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Beyond Cure: The Chaplain's Role in Helping Patients Navigate the End-of-life Maze

by Rozann Allyn Shackleton MDiv MA BCC
APC™ Forum, February 2017, Vol. 19 No. 1
 
Who is responsible for teaching people how to die?
 
This provocative question was posed by Richard Payne MD, professor of medicine and divinity at Duke Divinity School, who keynoted the John Suydam Kuhlthau Bioethics Conference held recently in New Brunswick, NJ.
 
Dr. Payne noted the shift from community death (at home surrounded by family) to medicalized death (often hooked up to numerous machines in hospital ICUs). Further he described this medicalization as often reducing suffering to pain and reducing care to pain management.
 
He referenced a 1999 study (Steinhauser 2000, 2481) in which seriously ill patients ranked the following major attributes as most important at the end of life:
·         Freedom from pain
·         At peace with God
·         Presence of family
·         Mentally aware
·         Treatment choices followed
·         Finances in order
·         Feel life was meaningful
·         Resolve conflicts
·         Die at home  
 
In order to achieve these attributes/goals, those who accompany individuals through the dying process need to listen to their stories. It is important not only to learn what is hoped for but also what hope means to each individual in order to help him/her to reframe that hope as the end of life nears.
 
Though not specifically charged with teaching people how to die, chaplains often find themselves in the role of educators with respect to end-of-life choices, which contribute to patients’ abilities to realize their goals. These range from understanding the differences between palliative and hospice care as well as the parameters of a host of advance directives (AD), e.g., durable power of attorney for health care (DPOAHC), living will, five wishes. States have differing laws with respect to these, and some have enacted legislation defining who may serve as the health care decision maker in the absence of a DPOAHC agent.
 
Individuals often do not understand the difference from patient-initiated advance directives and medical orders that affect treatment in critical situations, e.g., do not resuscitate (DNR), allow natural death (AND). Again, terminology may vary from state to state and even from institution to institution. A major drawback with many of these orders is that they are site specific, a problem that has been resolved by “traveling DNR” policy.  
 
One of the most portable and all encompassing medical orders was initiated by a group of medical ethicists in Oregon, who created Physician Orders for Life-Sustaining Treatment (POLST) in part to assure that individuals’ desires for treatment in end-of-life situations would be honored. In 2004, representatives from Oregon, plus five other states that had been working on similar programs, convened to establish a national standard. The National POLST Paradigm Task Force (NPPTF) as it is known today continues to serve as a resource.
 
As of October 2016, programs in 21 states plus the LaCrosse region of Wisconsin were endorsed as meeting NPPTF standards. An additional 25 states were recognized as being in the developing stage, i.e., working toward implementation of the POLST Paradigm Program statewide. Three states—Maryland, Massachusetts, and Vermont—currently are not endorsed by NPPTF. The final three—Alabama, Arkansas, South Dakota—and Washington DC have no POLST program. A detailed map showing status, program contact, website and pertinent legislative information for each state is available at www.polst.org.
 
As the name implies, POLST is intended as advance care planning (ACP) for the seriously ill, i.e., those for whom death within a year’s time would not be unexpected. It is a medical order, which describes specific treatment choices, and which must be completed by a physician or (in some states) another designated health care professional. For example, in my home state of New Jersey, the P stands for practitioner, which includes advance practice nurse (APN). The NJ form addresses the level of medical intervention if the person is breathing and/or has a pulse, with specific orders for artificially administered fluids and nutrition, cardiopulmonary resuscitation (CPR) and airway management. The original form may travel with the patient between home, hospital and extended care facility.
 
In contrast, a patient-initiated AD allows the individual to document his/her general wishes for an unspecified future medical crisis. All adults are encouraged to complete such a form, both to name an agent to act in the event of a loss of decision making capacity and to indicate desired or undesired treatment(s). Thus, POLST and AD act in concert.
 
Clearly, completion of any of these forms pertaining to authorization for medical care requires conversation among all persons involved. Though it is generally agreed that discussions about ACP are ideally initiated by physicians, the reality is that time as well as the comfort level of physicians usually precludes this.
 
The Patient Self Determination Act (PSDA) of 1990 amended titles XVIII and XIX of the Social Security Act required providers of services, including health maintenance organizations (HMOs), operating under Medicare and Medicaid programs to comply with the following:
·  Inquire whether a patient has executed an AD.
·  Ensure that a patient’s legally valid AD and documented medical care wishes are implemented to the extent permitted by state law.
·  Provide educational programs for staff, patients and community on ethical issues concerning patient self-determination and ADs.
 
Chaplains often are charged with these duties, which may include assistance in completing documents should patients wish to do so. Not only is this an opportunity to acquaint a patient with the many facets of ACP, it may open the door to a more extensive conversation, which assists the patient in articulating what gives his/her life meaning as well as short- and long-term life goals. If the patient is newly diagnosed with a chronic, life-threatening or terminal disease, it also may be the first step toward the decisions addressed by POLST.
 
Tangential to such one-to-one conversations, chaplains regularly are called on to present programs on ADs. Including the tools for ACP, along with recommendations on how to initiate discussion with physicians, is vital to this educational endeavor. First and foremost, chaplains need to educate themselves regarding the specifics of ACP available in their home states. Equally important, they need to complete their own ADs.
 
Obviously, there is no blueprint, no-one-size-fits-all design for how to die. As patients—along with family members and friends—navigate the medical maze that often is inherent in the process of dying, chaplains are best equipped to light the way toward each person’s individual goal.
 
Reference
Steinhauser, Karen E., Nicholas A. Christakis, Elizabeth C. Clipp, Maya McNeilly, Lauren McIntyre, James A. Tulsky. 2000. “”Factors considered important at the end of life by patients, family, physicians and other care providers.” JAMA 284(19): 2476-82.
 
Resource note:
A Clergy Guide to End-of-life Issues, authored by Martha R. Jacobs DMin BCC, provides the chaplain with talking points in work with clergy and congregations. Though she writes from a Christian viewpoint, the concepts presented have wide application. (Cleveland, OH: The Pilgrim Press, 2010) 
 
The following also may help to expand the chaplain’s knowledge and expertise regarding end-of-life care
Beauchamp, Tom L. and James F. Childress. 2013. Principles of Biomedical Ethics Seventh Edition. New York: Oxford University Press.
Byock, Ira. 2012. The Best Care Possible. New York: Penguin.
Gawande, Atul. 2014. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books.
Nuland, Sherwin B. 1993. How We Die: Reflections on Life’s Final Chapter. Alfred A. Knopf, Inc.

 
Rozann Allyn Shackleton MDiv MA BCC (retired) currently edits The ChaplainWright (www.thechaplainwright.net), a blog dedicated to writing as a way of healing. She also serves on the editorial board of the Journal of Health Care Chaplaincy.


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