When Illness Changes Our Future

I recently discovered an email from Dr. Zail Berry, a physician with expertise in internal medicine, palliative care and Hospice. Several years ago, we had asked her to review SpeakSooner: A Patient’s Guide to Difficult Conversations, a tool I developed to help patients identify questions and concerns. Dr. Berry’s comments were especially important because of how often our materials and programs to improve doctor-patient communication have only been associated with cancer care, not other serious illnesses.


“A lot if people think of medical illness as something that visits temporarily and then departs permanently,” Dr. Berry noted. “For others”, she continued, “medical illness is an ever-present ‘companion’ that changes some aspects of life, but which is incorporated into one’s existence, with the essence of life not changed much.”


“But in other cases, the arrival of a medical diagnosis in one’s life brings with it profound changes which are immediate, continuing, and evolving; life is profoundly different from then on. This is true for most people who develop a disease that is ‘life-threatening,’ that is, a disease whose presence is likely to lead to a death earlier than would have occurred without it.”


She went on to say,” Most people think of cancer as a disease easily recognized as life- threatening, whether the course of the disease is months or many years. But many people do not think of chronic illnesses like diabetes, dementia, heart, kidney, or lung disease as being life-threatening, despite the fact that these are just as likely to end in death as many cancer diagnoses.”


We’ve often been asked if the Guide could be useful with chronic illnesses. Dr. Berry answered that question by noting, “Some of us will live with that disease for many years, while others will have only a short time to do the work of adapting and coping and preparing. This Guide can be a valuable tool in meeting one’s needs with any illness that changes one’s future.”


Dr. Berry concluded, “For every patient, the best medical care is that which is tailored to one’s personal values, understanding and goals. But for most people, the task of identifying what is most important to me, what do I need to understand to make this decision and how do I choose among the options, is not easy. This Guide will help each person organize their own thoughts and feelings so as to better answer those and other questions that arise, and to thereby participate more fully as an empowered patient in their medical care and treatment.”


I’d say that she eloquently answered the question as to whether the SpeakSooner Guide can be helpful to all patients facing serious illness, not only cancer.  Her years of experience tells us that it can.