Hope - Between Philosophy and Survival Strategy
The Oxford Dictionary defines hope as ‘’entertaining expectations of something desired’’, however finding and agreeing upon a definition of hope within medical literature seems elusive. Several scholars like Tanis and DiNapoli (2008) and Herrestad (2013) have argued that defining hope is a futile act as the concept is so multidimensional and ever-evolving in nature. Thus, hope is not always seen as a virtue in the medical field, since the emphasis is placed on keeping things ‘’honest and realistic’’ with the patient and their families. However, hope is not a false glimpse of a better future, but rather an inner power that gives patients the enduring fortitude and courage to deal with a long, and often painful journey that lies ahead of them. Hope gives them a will to live with meaning--no matter how long or short that time might be. At ACT we believe that it isn’t as important to reach a consensus in concretely defining hope, as important as it is to acknowledge its centrality in the wider sense of patients, and their loved ones, being treated well.
In any hard-to-treat illness, the complexity of hope is reinforced to care providers and clinicians through several experiences. When a patient initially discovers something unusual and visits their doctor, they hope that the diagnosis is not too severe. The medical team hopes the same. As the patient and their loved ones come to terms with the diagnosis, they hope that the treatments provided to them are effective. Keeping in mind that more than half the patients diagnosed with cancer are told that ‘’no cure or effective treatment exists for their illness’’, they may frantically hope that somewhere, if not within their own healthcare systems and countries, exists treatment that will give them a better life outcome. Even a small piece of information about an innovative treatment and its apparent efficacy on someone, albeit on the other side of the globe gives patients and their families a faint glimmer of hope that perhaps they too can benefit from a similar treatment. At the end of the journey--an unfortunate but prevalent reality for many--one hopes that they can live their last few days without much pain and cherish each moment with their family. The patient hopes that their children or family members whom they are leaving behind will be okay. The family in turn hopes that they have done the best they could and there will be no regrets in the future for having left any stones unturned. And for those with faith, solace comes from the hope of reuniting. And whatever the dearth of evidence, no clinician would ever try to dispel that hope. For clinicians the hope isn’t just limited to curing a disease, but realistically achieving the best possible results in the remaining time. The clinician hopes that they can do the best with the resources at their disposal; they hope that they can effectively help brace the patient’s family if they anticipate a negative outcome.
Hope is ever present in a patient’s journey and the Hope of curing the incurable is rational. As Blaise Pascal posed in his popular theory ‘Pascal’s wager’: The tiniest chance for an infinite prize is worth a bet. It is an ancient reflex. The zebra choked by the lion’s crushing jaw hopes for nothing but to escape, knows nothing but to struggle to defy the prognosis, as futile as this almost always is. Laying down and calmly accepting fate is not in our nature. Yet from this frequently futile fighting, comes survival and evolution and, eventually, systemic change.
Hope, then, is a shifting concept and changes continually along the trajectory of the disease. This is perhaps why medical staff, be that clinicians or nurses, are consistently vexed in trying to strike the balance between honesty and hope. However, working together to bring a genuine sense of hope and optimism to the treatment process is paramount. By the time our patients have reached out to us at ACT, they have exhausted their hopes within the standard care system and have often also depleted their resources, including their mental energies. For us, it is important to ensure that patients and their families remain hopeful and that the idea of hope is ‘reality based’, meaning that we can help patients live with hope and use it as a tool to prepare for an outcome--be that a cure, a remission, a stable cancer etc., and enjoy the highest possible quality of life in the days/months/years that remain.
In practical terms, we encourage treatment centers to be more open and accountable about their innovative treatment outcome. We encourage the careful evaluation of each case, cross-collaboration and robust communication within the team to decide the goal/direction of the treatment plan. Sometimes hope can take the less popular shape of realizing that certain treatments, although promising, may not work for someone, thus giving more structure and meaning to the patient’s remaining time.
In every hard-to-treat case comes a point where medical professionals are faced with the question: is hope a lie? When they give into pattern recognition and realize that the patient will not be able to make it, should they give patients and their families the crutch of hope? This question, although valid, defines hope on the premise that it is synonymous to survival. Azra Raza, through her work has established multiple times that hope and hype are not the same things and hence there is always room for hope. However, as Dr. Jack Kreindler mentioned in his conversation with Parker Moss, ‘’Hope is not just a dream, but it’s a part of the therapy’’. Moss, who lost his daughter Vanessa to neuroblastoma after going through years of intensive therapies and early stage clinical trials. Parker reiterated that ‘’hope is simply the courage to get through today, despite knowing that tomorrow is going to be difficult’’. We agree with Parker who believes that ‘’Hope should always be a part of the strategy’’.
An important element of supporting hope in life-limiting illness is to not dismiss or overlook any effort that the patient’s family is trying to make to increase the odds of their loved ones’ survival in the face of illness and adversity. While innovative treatments can seem like uncharted and dangerous territory to several oncologists, we encourage that they work together with the patient and their families and use their expertise, network and experience to help the patient find solutions outside standard care, or help set realistic and achievable goals based on the individual cancer case and the available data on the efficacy of the innovative treatment.
The cost that hopelessness can have on patients but also their families who sometimes get dragged into the feeling of utter despair, and are forced to live with it for the rest of their lives is dangerous and must be taken care of from the start. Both patients and their families should be able to feel embedded in a network of hopeful medical care. It is important to not think of hope as the antithesis to rationality or honesty. Hope, after all, is not the denial of death, but simply the strength and power to keep up the fight--be that for another day, month or year.
