Every now and then, your GetReligionistas run into a story that puts us in a real bind, in terms of the basic media-criticism work that we do here.
The nonprofit journalism group ProPublica, in this case working with The New Yorker, recently published a great example of this kind of report. We are talking about a deeply researched piece that is a must-read story — period. Reporter Ava Kofman’s work is painful, even agonizing, to read, for all the right reasons.
At the same time, the story is seriously lacking when it comes to exploring religious facts and beliefs that are essential to its subject, which is hospice care.
The feature does include a nod to the Christian history of hospice care, but avoids any meaningful discussion of the differences between the work done in faith-based hospice networks — which are massive — and what happens with some (maybe many) for-profit hospices, such as those at the hellish heart of this report. The headline: “Endgame: How the Visionary Hospice Movement Became a For-Profit Hustle.”
This must-read report was the hook for this week’s “Crossroads” podcast (CLICK HERE to tune that in) and I will stress that this subject was deeply personal for host Todd Wilken and for me. Wilken is a Missouri-Synod Lutheran pastor and has years of experience assisting with end-of-life issues and questions. My father was a Southern Baptist pastor who spent the last decade of his ministry working in Houston’s hospital complex, include the Texas Children’s Hospital.
This story does a great job of the “follow the money” components of scandals linked to for-profit hospice care. Here is the anecdotal lede:
Over the years, Marsha Farmer had learned what to look for. As she drove the back roads of rural Alabama, she kept an eye out for dilapidated homes and trailers with wheelchair ramps. Some days, she’d ride the one-car ferry across the river to Lower Peach Tree and other secluded hamlets where a few houses lacked running water and bare soil was visible beneath the floorboards. Other times, she’d scan church prayer lists for the names of families with ailing members.
Farmer was selling hospice, which, strictly speaking, is for the dying. To qualify, patients must agree to forgo curative care and be certified by doctors as having less than six months to live. But at AseraCare, a national chain where Farmer worked, she solicited recruits regardless of whether they were near death.
Much of this horror story unfolds in the Bible Belt — note the reference to this hospice-seller (who turns whistleblower) checking out church bulletins for potential clients. But there is no evidence that clergy play any roles in the end-of-life dramas that unfold here. I wondered if Christian faith was linked to Farmer’s decision to get out of this deadly game and contact authorities.
There’s no way to do justice to the horrors depicted in this feature. But it is crucial to see the larger picture in this tax-dollar funded gambit, built on high-pressure contacts with weak, sick, painfully isolated women and men. Here is some essential summary material:
It might be counterintuitive to run an enterprise that is wholly dependent on clients who aren’t long for this world, but companies in the hospice business can expect some of the biggest returns for the least amount of effort of any sector in American health care. Medicare pays providers a set rate per patient per day, regardless of how much help they deliver. Since most hospice care takes place at home and nurses aren’t required to visit more than twice a month, it’s not difficult to keep overhead low and to outsource the bulk of the labor to unpaid family members — assuming that willing family members are at hand.
Up to a point, the way Medicare has designed the hospice benefit rewards providers for recruiting patients who aren’t imminently dying. Long hospice stays translate into larger margins, and stable patients require fewer expensive medications and supplies than those in the final throes of illness. Although two doctors must initially certify that a patient is terminally ill, she can be recertified as such again and again.
What does this have to do with religion, other than the fact that — for many, maybe most, Americans — end-of-life questions are rooted in matters of faith?
The ProPublica story includes, as noted earlier, a nod to the Christian roots of the hospice movement. Here is that passage, which is long, but essential:
The philosophy of hospice was imported to the United States in the 1960s by Dame Cicely Saunders, an English doctor and social worker who’d grown appalled by the “wretched habits of big, busy hospitals where everyone tiptoes past the bed and the dying soon learn to pretend to be asleep.” Her counterpractice, which she refined at a Catholic clinic for the poor in East London, was to treat a dying patient’s “total pain” — his physical suffering, spiritual needs and existential disquiet. In a pilot program, Saunders prescribed terminally ill patients cocktails of morphine, cocaine and alcohol — whiskey, gin or brandy, depending on which they preferred. Early results were striking. Before-and-after photos of cancer patients showed formerly anguished figures knitting scarves and raising toasts.
Saunders’ vision went mainstream in 1969, when the Swiss-born psychiatrist Elisabeth Kübler-Ross published her groundbreaking study, “On Death and Dying.” The subjects in her account were living their final days in a Chicago hospital, and some of them described how lonely and harsh it felt to be in an intensive-care unit, separated from family. Many Americans came away from the book convinced that end-of-life care in hospitals was inhumane. Kübler-Ross and Saunders, like their contemporaries in the women’s-health and deinstitutionalization movements, pushed for greater patient autonomy — in this case, for people to have more control over how they would exit the world. The first American hospice opened in Connecticut in 1974. By 1981, hundreds more hospices had started, and, soon after, President Ronald Reagan recognized the potential federal savings — many people undergo unnecessary, expensive hospitalizations just before they die — and authorized Medicare to cover the cost.
Forty years on, half of all Americans die in hospice care. Most of these deaths take place at home. When done right, the program allows people to experience as little pain as possible and to spend meaningful time with their loved ones. Nurses stop by to manage symptoms. Aides assist with bathing, medications and housekeeping. Social workers help families over bureaucratic hurdles. Clergy offer what comfort they can, and bereavement counselors provide support in the aftermath.
Crucial words: “When done right.” Does faith have anything to do with that?
Actually, Saunders was a devout Anglican and, at first, she considered basing the first hospice in an explicitly Anglican setting — which led some to assume she wanted to start a formal “community” for worship and service, such as a convent of sisters.
It is clear that religious questions and issues were at the heart of her work and she struggled to know how formal that could be, while working in medical contexts. This website on the origins of her work is very helpful. Here is a piece of a 1960 letter by Saunders that shows come context:
‘We have decided that it shall be an interdenominational foundation, although we will have something in the documents stating as firmly as possible that it must be carried out as a Christian work as well as a medical one … I found that I just couldn’t think it was right to be exclusive. First of all, I could not be exclusively evangelical and thought that perhaps it would therefore have to be Anglican to keep it safe from heresy or secularisation. But then it didn’t seem right to be that either, and in our legal Memorandum stands the statement: “there shall be a chapel available for Christian worship”, and I do not think that really we could be much broader than that!’
There’s much more history there and, frankly, I know that the ProPublica piece could not dig into that.
But here is the bottom line for me: There are many, many explicitly Christian hospice centers in the United States and what happens in them is an essential part of this story. This is suggested in the headline, with the word “visionary” suggesting something other than a for-profit “hustle.”
To be blunt: The story needs to let readers know what good, even holy, hospice care looks like — contrasting that work with the horrible abuses depicted (with good cause) by ProPublica.
Here are some relevant questions: How many Christian hospices remain alive and well? How many families are touched by that work? What are their legal and even theological standards that prevent the kind of abuse seen in many fly-by-night secular, for-profit networks? Are there scandals in the faith-based centers as well?
It’s possible that covering these issues would have required too much additional ink. I get that. But, if hospice care has been corrupted, readers need to know that there was something important that BECAME corrupted and that Christian faith was part of the vision that was lost. The bottom line: Some of the cases depicted by ProPublica verge on assisted suicide, with the patent unaware of what is happening.
This is not, by the way, a new issue. See this Christianity Today report from 1998: “Hospice Care Hijacked? A bottom-line, cost-efficient mentality obscures the movement's original Christian vision.”
Here is another helpful source of context, care of the California Catholic Conference: “Frequently Asked Questions About End-of-Life Care.” Here is one important piece of that CCC feature (see also this guide from the U.S. Catholic bishops, “Ethical and Religious Directives for Catholic Health Care Services”).
What is the difference between a hospital and a hospice?
A hospital is for patients seeking medical treatment to cure their illness or injury. A hospice is for patients who have a terminal illness, who have suspended curative efforts and who want to die in a homelike setting. Hospice care is "comfort care," which can occur in either a hospice facility or in a patient's home.
The hospice patient is attended by a team of caregivers including medical personnel, counselors, clergy and family members. The goal of hospice care is to ensure that the physical, spiritual and emotional needs of patients are all met so that they may live well while dying.
One more time: The ProPublica feature is must reading. But it needed to include some essential facts about the original vision of faith-based hospice work, which still exists from coast to coast, as well as what happens when the love of money corrupts end-of-life care.
Enjoy the podcast and, please, pass it along to others.
FIRST IMAGE: Photo posted with a feature — “End-of-Life Signs: What to Expect as a Loved One Nears Death” — at the Samaritan health-care weblog on hospice care.