Attention on Medical Overtreatment Raises Awareness on Advance Care Planning, Hospice and Palliative Care

Here is a link to a helpful document--a consumer's tool kit for health care advance planning put out by the commission on law and aging: http://www.abanet.org/aging/toolkit/

A lot of pages to download but well worth it.

Here is a link to a document from the CT Dept of Social Services that will guide you in how to fill one out: http://www.ct.gov/agingservices/lib/agingservices/pdf/advancedirectivesenglish.pdf

“Advance directives are important tools for providing care in keeping with patients’ wishes. For more patients to avail themselves of these valuable instruments, the health care system should ensure that providers have the time, space, and reimbursement to conduct the time-consuming discussions necessary to plan appropriately for the end of life. Data suggest that most elderly patients would welcome these discussions.” (NEJM, 2010;362(13):1211-1218, content.nejm.org/cgi/content/short/362/13/1211; MedPage Today, 3/31, www.medpagetoday.com/Geriatrics/GeneralGeriatrics/19329)

“A strong argument can certainly be made that advance care planning should be an ongoing process, revisited at regular intervals, because of the complexity of the issues, the natural tendency of patients to vacillate, and the fact that goals of care may change. Yet, even with regularly updated planning discussions, standard living wills will nevertheless fall short in guiding care, because the end of life as it unfolds will not correspond to the improbable scenario described in the living will. Advance care planning may be helpful to patients and families by improving the likelihood patients will receive palliative care earlier and undergo less futile care. But effective advance care documents must inform patients and families frankly and fully about the circumstances and treatment choices that they are likely to face at the end of life.” (Journal of Palliative Medicine, 2010;13(5), www.liebertonline.com/doi/abs/10.1089/jpm.2009.0311)

“Prepared Patient: Advance Directives – Caring for You & Your Family” encourages the preparation of advance directives for end-of-life care, and gives several links which aid persons in doing so. Newswise cites a 2009 survey of physicians which found that 90% consider a patient’s preferences as expressed in a living will when they are discussing healthcare recommendations to a family. (Newswise, 4/16, www.newswise.com/articles/prepared-patient-advance-directives)

“Legality and Ethics Can Create Misperceptions,” in the current Hospice Management Advisor, looks at how conflicting opinions between advance directives, healthcare proxies, and families can create complex scenarios at the end of life. Nancy M.P. King, JD, is a professor in the Social Sciences and Health Policy Department at Wake Forest University, and co-director of the WFU Center for Bioethics, Health and Society. King says that one common situation occurs when either the advance directive or the healthcare proxy, or both together, think that one action is the best, while someone in the family objects. team member may think “that the best way not to get sued is to follow the family members’ wishes.” Another may think that if the family wants the patient kept alive, that’s what should happen. According to King, there is “very little case law saying that somebody who fails to honor an advance directive and keeps the patient alive longer has actually done cognizable harm to a patient that can be effectuated through a lawsuit.” A team member, trying to avoid being sued, may choose care that conflicts with an advance directive, because “nobody’s ever going to bring that lawsuit, and they may not sue, because the patient was kept alive and because it’s very difficult to bring lawsuits like that.”King says that this is a bad decision. “This is . . . a situation where somebody is really expecting that it is really possible to keep everything quiet by doing something that’s morally wrong.” Situations like these may make it appear that law and ethics are not compatible but, she says, this isn’t the case. The advance directive should be honored, according to King. “The right way to proceed with a situation like that isn't to say, ‘Hey, law is on our side, as well as ethics,’ but to sit down with the family and really, again, take that initial time. One of the reasons why it’s easy to … try to take mental shortcuts and say there’s an incompatibility here is that the best way to address perceived incompatibilities like that is very time-consuming and involves some very difficult conversations.” (HNN 6/22/10)

Several articles in the current Hospice Management Advisor address the issue of patients with implantable cardioverter-defibrillators (ICDs). “Are You Talking to Patients About Deactivation of Their ICDs?” says that patients can die in a lot of pain if their ICDs are still functioning as they are dying. A recent study from the Hertzberg Palliative Care Institute at Mount Sinai School of Medicine found that 97% of hospices admit patients with ICDs. But only 20% of these hospices identify these patients on intake, and only 10% have policies regarding discussions of deactivation. Dr. Nathan Goldstein, lead author of the study, says, “There is a clear link between the identification of a patient with an ICD, a policy guiding discussions about deactivation, and a higher rate of deactivations. It makes sense that a hospice that has thought about the effects of an ICD's shock at the end of life is better equipped to initiate the conversation with patients and family members.” Goldstein thinks the patient is unlikely to initiate such a discussion, because they may not know that the device can be deactivated. Dr. Chuck Wellman, chief medical officer at Cleveland’s Hospice of the Western Reserve, says that more patients have pacemakers than ICDs, “but a pacemaker doesn’t deliver a high voltage shock that causes pain, so that device is not the burden that an ICD is.” Wellman also says, “It is difficult when the patient does not want the ICD deactivated and the family does. Family members suffer a great deal of stress and anxiety watching their family member suffer pain, so they are more likely to want the deactivation.” The role of the hospice staff, in his opinion, is “to provide information, moderate the discussion, and honor the patient’s wishes.” “How to Initiate a Difficult Conversation” says that the best time to discuss deactivation is when the device is implanted, but that it rarely happens. Once a hospice patient is admitted, the admitting nurse should get information about the manufacturer and type of device. (HNN 6/22/10)