You know the saying “doctors make the worst patients.” Although, when it comes to the end-of-life care, they may be more different than they are difficult. Like most people, doctors want to die in a painless and peaceful way.1 Although doctors want to die in the same manner as most people, do they die any differently than those who are not physicians?
The cultural perspective of this blog post will investigate why doctors seem to die differently than those not in the medical field. A pivotal essay by Ken Murray, a doctor himself, provided the first insight into why doctors typically deny aggressive, and even futile, end-of-life care. He shares that doctors witness their patients go through aggressive and futile measures to stay alive, only to see them suffer further.1 Murray is not the only doctor who has come forward about these intense treatments. Dr. Kendra Fleagle Gorlitsky accounts times when she performed cardiopulmonary resuscitation [CPR] on an elderly woman. She recounted that CPR generally results in broken ribs, which can leave people in more pain at the end of their lives. Dr. Gorlitsky knew the attempt was in vain. This event may have influenced Dr. Gorlitsky to have a Do Not Resuscitate [DNR] at the end of her life.2 A Stanford study exemplified that many doctors concurred with the opinions of Murray and Gorlitsky. The study showed that 88.3% of doctors surveyed in 2013 indicated that they would choose to have a DNR.3 Doctors choose limited measures at the end of their lives because they understand that is not the way to a peaceful end.
On the other hand, there is no proof that doctors have a better end-of-life experience. Although, according to an article in The New York Times, there are no statistics to support the fact that doctors have a better end-of-life experience, there is proof that suggests that doctors are more likely to have advanced directives and living wills. This may be because doctors are typically closer to death than the general population.4 As aforementioned, doctors see the aggressive treatment their patients go through, and advanced directives and living wills may indicate to the proxy decision-maker that the doctor does not want the same treatment. A retrospective study also concurs with this statement. According to the study, doctors are more likely to have completed advanced directives than those who are not doctors.5 Even though doctors are more likely to opt out of aggressive treatment, this retrospective study found that those who are and are not doctors are about as likely to use intensive end-of-life care.5 This study was of those who already died between 2008 and 2010, so more research would need to be done in order to determine if there is a current correlation between being a doctor and having intense end-of-life care.5
Doctors see the aggressive treatment that their patients endure daily. They know that these efforts are in vain and typically end in discomfort and pain. Because of this recognition, doctors are less likely to accept aggressive treatment, and are more likely to have an advance directive and living wills. Doctors are well-aware of the prognosis and their chances of survival. They are also cognizant of the limits to modern technology, and this contributes to the little treatment they seek.1
This is a sample of an advanced directive, or living will, in the state of North Carolina.
This is a sample DNR in North Carolina, and it outlines the patient’s wishes in terms of extensive end-of-life measures.
The rejection of aggressive, end-of-life care options by physicians may not only be rooted in cultural perceptions, but also in the minimal, if any, improvements in quality life or increases in life span after administering these extensive measures (see The Legal and Ethics of Prognosing the Terminally Ill). The experience afforded to physicians working with patients at the end-of-life offers insight into how patients suffer in the hopes of prolonging life. Various methods of end-of-life care exist as options for terminally-ill patients, or those in critical care. Perhaps one of the most overused resources involve extended stays in the Intensive Care Unit [ICU], which may entail placement of feeding tubes, insertion of catheters, placement on artificial ventilators, and chemotherapy for cancer patients.
This photo displays a typical scene in ICU rooms across the country with an abundance of wires, tubes, and equipment that the patient is often hooked up to.
To provide a frame of reference for the usage of these resources, approximately 38.3% of deaths reported in six states across eastern United States since 1993 occurred in a hospital, 22.4% of which occurred following admission into the ICU.6 It is understandable that doctors are more hesitant to offer, and use for themselves, extended ICU support for the critically ill when approximately 1 in 5 Americans die even after being admitted to the ICU. The United States, in particular, has a disproportionately higher number of extended ICU stays when compared to a majority of developed nations. For instance, only 31.5% of medical deaths and 61% of surgical deaths in patients over the age of 85 involved ICU use in the United States, which far surpasses the respective rates 1.9% and the 8.5% in England.7
This figure displays the global variation in ICU beds per 100,000 people in each of these countries. https://ccforum.biomedcentral.com/articles/10.1186/cc11140
The medicalization of dying has popularized the notion of these aggressive, end-of-life care treatments, such as extended ICU use, as viable options to the public. However, a general consensus against these invasive options, as referenced earlier, seems to be forming amongst physicians, leading the to growing popularity of options such as hospice and palliative care (see The Differences Between Hospice and Palliative Care). The term “medically futile” has become a controversial and highly-debated topic in bioethics. Technically speaking, quantitative, or physiological, futility refers to the situation in which the chance of the treatment producing the desired effect is low or poor, referring to a success rate of less than 1% in some cases.8 One study of 1,900 subjects found that the chances of a poor neurologic outcome during or after the stay, including severe cerebral disability, coma, or persistent vegetative state, was 77%. Along with this, mechanical ventilation increased the likelihood of a patient exhibiting symptoms of delirium three-fold. Absent pupil or corneal response after just twenty-four hours in the ICU would increase the likelihood of poor neurological outcome ten-fold, emphasizing quality of life as a significant cost for those weighing their options with regard to sustaining or prolonging life.9
In addition to psychological complications, mechanical ventilation often results in increased inflammation and fluid in the lungs, eventually leading to multi-organ failure, a common cause of death associated with longer stays in the ICU.10 Clearly, the weight of futility has increased in providers’ perceptions of death and logically impacted their decision to pursue invasive options. When considering constraints on resources in hospitals, decreases in the quality of life of the patients, and the limited increases in their lifespans, the decision of most doctors to reject these aggressive measures, that they so often see fail, seems justified. However, when faced with making that decision for someone else’s life, this may not be the case.
The stark difference between the way that doctor’s choose to approach their end-of-life care juxtaposed to what they generally prescribe to their patients raises many questions and ethical concerns. The biggest question being: if doctors do not see this care as holistically the best way to approach a terminal disease, why do they influence others to take this route? In fact, in many scenarios, it is pressure from the healthcare system itself rather than patient interests that direct one’s end of life experience.11 This can be attributed to many different things. For one, the entire enterprise of medicine is focused on the extension of life, and often prioritizes quantity over quality. Furthermore, treatment can be very subjective and thus variable to an individual doctor’s opinion or practice style. Since there are not always set procedures–especially in the case of terminal illnesses–the doctor’s own opinion often reigns supreme. When identifying why physicians may pressure futile care, “prognostic uncertainty,” “legal pressures,” “personal beliefs,” and “previous experience with that patient” all ranked highly.12
This figure displays reasons for physician-driven futile care. The interlocking and sometimes overlapping points can make a strenuous decision that much more complex.
Finally, doctors often prescribe the most aggressive forms of end of life care in order to avoid legal conflicts.12 As doctors work in a field that confronts death often, they may be suspected of not doing “everything they can” to save a life, prompting the family or other healthcare providers to attempt to press charges. For example, in the article How Doctors Die, Ken Murray describes a situation in which his friend Jack had asked not to be placed on life support at the end of his life, but his wishes were ignored. When Murray unplugged the machine, which inevitably caused Jack’s death, one of the nurses attempted to report the instance to local police as a possible homicide.1 The fear of impending legal charges is one that a doctor must constantly consider, contributing to part of the reason they may exclude the most reasonable form of end-of-life care as an option.
This idea in itself raises a moral conflict as a doctor must juggle whether to be aligned with the law or what is in his or her patient’s best interest. In one case presented in Stephanie O’ Neil’s article, Nora Zamichow expresses that she wished doctors had been more transparent when it came to her late husband’s end-of-life care. After reading Ken Murray’s article, she felt dismayed at the fact that she had not been presented “the full range of options”.2
So why don’t doctors give nontreatment as a treatment option, or limit treatment to reasonable treatment rather than “futile care”? For some doctors it comes largely from the discomfort associated with the subject of death itself. In Western countries, like America, death is a taboo subject, which is portrayed in the ways we refer to death: “passing away,” “didn’t make it,” “at peace,” “eternal rest,” etc. All of these roundabout ways of describing death simultaneously symbolize the American instinct to avoid death. As one doctor puts “I think it’s sometimes easier to give hope then to give reality.”2 This is then only exacerbated by subtle pressure from the family to continue doing “everything” one can to save their loved one. In fact, in a survey explicated in the article written by Palda et al., “family request” was cited as the number one reason for providing futile care.12 Unfortunately, the family’s desire to extend their loved one’s life may be the unintentional cause of their loved one’s extended suffering.
The best way to avoid this dismal pitfall is to improve family-physician communication. In a survey described in the article written by Sibbald et al., there seemed to be a general consensus that medical professionals educating the public about “futile care” was necessary in limiting it. In this sense, both doctors and the common person must make an adjustment. Medical professionals need to present all of the the information in regards to a case without fear of legal prosecution, and patients–as well as family members of patients–must be receptive to this reality in order to prevent prolonged suffering associated with futile care.13
By delving into the scientific, cultural, and ethical considerations that doctors must take into account when faced with death, the wide gap between end-of-life options that doctors offer to patients and those they choose for themselves can be better understood. Medical professionals witness the limitations of modern technology and the significant costs associated with aggressive end-of-life options more frequently than most of the general public. Although the chances of survival or recovery of patients choosing these options are low, this sliver of hope is often enough for family members to hang on as they watch their loved ones slip away from them. Forcing doctors to consider relationships and family dynamics places them in difficult positions when discussing treatment options and further complicates their suggestions. The research discussed above can better inform the modification of current patient-provider interactions to ensure that doctors provide reasonable end-of-life care options to patients, while not prolonging the suffering of both the patients and their loved ones.
By: Naomi Glidden, Emily Miller, Rishika Reddy
1 Ken Murray, “How Doctors Die,” 30 November 2011, https://www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/nexus/.
2 Stephanie O’Neill, “Knowing How Doctors Die Can Change End-Of-Life Discussions,” 6 July 2015, https://www.npr.org/sections/health-shots/2015/07/06/413691959/knowing-how-doctors-die-can-change-end-of-life-discussions.
3 Tracie White, “Most physicians would forgo aggressive treatment for themselves at the end of life, study finds,” http://med.stanford.edu/news/all-news/2014/05/most-physicians-would-forgo-aggressive-treatment-for-themselves-.html.
4 Dan Gorenstein, “How Doctors Die: In Coming to Grips With Their Own Mortality, They Are Showing the Way for Others,” The New York Times, November 20, 2013, page F1.
6 Angus, DC. “Use of Intensive Care at the End of Life in the United States: An Epidemiologic Study.” Critical Care Medicine (2004): 293-94.
7 Niederman, Michael S., and Jeffrey T. Berger. “The Delivery of Futile Care Is Harmful to Other Patients.” Critical Care Medicine (March 2010). https://oce-ovid-com.libproxy.lib.unc.edu/article/00003246-201010001-00003/HTML.
8 Aghabarary, Maryam, and Nahid Dehghan Nayeri. “Medical Futility and Its Challenges: A Review Study.” Journal of Medical Ethics and History of Medicine, October 20, 2016.
9 Meyer, Nuala J., and Jesse B. Hall. “Bench-to-bedside Review: Brain Dysfunction in Critically Ill Patients – the Intensive Care Unit and beyond.” Critical Care Medicine, July 24, 2006. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1751001/.
10 Johns Hopkins School of Medicine. “Longer Stay in Hospital ICU Has Lasting Impact on Quality of Life.” News release, April 2, 2014. Hopkins Medicine. https://www.hopkinsmedicine.org/news/media/releases/longer_stay_in_hospital_icu_has_lasting_impact_on_quality_of_life.
11 Periyakoil, Vyjeyanthi S., Eric Neri, Ann Fong, and Helena Kraemer. 2014. “Do Unto Others: Doctors Personal End-of-Life Resuscitation Preferences and Their Attitudes toward Advance Directives.” PLoS ONE 9 (5). https://doi.org/10.1371/journal.pone.0098246.
12 Palda, Valerie A., Kerry W. Bowman, Richard F. Mclean, and Martin G. Chapman. 2005. “‘Futile’ Care: Do We Provide It? Why? A Semistructured, Canada-Wide Survey of Intensive Care Unit Doctors and Nurses.” Journal of Critical Care 20 (3): 207–13. https://doi.org/10.1016/j.jcrc.2005.05.006.
13 Sibbald, Robert, James Downar, and Laura Hawryluck. 2007. “Perceptions of ‘Futile Care’ among Caregivers in Intensive Care Units.” CMAJ, November, 1201–8. https://doi.org/https://doi.org/10.1503/cmaj.070144.