to potentially fly back and forth three times over a span of 10 days? Is there anything that I might do that is not already being done? Is there something I still need to prove to Dad? I recently had a reassuring phone conversation with him as we both shed a tear. If there was any doubt that I mattered to Dad, he poignantly placed those doubts to rest.
Now I wait – balancing my living with Dad’s dying and trusting that the universe has a larger plan that will work in my favor. Following a phone conversation with my sister, I realized that if fate works according to my schedule, it will undermine her best interests. Seemingly, Dad’s death has become a contest of wills. Which family member will prevail in the desire to have dad’s passing occur at their convenience? Battling forces that are out of anyone’s control creates the opportunity to balance yin and yang in order to achieve harmony. While Dad is actively letting go through a yang appeal, I uphold the yin part by attempting to play it cool and remain passive to any agenda.
Similar to the throes of dying, the lingering perception has existed that there was always something wrong with Dad. He was a great provider, but never measured up to the romanticized version of Ward Clever. He was a man of deep faith, few words and a quick temper. The process of dying likewise leaves people at a loss for words, triggering emotional outbursts. Despite my mother’s best efforts, my father never wavered in his ideology or behavior. His integrity was his greatest strength. Through the example of his life, he taught his children a profound lesson about death. Simply put: Take me as I am.
There is a huge impetus to change the way we die in this country. The plan is to have more control over the situation and less acceptance of the process. We generally do not like to sit and wait, abiding in this yin state of mind, body and spirit. We are apt to become restless as the situation unfolds. We prefer to wonder while multitasking rather than using this waiting time as a purposeful period of deep reflection and appreciation. As I plan for my own death while living through my father’s passing, I am reminded to take life as it is and not as it was intended. There is no real plan for life except to love. Accordingly – love is patient, love is kind and love has no attachment to a sure plan.
The wrap-up of Christmas with my family occurs the weekend before the actual holiday. We have established Saturday before Christmas as our time to celebrate the season, exchange gifts, break bread and share a glass of cheer. I return from St Louis and anticipate working the actual holiday in the Emergency Department. Some people feel sorry for me while I feel blessed for having this time to unwind before the holiday comes and goes. As in the larger experience of life, there is a time to be merry and a time to be mellow. Having this time to be melancholy amid the boughs of holly is actually self-indulgent.
Oftentimes Christmas morning ends and New Year’s Eve begins with little time for oneself in between the holidays. The divine force of giving and receiving is omnipresent during the Yuletide season and throughout life, but most of the focus is on gift-giving rather than counting personal blessings. We are taught that it is better to give than to receive. However, the moment of overwhelming joy in It’s a Wonderful Life occurred when the front door was opened to receiving magnanimous support and absolute gratitude.
I mostly care for people at the end of life who are expected to give more of themselves and receive less respect in return. Family members are often challenged by loved ones who linger before they pass. They prefer this time be hastened because it feels awkward to just let them be. However, the same opportunity I enjoy between my family’s Christmas celebration and the actual deadline for Christmas is same gift of time and space that is needed for those dying to feel mellow, reflective and blessed. I suggest family members perceive their loved ones to be in the sacred chambers of a monastery during this time with Quiet Please adorning the headboard of their death bed.
How do you measure – measure a lifetime is the question posed by the song Seasons of Love. The seasons of life and love are reflected in the family snapshot that headlines this post. It was taken in a photo booth at my nephew’s wedding this past year. Its vivid colors and abundance of character reflect our seasons of love along with the required give and take inherent to a large family. If I were to measure my life by the combining the ages of my parents and siblings, there are five hundred – seventy one years to consider. Given the abundance in my lifetime, I might need additional time at the end of life to simply fill grateful and fulfilled.
Moments of reflection might be included at the end of the day or every season. Similar to mourning and meditation, mellow moments allot time for every purpose and promote quality of life. Those dying have a purpose not to be interrupted, but rather sanctified. Following the last hurrah of a family celebration, patients might be granted a stay of reflection to count their blessings as a rite of passage, abiding in personal satisfaction and fulfillment. A lifetime of love needs no final words, simply a solemn moment and opportunity for the loved one to rest in peace before the actual O Holy Night.
When is Grandparents Day? Why celebrate grandparents? Is it simply another holiday for the greeting card and floral industries? Established by the U.S. Senate during President Carter’s administration, National Grandparents Day is designated the Sunday following Labor Day. While acknowledging those contributions made by seniors throughout history, it is more importantly a teachable moment. National Grandparents Day is symbolized by a bouquet of flowers and children without grandparents are encouraged to adopt senior citizens who might otherwise be forgotten.
Gift ideas for grandparents are easy. A card, phone call or visit will suffice. Seniors generally have all the stuff they need and prefer others not make a fuss. While some grandparents may enjoy travel, most tend to be homebodies. The perception of being unadventurous and not living fully can often be unsettling for others. Most elderly will claim that they have had a good life and require less interaction with others, especially doctors. Many other holidays present opportunities to connect with grandparents and for family members to realize that grandparents may not be doing as well as expected. Illness and depression are prevalent among the elderly; it may be time now to do something for their own good. Consequently, Grandparents Day often becomes a big celebration in the emergency department.
Grandparents and grandchildren share a special bond of vulnerability regarding supervision and intervention being provided on their behalf and for their own good. Let kids be kids is the advice grandparents give to their children, but rarely adopt for themselves as parents. Let seniors be seniors requires an even greater leap towards letting go. Letting go is the practical application of unconditional love. This type of love is not the blossom of a forget-me not flower, but rather the supportive indifference of the patient flower. Patience as tolerance allows children to be free to be me and seniors to have their wishes granted.
Parents as caregivers readily lose patience because they are simply too close to their own children and parents to easily step back from attempts at intervention. They often become busybodies without boundaries. Do-gooders insist that grandparents die better in hospitals as they feel less guilt regarding not doing enough to save their lives. Certainly, President Carter is confronting his own personal do-gooder in the role of grandparent while attempting to fight brain cancer at age 90. Who dares play the devil’s advocate by suggesting that this brain cancer might be a godsend for a life well-lived? Only those who believe that the indifference of unconditional love trumps unending suffering.
Grandchildren are loved unconditionally by their grandparents. This relationship extends to the perception of God as a Grandparent who loves all humanity as his children. God as the Father tends to discipline his children, expecting more from them. Despite the significance of the grandparent-grandchild relationship, grandchildren are typically sidelined during end-of life conversations. I had a forget-me-not awakening during a speaking engagement regarding end-of-life care. I questioned a young woman as to why she was purchasing my book, Wishes To Die For. She simply replied, “I have a grandfather.” The unspoken implication was that she had an unconditional duty that was born from the love of the man she presumably hailed as God.
This granddaughter’s ability to essentially step up and assist her grandfather from one existence to another, from one side of the street to the other, melted my heart. It was the quintessential good deed as demonstrated by a boy scout helping an elderly person cross the street. I witness the same act of kindness at the gym when a young bodybuilder graciously responds and assists an elderly man with an unfamiliar machine or modifications to his workout. Senior citizens become forget-me-nots or hurt themselves when failing to ask for assistance with unreasonable undertakings. By gathering their thoughts during the prime of life through reading Wishes To Die For, people are less likely to be forgotten and more likely to be dearly remembered. The greatest gift of being a grandparent is to love and be loved unconditionally.
In a roundabout way to explore good conscience in the practice of medicine, I was intrigued by the article by Dr. Phil titled, Stop Spoiling Your Kids.[i] As a physician caregiver, I often question how I might be spoiling my patients. “Over-indulgence is one of the most insidious forms of child abuse,” as quoted by Dr. Phil. I have long felt that patients are abused at the end of life by obliging them to receive unnecessary intervention that prevents them from reaching their full potential through the experience of dying. Guiding, more so than giving to others, is generally rooted in good conscience. Caregivers might actually lessen their feeling drained by redefining themselves as careguiders.
Adopting the bullet points from Dr. Phil’s article might provide insight for caregivers and physicians alike in how to become effective careguiders.
With considerable angst, I cared for an elderly gentleman who had Multiple Myeloma, recurrent pneumonia and was not responding to treatment. He was also receiving dialysis and experiencing insufferable bone pain. He arrived by EMS gasping for breath and his blood pressure was low. It was clear he was not long for this world. In fact, he repeatedly stated, “I’m done.” Luckily, his adoring wife entered the room within minutes of his arrival for us to weigh medical intervention for or against his wishes. She was gorgeous and clearly in command of both her appearance and the situation, but hot her husband’s feelings. She was adamant that any decisions regarding his care would be based on obtaining all standard laboratory and x-ray findings, not his wishes. She was not done yet.
This man was dying and deserved to rest in peace. The wife insisted he was delirious while at the same time she professed her belief in miracles. As a doctor, I am trained to look at the person first before relying on numbers. With her image resembling that of a sexy puritan. I was lured into believing that she might agree to have me initiate a hospice consult if the numbers were dismal. In retrospect, this man never had a prayer for hospice care given her cause of righteousness. The test results only prompted her appeal to pursue further intervention. Oddly, I found myself looking away as I spoke to this woman with a great smile and seething affect who stood in opposition to her husband’s pleas for dispensation and mercy.
God help the righteous; blessed are the merciful. The righteous become trapped in belief systems that seemingly pay mind to loving in a proper way (by the numbers). Notwithstanding, mercy is loving from the heart. To be righteous is a conservative principle, while being merciful is a liberal principle. This distinction is how the opposing factions seemingly line up on either side of the pro-life movement. I used to feel there were merits to both sides of this argument. However, I cannot imagine there being any merit to not treating people kindly, humanely and with mercy. In general, being righteous does not serve humanity. In this story, having a righteous wife defied reason, empathy and this man’s dignity.
We might agree to disagree, but not simply in the cause of righteousness. Ideally, we might agree to work towards affinity with one another. I realize that this woman was daring me to suggest withholding or withdrawing care from her husband. She was handing me a shovel and if I were to dig, she was going to dig her heels in deeper in a cause to save her husband’s life. For my patient’s sake, I simply treated him in my own conservative way and by the numbers. He was ultimately transferred to the ICU for further intervention while I washed my hand of her self-righteousness. In the meantime, I considered my own righteousness in the conundrum of providing mercy and dignity to those dying.
I have been eager to obtain endorsements and reviews in support of WISHES TO DIE FOR. I recently met someone who knows the CEO of General Electric, Jeffrey Immelt. My new acquaintance tells the story of how Mr. Immelt toured an extended-care facility, commented that many of the patients appeared catatonic and was surprised to learn that many of these individuals were on dialysis. He was indirectly asking the same question posed through my practice of Emergency Medicine and as author of WISHES TO DIE FOR: Is over-treating patients who are starring at the end of life reasonable and compassionate? Seriously, I am talking about people who others do love.
As the former CEO of GE Healthcare, a light bulb suddenly turned on in my mind. I decided to send Mr. Immelt a copy of my book and possibly have a prominent name share insightful words and endorse the concept of wishes actually aiding certainty and dignity. GE and WISHES TO DIE FOR share the same enterprise to “bring good things to life.”
Following my return from the post office, I received heart-warming endorsement from my 32-year-old nephew stating that he found the book both “interesting and informative.” I would not have imagined him reading this book as he is not exactly of my niche “audience.” He prefers NASCAR racing over reading. He goes on to text: We were excited to get it and I thought I would read it later, but after reading the letters in the back of the book to gma and gpa I just started reading it. It never dawned on me that my book was talking about someone he loves too.
At a recent book presentation, a 20-year-old woman was eager to purchase my book and I was curious as to why she was interested in it. I received the message in a heartbeat as she simply replied, “I have a grandfather.” WISHES TO DIE FOR was primarily written for her grandfather, but might be more likely read by those who love him. It was written to generate a conversation and to gain a greater appreciation for those we love including ourselves. Declaring end-of-life wishes becomes a personal responsibility that is not to be taken be taken lightly, similar to any marriage proposal.
Coincidentally, my nephew asked his girlfriend to marry him last week. Having sponsored him in the Sacrament of Confirmation, I suggested that the commitment to love, honor and cherish is not only the next sacrament, but is actually man’s proclamation of loving another as himself. He understood immediately and confidently replied that I was talking about someone he does love with his whole heart. As actions speak louder than words, having released WISHES TO DIE FOR with its inherent promise to live and let die wholeheartedly provides a resounding message of self-endorsement.
Personally, life and love have always felt like obligations. Becoming Big Brother was simply my choice. Abandoned by his father and described as a sensitive child who cried a lot and had few friends, Daniel was instantly recognized as my Little Brother. I was matched with Daniel shortly after his eighth birthday in September of 1998 through the Big Brother Big Sister school program. We met weekly, balancing time spent on homework with various weekend activities. We grew closer through hiking, biking, rollerblading, snowboarding, and watching movies. Shortly after meeting, Daniel poignantly expressed, “Since I met you I no longer cry at night.”
My transformation as a Big Brother occurred during an anguishing moment for Daniel. He was obliged to wear a seemingly uncool derby while horseback riding and looked positively adorable. I realized that most of my own childhood perceptions of being goofy were actually of my choosing. I may have easily been seen as adorable despite having red hair, freckles and buck teeth. Daniel made me really look good when he won the essay contest titled Why My Big is Best, distinguishing me as a finalist for Big Brother of the Year. Our match culminated in my speaking on Daniel’s behalf at his Eagle Scout Court of Honor and having received a pin stating Eagle Scout Dad!
With the willingness to serve and die for his country in the U.S. Navy and his eagerness to become a young father, Daniel’s life did not turn out as I had hoped, but rather as I had advised, “Listen to the little voice inside.” My growth as a Big Brother was enormous through both soothing the tears of my own inner wounded child and choosing to support Daniel becoming Dan without any attachment to him becoming “Super Mario Brother.” The enlightenment born from this match of service with compassion provided inspiration for my writing WISHES TO DIE FOR, a heart-centered guide for those who feel forsaken as they approach the end of life.
Halloween inspires horror stories of lives that end tragically and end-of-life stories that result in character assassination. Barbara Mancini is an emergency nurse. As a cohort and emergency physician, I can serve as a character witness. Nurse Mancini headlined 60 Minutes this week with her story of being arrested for aiding in the death of her 93-year-old father. Terminally ill from cardiovascular disease and receiving hospice care, he had been perfectly certain that he wished to die. One morning he asked Ms. Mancini for his bottle of morphine and promptly ingested what remained in the bottle. After being informed of this personal matter, his hospice nurse contacted the police.
Ms. Mancini, his acting healthcare proxy was taken to jail. Her father was transported to the hospital against his wishes and the sedating effect of morphine was reversed. Ms. Mancini was stripped of being her father’s caregiver and required to take an unpaid leave from her job. This public humiliation and righteous indignation reminded me of the novel, The Scarlet Letter, which takes place in a Puritan setting nearly 400 years ago. At present, the same storylines of dignity, legalism, morality and guilt continue to challenge our culture, creating chaos at the end of life rather than peace.
What I find most disturbing in this story is that the hospice records noted Ms. Mancini’s father as being a difficult patient who would periodically refuse medication. Was hospice intervention attempting to keep him alive while he had a wish to die? In good conscience, what type of physician would reverse the effect of morphine on a terminally-ill patient? Is there no charge for aiding and abetting suffering to those dying? This man died four days after the morphine overdose. His death certificate listed “morphine toxicity” as the cause of death. The hospital records indicate that he was more irate from the cruelty shown to him and his daughter than actually being ill from the morphine overdose. Is there any doubt that this man died of a broken heart caused by a broken legal and healthcare system?
Dr. Ira Byock, a palliative medicine specialist, states, “Human beings have intrinsic value.” When patients’ self-worth becomes diminished, “Dignity is held by the family and resides in the relationship.” However, Dr. Byock’s assessment and plan for this medical conundrum enlists more effective hospice intervention rather than an acknowledgement of the unconditional love between a father and a daughter. Without thinking, Ms. Mancini freely handed him the bottle of morphine from arms extended from a nonjudgmental heart; honoring the profound relationship between intrinsic value, free choice and self-determination.
Ms. Mancini can rest assured in having followed her heart and can proudly bear the title Scarlet RN as a badge of honor. The healthcare and legal system will continue to have blood on their hands for the massacre of this man’s life, death and dignity. The chaos at the end of life will continue to haunt society until there is a coherent message. One that proclaims true compassion arises from free choice and dignity becomes adulterated from condemnation.
Routine urinary infections can be life-threatening in elderly patients. Last year my always-organized mother developed disorganized thinking in conjunction with a urinary infection. She claimed over our weekly phone call that her new medication did not make her feel right. She neglected to mention that having a fever was the reason for this medication. The reality of Mom’s apparent confusion indicated she was slipping and not destined to live forever. We needed to have a conversation. I needed to create an opportunity to get some things off my chest, out in the open, clear the air and make room to breathe.
As an EM physician I listen to patients’ medical complaints and heartaches. Many share stories of missed loved ones who weigh heavy on their thoughts; complete with raw emotion and ready tears. We need to have a conversation about grief. Preventing future heartaches come to pass through honoring loved ones’ impact in the present. I can’t live if living is without you is the refrain that repeatedly plays for survivors anchored in grief. Life becomes suffocating when failing to release loved ones through thoughtful rituals and thanksgiving. Heartaches arise when love is choked-up rather than expressed. Death is experience as loss rather than fulfillment.
I chose to enact a ritual on Mom’s 88th Birthday based on The 5 Love Languages written by Gary Chapman. He describes the love tank being supplied by five pipelines of flattery or affection that include words of affirmation, quality of time together, gifts given, acts of service and physical touch. In recognizing Mom’s lifetime achievement, I pulled out all the stops and showered her with each language of love. My gift included hand delivering one of the paired hand-stitched pillowcases she lovingly gave me previously. This offering solidified that each of us would rest easy and be connected for eternity. I adorned the pillowcase in a pot of gold along with an attached letter of affirmation. Quality of time spent on her birthday was realized through service of taking her to an eye appointment followed by a grand lunch. The day ended with a big hug.
Relationships with parents is not casual, it is newsworthy. Therefore, I contacted the local newspaper with the prospect of publishing my Mom’s lifetime notoriety prior to eventually printing her obituary. Extra! Extra! Read all about it! – became this pompous commencement exercise. I was busting at the seams while honoring her birthday as an actual graduation ceremony. I was soaring from the triumph of cutting the strings and letting Mom take wings. The next time she develops a urinary tract infection we are both be free not to treat it, allowing her to ascend from this world. Lifetime achievements instill wonder in regard to what life might be like without the honorees’ contribution. Nevertheless, love with gratitude leads to fulfillment; completeness extols letting go.