By Justin O’Leary, MS, RN and Fidelindo Lim, DNP, CCRN
This essay is published in the July 2016 Edition of the American Nurse Today – the official journal of the American Nurses Association - https://americannursetoday.com/will-live-living-well/
Some years ago, I shared with a friend one of Joey Adams’ acerbic quips, “the number one cause of divorce is marriage”. To this, my friend retorted: the number one cause of death is life! In writing this reflection, we revisit the existential question: What is life? More specifically, what to do with life, at the end-of-life? How does one define the intangible or compare one life to another without knowing the passions that move the patient to decide a certain way? In nursing, patient-centered care is a term thrown around to remind nurses to be sensitive to the uniqueness of the individual and respond accordingly. While a person’s life may have cultural influences, what accounts for the variations in patient’s perception of the meaning of "life" and "living?" Or between the will to live - to go on; and living well: to recalibrate life. How can we, as nurses, support patients as they navigate these questions, when every individual defines life and living differently?
Nurses have the privilege to meet patients with terminal illnesses who have chosen differing paths. The will to live and living well are overlapping concepts. The former is the impetus for the latter. How they are lived out can have very different trajectories. In our interactions with these patients, we struggle to find the center to which we can drop anchor and guide patients as they sail the rough or the eerily calm waters of end-of-life care.
The Choices Patients Make
Let’s consider two patients with a diagnosis of incurable cancer who have been told they each have a year to live. Patient A chooses to live his life surrounded with family and friends, experiencing all that life has to offer him. He decides to spend his savings, travel the world, host dinners, see a show, and so on. Now and then, he is back in the emergency department from the toll of his illness, but with a smile on his face and optimism that once he regains his strength, he will continue his adventure to live well – until the end. He leaves no indications of preserving tangible items for a future but instead makes the best of the "here and now." Patient B chooses a different path. From the day he is informed of his “sentence”, he decides to use the time he has left in providing for his family, to ensure they would be secure after he is gone. He goes back to work. He puts all his energies finishing his dream home and imagines his children living there. He planned his remaining year to ensure he will continue to have a physical presence in his family, after death. Of these two patients, the nuance lies between one who is preparing for the ultimate departure and one who is unpacking, as if arriving, returning home from an exhausting journey.
How are nurses to determine what life meant for them? No doubt nurses in hospice and palliative care deal with these questions regularly and would know how to address them. For nurses outside these settings, this could throw off the routine workflow (imagine having these conversations with patients and families between the 9 and 12 noon med passes?). Or stir considerable moral distress balancing the demands of seemingly contradictory aims of medicating and healing the patient. Here we offer a brief reflection on how nurses may affirm our patients’ will to live and their desire to live well.
Nursing The Will to Live and Living Well
When the famous physician-writer Oliver Sacks was informed of his metastatic cancer secondary to ocular melanoma, he wrote in the New York Times (six months before his death), “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, nurses too, can see life from an altitude or from an angle unknown to other health care providers. It would be unthinkable to nurse meaningfully well without weighing and considering the will to live and the living well questions, 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 a moment of introspection is needed to determine what and why an individual is living. When the end of a patient’s life is in sight, what is a will to live then? Is it to continue self-preservation for as long as possible, or is it to experience the most life has to offer in the face of a time limit? With this in mind, we might be able to see terminally ill patients as willful participants of their healing, and not merely passive recipients of care. Perhaps one of the easiest ways to affirm life is to give patients choices (advance directives come to mind). For instance, simply asking the patient what beverage they would like to take their medications with not only preserves dignity and respect, it validates self-determination and free-will, albeit in small ways. Knowing the social system surrounding the patient might also provide some clues. It is essential to truly look, listen, and feel when the nurse is with the patient and family.
Living well in the face of terminal illness has the stubborn determination of experience-life while-you-can attitude, a sort of resilience building. However, 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 the patient, our role as nurses is not 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 them see their overall situation on proper perspective, and set realistic goals (e.g., what can be achieved during the shift). Here, the role of palliative take cannot be over-emphasized. One simply cannot live well in pain or suffering. When compared with patients treated with standard chemotherapy alone, patients receiving chemotherapy plus palliative care lived an average of 3.5 months longer – months that can be dedicated to living well.
The will to live and living well – one is important, the other is impressive. Wisdom lies in caring to know the difference.
My Own Life. Oliver Sacks on Learning He Has Terminal Cancer By OLIVER SACKS FEB. 19, 2015 New York Times
Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010 Aug 19; 363(8):733-42.