“Always read something that will make you look good if you die in the middle of it.” — P. J. O’Rourke
Sadly, like most Americans, O’Rourke’s humorous quote concerning death is representative of the lack of attention most folks pay this unavoidable destination we all eventually must face. Recognizing the tremendous impact death has on individuals and their loved ones, it is startling how little time and effort most people devote to planning for the inescapable event. I understand mortality is usually not a favorite topic of contemplation for most people, but I find our culture’s general ignorance about topics related to death and dying concerning as a healthcare professional.
If you have spent any significant amount of time as a healthcare professional within a hospital setting, you are no a stranger to death and dying. As an anesthesiologist, particularly early in my career when I was a member of the ‘code’ team, being present for the passing of a patient was a routine occurrence.
I can testify that dying in a hospital is often a brutal event and can be disturbing to watch for the uninitiated. Hospitals are not designed for the dying; they are focused on preserving life, utilizing the best evidenced-based technology and methods available. This hospital focus must not change in that regard.
For myself, recognizing the intense focus of hospital personnel to preserve life when my own death is imminent and inevitable, I would prefer a calm, quiet home setting with only those I love in attendance. To be blunt, when I face this unavoidable conclusion to my existence, I would appreciate some dignity in the familiar surroundings and comforts of my home, as opposed to the often chaotic, loud, dramatic but often hopeless machinations of well-intended strangers working on my body when it ceases its usefulness.
My greatest fear is the artificial extension of my vital signs in a body that is no longer capable of containing my spirit. I realize these are my personal feelings on the subject, and the reader’s feelings may be very different. I am sharing my thoughts not because I am recommending you think as I do, but, rather, I am advocating for the reader to do some personal thinking on the topic before someone else has to do it for you. Recognize that the “someone else” might have very different goals in mind from what you might desire at the end of life.
I find it revealing that a study in the Journal of the American Medical Association (JAMA)1 found that, although physicians spend more time in hospitals than just about everyone, they are more likely to choose not to die in a hospital compared with the average American. Even more interesting is that most Americans would prefer to die at home rather than in a hospital, but most of us (doctors included) end up dying in a hospital anyway.
Another factor to consider is the tremendous amount of money spent on a patients during the last months of their lives. One estimate suggests $1 out of every $4 spent by Medicare, more than $125 billion, is invested at the end of patients’ lives, often with little to no improvement in quality or length of life.2 Much of this money pays for aggressive hospital interventions, irrespective of the cost for patients and their families who failed to prepare for this event. The costs to family finances can be staggering, and the care received, when reviewed in retrospect, is often not what anyone involved would have wanted, to include the dying patient. Why is this happening?
When it comes to death and dying, I feel it is reasonable to suggest that Americans are emotional infants on this topic. In most cases, death is a taboo subject, a topic that many people refuse to discuss with their loved ones, due to its inconceivability. Unfortunately, the healthcare profession is little help on this issue, particularly because responsible end-of-life care has been politicized with fear, inducing labels such as “death panels” or care-rationing for the elderly. Sadly, this nonsense makes for sensational news stories that sell advertising, but it drives America’s needed discourse on death even deeper underground.
My intention with this editorial is to shed some light on this dark corner of the American psyche. I do not believe healthcare systems, federal or otherwise, will be changing their approaches to death and dying anytime soon. Therefore, it is up to the individual and family to plan for this journey we all will be taking.
I have made my desires for the end of my life very clear to my spouse and, more importantly, to my children. Unfortunately, this most-important discussion with family is not enough when confronted with the legal realities of the modern world. The intensely personal desires vocalized with family in a death-and-dying discussion must be documented in advanced directives that make your wishes legally binding when you can no longer speak for yourself. Beyond merely expressing how you want your body handled medically when you die, there are many other considerations, financial and practical, that are best discussed and established when death is not in the immediate future.
A quick Internet search of “end-of-life planning” provides a wealth of information on preparing for this event. I would suggest that one of the best gifts a dying person can give loved ones is a detailed death plan to relieve them of the burden of trying to determine wishes while dealing with the emotions associated with loss.
Finally, I would like to mention the unsung heroes of this topic, hospice care and the palliative-medicine community. Healthcare professionals who devote their skills and knowledge to this area of medicine are truly heroes in my book. I am also encouraged by movements to establish specialty training in hospice care. In my own anesthesiology specialty, the American Board of Anesthesiologists offers a Hospice and Palliative Medicine (HPM) exam, leading to a certificate in this important area of patient care.
I believe active involvement and training of healthcare professionals in end-of-life care patient management is long overdue. For too long, hospice care has been seen by many, patients and providers alike, as “giving up” on a patient. This tired way of thinking has no place in modern medicine. Hospice care, as my wife and I recently related to a family member dealing with a dying spouse, is perhaps the fullest expression of love that one individual can give to another.
We tend to be proactive for so many life-changing events: marriage, birth of a child, a major career change. It makes sense to plan for the single biggest change in anyone’s life — your death. Without a plan, how else will you be sure to be seen reading something good, as O’Rourke recommends?
1 Blecker, Saul, et al. “Association of occupation as a physician with likelihood of dying in a hospital.” JAMA 315.3 (2016): 301-303.
2 http://time.com/money/2793643/cutting-the-high-cost-of-end-of-life-care/ Accessed March 24, 2016.