I got to write a post for the Beacon Broadside on death doulas and their trainers. You can read it here. And here’s a small clip:
By promising to reveal the true meaning of life—once the animating promise of legacy religious denominations—doula trainers charge their adherents for access to magical, terminal patients who will save them from their mundane lives and give their existence meaning. In Secularism in Antebellum America, John Lardas Modern writes that “marks of spirituality—the ethic of authenticity as well as the search for unity and wholeness—are not simply phenomena within religion but discursive effects of secularism (bound up, for example, with ideologies of the market, the triumph of the therapeutic, sentimental individualism, and the progressive telos that accompanies each).”
When looked at from this angle, the popularity and proliferation of death doula training is characterized by the most criticized aspects of today’s self-help, therapeutic culture: it provides those searching for meaning in life to buy experiences (or products) that promise to provide it. This analysis of the movement doesn’t detract from the care and comfort that death doula’s provide their patients; undoubtedly both doulas and patients benefit from kind attention. Also, the doula movement addresses a gross oversight in the current medical care delivery system which fails to meet the needs of ill patients who do not yet qualify for hospice or get the companionship and attention they need from their doctors or family members.
Elaine Mcardle has a new article in the Spring 2016 issue of UU World, the magazine of the Unitarian Universalist Association. In it, she profiles Barbara Coombs Lee, the president of Compassion & Choices, the nation’s largest aid in dying advocacy group. And she cites The Good Death and an interview that she and I did some weeks ago. You can get a print copy of the magazine here.
Kelsey Dallas interviewed me as part of her research for this long and well written piece for Deseret News on religion and aid in dying. You can read the entire article here. And here’s a clip:
“As faith leaders lend their voices to these legislative debates, they also explore and express how morality informs end-of-life care. Arguments for and against medically assisted suicide no longer center just on the ethics of suicide, but, instead, on how much pain a patient should be expected to endure before they look for a way out and how far God’s love reaches into the midst of suffering.
Advocates for end-of-life care without the assisted suicide option, such as the Roman Catholic Church, argue that while a terminally ill patient might feel like a financial and emotional burden, he or she remains precious in the eyes of God.
But people of faith who support medically assisted suicide, such as Will Irwin, a retired federal administrative appeals judge and member of the United Church of Christ, believe that God would support providing a way for people in pain to welcome death.”
I have a new piece at The Daily Beast that looks at the case of Jahi McMath, a young girl from California who was declared brain dead by an Oakland hospital after an extensive tonsillectomy. McMath’s family contested the declaration and ultimately moved the child to New Jersey, a state which allows exemptions from brain death for those kept on physiological support. It’s a heartbreaking and fascinating case and one that I write about in The Good Death. It’s also a chilling lesson on the conflicts that can arise between patients, hospitals and faith. You can read the article here.
My long time friend and fellow writing group member, Nathan Schneider, took the time to talk with me about The Good Death. I love this conversation because Nathan is so smart and because it gave me the chance to address the nuance and challenge of some of the issues we face as a population and a nation regarding end of life care. You can read the piece here. And an excerpt:
“That said, the country’s religious landscape is changing rapidly. So we have cultural, medical and legal institutions that once fit our predominantly Protestant faith—a fit that is no longer working for many who have other perspectives. There has always been dissent among members of the legacy denominations, of course. But as medicine has rapidly advanced—starting in the 1960s and ’70s, at the same time that new movements were changing the way women and minorities think about autonomy and rights—the courts and religion have been working to catch up. So that space between “traditional” frameworks of morality and new medical possibilities has posed ethical problems for patients. When can we turn off the respirator? What is “natural” death? Many patients struggle to know what decisions they should make, and they recognize that medical science doesn’t have all the answers. Faith can help them act on their own moral values. But when particular faith ideas are codified in medical practice or laws, it can impede patients from doing what they think is best.”
The Atlantic published an excerpt from The Good Death, a chapter on hospice care in prisons. You can read it here.
Thanks to Suzanne Koven at The Boston Globe for this lovely, well written piece about The Good Death:
“To be quite graphic,” Neumann said, “I’m talking about the puke and the feces and the dirty bedclothes and the bruising of the skin; that particular physical intimacy with someone you love, that proximity to imminent decline and death. Nothing had prepared me for that.”
You can read it here.
Thank you, Salon, for publishing this adaptation of a chapter of The Good Death. It, in part, addresses my relationship with Bill Peace, an anti-aid in dying activist and board member of Not Dead Yet. You can read the Salon piece here.
I was on the Joy Cardin show this morning. Her questions and insights made the show so informative and intelligent. You can listen here.
Thanks to Guernica for the chance to speak with Sheri Fink, a Pulitzer Prize-winning journalist and author of Five Days at Memorial: Life and Death in a Storm-Ravaged Hospital. We talked about disaster preparedness, impossible health care choices, and the notion of journalistic objectivity. I’ve pasted an excerpt below. You can read the entire piece here.
Ann Neumann: In Five Days at Memorial, you too track a decision-making process, one developed in the days of disaster and not set out beforehand—because Memorial had no appropriate plan in place. When comparing disaster triage and organ donation, you write, “Although no allocation method could ever enlist universal agreement, the process of devising a method, at least, can be made more just.” The great tragedy of Memorial is, of course, the number of lives lost. But the lack of an explicit triage plan to guide the staff seems to throw heightened doubt onto the decisions they made. Do you think that even the absence of a plan can create the impression of injustice and unethical behavior?
Sheri Fink: Yes, that’s right. If the staff and leadership at this hospital could have pointed to a plan and a process by which they made the decisions they did—whom to rescue first, and how to care for those patients who appeared to have little chance of surviving—it stands to reason that there would have been fewer questions and more trust after the disaster. And those plans and processes could have helped keep decisions in line with ethical principles and the best possible standards of care. It would also have lifted some of the decision-making burden off the shoulders of exhausted, scared, unprepared individuals. There’s also the issue of inclusiveness—for example, now some states and localities are bringing representatives with diverse perspectives into the disaster planning process for hospitals, because the question of who gets scarce medical resources during a disaster has a lot to do with values, not just medicine. On the other hand, some of the plans that have been drawn up for rationing scarce medical resources in a disaster have their own hazards. They can discourage flexibility, which is one of the key principles of disaster response. You need to be frequently re-assessing and re-matching resources and needs throughout a period of crisis. If you blindly follow a piece of paper that says take away the ventilators from everyone over age 65 in a mass emergency, say, and it turns out you actually can get enough ventilators and staff to care for everyone, it would be a tragedy not to change the plan. Also, let’s say that a reasonable goal in allocating resources in a disaster is to save the greatest number of lives, or greatest number of years of life. There are not really good data or studies showing how to direct resources to accomplish that.