Groucho Marx said, “Marriage is the chief cause of divorce.” When we mentioned this to a friend of ours, he retorted, “Yes—and life is the chief cause of death!”
In writing this reflection, we revisited the existential question: What is life? More specifically, what do we do with life at the end of life? How do we define the intangible
or compare one life to another without knowing the passions that move each person to make certain decisions?
The term patient-centered care reminds us to be sensitive to each person’s uniqueness and respond accordingly. Cultural influences may shape a person’s life; but what accounts for variations in individuals’ perceptions of the meaning of life and living? What distinguishes the will to live (to go on) from the desire to live well (to recalibrate life)? How can we best support patients as they navigate these questions, given that we all define life and living differently?
The choices patients make
Consider two patients with a diagnosis of incurable cancer who’ve each been told they have a year to live. Patient A chooses to surround himself with family and friends, experiencing all that life has to offer. He decides to spend his savings, travel the world, host dinners, see shows, and so on (to the extent that his illness allows). Now and then, he visits the emergency department to treat a cancer-related crisis—but with a smile on his face and the optimism that once he regains his strength, he will continue his adventure to live well until the end. He takes no steps to preserve tangible items for the future, instead making the best of the “here and now.”
Patient B chooses a different path. From the day he learns of his “sentence,” he decides to use his remaining time to provide for his family, to make sure they’ll be secure after he’s gone. He goes back to work. He puts all of his energies into finishing his dream home (again, to the extent his illness permits) and imagines his children living there. He plans his remaining year to ensure he will continue to have a physical presence in his family even after death.
Despite their similar prognoses, these two patients are living in radically different ways. Determined to live well, Patient A is “unpacking” his life by enjoying his remaining time. Patient B, on the other hand, is demonstrating the will to live while preparing for the ultimate departure.
How can nurses determine what life means for patients? Nurses in hospice and palliative care settings deal with such issues regularly, but for nurses in other settings, addressing life-and-death issues can throw off the routine workflow. Imagine having deep existential discussions with patients and families between the 9 AM and 12 noon med passes! Those conversations could cause considerable moral distress as we strive to heal our patients. Here we offer a brief reflection on how nurses can assess their patients’ will to live and their desire to live well.
Nurturing the will to live and the desire to live well
After physician-writer Oliver Sacks learned he had metastatic cancer secondary to ocular melanoma, he wrote in The New York Times, “I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts.” His published end-of-life reflections have the calm eloquence of a lover writing to his beloved: life.
We imagine that nurses, too, can see life from a perspective different from that of other healthcare providers. Meaningful nursing takes existential issues into account. Failing to ponder the meaning of the will to live and living well would be unthinkable, for they both resonate with the essence of nursing.
The will to live is the mostly unconscious drive to be alive, beyond simple survival. Its closest companion is optimism. Self-preservation is at the heart of every individual’s will to live, but we need a moment of introspection to determine why an individual is living. When the end of a person’s life is in sight, what does the will to live mean? Does it mean simply extending self-preservation as long as possible—or experiencing the most life has to offer in the face of a time limit?
From this perspective, we might be able to see terminally ill patients as willful participants in their healing and not merely passive recipients of care. Perhaps one of the easiest ways to affirm life is to give the patient choices. Advance directives, of course, come to mind—but even asking the patient what beverage he or she would like to take medications with not only preserves dignity and respect; it also validates selfdetermination and free will (albeit in a small way). Knowing the social system surrounding the patient also might provide clues. When you’re with the family, truly look, listen, and feel for these clues.
Living well in the face of terminal illness requires a stubborn determination, an “experience-life-while-you-can” attitude, an effort to demonstrate resilience. It also echoes the bargaining phase of the Kübler-Ross model of the death and dying process. A promise to live well is an exercise in self-redemption and humility.
No matter what motivates your patient, your role isn’t to judge but simply to be present and validate the patient’s experience. We can support resiliency by assisting the patient to make connections with families and friends, helping him or her see the overall situation in the proper perspective, and setting realistic goals (in terms, for instance, of what can be achieved during the shift). Here, the role of palliative care can’t be overemphasized. One simply can’t live well in pain or suffering. Studies show that patients who received chemotherapy plus palliative care lived an average of 3.5 months longer than those who received chemotherapy alone. Those extra 3.5 months can be dedicated to living well.
The will to live, and living well: One is important, the other is impressive. As nurses, we must remember not to prove a patient wrong or to contradict, but simply to reflect and consider the patient’s values.
Fidelindo Lim is on the clinical faculty at the New York University College of Nursing in New York City and a per diem nurse educator at New York-Presbyterian Weill Cornell Hospital in New York. Justin O’Leary is a staff nurse in the urgent care center at Memorial Sloan Kettering Cancer Hospital in New York City.
Hui D, Kim YJ, Park JC, et al. Integration of oncology and palliative care: a systematic review. Oncologist. 2015;20(1):77-83.
Sacks O. My own life: Oliver Sacks on learning he has terminal cancer. The New York Times. February 19, 2015.
Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-42.