Finding Hope for a Better Death in End of Life Conversations
By Julianna Drew
February 11th, 2016
For much of society, end of life conversations are considered depressing. Until recently, I shared that viewpoint and therefore dreaded reading Being Mortal by Atul Gawande for a medical sociology class last fall. Gawande’s perspective, however, completely surprised me. Instead of viewing death as depressing and something to avoid thinking about, he portrays end of life as natural and potentially rewarding. His focus on a peaceful, dignified death eliminates a lot of the tragedy. When one feels prepared for death, peaceful, satisfied with life and that they have achieved final goals, death seems more like the completely natural part of life that it is. If we focus on celebrating life instead of mourning, and if we change our priorities from prolonging life at all costs to maintaining a high quality of life, then end of life no longer needs to be depressing.
So far I have mostly maintained this optimistic attitude towards the end of life through my research, but it is always difficult to read accounts of how life can end in disappointment, fear, and regret. For example, a passage in The Anatomy of Hope by Jerome Groopman describes a woman who died only a few months after her doctor finally told her that her cancer would likely be fatal, even after knowing this since her diagnosis 6 months prior. Instead of giving her “hope,” as he claimed, he only told her lies. She and her soon to be orphaned daughter felt betrayed and had very little time to prepare financially and mentally for death. As if those arrangements aren’t hard enough to make, the mother was already incredibly sick while trying to plan everything. Although this was clearly wrong, the doctor maintained until the very end that it was better to give someone less time to worry about death rather than help them prepare for what is inevitable.
There seems to be a misconception in our society that talking about death with people who are going to die will make them sad. Doctors often don’t want patients to be sad, they want them to stay hopeful and keep “fighting.” It’s important to realize that a bit of sadness is ultimately productive. Denial of death and realistic hope for recovery are very different. Although it is natural for patients to be sad after serious conversations about impending death, ultimately they will suffer less because their hope for the future will be based in reality and they will have time to prepare for death.
Conversations about prognosis, treatment goals, life goals, all the emotions associated with a complicated medical condition, and any other pressing issues are crucial to a happy and peaceful end of life. Patients who engage in end of life conversations are less likely to receive aggressive, futile care in their last few months, more likely to enroll in hospice, less likely to spend time in the hospital and ICU, and have a higher quality of life. Additionally, their caregivers also have a higher quality of life, are less likely to suffer from mental illness, and have fewer regrets about the death of their loved one (Wright, et al., 2008).
Despite all the benefits, there are many reasons why these conversations don’t often happen between doctors and patients (Periyakoil, Neri, & Kraemer, 2015). Patients and doctors are both reluctant to bring up such a sensitive subject and feel they are admitting “defeat” by talking about death. Doctors are concerned about perceived cultural or language barriers, lack of time, a patient’s lack of health literacy, their own lack of training in end of life conversations, and many other factors (Periyakoil, 2015, Marcus & Mott, 2014). There is uncertainty regarding who is responsible for these conversations, whether or not patients desire them, who should start the conversation, and who should be present. The benefits of end of life conversations are so clear, however, that we must work to overcome these barriers.
In my research, I was surprised to learn that while doctors feel the subject is best brought up near the end of life, the majority of patients want to begin the conversation when they are still feeling well (Tobler et al., 2012). It makes sense that a healthy doctor who is not interested in contemplating her own mortality and whose profession is saving lives would assume that no one wants to face death until the very last moment. Patients, however, want time to process the information, set goals while still healthy enough to achieve them, settle everything with their family, work, and friends, and enjoy their favorite past times (Granek, Krzyzanowska, Tozer, & Mazzotta, 2013). According to a study described in Being Mortal, people prioritize what they really enjoy most near the end of life. The problem is that we don’t have time to do what really matters to us if we only find out the end is near when our body starts to completely fall apart. I was shocked that it is sometimes not made explicitly clear to patients that they are dying until only a few months or even days before death (Cherlin, et al., 2005, Wright, et al., 2015). Key aspects of end of life conversations are open and clear communication, honesty and transparency, beginning the conversation early, and allowing the patient to guide the conversation (Granek, et al., 2013).
There are also interesting health policy implications of end of life conversations. For one, these conversations are time consuming and emotionally difficult, which makes it difficult for busy doctors to initiate them. Beginning January 1, 2016, medicare will now reimburse doctors for end of life conversations. This is a significant step forward to providing high quality end of life care. This decision also has the potential to motivate private insurance companies and medicaid to cover these conversations (Belluck, 2015). In addition to improvements in patient and caregiver quality of life, this new initiative could also save a lot of money spent on futile, expensive procedures in the last weeks of life and stays in hospital, and visits to the emergency room (Mason, 2015, Zuckerman, 2015).
Although end of life conversations with family, friends, and nurses are important, I am focusing on conversations between patients and their doctors, as they are the ones who are most familiar with a patient’s illness and prognosis and communicate important information such as diagnosis, and treatment. In this way, a clear, honest relationship that addresses the reality of death is crucial. Patients need to be open to hard conversations in order to accept their own mortality and inform their doctors about how they want to die, the type of interventions they want, what kind of quality of life is acceptable, their priorities, and their final goals. For some, a few extra painful months of life may not be worth the side effects chemotherapy or surgery. The possibility of walking or eating again might be worth risky surgery for one person, but not for another. Without a real conversation, a doctor has no way of knowing these preferences. At the latest, conversations need to start at diagnosis so that by the time it is clear to the doctor that the illness will be fatal, the patient is already somewhat prepared for that reality. Additionally, end of life conversations work better when the news can be delivered over a series of conversations, over the course of months or even a few years (Tobler et al., 2012). This gives people more time to think things over, let the information sink in, and talk to others.
End of life conversations have the potential to dramatically transform how we view death and how we die. The last few months of life should be a celebration with friends and family and a chance to reflect on and pursue remaining goals and what matters most. Instead, many Americans drag out the process of death until it becomes misery. Conversations are simple and inexpensive, yet they hold such promise to make the difference between dying in denial in an ambulance headed to the emergency room and dying peacefully at home, feeling satisfied with life, out of of pain, and surrounded by friends and family.
Belluck, P. (2015, July 8). Medicare Plans to Pay Doctors for Counseling on End of Life. The New York Times. Retrieved from http://www.nytimes.com/2015/07/09/health/medicare-proposes-paying-doctors-for-end-of-life-counseling.html?_r=0
Cherlin, E., Fried, T., Prigerson, H. G., Schulman-Green, D., Johnson-Hurzeler, R., & Bradley, E. H. (2005). Communication between Physicians and Family Caregivers about Care at the End of Life: When Do Discussions Occur and What Is Said?. Journal Of Palliative Medicine, 8(6), 1176-1185. doi:10.1089/jpm.2005.8.1176
Dunlay, S. M. (2015). A survey of clinician attitudes and self-reported practices regarding end-of-life care in heart failure. Palliative Medicine, 29(3), 260-267.
Gawande, A. (2014). Being Mortal: Illness, medicine, and what matters in the end. London:Profile Books Ltd.
Granek, L., Krzyzanowska, M. K., Tozer, R., & Mazzotta, P. (2013). Oncologists’ Strategies and Barriers to Effective Communication About the End of Life. Journal Of Oncology Practice, 9(4), e129-e135. doi:10.1200/JOP.2012.000800
Groopman, J. (2004). The Anatomy of Hope: How people prevail in the face of illness. New York, NY: Random House.
Marcus, J. D., & Mott, F. E. (2014). Difficult Conversations: From Diagnosis to Death. Ochsner Journal, 14(4), 712.
Mason, D. J. (2015). Conversations About How We Die. JAMA: Journal Of The American Medical Association,313(19), 1895-1896.
Periyakoil, V. S., Neri, E., & Kraemer, H. (2015). No Easy Talk: A Mixed Methods Study of Doctor Reported Barriers to Conducting Effective End-of-Life Conversations with Diverse Patients. Plos ONE, 10(4), 1-13. doi:10.1371/journal.pone.0122321
Tobler, D., Greutmann, M., Colman, J. M., Greutmann-Yantiri, M., Librach, L. S., & Kovacs, A. H. (2012). End-of-life in adults with congenital heart disease: A call for early communication. International Journal Of Cardiology,155383-387. doi:10.1016/j.ijcard.2010.10.050
Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T.,… & Prigerson, H. G. (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA: Journal Of The American Medical Association, 300(14), 1665-1673. doi:10.1001/jama.300.14.1665
Zuckerman, R.B., Stearns, S.C., & Sheingold, S.H. (2015) Hospice Use, Hospitalization, and Medicare Spending at the End of Life. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences.