Death, like birth, is a natural event, and like birth, it is often a messy event.
Despite this truth, there’s a conundrum in modern medicine. Folks lucky enough to have full access to comprehensive medical care can face a paradoxical dilemma as they near the end of their lives. In the process of bolstering our treatment options and our biomedical technology, we’ve reached a point in sophisticated medical care where death can seem more like a medical complication than a natural end to one’s life. With such an array of dazzling treatment options, we’re tempted to use them all until the choices are exhausted. Unfortunately, sometimes the momentum overshadows a patient’s true goals of care.
Certainly, life expectancy in the United States has increased dramatically in the last century thanks to water purification, sewage disposal, disease-protective immunizations and a host of disease-curing antibiotics. But, this isn’t the whole story. Additionally, we have discovered remarkable cancer treatments, perfected revascularization techniques and organ-preserving therapies (including organ transplantation and dialysis machines for kidneys), and even have artificial hearts and fancy pumping devices that assist a failing heart in doing its job.
In the 1940s, the predecessors of modern Intensive Care Unit ventilators appeared on the scene. Today’s complex, computerized models can keep lungs oxygenated for years if adjusted and maintained properly, even when a person is no longer breathing on their own.
Just as life expectancy has increased dramatically with these public health triumphs and medical advances, death expectancy has plummeted. It’s clear we can keep hearts beating and rhythmic delivery of oxygen to the lungs going long after a person’s independent ability to survive is gone. But should we?
Physicians and patients alike share the zeal of “let’s do everything available.”
Doctors have been caught up in the “because we can” craze just as much as the general public. We physicians were trained to treat and cure in medical school and in our residency programs. And, we have learned our trade in a time of tremendous technological and scientific advancement. So, why not utilize the full armamentarium at our disposal?
Patients have heard dramatic stories of slowed disease progression and even cures with aggressive (and sometimes risky) treatments. Unfortunately, these stories are often the exception rather than the rule. Patients should enter into such regimens with full understanding of risks, possible benefits, and how such regimens support or thwart personal priorities.
There’s a point in the course of every advanced serious illness when evidence-based curative treatments are exhausted. It’s a place of despair for patients and doctors alike.
Frequently, the unspoken words behind the frenetic medical push in advanced serious illness are, for patients, “I don’t want to die,” and, for doctors, “I don’t want you to think I’m abandoning you.” Both are powerful and emotionally charged motivations. Just imagine how much better we would be served if we could name these feelings—these fears—and then talk about medical care options consonant with the priorities behind these heartfelt experiences.
As an illness progresses, it’s appropriate to ask a doctor, “If I choose to do nothing more except treat my symptoms, how will that decision affect the course of my illness compared to choosing the aggressive treatment you mention?” Information is power. Honest and thorough communication aligns patients and their physicians in partnership; such conversations also help patients and their families to frame hopes based on likely outcomes and expected time frames.
Often folks find it helpful to examine their style of living as they face decisions about medical care for advanced serious illness. If a person has tended to be a risk-taker, even a gambler, it might feel natural to opt for a risky surgery or an experimental therapy—even if such treatment only has a 1% chance of success. On the other hand, if a person has lived life cautiously, opting most often for the “sure thing,” they might feel most comfortable spending the final weeks or months of life trying to fulfill bucket-list items and organizing gatherings with cherished friends and family.
If serious illness leads to a hospital stay, consider asking your physician for a palliative care consultation. Many hospitals now have palliative care nurses and physicians who assist patients and their families in maximizing quality of life and symptom management for advanced illness. They can become comforting allies in developing individual goals of care. Serious advanced illness is always a family affair; palliative care consultants are skillful in supporting both patient and family in relieving suffering. Remember, palliative care consultants work with primary physicians rather than replacing them.
Additionally, consider requesting visits from hospital social workers and chaplains. Social workers have broad knowledge about helpful community resources and can facilitate the delivery of medical equipment, oxygen, walkers, and even hospital beds into a patient’s home to make living away from the hospital less burdensome. Additionally, social workers can suggest community support groups to connect you with patients and families who are facing similar struggles with illness and caregiving.
Everyone with a serious illness experiences spiritual distress. Even folks who don’t consider themselves religious in any sense can benefit from reflecting on their illness-altered sense of self. Spiritual counseling with a chaplain or other professional might also help folks reflect on their sources of emotional and spiritual comfort as advanced illness edits their life.
Ultimately, death comes to all of us. The great array of medical possibilities has the potential to prolong life and postpone death but not to defeat it.
Our priorities and personalities can and should play a major role in how we die, but difficult, honest conversations must occur to make this happen. Ask about your illness and what treatments are possible. How will these treatments affect the quality and length of your life? Are the benefits and trade-offs worthwhile? Will additional medical therapy prolong meaningful life or more likely prevent a meaningful dying time? Only a patient can answer these questions. And only honest sharing of information and feelings between patients and their providers allows the creation of informed goals of care.
The system can sweep us up in its own momentum unless we deliberately create space for reflection to clarify our own priorities. In Zen Master Kozan Ichikyo’s words:
Empty handed I entered
Barefoot I leave it
My coming, my going —
Two simple happenings
That got entangled.
Our births and our deaths occur with certainty. The gloriously unique and imperfect tapestry that each of us weaves between them is simultaneously our gift to the world and the legacy we leave to those who love us.
Stephen L Hines, MD