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HOSPICE NEWS NETWORK
Recent News On End-of-Life Care
Volume 17, Number 21 May 28, 2013
A Service of State Hospice Organizations
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HOW SHOULD WE BE INFLUENCING END-OF-LIFE CARE CHOICES?
GeriPal recently featured five blog posts examining the way that end-of-life decisions are framed by clinicians, as well as the responsibility that professional caregivers have to frame issues around CPR and other forms of resuscitation. Over the course of the series, a clear theme emerges: The way that care teams present end-of-life options greatly impacts the choices that patients make.
In the first article of the week, Eric Widera writes, “We intuitively know that the words we choose when talking about whether or not to attempt cardiopulmonary resuscitation (CPR) may influence the decision of a surrogate.” Now, he explains, there is concrete data to back up this intuitive hunch. A recent study published by researchers are the University of Pittsburgh indicates that the words used in explaining end-of-life options to family members make a marked difference in what choices are made.
For example, the study found that describing the alternative to CPR as “Allow Natural Death” rather than “Do Not Resuscitate” significantly increased the likelihood that family members would choose this less intrusive option. Framing the choice as being a social norm - telling family members that most other family members were more likely to choose DNR - “also significantly decreased CPR choice.” If CPR was framed as the norm, 64% opted for it; but if not receiving CPR was presented as being normal, only 48% chose it. Interestingly, appealing to emotional attachment did not seem to have a major impact on CPR choices.
In a subsequent article written for the GeriPal blog, Alex Smith details how changing default conditions can dramatically impact end-of-life choices. Smith notes, “Most current advance directive forms and the POLST have no default.” But what if these forms defaulted to comfort care or life-extension? A study recently published in Health Affairs indicates that having either comfort care or life-extension as the default choice dramatically increases the likelihood that decision-makers will choose the defaulted option. The study found that when comfort care was the default, nearly 80% opted for the default; with the standard form (without a default), 61% chose comfort care; and, with a form defaulted to life-extension care, only 43% of participants opted to buck the default and forgo CPR. Simply put, defaults matter. In light of this data: How should we - through defaults or lack thereof - be influencing patients’ choices about end-of-life resuscitation?
The third article of the week examines the role of clinicians as “choice architects,” whose responsibility it is to nudge patients to an informed decision about CPR. Eric Widera explains that because clinicians are, through their action or inaction, in the position of influencing patient choices, they have a responsibility to prepare an environment where individuals can make healthy, well-informed choices. He writes, “The goal as the [choice] architect is to create an environment that counteracts cognitive biases and inaccurate perceptions which currently exist in our patients and which hamper informed, rational decision-making that is consistent with our patients’ goals.” As a means to this end, Widera examines the role of decision-making videos developed to help inform patients about CPR choices.
Continuing this examination of framing choices, Alex Smith explores our use of the word “natural” and how our word choice may sometimes obscure the reality of death. “What is a natural death, anyway? ... Death in nature is often violent, brutal, and messy.” Nevertheless, he says that we should acknowledge that just because something is “natural” does not mean that we will necessarily prefer it. Smith confesses that he often says to patients something like, “‘This is about how your father is going to spend the remainder of his time. I suggest we don't prolong his dying, and let nature take its course.’ It helps with framing.”
Finally, in the last post of the week, Josh Lakin, MD, and Palliative Care Fellow at UCSF, asks why CPR is treated so differently from other procedures. Is the special status of CPR simply a cultural norm in the medical community? “Why do we feel the imperative to discuss and/or disclose this procedure with those who will not benefit from it...?”
Each article invites feedback from readers and there are numerous comments online at the bottom of each article at GeriPal. (GeriPal, 5/20, www.geripal.org/2013/05/its-all-in-framing-how-to-influence.html; 5/21, www.geripal.org/2013/05/changing-default-code-stus-to-dnr-for.html; 5/22, www.geripal.org/2013/05/the-clinician-as-choice-architect.html; 5/23, www.geripal.org/2013/05/what-is-natural-death-anyway.html; 5/24, www.geripal.org/2013/05/discussing-cpr-what-makes-it-so.html; see also a related article in The New York Times regarding the wording surrounding end-of-life resuscitation: newoldage.blogs.nytimes.com/2013/05/22/dnr-by-another-name/)
IS HOSPICE HELD TO A DIFFERENT STANDARD THAN OTHER MEDICARE PROVIDERS?
In an article for Health Affairs, Donald Taylor writes that hospice has long been held to a different standard that all other Medicare programs. Not only must hospice care be cost-effective and of benefit to patients, it must also prove that it is reducing overall costs for the system. Taylor argues, “The underlying hospice regulations need to be updated, as they are essentially unchanged since 1982.”
In the early days of hospice care, end-of-life programs were largely cancer-centric, says Taylor, and patients tended to die faster than they do today. With advances in hospice care practice and evolving medical technologies, patients are living longer and staying healthier at the end-of-life. Ironically, this is leading to a broad questioning of longer hospice stays, says Taylor, and asking if it is cost-effective to have patients live so long in this type of care.
Taylor does not imply that hospice should not be held accountable for being cost-effective, and of a benefit both to individual patients and the sustainability of the medical system as a whole. On the contrary, he asks whether all Medicare programs - not just hospice - should be held accountable for performance and cost management. “All of the therapies available to chronically ill Medicare beneficiaries with life limiting illnesses should be subjected to similar scrutiny, not just hospice. Does it extend life? Does it improve quality of life? How much does it cost? Is it worth it?” (Health Affairs, 5/16, healthaffairs.org/blog/2013/05/16/saving-money-while-providing-benefit-in-medicare-a-standard-applied-only-to-hospice/)
HOSPICE AND END-OF-LIFE NOTES
* An article published in The Saint Louis Post-Dispatch examines the low representation of African Americans in hospice. Only 8.5% of hospice patients are black, while 82.8% are white. The article shares successful efforts of hospices to reach out to African Americans. (The Saint Louis Post-Dispatch, 5/16, www.stltoday.com/lifestyles/health-med-fit/medical/bridging-the-racial-divide-in-how-we-die/article_775a8548-06a0-5671-8698-9013376cb1f5.html)
* What happens when a patient does not want to know the truth about their illness? In an article written for The Los Angeles Times, Doctor Susan Partovi shares about a case in which she and her team withheld a cancer diagnosis from a patient. Is it ethical to withhold diagnostic information if the patient and his family don’t want to know it? (The Los Angeles Times, 5/16, www.latimes.com/news/opinion/commentary/la-oe-partovi-doctor-patient-20130516,0,6489259.story)
* Judy MacDonald gave a TED talk examining how best to prepare for the end of life. Entitled “Prepare for a Good End of Life,” MacDonald lays out a variety of steps that anyone can take to get ready for the last days of life. The speech is available online at the second link below. (AARP, 5/22, blog.aarp.org/2013/05/22/end-of-life-plan-caring-for-dying-family-ted-conference-aging-well/; http://www.ted.com/talks/judy_macdonald_johnston_prepare_for_a_good_end_of_life.html)
* Will they pull the plug on you? It may depend on the culture of the ICU where you find yourself in critical condition. Researchers say, “The ICU to which a given patient is admitted strongly influences his or her odds of having [the plug pulled], regardless of personal or clinical characteristics.” (NBCNews, 5/21, vitals.nbcnews.com/_news/2013/05/21/18382297-pulling-the-plug-icu-culture-key-to-life-or-death-decision?lite&ocid=msnhp&pos=1)
* Researchers in Canada find that although “many elderly patients at high risk of dying and their family members have expressed preference for medical treatments at the end of life,” communication with health care workers and documentation of their preferences “remains inadequate.” The authors urge that action be taken to reduce “this significant medical error of omission.” (JAMA, 4/1, http://archinte.jamanetwork.com/article.aspx?articleid=1673746)
* Farm and Dairy highlights end-of-life care, noting that there is a “compelling case that end-of-life care issues need to become an integral part of the public health agenda.” (Farm and Dairy, 5/22, www.farmanddairy.com/news/advance-directives-manage-care-issues-reduce-end-of-life-medical-costs/54471.html)
PALLIATIVE CARE NOTES
* Fentanyl sublingual spray is shown to improve pain management for patients with cancer, according to a study presented at the Oncology Nursing Society Annual Congress. The most common adverse effect was nausea. (Helio, 5/21, www.healio.com/hematology-oncology/practice-management/news/online/%7B25A3D210-14DE-499C-8FF6-06B3B9944899%7D/Fentanyl-sublingual-spray-improved-pain-management-in-cancer-patients)
* Among patients on ventilators, suffering from respiratory failure in the ICU, hearing their favorite music can make a big difference. A study published online in the Journal of the American Medical Association indicates that music intervention can lower anxiety and reduce the need for sedation in the ICU. (Nurse.com, 5/20, news.nurse.com/article/20130520/NATIONAL02/105270014/-1/frontpage)
* Palliative radiotherapy improves quality of life in elderly patients with bone metastases. A recent trial finds that “palliative radiotherapy should be a recommended treatment course” for these elderly patients. (CancerNetwork, 5/20, www.cancernetwork.com/bone-metastases/content/article/10165/2143170)
* A study finds that Hispanic Latin American families often take a more directive role in the health decisions of their family members. The study, conducted in the US and Latin America, found that “Hispanic Latin American caregivers more frequently preferred patients to assume a passive decisional role.” (Sage, 5/10, pmj.sagepub.com/content/early/2013/05/10/0269216313486953.abstract?papetoc)
* Pulitzer Prize-winning columnist Ellen Goodman encourages end-of-life conversations. “We still engage in a kind of conspiracy of silence and denial,” she said. “There is often the same denial between doctors, providers and patients, and often the same lack of communications.” (Winston-Salem Journal, 5/25, www.journalnow.com/news/local/article_ae39615c-c420-11e2-9356-001a4bcf6878.html)
* For those seeking to serve as chaplains in palliative care settings, specialized training in the field is becoming increasingly crucial. The Board of Chaplaincy Certification, Inc., offers specialty certification in spiritual care for people receiving palliative care. (BCCI, bcci.professionalchaplains.org/content.asp?contentid=45)
POLICY NOTES
* Governor Peter Shumlin (D) of Vermont signed the physician-assisted suicide bill, legalizing the prescription of lethal drugs to terminally ill patients in Vermont. Vermont is the fourth US state to approve the practice. (Jurist, 5/21, jurist.org/paperchase/2013/05/vermont-governor-signs-physician-assisted-suicide-bill.php)
* Learn about the basic implications of the new physician-assisted suicide bill just passed by the state of Vermont: “Five things to know about Vermont’s assisted suicide law.” (Brattleboro Reformer, 5/22, www.reformer.com/localnews/ci_23295522/5-things-know-about-vt-rsquo-s-assisted)
* Bishop Salvatore R. Matano of the Diocese of Burlington decries the new law allowing physicians to prescribe life-ending medications to terminally ill patients. The bishop describes the bill’s passage as, “a tragic moment in the rich history of our state.” (Catholic San Francisco, 5/22, www.catholic-sf.org/ns.php?newsid=1&id=61445)
* Cardinal O’Malley of Boston warns of “an alarming trend nationwide” as physician-assisted suicide becomes legal in a fourth state. He calls for “all people of good will to fight the future passage of such laws.” (Sacramento Bee, 5/21, www.sacbee.com/2013/05/21/5436687/cardinal-omalley-new-vermont-assisted.html)
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