“The Cost of Hope” by Amanda Bennett is billed as “the story of a marriage, a family and the quest for life”. This excellent book describes Amanda Bennett’s journey through life together with her husband who died of cancer after a long illness. While Amanda Bennett, a well-known journalist, in part focused the book on many of the problems of high costs and poor communication that confronts families when someone they love is sick, I read it more as a love story than a commentary on health policy. It is a moving tale of the support she gave her husband and he gave her, when he was faced with a rare cancer with no curative therapy. It is above all a book about life and a book about the true love that drives people to acts of heroism when faced with disaster.
When I read this book, I think of all the people I come across professionally who go to work, raise families, and help those closest to them with challenges that the rest of us can only pray to avoid. The mother of the two year old child who has been sick since age 6 months with a rare illness who lives in a small town in the south and whose husband earns a wage that is not much more than the poverty level comes to mind as one example. She does not work outside of the home in order to care for her child and has become an expert on this unusual disease, knowing much more than most physicians. She travels long distances for his doctor’s appointments and communicates with experts around the country via email. She is also an expert on state, local and federal regulations having to do with care of children, disability issues and other resources. This woman is a true hero. Or the business executive I know who has put her career on hold while she cares for her sick, elderly mother who suffers from constant pain. She is a fierce advocate for her mother, using all of her business skills and her negotiation skills to make sure that the health professionals coordinate and communicate with each other and that her mother never gets caught in the bureaucratic nightmare that Medicare can be.
When we talk about health care costs, health care policy and health care delivery, we are really talking about people often fighting for their lives, supported by the heroes who love them. We talk about people showing courage in the face of illness and adversity. We are talking about individuals and their families finding their way through a complex system of medical opinions which are often contradictory, insurance policies which are often incomprehensible and laws and regulations designed for population and budgetary reasons and not the care of the individual. We see people taking their and their loved one’s illnesses as a chance to elevate themselves beyond the illness and into a type of nobility of sacrifice and focus.
Amanda Bennett captures this and by telling her and her family’s story, moves the discussion of health care, which is often mired in partisan political attacks from all sides of the political spectrum into the deeply personal story it is for all of us.
At Accolade, we are truly fortunate to have found another way of helping people and also addressing some of the cost and quality problems that are part of health care. We are privileged to be helpers and observers of the heroism of people and their families and to find ways to cheerlead those heroes while also assisting them in their quest for quality care with a strong dose of humanity. There truly is no better way to make a living and I am thankful every day for what we at Accolade all do.