(This article was provided by The Op-Ed Project.)
Sitting in a wheelchair in the hallway of a nursing home, thinking about better days in her youth, a woman feels the fatigue of endless trips to the hospital from recurrent infections. She begs her daughter to take her home, where she can listen to her music while looking out of her living-room window.
It started with a fall that resulted in injury, and things went downhill from there. As the woman needed more care, and with limited personal funds, she was stuck in the nursing home, unable to achieve the vision she has for how to spend her final days.
Although the circumstances may differ slightly, this story — similar to one told in The New York Times — is a common one for aging Americans. Many are caught in the bind of managing their healthcare needs and prioritizing their end-of-life goals. When a patient or family member looks at you, exhausted, no longer wanting to fight the battle of one infection after the next, it makes one wonder if maybe infection could be a good way to die.
An Early Introduction
As an aspiring physician and the daughter of a geriatrician, I often took trips to the nursing home with my dad, the doctor, in my youth. I saw disabled elders, lying in bed, sitting in the hallways, some with advanced dementia, some more cognizant of their surroundings.
I vividly recall his patient with advanced breast cancer that was eating through her chest, repeatedly getting infected. Suffering from advanced dementia with no next of kin and a court-appointed power of attorney, the decision was made not to pursue chemotherapy, but she was still treated with antibiotics.
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As a young physician, I saw for myself the burden of infectious diseases, most commonly pneumonia and the urinary tract infections that older adults face. For more than a decade, my research focus has been on finding strategies to prevent these morbid conditions, particularly in our frailest elders who reside in nursing homes. When preventing these infections has not been possible, optimal treatment of them is the next priority.
But there comes a time in one's life when the goals of care need to shift and even optimal treatment of an infection is not paramount. The role of the physician is to help a family realize when this moment has come. Currently, these conversations are happening too far along into the dying process; there are moves by insurance companies to reimburse these conversations earlier on.
The Institute of Medicine has called for sweeping change in health care at the end of life. Funding and nonpartisan agencies are in agreement that changes to the current system need to be made to be consistent with patient and family desires and reduce the financial burden to the healthcare system.
Medicare expenditures for skilled nursing care have doubled in the past decade, jumping from $12 billion in 2000 to $26 billion in 2010. Adverse events, 26 percent of which are caused by infections, in these 1.8 million beneficiaries bear a significant portion of this fiscal burden. Currently, more elders die in the hospital or a nursing home than at home.
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To be sure, these choices are very personal. No one person's experience can dictate how another may choose to make decisions at the end of life. For one person, treating one infection may be one too many, while for another, it might be treatment of more than 10 infections.
Additionally, doctors are notoriously inaccurate at predicting when death might actually come, so it is difficult to determine the right time to withhold treatment. Even my father, an experienced nursing-home physician, and I disagree on the use of antibiotics at the end of life. He believes that such a simple intervention should not be withheld if sustaining a matriarch or patriarch can help hold a family together, and I do see the value of this perspective. On the other hand, at the end of a rich and beautiful life, there is a dignified way to die.
A Peaceful Death
This concept is not new. The saying, "pneumonia is the old man's friend" has existed for years. Left untreated, a person with pneumonia will slowly lose consciousness and pass away in his or her sleep. For some people, fighting until the end, dying in a medical intensive care unit from a third episode of pneumonia with a resistant organism may be what they want. For many others, a dignified and peaceful death is what they would like to plan for.
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If you envision the latter scenario as one you would prefer, consider expressing this to your loved ones well before this time comes. As families gather with loved ones throughout the year, take time to discuss what is most important in those final months and years, not just the final moments. Although we have antibiotics to treat infections, with pain medications and other medications to maintain comfort, death from an infection may be less prolonged and relatively pain-free.
Doing Too Much
In American society, we have moved too far in the direction of doing more. There comes a point where doing less is more appropriate. Certainly there are financial incentives in the health care system that may be counterintuitive, allowing for fewer choices at the end of life. But the health care system is not only to blame. Patients and physicians have played a role in this process and can take ownership of these decisions earlier on.
Withholding life-sustaining measures, such as antibiotics, should not raise the specter of "death panels." Although patient autonomy is most important, often patients and families look to physicians to provide guidance. As an infectious disease physician, my most important role may not be to advise which antibiotic to use or which diagnostic test to perform next, but to sit with a distressed family to help justify that it is OK to let go. Doing so cherishes and honors a beautiful life that was well-lived.
Manisha Juthani-Mehta is a physician and an Associate Professor and Infectious Diseases Fellowship Program Director in the Section of Infectious Diseases at Yale School of Medicine. Her federally-funded research is focused on pneumonia and urinary tract infections in nursing home residents. She is an OpEd Project Public Voices Fellow.