___________________________________________________________________________ IN SPITE OF ADVANCE CARE PLANNING, EXPECT THE UNEXPECTED An article in a recent issue of The New York Times demonstrates the limits of end-of-life planning. The article in The New York Times tells the story of Peggy Battin and her husband, Brooke Hopkins. Hopkins’ catastrophic bicycle accident in 2008 thrust both of them into an intensely personal struggle with issues that they felt they had planned for and resolved. The deeply personal story also exemplifies the complicated nature of honoring a patient’s wishes.
Things might have ended very differently if Peggy had been present on the bike ride. She knew that Brooke had recently updated his living will, in which he specified his desires in case he suffered an illness or injury that left him dying or in a vegetative state. His wishes were clear: He wanted no procedures that would “unnaturally prolong the moment of [his] death, [or]... unnaturally postpone or prolong the dying process.” But Peggy wasn’t there, and by the time she got word of her husband’s accident and arrived at the hospital, she found that Brooke was attached to a ventilator. “By the time Peggy arrived and saw her husband ensnared in the life-sustaining machinery he hoped to avoid, decisions about intervention already had been made.”
The irony of this story is not lost on Battin. Her entire life’s work was studying issues around death, dying and dignity. She had written “‘wheelbarrows full’ of books and articles championing self-determination in death and dying. And now here was her husband, a plugged-in mannequin in the I.C.U., the very embodiment of a right-to-die case.”
As an international leader in bioethics, Peggy extensively explored the debates around physician-assisted suicide. She wasn’t afraid of words like “euthanasia,” and she supported the right of terminally ill individuals to take their own lives if they so chose. She was also an advocate for groups like Compassion and Choices, that push for laws allowing doctors to hasten the death of the terminally ill - laws that have now come to fruition in Oregon, Washington, Montana and Vermont. Having watched her mother’s suffering from terminal liver cancer, Battin believed strongly in the right of the individual to autonomously decide when enough is enough.
Brooke’s accident in no way changed these fundamental convictions. Nevertheless, the reality that her beloved husband was now facing these end-of-life choices was deeply unsettling. “It’s not just about terminally ill people in general in a kind of abstract way now,” she wrote following the accident. “It’s also about my husband, Brooke. I still love him, that’s a simple fact. What if he wanted to die? Can I imagine standing by while his ventilator was switched off?” Brooke receives the best care possible. At age 72, Peggy still works full time at the university, allowing Brooke access to the excellent health insurance that job provides, in addition to the contribution that Medicare makes. Hopkins is attended by a dozen health care workers who ensure that he is never left alone. Despite the double-coverage insurance, the couple is paying a huge sum for this level of care, including nearly $250,000 a year to the caregivers. It’s not clear how much longer they will be able to afford this level of care.
Even with the best care money can buy, life tied to a ventilator and with a paralyzed body is hard. Brooke struggles with ongoing depression, and with the fact that he is forced to be so dependent on others. As a man who loved to eat before the accident, it is a bitter pill that his feeding tube prevents him from tasting the foods he once enjoyed. Yet another of life’s simple pleasures, robbed by necessities of bare survival.
The slow drip of suffering and diminishment continues to take its toll. As time goes on, Brooke is losing the deep will to live that he experienced in the period immediately following his accident. After a trip to the emergency room, Brooke commented, “I don’t want to go to the hospital ever again... If the choice is going to the hospital or dying, I’ll take the dying.”
Yet Peggy struggles with uncertainty. Is that really what Brooke wants? There have been times that she has sought medical intervention for him, and he has later told her that she made the right decision. Should she take his weary statements at face value, or intervene in emergency situations to extend his life? Peggy says she knows Brooke well enough to see through his overly dramatic statements, but she worries that his caregivers might take them at face value, and allow him to die. “Suzy Quirantes, the senior member of the caregiving team, a trained respiratory therapist who has been with Brooke since the day he came home in 2010, sees it a bit differently.” There have been times, she says, when Peggy has simply been unable to hear Brooke’s sincere expressions of desire to die. Rather than hearing and accepting his readiness for death, Peggy pushes back, and Brooke relents. According to Quirates, Brooke would rather see Peggy be happy than have his wishes fulfilled.
Peggy acknowledges that her own scholarly thinking has subtlety shifted because of her experiences following Brooke’s accident. While she still believes that people have the right to choose when and how they die, she “now better understands how vast and terrifying that choice really is.” “What has changed,” she says, “is my sense of how extremely complex, how extremely textured, any particular case is.” What terrifies Battin the most is that she might misunderstand Brooke’s wishes in a way that cannot be undone. “The worst outcome, to her, would be to think that this time he really does want to die and then to feel as if she might have been wrong.”
Though the assisted-suicide debate often revolves around questions of whether vulnerable individuals might be pressured to die, Peggy’s own experience leads her to believe that an even greater risk might be the opposite - the subtle, coercive influence of a loved one who pressures a patient to cling to life, even when they are ready to die. In the end, the autonomy of the individual is always undercut by our bonds with family, friends and other loved ones. Following the release of The New York Times article, Battin was interviewed by National Public Radio. In the interview, she shares her experience as a wife, a philosopher and a public thinker who has spent many years writing about end-of-life issues. The NYT article was also favorably mentioned in Second Opinion, a pediatric health care blog. There, the author concludes that “What we need... is a recognition that the end of life cannot be simplified and that there are no right answers.” (The New York Times, 7/21, www.nytimes.com/2013/07/21/magazine/a-life-or-death-situation.html?pagewanted=10&_r=3&ref=magazine; NPR, 7/25, www.npr.org/2013/07/25/205455599/for-bioethicist-with-ailing-spouse-end-of-life-issues-hit-home; Second Opinion, 7/21, pediatrichealthcare.blogspot.com/2013/07/approaching-death-with-humility-and-care.html)
CAN WE TALK ABOUT DEATH LIKE GROWNUPS?
In an editorial piece published in The Washington Post, Ezra Klein laments the state of end-of-life policy debate in the United States. He explains that, despite the distorting rhetoric around what Sarah Palin once referred to as “death panels,” the legislation in question was simply about compassion. If anything, the portion of the 2009 health care legislation that came under attack did not go far enough.
Though this portion of the health care bill was eventually dropped for political reasons, Rep. Earl Blumenauer (D-Oregon) continues to push for a bill that would reimburse doctors for meeting with patients to speak about end-of-life care. Klein points out, “This isn’t about saving money. It’s about compassion.” With the amount of futile care that goes on in the United States each year, advancing humane and compassionate end-of-life options for all patients would be a great step forward.
In a related article published in The New York Times, Paula Span observes that simple steps can be taken to ensure that all patients have an opportunity to consider and record their end-of-life preferences, so that caregivers know how to provide the best treatment. Klein agrees, suggesting that one rational first step could be to require that all Medicare recipients fill out an advance directive. “If you want, you can have a consultation with a doctor about your options. Otherwise, you just make the call on your own.” In a world where “seniors living out their final days get tortured by the medical system because everyone involved [is] too afraid to talk about death,” Klein says, it’s time to grow up. (The Washington Post, 7/22, www.washingtonpost.com/blogs/wonkblog/wp/2013/07/22/can-we-please-talk-about-death-like-adults/; The New York Times, 7/25, newoldage.blogs.nytimes.com/2013/07/25/a-novel-way-to-document-end-of-life-preferences/?_r=0; see also: Politico, 7/21, www.politico.com/story/2013/07/the-death-panel-bill-lives-94536.html?hp=f2; TIME, 7/25, nation.time.com/2013/07/25/the-health-care-proposal-that-spawned-the-death-panels-lie-is-back/)
HOSPICE NOTES * Hernando-Pasco Hospice has agreed to pay $1 million to resolve allegations that it submitted false claims to Medicare and “provided illegal kickbacks by giving free services to skilled nursing facilities in exchange for patient referrals,” according to the US Attorney’s office in Tampa, Florida. The non-profit hospice was “accused by staff of encouraging the falsification of records to generate longer stays and... higher billings.” “Despite the settlement, the U.S. Attorney's Office said the claims against the hospice were allegations only and there was no determination of liability.” (Sun Coast News, 7/23, http://suncoastnews.com/hospice-agrees-to-settle-false-claims-allegation-20130723/; Nonprofit Quarterly, 7/22, www.nonprofitquarterly.org/policysocial-context/22642-nonprofit-hospice-settles-whistleblower-suit-for-1-million.html?utm_campaign=July%2023rd%20Newswire&utm_medium=email&utm_source=newsletter&utm_content=Nonprofit%20Hospice%20Settles%20Whistleblower%20Suit%20for%20$1%20Million)
* The Office of Inspector General (OIG) is providing an online self-disclosure form for “providers who wish to voluntarily disclose self-discovered evidence of potential fraud.” The notice explains, “Self-disclosure gives providers the opportunity to avoid the costs and disruptions associated with a Government-directed investigation and civil or administrative litigation.” (OIG, 4/17, oig.hhs.gov/compliance/self-disclosure-info/index.asp)
* Hospice? There’s an app for that. Hospice By The Bay has released a new mobile app for physicians. The online information provided by the app gives doctors the criteria for hospice eligibility, and more. (Hospice By The Bay, 6/8, www.hospicebythebay.org/index.php/pr-jun-13-app) * Though hospice organizations generally oppose physician-assisted suicide, a study from Oregon State University finds that 85% to 95% of those who take their own life also use hospice services. Oregon State University researchers found that reaction to physician-assisted suicide varies among hospice organizations and professionals. (Muck Rack, 7/22, muckrack.com/link/JpTw/dilemma-for-hospice-workers-physician-assisted-suicide)
END-OF-LIFE NOTES * “Let’s have dinner and talk about death!” This is the invitation from the Elisabeth Kübler-Ross Foundation, which is encouraging people around the world to host dinners where friends can get together and talk about end-of-life issues. For more information about this program, and how to host your own dinner, check out: www.deathoverdinner.org/invitation/ * A Chicago “boot camp” is helping medical interns rehearse for the end-of-life issues they can expect to face in their work in a hospital setting. The program uses robots and actors to simulate both intense medical situations and end-of-life conversations with “patients” who have just received a terminal diagnosis. (The New York Times, 7/15, www.nytimes.com/2013/07/15/us/chicagos-intern-boot-camp-is-a-rehearsal-for-life-or-death-medical-issues.html?_r=0)
* In an article published by The Journal of the American Medical Association, Naomi Simon, MD, examines the care necessary to treat complicated grief in the death of loved ones. The researcher concluded that individuals with complicated grief - grief that is amplified by additional life stressors - “have a greater risk of adverse health outcomes [and] should be diagnosed and assessed for suicide risk... depression and posttraumatic stress disorder.” (JAMA, 7/24, jama.jamanetwork.com/article.aspx?articleid=1719754)
* The Hastings Center is accepting nominations for the Cunniff-Dixon Physician Awards, a national prize recognizing excellent in care near the end of life. More information about the award is online. (Hastings Center; www.thehastingscenter.org/PhysicianAwards/?utm_source=constantcontact&utm_medium=email&utm_campaign=mktg20130723 0
* DNAinfo Chicago features a story about a 103-year-old hospice patient who took a trip to Chicago to fulfill her last wish: A window-shopping spree and a meeting with Mayor Rahm Emanuel. (DNAinfo, 7/19, www.dnainfo.com/chicago/20130719/loop/103-year-old-downstater-completes-her-bucket-list-by-shopping-on-state-st)
* A free webinar, entitled “Non-Pharmacologic Approaches to Caring for Veterans with PTSD at the End of Life,” is being offered Thursday, August 1, 2013, from 2:00-3:30pm ET. To register online, or for more information, please visit: www.wehonorveterans.org/i4a/pages/index.cfm?pageid=3357
PALLIATIVE CARE AND POLICY NOTES
* Outpatient palliative care is seeing significant growth in the United States, following the growth of hospital-based palliative care. “We are now seeing a groundswell of palliative care activity in the outpatient setting,” writes Christine S. Ritchie, MD, MSPH, Associate Editor for The Journal of Palliative Medicine. “Certainly,” says the article, “24/7 availability of personnel to provide guidance during a period of crisis would also increase the likelihood of dying at home.”In a related report, a recently released analysis from the Center to Advance Palliative Care has found that the prevalence of palliative care programs is nearing a saturation point. Eighty-four percent of US hospitals are expected to provide such care by 2014.(The Journal of Palliative Medicine, 7/22, online.liebertpub.com/doi/abs/10.1089/jpm.2013.9493)
* The Journal of Palliative Medicine has published a special report. The goal of the report is “to describe the top priorities in research methods for the field of geriatric palliative medicine...” (The Journal of Palliative Medicine, 6/18, online.liebertpub.com/doi/abs/10.1089/jpm.2013.9492) * In a paper recently published by Oregon State University (OSU), researchers outline the contours of the assisted-suicide debate. The authors found three parties at work in the debate, each with significant interests in the outcome. First, the authors note arguments regarding the legitimacy of expanded self-determination on the part of terminally ill patients. Second, questions have been posed about the compatibility with patient requests and clinical codes of ethics. Finally, there has been discussion of the role that the state should play, both in terms of public policy and professional accountability. (Oregon State University, ir.library.oregonstate.edu/xmlui/handle/1957/40840)
Thanks to Don Pendley for contributions. Glatfelter Insurance Group is the national sponsor of Hospice News Network for 2013. Glatfelter Insurance Group provides property and liability insurance for hospices and home healthcare agencies through their Hospice and Community Care Insurance Services division. Ask your insurance agent to visit their website at www.hccis.com.
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