Abstract:
This article highlights how the end-of life medical care that patients receive may not be the type they need. Palliative care addresses this disparity. It provides a win-win scenario by enhancing quality of life for patients and their families, while reducing costs. Humanizing care of the dying requires a comprehensive approach and the recognition that dying is more than a medical event. It is the closing of a meaningful life. This view is supported by research on dying patients who relay rich inner processes that not only lessen the fear of dying but validate the life that was led.
Key Words:
dying, end of life, hospice, palliative care
When confronted with the reality of dying, most patients identify with the words of Rainer Maria Rilke, “I don’t want the doctor’s death. I want my own freedom” (von Salis, 1964). Ironically, doctors themselves don’t want “the doctor’s death” and are more likely than the rest of society to die quietly at home than in a hospital. The problem starts in medical school where death is taught as if it is the enemy to be fought, or at least tamed. If one has an aversion to death, medical school is a safe place to be—the curriculum hardly mentions death, let alone how it might be to experience it. As the science of medicine outpaces its art, modern medicine continually seeks to defy death. Medicine’s awkward relationship with dying is mirrored by our cultural belief that illness is potentially curable and dying is something that happens far away. We have lost our way with death and dying. It has become easier to live longer but harder to die well.
Our reluctance to discuss dying often leads to end-of-life care that is too little, too late. Humanizing the dying process must begin with improved communication at the time of diagnosis and be premised on the pillars of truth and transparency. Our patients and families increasingly want and deserve information about diagnosis, treatment options, and prognosis. Communication between doctor and patient needs to be much more than a transactional exchange of often poorly understood medical information. The approach to breaking bad news needs to be patient-centered and tailored to the individual. It should be predicated on first determining what the patient knows and how much they want to know. Dying is not about failing organs or a medical problem to solve, but about the concluding chapter in a whole and full life. As such, what matters to the dying patient isn’t always observed, but felt.
When people with serious illness have conversations with their doctors and nurses about their personal values, goals, and what might lie ahead, they are more likely to receive the care they want, and they feel less distress, while reporting a better quality of life (Bernacki & Block, 2014). This sort of dialogue should be ongoing throughout the disease trajectory.
The patient-physician relationship, however, too often ends when the options for cure and treatment are no longer available. At the precise moment when patients need more support, they frequently feel abandoned, especially when the doctor says, “there is nothing more I can do for you,” which may best be translated as “there is nothing I can do to you.”
Prognosis Often at Root of Problem
Communication issues extend to prognosis, which is often imprecise and may deny the patient access to palliative care, or a sense of control and an opportunity to say goodbye. In instances in which the patient is given a timeline for approaching mortality, they often know little about what to expect when facing the end-of-life. Tragically, this is a void often filled with fears that are worse than the reality experienced.
What patients facing end-of-life want is as reasonable as it is relatable—they want pain and symptom control, their wishes honored, and inclusion in decision making. They want to achieve a sense of control and to avoid the sufferable prolongation of the dying process. They want to die in their own home, surrounded by loved ones. Sadly, the death people wish for too often turns into the one they fear: an overly medicalized process with an abundance of avoidable suffering.
Why palliative care is so much more effective toward the end of life than overmedicalized care.
In the words of Dr. Seamus O’Mahony, “Death in modern hospitals still has the whiff of an industrial accident, a failure of medical intervention” (O’Mahony, 2016). This reality reflects a healthcare system that is polarized and medicine that is dispensed in troubling ways. On the one hand, modern medicine is deployed in full and wonderful force when the treatment is deemed curative, while on the other, it fails to operate optimally when cure is unachievable.
Our inability to recognize and prepare patients for the end of life amounts to a mismatch between the care that is provided and the care that is wanted and needed. The dying patient often simply needs attention in the form of symptom management and practical support, not acts of diagnosis or intervention. Too often the dying patient continues along a medical assembly line, undergoing imaging that yields unactionable information and receiving pacemakers for hearts that aren’t allowed to stop even when the rest of the body has failed.
This focus on death avoidance is evidenced by the “modern death ritual” that has too many people spending their last days in emergency rooms and ICUs. These are places where modern medicine “identifies” the dying as patients, despite numerous studies that show the stark differences between how patients experience end of life in the hospital versus at home, particularly if palliative care is provided. Dying in the hospital is also an expensive proposition that ironically leads to neither a longer nor a better life.
Patients suffer in totality, not just in parts, and if patients do not compartmentalize between physical, emotional, psychological, and social sources of suffering (and they don’t) then we shouldn’t do so as caretakers, either. A new and better paradigm is clearly called for; a design for care that addresses the needs of patients and families facing serious illness.
Palliative care represents that new paradigm. The goal of palliative care is to improve quality of life for the patient and their loved ones. It provides an interdisciplinary, patient-centered approach with a focus on quality of life, symptom burden relief, emotional well-being, and caregiver need. By multiple measures, palliative care has demonstrated that it can achieve the oft-quoted “triple aim”: improving the experience of care and the health of populations, while lowering costs of healthcare (Berwick, Nolan, & Whittington, 2008). Hospice has long been the gold standard for palliative care, focused on providing comprehensive patient- and family-centered care and symptom relief, while enhancing quality of life for individuals who are approaching the end of life.
Love, Meaning, and Grace at the End of Life
I am a Hospice doctor, and all my patients die. I have learned that people don’t stop living because they are dying—in fact, dying is an important part of living. Those facing death reveal that there is often hope beyond cure as they transition from a focus on cure to notions of personal meaning. I have been at the bedside of thousands of patients who, in the face of death, often speak of love, meaning, and grace.
Dying is a period of transition that triggers a transformation of perspective and perception. It is a vantage point that draws people inward and toward the end, people often recall the best parts of living. For some, this occurs consciously through conversation; for others, it comes unconsciously through dreams, which we refer to as end-of-life experiences, which are not to be confused with moments of confusion or delirium.
Such experiences at life’s end have been described throughout history and across cultures yet often medically ignored. Our team at Hospice & Palliative Care Buffalo published multiple studies on this topic and documented more than 1,500 end-of-life experiences, many of which are videotaped.
For instance, our patient Jeanne described her end-of-life experiences as comforting, vivid, and felt (https://www.youtube.com/watch?v=HAbhtQCB6SM). She didn’t deny death, but reaffirmed the life she had led and lessened her fear of dying. Little is said between the dreamer and those in the dream, yet everything seems to be understood or felt.
'People don’t stop living because they are dying.’
In our studies, nearly 90% of patients had end-of-life experiences, the vast majority of which were comforting (Kerr et al., 2014). The closer patients were to death, the more the frequency of these experiences increased and the more likely they were to see the pre-deceased they had loved and lost. This next video is of Florence who was interviewed five days before death (https://www.youtube.com/watch?v=oz_YWPomLdc).
As you will see, end-of-life experiences typically do not include great pronouncements, insights, or epiphanies, but focus instead on real moments of having lived, events that put patients back together and make them whole. The dying revisit their memories of being held and cherished. They visualize a world where their best relationships defined their purpose and true accomplishments. They experience the culmination of a life, rather than its demise.
The following video is of our 13-year-old patient Jessica. Children often lack a language for death and may not know a person who has died. Many dream of pets that have died, but the message is the same: that they are loved and not alone. Jessica’s fear was imagining an existence without her mother; in her pre-death dreams she is soothed by the presence of another mother figure, her mother’s deceased friend (https://www.youtube.com/watch?v=qCMtnkoxgs0).
Our team has also looked at the effects of patient end-of-life experiences on those left behind, the bereaved. The data shows that what is good for the patient is good for their loved ones: family members feel that witnessing these experiences helps with their overall grief, their acceptance of loss and the processing of the pain of grief. It maintains a much-needed bond with their loved one. The following video is of a bereaved loved one, Jennifer (https://www.youtube.com/watch?v=InncrCm_O18).
Her story captures the richness of end-of-life experiences, defined by the connectivity between lives, both living and dead, which are often found within the memories of simple, often symbolic, everyday events.
As a doctor, I do not need to be able to explain these end-of life experiences to my patients or to interfere medically. I have learned to show reverence for the strength of the human spirit in its quest to heal what is harmed or broken. Long after the battle to overcome illness is lost, the dying continue to fight, but they are not fighting against, only for and toward meaning and love, even as they say goodbye. Elderly patients experience the return of the mother or father they lost in childhood. Women cradle babies long lost to their touch. The dying teach us that the best parts of having lived are never truly lost.
While there are no words to lessen or detach us from the realities of loss, those of us who work at the bedside of the dying can attest that patients experience love in their final moments, and that they leave us feeling more connected than alone.
Christopher Kerr, M.D, Ph.D. is the CEO & Chief Medical Officer at Hospice & Palliative Care Buffalo in Buffalo, NY. He is a Hospice physician, end-of-life researcher, and author of Death Is But a Dream—Finding Hope & Meaning at Life’s End.
References
Bernacki, R. E., & Block, S. D. (2014). Communication About Serious Illness Care Goals: A Review and Synthesis of Best Practices. JAMA Internal Medicine, 174(2), 1994–2003.
Berwick, D. M., Nolan, T. W., & Whittington, J. (2008). The Triple Aim: Care, Health, And Cost. Health Affairs, 27(3). https://doi.org/10.1377/hlthaff.27.3.759
Kerr, C. W. (2014). End -of-life Dreams and Visions: A Longitudinal Study of Hospice Patients’ Experiences. Journal of Palliative Medicine, 17:3, 1–8.
O‘Mahony, S. 2016. The Way We Die Now. Head of Zeus.
von Salis, J. R. (1964). Rainer Maria Rilke: The Years in Switzerland. University of California Press.
