The clinical benefits of hope
“Many of us confuse hope with optimism, a prevailing attitude that things ‘turn out for the best’. But hope differs from optimism. Hope does not arise from being told to ‘think positively’ or from hearing an overly rosy forecast. Hope, unlike optimism, is rooted in unalloyed reality. Although there is no uniform definition of hope, I found one that seemed to capture what my patients had taught me. Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.” – Dr Jerome Groopman, author of best-selling book, The Anatomy of Hope.
“All people with serious medical problems have one thing in common – they are searching for hope.” This is the experience of Drs Jerome Groopman and Pamela Hartzband, whose interest in the clinical benefits of hope began in the early days of the AIDS epidemic. (The hope of a better future sustained them during a time of despair when predominantly young patients in their care were inevitably dying within six months of diagnosis). Both are on the faculty of Harvard Medical School and attending physicians at Beth Israel Deaconess Medical Center. He is a hematologist/oncologist and she an endocrinologist.
Dr Groopman received his BA from Columbia College summa cum laude and his MD from Columbia College of Physicians and Surgeons in New York. Dr Hartzband is a magna cum laude graduate of Radcliffe College, Harvard University, and received her MD from Harvard Medical School. Together they have co-authored numerous articles in the New England Journal of Medicine on the changing culture of clinical care. They were in South Africa recently at the invitation of Reach for a Dream to meet with local stakeholders about the significance of hope in patients’ lives – an important and often neglected aspect of patient care and one on which they have done groundbreaking work. This was their first time in South Africa.
According to Drs Groopman and Hartzband, hope is not a given, but rather an active endeavour. It needs to be sought, and obstacles and barriers need to be viewed with clear eyes. Once found, they believe true hope brings a sense of control and illuminates the path to a better future.
There exist multiple treatment options for serious conditions and much disagreement over which are the best; this can make finding the path of true hope challenging. They also note that doctors aren’t traditionally trained on how to deal with patients on an emotional/personal level, especially with regard to potentially terminal illnesses, and that this should be included in their training to better enable them to instill hope in their patients. “Guidelines are constantly changing and there is ongoing debate over numerous medical issues.” How physicians make decisions and choose paths in the face of so much debate and disagreement is incredibly difficult, point out Drs Groopman and Hartzband.
Formulas for healthcare professional decisions
Often the Bernoulli formula is used. It has been imported into medicine from economics and states that the intervention with the highest expected utility is the ‘best’ choice and that the expected utility equals the probability of outcome multiplied by the utility of the outcome. But Dr Groopman questions how you can put a number on the impact on a patient’s life. “Three elements – the linear scale, time trade-off and standard gamble – are usually used, but all are seriously flawed and cannot forecast life in the future. Medical conditions are dynamic and change over time, and as people adapt to their condition, so its impact on their life changes. Yet these three methods guide the UK’s NHS’s priorities and also underlie cost-effectiveness calculations in the USA.”
Furthermore, Drs Groopman and Hartzband have found that patients’ assessment of their condition can be very different from that of a healthy person. “So the structure of medical decision-making is deeply flawed and measuring ‘utility’ is like measuring the ether in 19th century physics, when it doesn’t exist.” They agree with Sir William Osler’s observation that if you know how to listen to your patient, he or she will tell you the answer.
The patient perspective
While all patients are individuals, there are common threads in their attitudes towards their illnesses – some patients are maximalists when it comes to medication/treatment, others are minimalists. Some look to technology, while others have a bias towards natural therapies. There are the believers, who are certain that whatever treatment they choose will have a good outcome, and the doubters who fear the treatment will be worse than the actual disease. These mindsets influence decisions regarding serious conditions, such as surgery and cancer, as well as chronic conditions, such as hypertension and cholesterol. They apply equally to clinicians, and can impact the advice they give their patients. It is essential that both parties understand and respect each other’s mindsets.
Drs Groopman and Hartzband caution that doctors should take care when assessing relative risk reduction versus absolute risk reduction. “Choosing that correct path involves not only knowing numbers, but how to value them.” Medicine has many grey zones with no right answer for everyone. However the ‘paradox of uncertainty’ is that it can be a reason for hope. Biological variability is one example of this, as diversity in human physiology means diversity in response to both disease and its treatment. “Stephen Hawking is a good example of this. He was never expected to live beyond childhood, but he never relinquished the hope of a meaningful life, in spite of his condition.”
Drs Groopman and Hartzband also believe in a ‘biology of hope’, given that people taking placebo often get better relative to people on no treatment. Studies have suggested that placebo treatment changes brain and nervous system activity when true hope is found
So how do medical professionals give hope to their patients?
Drs Groopman and Hartzband believe that one way is though greater awareness of scientific progress. “We are living in extraordinary times with advances in so many areas.” These include antiretroviral treatments for HIV and hepatitis, cytokine therapy for diseases like rheumatoid arthritis and Crohn’s, immunotherapy for many disorders, gene therapy for the likes of haemophilia and thalassaemia and targeted therapies, e.g. for cystic fibrosis. There are also practical strategies, such as explaining the diagnosis and prognosis to the patient, evaluating best and worst case scenarios and highlighting the paradox of uncertainty. Making sure the path chosen fits with the patient’s values and preferences is imperative, according to Drs Groopman and Hartzband, who believe the true hope consequent on this can ensure a good quality of life until a new treatment, for example, becomes available. “In a worst case scenario, when all therapies are ineffective, ask the patient what else is hoped for. For some patients it’s reconciling relationships, for others it’s finishing a project. This is what we can do as doctors to sustain a patient’s quality of life.” Reach for a Dream is founded on this very principle. It provides hope to children fighting life-threatening illnesses, by making their dreams come true, impacting the lives of both the children and their families in a significant and profound way.
Drs Groopman and Hartzband continue to explore the very real evidence that hope has a biological impact on patients and are committed to making patients and healthcare professionals alike more aware of the difference it can make both to outcomes and quality of life. “Hope is something everyone needs and without it we cannot evolve. Hope can make some people live longer, but hope can make everyone live better.”
About Reach for a Dream
Reach for a Dream, named top NGO in the country in 2016, fulfils the dreams of children between the ages of 3 and 18 who have been diagnosed with a life-threatening illness. Inspired by the US Make-A-Wish Foundation, Reach for a Dream has been bringing hope, joy and healing to South African children with life-threatening illnesses such as cancer and leukemia, cystic fibrosis, muscular dystrophy, renal failure and various blood disorders for the past 30 years. Reach for A Dream fulfils six dreams per day, 365 days per year. To date, Reach For a Dream has fulfilled 16 805 dreams and had a positive impact on 300 000 children with life-threatening diseases through dream fulfilment and various other initiatives.
For more information, contact: +27 11 880 1743 | +27 83 385 9633 or email firstname.lastname@example.org