The end-of-life journey generally has many bumps in the road along with unforeseen calamities. Karl, in particular, had a series of misfortunate illnesses. He was a 62-year-old athlete with an easygoing personality and positive outlook. After undergoing ankle surgery, Karl developed a flesh-eating infection that subsequently led to a below the knee amputation. Meanwhile, a routine chest x-ray revealed lung cancer. Karl agreed to chemotherapy, but this destroyed his bone marrow and the ability to produce red blood cells. After several blood transfusions, Karl stopped the chemotherapy and was resigned to fact that his oncologist had nothing further to offer.
Karl’s cancer progressed to having created a fluid pocket that was encasing his lung and Karl found himself in the emergency department struggling to breathe. I explained to Karl that draining the fluid from his lung was similar to having repeated transfusions. It is a temporizing or palliative measure. Although Karl and his wife were engaged in our conversation, this stopped when I asked if hospice had been considered. His wife promptly replied, “We are not there yet.” While respectfully agreeing externally, I internally disagreed. Karl had reached the point of no return in his recovery and seemed to be simply making due with his dismal quality of life.
Prolonging life past the point of no return is often self-destructive and senseless, leading to less dignity and more uncertainty. With no clear final destination, how will Karl know when he arrives there? If his breathing suddenly worsened, would he want to be detained further by being placed on a breathing machine? Endure more suffering? The recent proposal that Medicare pay for physicians to speak with patients regarding their wishes for end-of-life is care is admirable, intending to ease the burden on patients near the end of life. However, this will more than likely fall on deaf ears if patients have not determined their final destinations in order to receive end-of-life care.
Most patients in the emergency department are not there yet while still attempting to gain the most from life. The notion of a final destination seems defeatist. There is an undying feeling that something more lies beyond the horizon and one more admission to the hospital might be advantageous. This never-ending prospect tends to have people tend to reach the final destination as a dead end and not as the pot of gold at the end of the rainbow. Seemingly they have their head handed to them on the proverbial silver platter. This is a frightening proposition, yet most tend to bury their heads under the covers rather than foresee their endpoints. Those who pre-determine these endpoints are more likely to reach home base successful and safely. One arrives there when ultimately deciding to make peace with a personalized final destination.
It is never easy to go out on a limb with patients and family members when nearing the end of life. Recently, I had the pleasure of attending to Penelope, an endearing elderly woman who was transported by EMS to the emergency department due to a change in mental status. Her distraught daughter rushed into the room within minutes of Penelope’s arrival and scrambled to find the notebook listing Penelope’s vital signs at every waking hour for the past several days. Penelope was being treated for a urinary infection and had recently stopped chemotherapy for multiple myeloma. She had vague pain over her bladder, but otherwise seemed to be pleading for mercy.
While sitting at the computer and entering orders on behalf of Penelope, I wondered if hospice had been consulted. I felt self-defeated even as I called the daughter out into the hallway and inquired, “Has hospice been consulted?” I could see the anxiety of the daughter physically evaporate. She had actually raised this hope with Penelope’s primary physician four days prior and was shamed into believing it was too soon for hospice to be consulted. Although, I had doubts that significant change had occurred in Penelope’s condition, my belief is that most patients receiving palliative care that arrive in the ED generally deserve a hospice consult. Presumably, this situation would be no less serious than a cardiac patient having chest pain having a cardiology consult.
Oftentimes, the task of emergency medicine is to capture people who fall through cracks in the healthcare system. If emboldened EM physicians can go out on a limb and recognize patients who are dying sooner than later, might we also initiate hospice consults as a matter of standard practice? InWishes To Die For, I wrote, YOU CAN’T HANDLE THE TRUTH if a hospice consult is declined by a patient. I wonder how many patients fall through the cracks of physicians not diagnosing the truth of patients being near death. Free at last! It appeared as though the daughter was skipping while pushing Penelope out of the department. Arrangements had been made for home hospice the next morning.
There was a remarkable moment that ensued as the great-grandchild boldly approached me and questioned why I was releasing Penelope from the hospital so soon. I essentially explained that it was the honorable thing to do, given the circumstances and Penelope’s aversion to hospitals. He understood and politely thanked me. In retrospect, I realized that my practice of medicine may not be remembered for how I cared for patients, but rather how I effected the hearts and minds of their descendants.
The more certainty I create regarding end-of-life care, the more confusion I confront relating to hospice care. Are hospice patients expected and encouraged to manage their lives or be relieved of duties and decisions being made on their behalf? While enrolled in hospice care, are patients to affirm life or to affirm a rite of passage? Is it not automatically understood that hospice patients would not to be resuscitated? What choice remains to not die while receiving hospice care? Why are hospice patients continually prescribed preventive medication and other curative treatment? How is it that a previous hospice patient is no longer receiving hospice care when there is no substantive improvement in health? Lacking standard practice, healthcare professionals are often squeamish about end-of-life care that seemingly creates hysteria in providing hospice care.
Sadly, I attended to a 40-year-old woman who had been bedridden and unable to speak for eight years due to Huntington’s disease. Her hospice care had been discontinued when a dispute occurred between her mother’s desire to prolong life and her husband’s wish for her suffering to end. Meanwhile, the patient laid unresponsive. While it was presumed that she had another infection, the patient immediately woke up when an antidote was given to reverse the narcotics in her system. Her weakened state reminded her husband the physician was recommending a feeding tube. He shook his head in frustration. Clearly, it was time to reconsider hospice care and he agreed. As the medical power of attorney, he would deal with his mother-in-law. The hospice nurse determined that this patient met the necessary requirements for hospice care, but the physician who was advocating for the feeding tube had to authorize it. This nurse remarked that not all physicians readily endorse hospice care, oncologists were the worst offenders.
On a subsequent shift I cared for a hospice patient who had discontinued chemotherapy for Multiple Myeloma following admission to the ICU for a heart attack. As the Multiple Myeloma was now progressing, his bone marrow was overproducing cancer cells while his red cells and platelets were in short supply. He was advised to be admitted to the hospital through the ED in order to receive the necessary blood transfusions. Was this necessary? I surmised that the transfusions were necessary because he was angry. Fate had given him a bum rap at the ripe old age of 81. He remained adamant on going for the gusto with valiant fervor. However, I did not consider him an actual hospice patient. He was receiving palliative care under a hospice pretense with a hostile agenda. Hospice care that potentially allows for peaceful transitions requires humility from patients, physicians and caregivers alike. Humility is what makes hospice care understandable and offers peace of mind to those aspiring to receive dignity and respect at the end of life.
Surrounded by family early this month, Brittany Maynard left this world in a blaze of glory, courage, wonder and fireworks. Meanwhile, I witnessed the counter-strategy of another patient enduring the end of life while waiting aimlessly in the Emergency Department. This patient was in her 70’s, had metastatic lung cancer, kidney failure and total bone marrow suppression. In other words, she had few white cells to fight infection, few red cells to transport oxygen and few platelets to clot blood. Her evaluation had been completed prior to my arrival. Her disposition was to be admitted to the hospital and receive transfusions once she had adequate IV access. Never mind the fact that no one would dare make any blind needle sticks to a patient whose blood would not clot, risking her life.
While phone calls were being made to enroll interventional radiology at the highest level and maximize the attempt at finding the vein through imaging, I walked by the patient’s room and saw her waiting in solitary confinement. No one knew what to do for her or even wished to touch her at that moment. Proper physician conduct would not allow me to intervene on another physician’s patient unless requested. With the relay of patient care, sometimes referred to as turfing, the hospitalist took over as it was assumed that the patient would be admitted to the hospital. The ED physician was off duty and ready to wash his hands of the situation.
It came to pass that the hospitalist entered the room, obtained the patient’s medical history, performed a physical exam and made an assessment. He emerged from the room following his evaluation with an order to call hospice. If the patient was not dizzy upon arrival to the ED, she must have been in a tail spin by now. What direction had she intended to go in regarding medical treatment prior to presenting to the ED? Had she not chartered her course for terminal illness? Who was ultimately responsible for the care she was receiving? Certainly, she had been informed of her terminal situation, yet seemingly “turfed” her end-of-life decisions to the hospitalist that day.
An hour later I walked by the room and noticed five or six family members gathered at bedside. It looked to be a pity party with very little personal interaction. What are people to say when a patient is being ejected from both the hospital and life simultaneously? This must have been embarrassing for the patient; feeling as though she was being hauled off to a concentration camp to await death. She had no choice in this situation, or did she? Empowerment and personal dignity arise from choice. Imposition and indignation arise from poor planning resulting in pity. There is no rewriting the end of life. Therefore, we need Advance Care Directives to combat its imposition and annihilation.
Those who can, do; those who can’t, teach. Those who truly teach do so through their actions.
Last week I presented my vision for Universal Healthcare Directives at the Gateway Alliance End of Life Conference held in St. Louis, Missouri. I was prepared to teach the audience how to apply the golden rule of loving one another as ourselves, in particular, during the “golden years.” What I learned from stepping outside the Emergency Department was that hospice volunteers have been quietly spreading this message for years. They are not paid to care; they simply care from their hearts. Their acts of kindness readily connect with others emotionally, demonstrating compassion in action.
Similar to guardian angels, we may not always notice volunteers among us. Unassumingly sitting in my audience, I saw them as messengers who speak my language. I remember one of these messengers, appearing as a spiritual guide during my early years of practicing Emergency Medicine. She called my attention a book titled, “Conversations with God.” While I was already talking with God, it was not through casual conversation. Having read this book, I voluntarily exchanged my catechism for an adult conversation with God, expanding my wingspan of spirituality. I tilted these wings to align my human existence with a spiritual awareness.
We are challenged to love ourselves throughout life. Particularly challenging is loving ourselves if diseased or bed-ridden. Family members are not always adept at knowing exactly how to love us to death. Hospice volunteers have a knack for knowing what to do without needing to be told how or what to say. Not becoming hung-up on what the mind of God might be or how God works in mysterious ways, these individuals simply focus on loving from the heart; love becoming a ministry, not a mystery. People at the end of life need to know that they are loved. Hospice volunteers convey the message that love can be both unconditional and unspoken.
Hospice volunteers invite us to attend a spiritual banquet through thanks and giving. They have an attitude of gratitude that compels giving from their blessings. More importantly, they teach us all how to count our blessings, making those blessings count through selfless deeds. Their spirit is what we might choose to take to heart while taking our last breath.
Richard Martinez, the father of a slain UCSB student last week, has vowed to start a write-in campaign to address “Enough is enough” in regard to gun deaths in the U.S. While at my nephew’s graduation this past weekend my sister-in-law stated, “If her daughter’s school declared a valedictorian, there would be a bloodbath for the top spot.” Perhaps a little competition and gun ownership goes a long way; full-on competition and armament seems to wage wars.
WISHES TO DIE FOR expands upon the judicious use of the healthcare system in a similar statement of “enough already;” particular when patients receive palliative care. In its Latin derivation, palliative means to cloak. As family members and physicians hover over patients toward the end of life, I observe patients being smothered. The Herald-Tribune recently published the article, “Why Don’t More Doctors Give the Care that They Would Want?“ It mentions that patients see an average of ten different doctors in their last six months. Personally, I don’t particularly care to be smothered by ten doctors before dying.
Upon googling the phrase “enough already,” I was struck by one explanation that stated, Please stop now, before I become violent. In a society that promotes a no holds barred in regards to Advance care and Second Amendment rights, whatever happened to the concept of anything in moderation? Repercussion from the extreme of saving and defending a life push people to the brink of assisted-suicide and homicide.
Martinez reportedly and rightful asks, “When will this insanity stop? “When will enough people say, stop this madness?” I question whether this is a personal initiative or a political campaign? Do I arm myself with an Advance Care Directive that, in essence, enacts a blood bath or a peaceful surrender? Might I assert self-defense through non-violence? If a little competition goes a long way, how far might a little kindness go? Would it stop the madness? Would it stop me and others from becoming victims?
Competition spawns violence. Moderation affords mercy and forgiveness. Whatever trespasses and illnesses may come my way, this doctor wants the care that leans toward moderation. By setting boundaries at the outset of realizing I will die one day, I give myself permission to live and to die without becoming violent in the process. Enough is enough when my aim in life is contentment, not armament.
The botched execution at the Oklahoma State Penitentiary last week reminds me of what we as a society fail to view as being right regarding death. Most of us believe that no one deserves to die; therefore, lengthy appeals are filed to ensure that no one dies unjustly or in an untimely manner. From the perspective that no one deserves to die, I believe that lengthy death sentences are an injustice. “Why do we keep these patients alive?” As an Emergency Medicine physician, I frequently struggle with this question. If the film, Heaven is for Real, is convincing, would it be merciful to believe that people on death row deserve enjoy heaven sooner than later?
Believing that all people deserve to go to heaven changes both the paradigm and the paradox of end of life conversation. I believe the simple truth is that all people die and deserve to die humanely. When people do not deserve to die, frequently, more is expected from them than may be humanly possible. As I attended to a sixty-one year old woman with severe emphysema in respiratory distress from the left side of the gurney, her children kept watch over her life from the right side. While she obviously did not deserve to die, conversely, did she deserve the life sentence of imprisonment on a respirator for having been a smoker?
This patient, literally, had no say in the decisions being made. She was exhausted and poor ventilation was causing her carbon dioxide level to rise, contributing to somnolence. She had previously been on a ventilator and the children were well-aware of her “aversion” to this intervention. This had occurred five years ago when she was not on continuous oxygen. Presently, her worsening lung disease required continuous oxygen. In believing that this woman deserved to die, I found myself strangely acting in the role of an executioner rather than doctor.
Deep down I continued to act in the best interest of this patient while aware that her children were pulling for their mother’s exoneration and survival. My patient, their mother, was holding her own for the moment with adequate vital signs, oxygen saturation and comfort. Therefore, all of us took a step back to see how she would progress on her own. Often left unspoken, the proverbial patience is a virtue might respect the process of dying. People all deserve to die on their own time and terms with forbearance and mercy.
The term Death Midwife strikes the tone of being both sexist and purely decadent; relishing the idea of being cradled in a woman’s arms while dying. The concept is not likely politically correct; but could it be morally correct? Similar to a birth midwife, a death midwife nurtures and guides delivery from life to death. A death midwife naturally provides a hands-on approach to dying, theoretically, making the process more indulgent and less clinical. In biblical terms, death midwives are comparable to the Galilean women who prepared Jesus’ body for burial, “They took the body of Jesus and bound it in linen cloths with the spices.” (John 19:40)
In the fast-paced ER, a corpse is placed in a body bag with a toe tag. The perceived failure of a person dying in the hospital becomes mitigated by shoving the body into the morgue. In the presence of a death midwife, those dying become exulted through being pampered and respected; creating a paradigm shift for people transitioning from life to death. There is a curious contradiction within people who do not deserve to die and ultimately experience the detriment of not dying. Remaining open to being loved to death would actually be a refreshing change.
Women are built to be receptive; while men tend to be assertive. Following a man’s lead, people are encouraged to fight until the bitter end. In WISHES TO DIE FOR, I suggest crossing a contrived finish line before death. This would create a distinction between a time to live and a time to die. Making time to die is not an option available to people who do not accept death. Becoming receptive to any of life’s challenges involves practice, creates awareness and leads to openness. This budding process of receptivity redefines the end of life as a flowering experience.
While flowering is not gender specific, it does connote a feminine attribute. Men possess a similar capacity to blossom, but often tend to hesitate in letting their guard down. Ironically, the means to a good death might actually occur in specifically letting the guard down; becoming both more receptive and accepting of death. A death midwife provides an example of someone who truly embraces death. It is a higher calling from which to bathe a consciousness of tender loving care that can provide for a good death. Women generally have a knack for this; men may require remedial work on breeding receptivity into life passages.
Have you ever come across someone struggling to breathe and feel inept at being able to help the person? Can you imagine struggling to breathe while your closest ally is incapable of handling the situation? Struggling to breathe occurs, literally, as people die. Assisting people who are unable to breathe is what I have been called to address as an Emergency Medicine physician for over twenty-five years. Assisting people who are called to die in real life with an Advance Care Directive that could truly express their wishes is what I have undertaken for the past four years while writing the book WISHES TO DIE FOR.
I fervently believe that we need to speak about dying in order to assist those struggling in this journey. Globally, we attempt to save peoples’ lives with CPR. In a conscious effort and a global initiative I want to counter the calls for CPR with WISHES TO DIE FOR; assisting people struggling to breathe who also wish to die in peace. Achieving peace begins with extending a supportive hand to others with reciprocal interchanges of support. Communicating this succession of dignity revolves around the personal resolve to enlist certainty being present in real life wishes that would purposely propel the circle of life.