Hard choices

On July 30, 1993, my grandmother died of glioblastoma multiforme, a brain cancer that ended her life shortly before I was born. The cancer was invasive and well-entrenched in her brain at the time of diagnosis, and the doctors offered radiation, chemotherapy or surgery for treatment. With the options on the table, she went home after that diagnosis and returned to the hospital for palliative radiation therapy which addressed symptoms affecting her quality of life. She died ten months later.

My grandmother’s story is not an uncommon one. Every year countless Americans fall ill, often terminally. Inevitably, burdensome illnesses, whether terminal or not, necessitate complicated choices about a patient’s life. Faced with a dismal prognosis, my grandmother and her family recognized that choices about sickness, and in her case about dying, are seldom simply matters of time. They are matters of place, of quality of life, of the company surrounding the ill. They are matters that prevail far beyond the final seconds of life or even the final hours.

About seventeen years after my grandmother died, the New England Journal of Medicine published a study conducted by Jennifer Temel and her colleagues at Massachusetts General Hospital that examined the effect of early palliative care on patients’ outcomes. Patients in the study had recently been diagnosed with metastatic non-small-cell lung cancer and were randomly assigned to receive early palliative care concurrently with their oncologic care or simply standard oncologic care. Palliative care is a treatment regimen that is primarily concerned with relieving the stress of a life-limiting illness for patients and their families rather than pursuing invasive medical procedures. An example is hospice care, a subset of palliative care devoted specifically to patients in their final six months of life.

After twelve weeks, Temel and her colleagues evaluated quality of life, among other outcomes, in both of the intervention groups. The group that received early palliative care had better quality of life, fewer symptoms of depression and far less aggressive end of life care, consistent with the tenants of a palliative care model. Most shocking, however, was this: the palliative care patients lived longer. Patients who had elected what was ostensibly a less rigorous treatment regimen, with fewer invasive treatments and curative procedures, outlived patients who had opted for more rigorous curative treatments by nearly three months.

And while these survival results were striking, the results regarding quality of life were not, broadly speaking, a tremendous deviation from palliative and hospice care narratives. Palliative care has been shown to improve patient functioning; hospice care programs have significantly improved patients’ mental and emotional quality of life; and some studies suggest that palliative and hospice care cost less.

And yet, in spite of these well-documented benefits, reception of palliative care programs has been lukewarm at best. Patients, for example, often mistakenly perceive palliative care as throwing in the towel. And when the Affordable Care Act sought to cover Medicare beneficiaries for these sorts of end-of-life conversations and decisions, politicians followed Sarah Palin’s lead, raising raucous, unfounded cries of “death panels.”

The United States is long overdue for an honest, difficult conversation about sickness and dying. While modern medicine provides patients an unprecedented array of curative options, it is equally essential that patients are aware of the availability of palliative regimens. Though intensive care units (ICUs) perform remarkable, life-extending operations on a regular basis, many patients reach a point where they desire more than just a prolonged lifespan. They desire increased quality of life through greater autonomy and time with the people they care about. They desire a comfortable, familiar setting and relief from intense pain. For those with these desires, palliative care offers hope.

My grandmother lived for ten months after she was diagnosed. She received home hospice care throughout that period, spending time with people she loved and cared for, her pain and symptoms managed by a hospice nurse. In the end, she slipped into a coma and passed away comfortably in her home, about as good a death as it could have been. Her final ten months were the type of time that every chronically ill patient with such end of life priorities deserves – pain managed, in the company of loved ones and in a setting of her own choosing. It was the type of time afforded her by palliative and, more specifically, hospice care.