A Changing Notion of 'Doing Everything' in End-of-Life Care
Teresa Roberts, MA, MSA, Principal Consultant, Press Ganey Associates
Wednesday, October 05, 2011
Some 25 years ago my grandmother was asked a wrenching question. Her husband, Larry, had been hospitalized yet again with end-stage congestive heart failure and a chart full of other dismal diagnoses. She knew the end was near and as a woman whose faith permeated her being, she believed that he was transitioning to be with God.
“What do you want me to do?” the doctor asked. Should aggressive – though futile – treatment continue? “Do everything,” my grandmother replied. I think she thought that to give any other answer would mean she didn’t love her husband, that she’d “stopped trying” or had “given up on him.” So Larry (my step-grandfather) went through more days of crisis – tubes, resuscitations, intrusive tests. His last days were anything but peaceful. Was this truly “doing everything” for him?
Last year my family went through a similar scenario as my stepfather endured a comparable final journey. End-stage lung cancer, middle stages of Alzheimer’s, broken leg, repeated pneumonia, C. difficile infections had him bouncing between the hospital, rehab, nursing home and hospital for two months.
The hospital’s palliative care nurse contacted my mother, who readily agreed to meet with her. Most of my stepfather’s children repeatedly refused. They saw palliative care as “giving up” and “he wasn’t that bad.” Not long after, still in the midst of endless medical interventions, he died.
Twenty-five years ago, there was little palliative care, and hospice care was just starting to be seen as a good alternative to intense treatment at the end of life. In the past decade there has been tremendous growth in offering palliative care to patients and their families. My own experience seems to indicate the limits of the acceptance of palliative care, an unknown term to most non-health care people.
Palliative care focuses on both treatment and relieving the physical and psychological distress of a patient with multiple chronic illnesses or who is in the final course of a disease. It also reflects how most of us would like to experience the end stages of life. It does not mean choosing to end treatment, and in fact can end up prolonging life as well as enhancing it.
I was truly dismayed when end-of-life care somehow became politicized last year and swept into the fear-mongering associated with “death panels.” How did such a humane and caring form of counseling get defined as “death panels”?
For many years, my aunt has volunteered to do “vigiling,” which comes out of the Quaker tradition of the “Friend” sitting with the dying to create a spiritual atmosphere that focuses on love, not fear. This was common in the 1700s. Then, as now, the emphasis is on simply being with the person so that he or she does not die alone; that you “walk with the dying person as they pass over.” This Friend may help the person with relationships – either addressing unfinished business or simply listening to recollections. Sometimes the vigiling Friend will help write a letter to a loved one or assist family members in coming together. As hearing is often the last sense to go, reading beloved poetry or scripture may also be a final gift. The primary focus is on the one who is dying, rather than the family.
My aunt took care of her husband through his long struggle with cancer, which has given her a deeply layered understanding of approaching death. Yet she describes vigiling in warm terms – of families gathering around to tell stories and laughing at great memories. Sometimes upon request she brings in musicians. (There’s even the occasional harp.) And many times, it’s quiet prayer or even simply quiet. She calls it the business of saying good-bye.
For those who have no one, she’s there to listen and support. Her presence is the validation of the individual’s worth and dignity at the end of life’s journey. My aunt believes that it is an honor to walk with another person through the dying process. I have no doubt that the faith and comfort she offers has made such a passage far better for many than an end filled with the responses to “medical emergencies.”
There is nothing more essential to health care than the second half of that phrase – care. From the time when health care might only mean sitting helplessly beside the ill, compassion has been integral to this calling. To me, “doing everything” at the end of life needs to be redefined; it certainly needs to be taken out of the political realm. The question should be this: When realistic medical options are depleted, how can we provide the most gentle and meaningful passage out of this life?
Too many families never have a chance at final shared memories, music or reading together because it’s all crisis and agonizing decisions. I’d like to see palliative care, including vigiling, become as mainstream and affirming as the “medical miracles” of today. That’s truly “doing everything” for those we love.