During my third year of medical school, my first patient was an elderly man who came from a nursing home due to failure to thrive. He started off as intermittently lucid, but quickly deteriorated. He had no family in New York and was alone, as one by one, his organs failed.
However, he did have a brother living in Michigan whom he hadn’t seen in almost a decade. His brother contacted the medical team, insisting we do everything to keep his ailing brother alive. So we did.
Intubations. ABGs. Foley’s. Feeding tubes. Chest compressions that broke his frail body. We were aggressive. Our patient couldn’t refuse, he only moaned in pain with each procedure.
Soon though the team became uneasy with the treatment we were providing. It seemed we were utilizing our medical prowess not to save a life, but rather to tormentingly prolong death. We are all familiar with one of the promises within the Hippocratic Oath: primum non nocere – first, do no harm. We knew we were breaking that promise.
This situation is replayed all throughout the medical system. Yet, my patient’s agonizing demise began long before coming through the ER doors. Dr. Atul Gawande explains in his seminal book, Being Mortal: Illness, Medicine, and What Matters in the End, that the problem stems from having turned aging and death into a medical issue.
It starts with our elderly being dumped into nursing homes, which first came into existence in the 1950s to clear hospital beds of the backlog of patients needing long-term care. Dr. Gawande explains that nursing homes were never created to help transition into senectitude with grace, but rather to “address any number of societal goals- from freeing up hospital beds to taking the burden off families’ hands, to coping with poverty among the elderly- but never the goal that matters to the people who reside in them: “how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore.”
My patient was just one of many relegated to a sterile, lonely institution to live out the rest of their existence. It’s maddening that this is exactly the opposite of what people need as they approach the end. Dr. Gawande’s conversations with psychologist Laura Carstensen reveals how desires change depending on how finite life is perceived. She explains that when young and healthy, people are willing to delay gratification to achieve lofty goals and seek to widen networks of friends and connections. However, if a person’s life is in danger of being cut short, priorities narrow to getting the most out of their remaining time and being with close relations.
Unfortunately, it is at that moment we send our old into fluorescent institutions, taking them far from the life they knew or wanted. Dr. Bill Thomas, an ER doctor-turned farmer that became medical director of an upstate nursing home recognized the soul-sucking environment. He believed that a “good life was one of maximal independence” and wanted to bring the vitality of his farm into the workplace to battle what he dubbed, the Three Plagues: boredom, loneliness, and helplessness.
He ordered green plants in every room, vegetable and flower gardens, two dogs, four cats, a colony of rabbits, a flock of laying hens, one hundred parakeets, and an on-site childcare and after-school program. The infusion of life had an immediate effect on the residents. People who were completely withdrawn, mute, and nonambulatory started speaking to the birds, walking the dogs, and playing with the children. Studies found that the number of prescriptions per resident fell to half, total drug costs fell to 38% and deaths fell 15%. The outstanding results were summed by Dr. Thomas, “I believe that the difference in death rates can be traced to the fundamental need for a reason to live.” Yet, our current prescription to isolate for the sake of safety expedites etiolation by snatching away all reasons to continue living.
Just as we have failed to listen to the needs of our elderly, we have also failed to listen to the needs of our terminally ill, such as my patient. It was stunning when Dr. Gawande reported a study in which two-thirds of cancer patients had no discussion with their doctors about their goals for end-of-life care although, on average, the patients were just four months from death. Patients that did have discussions with their doctors entered hospice care earlier, suffered less, and get this – they lived 2.5% longer. Dr. Gawande puts it best, “In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality.”
Broaching the topic of mortality and offering hospice care to patients is uncomfortable for many physicians. It is thought that hospice means rescinding all treatment and condoning death. But as Dr. Gawande points out, the difference between standard medical care and hospice isn’t treating versus doing nothing, but rather a difference in priorities. In the former, the goal is to extend life, whereas in the latter, the focus is living the fullest life possible at the moment. The dying person wants to be able to spend as much quality time with their loved ones, hospice ensures the patient is comfortable enough to do just that.
By focusing on symptom control, such as relief from pain and nausea, and avoiding futile but aggressive last ditch efforts like cardiopulmonary resuscitation and ICU admissions, patients suffer less and ultimately have more time with loved ones. Therefore, failing to address end-of-life priorities and not offering the option of hospice care when death becomes inevitable is a tremendous failure to our sickest patients.
Perhaps if the discussion for end-of-life preferences occurred with my patient when he was still able to make decisions such a tragic, almost inhumane, situation may not have transpired. Furthermore, having directives on record takes the guilt and weight off families, in fact, studies indicate family members were less likely to experience major depression six months after a patient’s death if hospice was involved.
Dr. Susan Block, a palliative care specialist, recommends asking the following questions:
- What do they understand their prognosis to be?
- What are their concerns about what lies ahead?
- What kind of trade-offs are they willing to make?
- How do they want to spend their time if their health worsens?
- Who do they want to make decisions if they can’t?
Once it is known what is most important to the patient, doctors can advise on an approach that gives the best chance of achieving their goals. It is only by communicating with patients and understanding their needs that we can truly help.
Dr. Gawande writes, “people want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms.” And yet, through the sheer power of medicine and technology, we deny the chance to say goodbye, inflicting “deep gouges at the end of people’s lives and then stand in oblivion to the harm done.”
For our patients’ sakes, we must make the mental shift from simply saving lives to making life the best possible, and most importantly, we must put down our tools and begin listening.