"In the tender compassion of our God,
the dawn from on high shall break upon us,
to shine on those who dwell in darkness and the shadow of death,
and to guide our feet in the way of peace." -- Luke 1:78-79
With the dawn of Advent, a new church year begins. Unlike the parties and light-hearted resolutions of the secular New Year, Advent's liturgical New Year ushers in a time of paradox: Christ has come, yet not come, yet will come again; scripture proclaims both justice now and justice at the end of time; images of the season hold darkness and light, endings and beginnings, searching and finding in close tension. We wait for Emmanuel to dwell at our side as we walk in the shadow of death.
Due to fear or denial or simple busyness, we spend most of our waking hours ignorantly oblivious to or consciously ignoring the reality of the shadow of death. As I have learned after a decade in hospice care, the shadow of death catches up with us all regardless of age, gender, race, religion or economic class and most often we die the way we live.
The Nov. 16 Report of the Dartmouth Atlas Project, "Quality End-of-Life Cancer Care for Medicare Beneficiaries," paints a picture of how many of us die in America and conversely raises some significant questions about how we are living. The Report follows a 20 percent sample of all Medicare beneficiaries who died between the ages of 66 and 99 years during the period of 2003-2007 with poor prognosis cancer. For each patient they identified hospitalizations, hospital days, intensive care unit admissions and days, number of days of hospice use, and the use of chemotherapy as well as any potentially life-sustaining procedures.
The results of the report highlight Advent worthy paradoxes:
1. Most patients with serious illness prefer to be in the comforts of home surrounded by people who love them, but one-third of all the patients in the report die in the hospital.
2. Spending more time in the hospital does not equal better or more compassionate care. Instead, more days spent in the hospital tends to equal more aggressive treatments that for patients with advanced chronic illness are rarely effective and often cause debilitating side effects and suffering.
3. The good news that 50 percent of patients in the report spend time in hospice before death is tempered by the average length of stay in hospice at 8.7 days, which is barely enough time to get settled at home let alone truly savor your last days with your loved ones.
Inspired by this report, a recent episode of Frontline on PBS featured the Intensive Care Unit at Mount Sinai Hospital in New York. Titled "Facing Death," the show follows hospital health care providers, most often in the ICU, as they companion patients and their loved ones making life and death decisions. The show can be summed up with two words: tubes and machines. The medical professionals exhibit a wealth of knowledge about the extensive abilities of science to extend life as defined by monitors, but they also exhibit a great poverty in their ability to companion patients and loved ones in the art of being alive.
The Dartmouth Atlas Project conclusion states well the dilemma of these specialists:
"Discussions of end-of-life care are often polarized, framing patients' choices as cure versus care, hospital versus hospice, and life versus death. This black and white view of the course of cancer and its care ... is a disservice to patients who wish to live, but also to live well. Living well has a different meaning for each patient, and it is the responsibility of clinicians and health care systems to help patients articulate their goals for living and for their medical care, whether the expectation is to live for years or for a few months or weeks."
Personally, I find this expectation of our medical professionals to be too much to ask. Beyond a select few, are there that many physicians who can be both an expert in the latest treatments and a personal guru with existential sensitivity?
In hospice care, we realize that patients deserve a team of professionals with diverse backgrounds and perspectives in order to serve the person's physical, emotional, relational and spiritual needs. Peering into the ICU of Mount Sinai Hospital we see not only a lack of interdisciplinary perspective and but also a lack of the one thing we thankfully have to give in hospice care: Time.
Truly being present to a patient and family in order to individualize a care plan demands time, and sadly in today's medical environment, even more than money, time is lacking. Without time, how can we ponder, argue, research, discuss, pray? The third verse of "O Come, O Come, Emanuel" comes to mind: "O come, thou Wisdom from on high, and order all things, far and nigh; to us the path of knowledge show, and cause us in her ways to go." In the guts of the ICU there is little time for wisdom or order or knowledge to come, let alone to rejoice.
Perhaps at this liturgical New Year we should make resolutions about how we are living our lives that take into consideration how we walk in the shadow of death. Do your loved ones know how you want to spend your last months, weeks or days if you were faced with a life-limiting illness? Do you want to die in a hospital? If you are able to die the way you live, what does that look like? Will your loved ones see Emmanuel in your home or your hospital room? And if they struggle to see Emmanuel, who will be there to remind them that God is always with you? Our answers to these questions may contain conditions and even paradox, but what better time to ask and answer them than Advent?