By Juan Esteban Correa-Morales, Palliative Care Resident, National Institute of Cancer, La Sabana University Colombia
and Natalia Salamanca-Balen MD, Laboratory for Psycho-oncology Research, University of Notre Dame
The one wish every healthcare worker has for patients is that they cope with the reality of their prognosis and adhere to the best possible treatment. The legitimacy of this wish relies on the certainty that by these means, the care will meet the patient’s needs, wishes and goals. However, patients have taught us not to assume and to consider their wishes about what is best for them. Moreover, a great focus of attention in modern medicine has been related to the coping mechanisms and processes of life-changing diseases.
Has it become more difficult for people to face their own death? Is it because of sociocultural changes or the technological revolution? Has it always been this challenging? What are the elements that determine whether one can face a life of uncertainty regardless of the quantity of that life?
Coping in the Face of Uncertainty
Investigations from around the world have proposed two personal major coping determinants: hope and faith. Usually, hope is strongly grounded in spirituality, but is not necessarily dependent on it. Given how strongly related they are and because it exceeds the scope of this blog, we won’t try to narrow the differences between the two. Although common human behavior has a tendency to cling to personal beliefs, during life-changing situations that are profoundly rooted in personal identity, they´re given short shrift in healthcare settings.
It is only in opposition to medical instructions that hope/faith consideration appears as either a hindering or helpful factor. For instance, the hope/faith in a potential miracle is stressful for clinicians. Some may feel the urgency to respectfully discourage the person from this line of thought to help cope with reality and adhere to the best possible treatment. Is it so? Is dissuading hope/faith for patients a necessary and caring measure that improves end-of-life quality? Does fostering hope/faith have a negative effect? Is there a middle ground between medicine/science and hope/faith?
Optimism vs. Hope
Defining the difference between optimism and hope is a crucial distinction. There is nothing wrong with optimism per se. However cultural changes since the 1950s have turned optimism into blind and compulsory positivism in which reality is suppressed. The positive movement has an axiom by which reality is modified by the law of attraction, which is set up by the power of focused, positive and wishful thinking. For instance, isn’t the militaristic language employed to face disease at the end of life an example of willful thinking? Unrealistic expectations are hazardous and lead to uninformed decision-making and overly aggressive treatment. This general perception by health workers may be the reason to insist that patients forego hope.
Call it What You Wish
No matter the terminology you use to describe the patient’s or family’s attitude, the crux is to discern if reality is being denied (positivism) or has been acknowledged (hope). Positivism can be understood as a constant lie that disfigures reality to achieve a unique outcome. Hope acknowledges reality, admits several outcomes and awaits the best result either by chance or divine intervention. In this sense is fostering hope justified?
Three landmark investigations point out that, first, patients with advanced cancer and higher levels of hope amplify their life expectancy and probability of cure. Second, the lack of purpose is a common trait in patients with a wish to die and hasten death. The perception of life as a meaningless experience is triggered by a unique factor: demoralization. Finally, hope interventions made by the healthcare team can increase hope levels.
A Useful Tool
In summary, far from being misleading, hope is a treasure kept in the healthcare team’s pockets that improves the health condition of patients by preventing the moral burden of perceiving suffering as a useless dead end. No wonder patients ask us for this key at the same time they want to hear about prognosis. Furthermore, at the end of life, randomized trials have found that over symptom control, dying at home, not being a burden or being mentally aware, the most frequent and important wish of patients is to pray and be at peace with God. If we truly want to guide our clinical practice by patient-centered outcomes, we have to ask ourselves if we are open to embracing the spiritual realm. It is crucial that physicians are spiritually sensitive since patients and their family members judge the dignity of their death according to how satisfied they are with the relationship they have with their physician.
This is a wonderful article. Thank you. I’ve worked in palliative/hospice care in the past and still am gravitated towards this work. Many times I have found myself unable to describe what I’ve witnessed, but you have articulated many points here incredibly well. Thank you!