Author Dr. Christopher Kerr: Dying Needs to be Recognized as More Than Medical Failure or the Physical Suffering we Either Observe or Experience
Dying is a closing of a life and needs to be humanized. This requires acknowledging not only what is observable, but what is felt and experienced by the patient. My hope is that this book illuminates the patients experience at the end of life and thereby illustrates an alternative sensibility and approach to care, one in which the patient has a say.
As part of my interview series on the five things you need to know to become a great author, I had the pleasure of interviewing Christopher Kerr MD, PhD, author of Death Is But a Dream: Finding Hope and Meaning at Life’s End. Dr. Kerr is a Hospice doctor who has published multiple studies that draw on interviews with over 1,400 patients who reveal that pre-death dreams and visions are extraordinary occurrences that humanize the dying process. His work has been featured in The New York Times, Atlantic Monthly, and the BBC, among others. His talk on TEDx has garnered over two million views on YouTube.
Thank you so much for joining us! Can you share a story about what brought you to this particular career path?
I have been a Hospice physician for 20 years. Early on, I was struck by aspects of the dying process I was unaware of- the nonphysical, spiritual aspects of dying, specifically dreams and visions. Because such processes were largely ignored within medicine, I began to study the experience of dying using a scientific, evidence-based approach. My original objective was to inform and educate the medical community by providing solid data. What I wasn’t expecting was the response from the non-medical community which has been international and overwhelming. This was the first time pre-death dreams/visions had been validated and taught within a clinical or caregiving framework. This receptivity became the basis of the book.
Can you share the most interesting story that occurred to you in the course of your career?
I was a Cardiology Fellow and needed extra income to support my family. One night I couldn’t sleep and saw a want ad for a Hospice Doctor on weekends. Ironically, I had successfully petitioned to get out of my Hospice rotation as a resident so really didn’t know the actual role of a Hospice Doctor. At that time, I saw death as medical failure and was much more comfortable within the acute and interventional side of medicine. Seeing that newspaper ad changed my life. Once I began working weekends at Hospice I was immediately drawn to the overwhelming need of the patients and their loved ones. I ended up leaving my Cardiology training to work at Hospice and I have never looked back.
One of my earliest patients was a former university President named Peter who had a diagnosis of pancreatic cancer. He was no longer seeking treatment and consequently he was receiving little medical oversight of his other chronic conditions such as diabetes and high blood pressure. As a result, Peter was weakened to the point of debility and unable to enjoy even simple activities. After adjustments to his medications, Peter was able to regain momentum and recapture a sense of dignity and purpose. The lesson was clear- patients are often abandoned when no longer deemed “curable” and yet the need for medical care does not stop because a patient has a terminal diagnosis. Cases such as Peter taught me how do value a different, more realistic clinical objective which was to preserve and enhance quality of life even in the face of death.
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
Although not a mistake, one of the more humorous stories was how I found my co-author Carine Mardorossian. I had been paired, or offered to be paired with, various co-writers who lived far from my home in Buffalo NY. This was problematic. I felt writing the book required the writer to interact with the patients and families I cared for. I was becoming frustrated and wrote my agent, Bonnie Solow, that I no longer want to write the book.
I live on a working horse farm and one day I am cleaning a stall and talking to the woman in the next stall who was also shoveling manure. We were talking about the book and she was telling me not to give up and that it needed to be written. This person, Carine, happens to be an English Professor and both of us thought “what the hell” lets try. I remember thinking that there was no way I found the right partner while shoveling manure in a small town in Western NY. Turns out I did and I have never looked at shoveling manure the same way!
What are some of the most interesting or exciting projects you are working on now?
We are working on developing a second book that looks at caregiving, as well as grief and loss, from the perspective of a physician. For example, how does the inclusion or exclusion of the family in the care of the patient effect bereavement (honest awareness of what to expect, etc.) or how compassionate care influences grief particularly in cases of medical futility, such as when a baby is stillborn. We are working with caregivers and bereavement groups to capture their insights on how the medical care received either helped or hindered their grief processing. The caregiving component of the book also attempts to relay the remarkable stories of human strength, selfless devotion and empathy. It’s remarkable to me that caregiving is one of life’s greatest challenges yet many caregivers state that this role is the single most meaningful act of their lives. This needs to be told.
What is the one habit you believe contributed the most to you becoming a great writer? (i.e. perseverance, discipline, play, craft study) Can you share a story or example?
I am a doctor and not a writer by trade. The most helpful thing for me was staying with what I know which is patient care. When I could express what I saw and felt clinically, I was comfortable and productive. So, the next most important approach for me while writing was to gather input. I relied on about 10 readers, from diversity of backgrounds, to regularly provide feedback and help guide the process. Finally, I learned that if I was enjoying the process then I was on track.
Can you share the most interesting story that you shared in your book?
The most interesting stories are all patient based. I think the most moving are the stories about children facing death. Children lack the language or reference point to talk of mortality. Dying adults’ dream of deceased loved ones who return to reassure and comfort. Although children may not have known an adult who died, most have known and loved animals that have passed. In the book, several dying children are visited in their dreams by deceased pets that they have loved and lost. In the end the message was the same whether those who returned were animals or humans and all the children said the same thing- that they were going to be ok, that they were not alone and that they were loved.
What is the main empowering lesson you want your readers to take away after finishing your book?
Dying needs to be recognized as more than medical failure or the physical suffering we either observe or experience. As a hospice physician, I have been at the bedside of thousands of patients who, in the face of death, often speak of love, meaning and grace. Their concern goes beyond the physical dimensions of dying to embrace nonphysical experiences which include remarkable and transforming pre-death dreams and visions.
The data are convincing that there exists a better, less fearful aspect to end of life which includes these inner, subjective experiences. In multiple studies, we have demonstrated that the majority of dying patients experience pre-death dreams which are described as “more real than real” and increase in frequency as death nears. These dreams and visions typically bring comfort to the patient and their loved ones and often include the transition from distress to acceptance.
Dying is a closing of a life and needs to be humanized. This requires acknowledging not only what is observable, but what is felt and experienced by the patient. My hope is that this book illuminates the patients experience at the end of life and thereby illustrates an alternative sensibility and approach to care, one in which the patient has a say.
What was the biggest challenge you faced in your journey to becoming a bestselling author? How did you overcome it? Can you share a story about that that other aspiring writers can learn from?
My biggest challenge was getting out of my own way. As a doctor I had discomfort with topics not generally legitimized within medicine, such as pre-death dreams and visions. It’s hard to be a doctor and talk about things that are unseen, subjective and can’t be measured or quantified. I overcame this by worrying less about the answers (i.e. questions of origin or meaning such as the afterlife, etc.) and focusing on simply translating what the patients were experiencing. In other words, letting go of having the answers and simply respect the patient’s experience for being just that- theirs.
Which literature do you draw inspiration from? Why?
I am a big fan of Dr. Oliver Sacks. He did many things well but three come to mind. First, he loved being a doctor in the fullest sense which meant he brought intellectual curiosity to the bedside. Two, to be a good doctor to his patients meant being a humanist. This is what fueled his observations and his writing. He was fascinated by all dimensions of the human experience and he clearly loved being a doctor to his patients. Third, he went beyond the science of medicine and pursed its art with a passion.
How do you think your writing makes an impact in the world?
My hope is that the patients in the book (as well as the research) show another aspect of dying- that dying is a transition that changes perceptions and perspectives and include meaningful dreams and visions before death. These observations aren’t new and have been described by the humanities throughout time. This book does so by providing evidence based research while allowing patients to share their experiences in their own words. I hope that this book influences our perspectives on dying to include processes that affirm rather than deny life.
What advice would you give to someone considering becoming an author like you?
The best advice is to write about what you know and are passionate about. Obviously, the topic will be more accessible to you but also, it’s in this space that you will find the language that needs to be shared.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
1. The importance of an agent who you can truly relate to. Publishing a book is long process and depends on an agent relationship that is healthy and constructive. I consider my agent my confidant and my friend.
2. You’ll need a following. I am largely removed from anything to do with marketing and it’s been a steep learning curve. It doesn’t help to be illiterate with respect to the digital world.
3. The crucial role of early readers. I relied on 10 readers and their feedback was incredibly helpful for me while writing. I learned what material was most meaningful.
4. An unexpected discovery will spark a book idea. Caring for the dying was something I was ill prepared for after medical training. As a part time job, I began working at Hospice and was struck by the non-physical aspects of the dying process, particularly the remarkable and transforming experience of pre-death dreams and visions. For many, validating such end of life experiences has provided much needed comfort, context and reassurance. On this basis, I decided to write the book.
5. An audience that resonates with your work can be surprising. I’ve published several studies in medical journals but received no response from the medical community. However, the non-medical community found out about our work and the response has been overwhelming and our studies have been published throughout various forms of media around the world. Additionally, I gave a TEDx talk that covered dreams and visions of the dying and have been astonished that over 2 million people have viewed it on YouTube.
You are a person of great influence. If you could start a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. :-)
I think it would be to reclaim the dying process as one in which the patient and caregiver have a say. That the experience of illness and dying becomes more humanized rather than largely medicalized. Finally, that there is always a role for passionate patient advocacy.
Where can our readers find you online?
Please visit my website, Twitter and Facebook:
https://www.drchristopherkerr.com/
https://twitter.com/hospicebuffalo
https://www.facebook.com/HospiceBuffalo
Thank you so much for all of these great insights!
