MID-ATLANTIC ETHICS COMMITTEE NEWSLETTER

A Newsletter for Ethics Committee Members in Maryland, The District of Columbia and Virginia Published by the Law & Health Care Program, University of Maryland Francis King Carey School of Law and the Maryland Health Care Ethics Committee Network Fall 2013

Inside this issue . . . ADVANCE DIRECTIVES, AUTONOMY, & DISABILITY Advance Directives, Autonomy, & Disability...... 1 Brooke Hopkins was emblematic of the people completing advance directives type of person who completes an advance and holding clinicians accountable for directive. A college English professor, honoring those directives. Disability Bioethics Loses A he was highly educated, financially rights advocates tell stories of how Founding Father...... 4 secure, and married to Peggy Battin, a disability stigma and prejudice threaten bioethicist whose lifework focused on the lives of people who are not terminally Bioethics, Wisdom, and the aid-in-dying advocacy. Most individuals ill but are considered by others to End-of-Life Conversation...... 5 who complete an advance directive do be “better off dead.” They are not as so to put limits on interventions that may confident that advance directives are in be used to prolong their life if they are Institute of Medicine Seeks their best interests. Brooke’s story spans in a terminal or end-stage condition or Public comment on End-of-Life both sides of the issue. permanently unconscious and unable Issues...... 6 For the last five years of his life, to make decisions for themselves. Brooke (who died on his own terms ten Yet, misperceptions abound regarding days after the Henig article was published Case Presentation...... 7 when an advance directive is in effect, online) ambulated in a wheelchair and particularly when individuals are relied on others to groom and bathe and Calendar of Events...... 13 stabilized but reliant on life-supportive transfer him. He couldn’t swallow but technology. For the last five years of his appreciated the look, smell, and taste of life, Brooke used various life-prolonging food and the pleasure of shared company interventions—a ventilator, external during a meal. He enjoyed teaching oxygen, cardiac and diaphragmatic adult-education literature classes and The Mid-Atlantic Ethics Committee pacemakers, and feedings through a having long conversations with family Newsletter is a publication of the gastrostomy tube—after a bike crash in and friends. While he had bouts of Maryland Health Care Ethics 2008 broke his neck and paralyzed him pneumonia and other health crises after Committee Network, an initiative from the shoulders down. becoming paralyzed, he survived these of the University of Maryland Brooke’s story, recently featured in episodes with expert medical intervention Francis King Carey School of Law’s a New York Times Magazine article and the love and support of Peggy Law & Health Care Program. The by Robin Henig (July 17, 2013), raises and his circle of friends, family, and Newsletter combines educational important questions about how advance caregivers. Yet, consider the language articles with timely information directives are understood and interpreted. in the Henig article, describing the about bioethics activities. Each issue Health care professionals working in immediate aftermath of Brooke’s bike includes a feature article, a Calendar long term care and acute care settings crash: of upcoming events, and a case tell stories of dying patients whose If Peggy had been there and known presentation and commentary by local end-of-life wishes or best interests the extent of Brooke’s injury, she experts in bioethics, law, medicine, are ignored by family members or might have urged the rescuers not to nursing, or related disciplines. clinicians who insist on using life- revive him. Brooke updated a living Diane E. Hoffmann, JD, MS prolonging interventions that extend will the previous year, specifying that Editor the dying process and cause more harm than good. They advocate for more Cont. on page 2 © 2013 University of Maryland Francis King Carey School of Law Advance Directives The Mid-Atlantic Ethics Cont. from page 1 Committee Newsletter is published three times per year by should he suffer a grievous illness come off his life support machines. the Maryland Health Care Ethics or injury leading to a terminal He dictated a “Final Letter” to his Committee Network condition or vegetative state, he family clearly stating his wishes. Law & Health Care Program wanted no procedures done that Shortly after that, he developed a University of Maryland “would serve only to unnaturally pleural effusion (fluid in the lungs) Francis King Carey School of Law prolong the moment of my death that made his breathing difficult, even 500 West Baltimore Street and to unnaturally postpone or with the ventilator support. He became Baltimore, MD 21201 prolong the dying process.” … By delirious. Peggy opted to ignore 410-706-7191 the time Peggy arrived and saw Brooke’s letter so that he could be Diane E. Hoffmann, JD, MS, Editor her husband ensnared in the life- treated in the hospital. She reasoned Anita J. Tarzian, PhD, RN, sustaining machinery he hoped to that allowing him to die then, in that Co-Editor avoid, decisions about intervention way, didn’t feel right, that Brooke Contributing Editors: already had been made. (Henig, July “… had always spoken of a ‘generous Joseph A. Carrese, MD, MPH 17, 2013) death’ for which he was alert, calm, Associate Professor of Medicine Immediately after his injury, Brooke present and surrounded by people he Johns Hopkins University was not in any of the conditions loved.” In the end, about a full year Brian H. Childs, PhD stipulated in his living will. Is later, his death was just that. Director, Ethics & Organizational Henig’s portrayal a reporter’s fluke, Bill figures that many people in Development, Shore Health Systems or a reflection of a more widely held situations like Brooke’s (particularly Evan DeRenzo, PhD misunderstanding of when a person’s those who don’t have Brooke’s level Ethics Consultant living will actually goes into effect? of education, financial stability, or Center for Ethics Anthropologist and disability rights social support) don’t fare as well as Washington Hospital Center advocate Bill Peace attributes this Brooke, who had Peggy in his corner, Edmund G. Howe, MD, JD to a widespread disability bias that trying her best to let him die on his Professor of Psychiatry, threatens the lives of people with own terms. Bill writes: U.S.U.H.S. Department of disability. Bill wrote on his blog: “… [T]he fact is nationwide Psychiatry The descriptions of Hopkins resources for people with a disability Laurie Lyckholm, MD body are deeply offensive. The not are grossly inadequate. Talk about Asstistant Professor of Internal so subtle sub text is that life with patient centered care and autonomy Medicine and Professor of a disability, especially for a vent do not mean much when you are a Bioethics and Humanities, dependent quad, is filled with pain young man facing life in a nursing Virginia Commonwealth and suffering. Such a life is terrible home. Suicidal thoughts … are a School of Medicine for Hopkins and by extension his logical reaction to an impossible Jack Schwartz, JD wife. This point is made with the situation.” Adjunct Faculty subtlety of a brick thrown through Bill, a paraplegic (he prefers the University of Maryland a plate glass window. Prior to his term “cripple” as more honest), Francis King Carey School of injury Henig makes it clear that has had many experiences on the Law Hopkins was a virile man who receiving end of disability bias. He Henry Silverman, MD, MA traveled the world. He was a larger wrote about one such experience in Professor of Medicine than life figure and to be rendered The Hastings Center Report last year. University of Maryland a quadriplegic is a fate worse than After developing his first serious Comments to: death and his only saving grace is wound since he was paralyzed over 30 [email protected] his powerful intellect. (Peace, July years ago, a hospitalist he had never 17, 2013) met explained to him, at two in the Both Bill and Peggy—although from morning, after he had endured several The information in this newsletter very different positions—highlight hours of vomiting, that his situation is not intended to provide legal advice or opinion and should not be how respecting individual autonomy was grave. His wound might never acted upon without consulting an in the “real world” is not as simplistic heal. The antibiotics could cause attorney. as many like to think. About a year permanent organ damage. He would before Brooke’s death, he decided be financially ruined by the care he he was ready to die and wanted to would need over the next six months.

2 Mid-Atlantic Ethics Committee Newsletter He was “looking at a life of complete feeding tube or a ventilator should not Until we do better to address health and utter dependence” (Peace, 2012). receive a feeding tube or ventilator, disparities among disabled persons Then he offered Bill the option of period. But for patients who are and pervasive disability bias, our foregoing treatment and choosing not dying but facing disability and progress in providing better end-of-life comfort care instead. I’m happy to reliance on medical technology care across the board will be thwarted. report that Bill is physically healed to live, their requests to stop life A good place to start is by educating and enjoying his new bike, which support should not be met with a ourselves about disability advocacy. replaced his kayak. But his memory of mere confirmation of their decision- (See BOX for suggestions.) that conversation with the hospitalist making capacity, but with a concerted still haunts him. effort to persuade them to consider Anita J. Tarzian, PhD, RN What lessons do Brook and Bill alternatives. Persuasion is different MHECN Program Coordinator teach us about honoring patients’ end- from manipulation or coercion. REFERENCES of-life wishes? Advance directives Unfortunately, clinicians are often Bach, J.R. (2013). Paradigm communicate our wishes about unaware of the alternatives available to paralysis in the management of end-of-life treatment when we are maximize independence and quality of neuromuscular disease. J Med Pers, dying or permanently unconscious life for disabled persons, and their own 11, 24-29. and we can’t tell others what we biases that the burdens to the patient, want. Neither Brooke nor Bill were to caregivers, and to society aren’t Henig, R.M. (July 17, 2013). A in these conditions. While people worth the benefits may influence the Life-or-Death Situation. New York who retain decision-making capacity conversations they have with patients, Times Magazine. Available at http:// don’t have to be dying to refuse life- as Bill’s essay illustrated. How we www.nytimes.com/2013/07/21/ saving treatments like ventilators or spend money on health and well-being magazine/a-life-or-death-situation. antibiotics, how we respond to their in the U.S. also reinforces disability html?pagewanted=all. requests to die should be different bias. Third party payers cover joint Peace, B. (July 17, 2013). The NYT from how we respond when a patient replacements, implanted cardiac Infuriates Me. Available at http:// lacks decision-making capacity and defibrillators, and extended ICU-stays badcripple.blogspot.com (search by the conditions of his living will are but not non-invasive ventilators and date). in effect. That is, a dying patient with wheel chairs for patients paralyzed a living will clearly prohibiting a by injury or disease (Bach, 2013).

LEARN MORE ABOUT DISABILITY PERSPECTIVES Articles Garden, R. (2010). Disability and narrative: New directions for medicine and the medical humanities. Medical Humanities, 36(2), 70-4. Roush, S.E., Sharby, N. (2011). Disability reconsidered: The paradox of physical therapy. Physical Therapy, 91(12), 1715-27. Books Johnson, M. (2003). Make Them Go Away: Clint Eastwood, Christopher Reeve, and the Case Against Disability Rights. Louisville, KY: Avocado Press. Longmore, P. (2003). Why I Burned My Book and Other Essays on Disability. Philadelphia: Temple University Press. Websites Rehab Institute of Chicago http://lifecenter.ric.org/ Blogs Bad Cripple (Bill Peace) http://badcripple.blogspot.com

Mid-Atlantic Ethics Committee Newsletter 3 BIOETHICS LOSES A FOUNDING FATHER Medicine is the most scientific of the humanities and the most humane of the sciences. -Edmund Pellegrino

On June 13, 2013 bioethics lost a and innumerable prizes including the member of its founding generation, American Association of Medical Edmund D. Pellegrino. Pellegrino College’s Abraham Flexner Award started life in Brooklyn as the studious for Distinguished Service to Medical son of a tailor. Graduating summa Education, the American Medical cum laude with honors in chemistry Association’s Benjamin Rush Award from a Brooklyn college, Pellegrino, for Citizenship and Community, like others in his generation, was and the Hasting Center’s Henry initially barred from medical school Knowles Beecher Award for Lifetime by the vowels at the end of his name: Contribution to Ethics and the Life telltale signs of his Italian heritage and Sciences. Roman Catholic religion. Advised For Pellegrino, any medical to shorten his name to remove the ethics or bioethics not grounded offending vowels, Pellegrino refused. in a philosophical understanding His refusal to yield to prejudice, of medicine was fundamentally his embrace of his heritage, and his groundless. In his writings and those principled stance were characteristic that he co-authored with his friend of the man. and fellow medical educator, David Eventually Pellegrino was admitted Thomasma (1940-2002), Pellegrino to New York University medical sought for “the philosophical basis school, where he also did his Edmund Pellegrino of medical practice” (the title of internship and residency at Bellevue (artist: James Crowley) their 1981 book). Several themes Hospital. After two years of service the medical humanities to the World thread their way through Pellegrino’s in the military medical corps and a Council of Churches, on the pages writings: a keen appreciation for short stint at a tuberculosis hospital of medical journals from JAMA to the fragility of life, the discernment in upstate New York, Pellegrino Pharos, and at the Medical College that the healing arts are a humanistic joined the faculty of NYU. In the of Yale University, where he became response to patients’ vulnerability, and mid-1960s he moved south to chair president and chairman of the board. the insight that any comprehensive the Department of Medicine at the After that he became president of the medical ethics must address virtues University of Kentucky. While there Catholic University of America (1978- as well as duties. For Pellegrino, he began to write notable articles 1982), stepping down to assume the the core of medical humanism is on medical education (“Beehives, directorship of the Kennedy Institute encapsulated by the following line Mousetraps and Candlesticks—A of Ethics at Georgetown University in the Hippocratic oath, “I will Dilemma for Medical Educators, (1983-89), where he remained as follow that system or regimen which, 1963), medical ethics, and the James Carroll Professor of Medicine according to my ability and judgment philosophy of medicine (“Medicine, and Medical Ethics for the rest of I consider for the benefit of my Philosophy and Man’s Infirmity,” his career. From 2005-09 Pellegrino patient and abstain from whatever 1966). In the mid-1960s Pellegrino chaired President George W. Bush’s is deleterious and mischievous.” He moved back to New York as chair Council for Bioethics. read this line as generating an internal of the department of medicine and Pellegrino’s career spans six decades morality for clinical medicine (the title dean of the medical school at Stony (1950s to 2010s) during which he of an essay in his 2008 book) with Brook. In the 1970s he returned to wrote about 600 papers; authored, a profound commitment to human the south to serve as vice president edited, or co-edited twenty books; dignity and human life. Moving from at the University of Tennessee, founded The Journal of Medicine theory to practice he championed the Memphis, where he helped to create and Philosophy; gave thousands of “humanities in medical education for a groundbreaking program in the lectures and yet still found time to a post-evangelical era” (to paraphrase medical humanities. By the end of the mentor innumerable students. He was a chapter title in his 2008 book), and decade Pellegrino was championing awarded forty eight honorary degrees urged fellow medical educators to

4 Mid-Atlantic Ethics Committee Newsletter challenge any medical curriculum that Act was being vigorously debated at practice. He played a pivotal role failed to convey to the next generation the time and a student in the audience in founding bioethics and reforming of physicians a reflective analysis asked Pellegrino for his opinion of medical education; everyone in our of the humanistic foundations of “Obamacare.” Pellegrino’s reply field benefitted from his foresight and medicine. startled many in the audience. “As leadership. Pellegrino was a conservative and a philosopher,” he observed, “I am a Fellow of the Center for Bioethics not qualified to discuss funding Robert Baker, PhD and Human Dignity. Yet his was a mechanisms, but as a physician and Union Graduate College-Icahn Mt. humanistic conservatism that relished a humanist I can only applaud the Sinai Bioethics Program dialogue with open-minded liberals, intent of the act, which is to insure that Reprinted with permission from like his colleague at the Kennedy everyone needing healthcare receives http://www.bioethics.net/2013/06/ Institute of Ethics, Robert Veatch. I it.” edmund-d-pellegrino-june-22-1920- last met Pellegrino four years ago on Edmund Pellegrino personified june-13-2013/ . the occasion of a lecture he gave at the ideal of a medical humanism a small Catholic college in Albany. grounded in scholarship and reflected President Obama’s Affordable Care in medical education and clinical

BIOETHICS, WISDOM, AND THE END-OF-LIFE CONVERSATION

Dr. B is a nephrologist whose Peter Vaslow and I founded The team members enjoy participating in patient had renal failure and multiple Wisdom of Ruth Project to enhance an interactive forum, where they have other advanced diseases. The patient the skills of medical team members the opportunity to learn the skills of did not accept that dialysis would when dealing with patients and their effective end-of-life conversations not change his outcome, so he went families in end-of-life scenarios. not only from us, but even more “doctor shopping” until he found a Hospital physicians, physician importantly, from each other. nephrologist who would continue to assistants, nurses, social workers and All the stakeholders in these order dialysis. clergy are often uncomfortable when situations stand to gain from Dr. R is an intensivist who is often giving bad news to patients, or dealing appropriate and effective end-of-life asked to treat very sick patients whose with a patient’s response to the bad conversations. primary care physician never told news. However, discomfort is just the The medical team learns that they the patient that he or she is beyond tip of the iceberg. can continue to provide care, even medical rescue. The first in our series of five Grand when the illness is beyond medical Dr. S was asked by a dying patient’s Rounds, “Why Have the End-of-Life rescue. Medical team members family to conceal the prognosis from Conversation?” elicited considerable have greater effectiveness and job the patient. Dr. S knows that if she frustration from physicians who satisfaction when they understand they lies to the patient, he will not trust his frequently deal with patients at the don't have to "abandon" the patient; physician’s advice or plan of treatment end of life. As healers, they have they can focus on care that actually again. difficulty telling patients that they provides benefit, rather than harm. The hospital’s Ethics Committee have nothing left to offer medically. The patient benefits by was asked to gather a panel to help a Some admitted they felt their job was understanding his medical situation patient’s adult children, who could not over when their patient was beyond and prognosis, allowing him to agree on “what comes next” for their cure. Still others were unfamiliar with approach the end of life on his own dying father. cultural differences, which sometimes terms. Patients often adopt a reflective These are actual bioethical scenarios prevented them from dealing directly attitude when they understand they are that have become all too familiar in with the patient, but instead, dealing facing death, and may strive to mend today’s hospital environment. I have with a family elder. Other physicians fences, request the company of family heard anecdotes like these numerous felt that they must always offer and friends, be free from pain, discuss times as a member of Washington curative treatment, no matter how final arrangements with a spouse, or Adventist Hospital’s Ethics remote the chance of benefit. spend time with clergy, all of which Committee, and as a trainer in end-of- Our workshops in end-of-life improve their quality of life in the final life communication. discussions demonstrate that medical Cont. on page 6

Mid-Atlantic Ethics Committee Newsletter 5 Bioethics Cont. from page 5 days or weeks. The family can relate leads to a realistic and effective have found that facilitating open and to the patient without guilt, knowing post-discharge plan of care, avoiding forthright communication between that the patient is comfortable and his potentially preventable readmissions. our training team and clinicians wishes are being fulfilled. Our training workshops have has raised awareness of the issues The hospital benefits in many raised awareness of the need for involved, allowing examination ways. Quality of care is improved these end-of-life conversations and and improvement of techniques by focusing on the patient’s needs, enabled clinicians to go about them in employed to make these interactions while resources are conserved by a more effective and satisfying way. more effective, compassionate, and avoiding interventions that cannot We are gratified that our discussions medically appropriate. This ensures improve outcomes. Patient and of cultural issues have educated a better outcome for the physician, family satisfaction metrics improve physicians in more appropriate ways patient, family, and hospital. with open, honest and empathic of dealing with culturally diverse communication from providers. patients and families. Sandy Elson Family conflict is reduced, often The Wisdom of Ruth Project has as Co-Founder, avoiding confrontation and the its central mission to change the way The Wisdom of Ruth Project need for intervention by the Ethics patients and clinicians deal with each www.TheWisdomOfRuth.com Committee. A realistic prognosis other in end-of-life situations. We

INSTITUTE OF MEDICINE SEEKS PUBLIC COMMENT ON END-OF-LIFE ISSUES A committee of the Institute of Med- nication with your providers and to engage in the provision of icine, Approaching Death: Addressing others who gave you support, care or the willingness to receive Key End of Life Issues, has requested treatment approaches, or any it? Please indicate what type of public comment from individuals who other aspects of care. professional you are (discipline/ care for people who are approaching 2. If you are a family member specialty). death. The committee is especially in- or friend of an individual who 4. What do you see as the biggest terested in hearing about the following passed away, what care or barriers to care (for individuals topics. All comments must be received supports did you need and/or re- with serious progressive illness by November 1, 2013. ceive while your family member or condition) that is appropriate Visit http://www.iom.edu/activities/ or friend was in the advanced and easy to access? aging/transformingendoflife.aspx to stages of their condition. What contribute (see Public Comment). 5. What three changes in the U.S. care or supports did you need health care system could im- The following questions are asked in and/or receive after they passed? the feedback survey: prove care of individuals with What care or support did you serious progressive illness? 1. If you are an individual living NOT receive and wish you had with a serious progressive ill- received during the illness, at 6. If you have additional thoughts ness or condition, or a loved one the time of death, or afterwards? about improving research, care, and education for or about indi- of an individual, please describe 3. If you are a health care pro- your experiences receiving care. viduals with a serious illness or fessional, please tell us about medical condition who are likely Your stories may include how your experiences in providing you have talked with health approaching death, or if you care to individuals with serious would like to share information care providers, your family, and progressive illness or condi- friends; how you have discussed related to the committee’s work, tion and their families. What please use the space provided and reviewed your spiritual or are the problems, opportunities, religious needs, your finances, below to do so. You may also challenges, and successes you email documents or articles to or any other issues. Your stories encounter? Does the term “end may also include what you liked support your testimony to eol@ of life” impact the willingness nas.edu. and did not like about commu- of the individuals you work with

6 Mid-Atlantic Ethics Committee Newsletter CASE PRESENTATION

One of the regular features of this Newsletter is the presentation of a case considered by an ethics committee and an analysis of the ethical issues involved. Readers are both encouraged to comment on the case or analysis and to submit other cases that their ethics committee has dealt with. In all cases, identifying information about patients and others in the case should only be provided with the permission of the patient. Unless otherwise indicated, our policy is not to identify the submitter or institution. We may also change facts to protect confidentiality. Cases and comments should be sent to [email protected], or MHECN, Law & Health Care Program, University of Maryland Francis King Carey School of Law, 500 W. Baltimore St., Baltimore, MD 21201.

CASE STUDY FROM A wife and daughter have pressured him prolonging technology if they are MARYLAND NURSING HOME to agree to interventions he doesn’t faced with a choice of life or death, Mr. J. is a 78 year old man re- want (like the g-tube). He has no and that such individuals who are admitted to a nursing home after documented advance directive. able to communicate rate their quality being hospitalized for seizures Currently, Mr. J is alert but it’s of life positively, despite their prior (status epilepticus). He retains a unclear whether he has decision- predictions that they would rather not tracheostomy with oxygen to trach making capacity, as he only nods live in such a state. collar but no longer needs a ventilator yes or no to questions, and doesn’t On the other hand, we spend more to breathe. Prior to the hospitalization, always seem to respond in a way medical resources in the U.S. during he resided at a nursing home for a that demonstrates decision-making the last six months of a patient’s life little over a year. He is dependent on ability. The nursing home staff, without achieving improved outcomes, others for activities of daily living however, firmly believe that Mr. J. in the process bringing loved ones due to a prior stroke. He has a history had the ability to make decisions through a roller coaster of emotions of diabetes and high blood pressure. about his care when his MOLST that may complicate the grieving Mr. J. was active in his Baptist form was previously completed. process, and often disregarding the church prior to his decline in health. They are concerned that he is patient’s wishes along the way. Given Staff describe him as a pleasant man currently receiving tube feedings in our death-denying culture, it is not with a stubborn streak. His wife and contradiction to his previous MOLST, uncommon for loved ones to urge a daughter are actively involved in his and don’t know how to proceed. patient who is dying to “keep fighting” care. Two other children who don’t when the patient would rather let go. live nearby are not actively involved. COMMENTS FROM AN ETHICS The MOLST form evolved out of a The nursing home social worker CONSULTANT motivation to provide better EOL care. called for an ethics consult because Nursing home staff believe that But we are still on a learning curve. the Maryland MOLST form that was Mr. J expressed a clear wish not to The ethical principle of respect completed at the nursing home prior receive tube feedings. However, Mr. for persons is relevant in this case. to his hospital transfer indicated that J also expressed a wish to receive It obligates us to do two things: (1) he did not want g-tube feedings. Yet, other life-prolonging measures, protect the autonomy of individuals a feeding tube was placed during his like ventilator support and cardio- with decision-making capacity by recent hospitalization and he arrived pulmonary resuscitation (CPR) respecting their wishes; and (2) protect at the nursing home with orders attempts. This raises a question about vulnerable persons who cannot make to continue tube feedings. All the his actual end-of-life (EOL) treatment decisions on their own from harm. For other choices on the last MOLST preferences. While an individual may Mr. J, harm related to tube feedings form completed at the nursing home decide that he would not want to live could come from either: (a) more indicated that all life-prolonging under certain conditions (for example, suffering during the dying process if measures should be implemented if reliant on a ventilator for breathing the tube feedings are continued too (e.g., CPR, ventilator, blood products, or tube feedings for nutrition), these long, or (b) a premature death if the antibiotics, but not tube feedings). The preferences for future treatment are tube feedings are stopped too early. staff are convinced that Mr. J. does more appropriately expressed in an This raises the question of whether not want to be fed through a tube, advance directive rather than in a the ethically appropriate course of that his health has been deteriorating MOLST form. Furthermore, research steadily and that he is “tired” and has shown that people change their ready to die. They believe that Mr. J’s minds and opt for adaptive life- Cont. on page 8

Mid-Atlantic Ethics Committee Newsletter 7 Case Presentation Cont. from page 7 action for Mr. J is to stop his tube nature of his MOLST order, clear appropriate to achieve the hoped- feedings based on #1 (assuming he evidence of his wishes here is lacking. for goals of care. Mr. J’s physician does not want the tube feedings) or Therefore, it is ethically acceptable to should give clear recommendations #2a (assuming he is now terminally ill continue the tube feedings. However, based on Mr. J’s prognosis and and the tube feedings are prolonging Mr. J’s physician and family need best assessments of what medical his dying process and causing him to discuss his goals of care moving interventions can achieve the goals to suffer), or to maintain the tube forward and how best to achieve them. of care. If Mr. J would not want tube feedings for the time being based His condition should be re-evaluated feedings continued, then they should on #2b (assuming if he stopped tube on a regular basis to see if short-term be stopped. If it is unclear or unknown feedings now, he would die, and it is goals are being met, and if not, how to what he would now want, then a “not his time”). proceed. For example, one short-term decision should be made based on his The first step here would be to goal could be to see if Mr. J could best interests. In addition to whether determine whether Mr. J currently resume oral feedings, at least eating to continue tube feedings, decisions has decision-making ability and can for pleasure. should be made about the other life- communicate his preferences. If not, Given Mr. J’s prior conversations prolonging medical interventions two physicians should certify that he with staff about not wanting tube listed on the MOLST form, as well lacks such capacity. If appropriate, a feedings, the family should remain as whether/when to involve palliative certification of end-stage condition open to the idea that he is transitioning care/hospice. could also be made, giving Mrs. J toward the dying process when the Unfortunately, the MOLST form authority under Maryland’s Health goals of care shift from cure/restoring focuses on what will not be done, Care Decisions Act to make decisions function to maximizing comfort instead of what will be done, so it is about his EOL treatments. Yet, Mrs. J and psycho-spiritual support for the important to explain to patients and is still obligated to base her decisions patient and family. But nursing home families how they will be supported on her husband’s known wishes. staff should also remain open to the at every stage of the illness trajectory. On what basis did Mr. J decline possibility that Mr. J may not be For example, it is common for tube feedings but request other life- considered terminally ill, and that as patients with life-limiting illnesses prolonging measures? Did he choose long as Mr. J remains alive, he may to feel isolated from loved ones and to forego tube feedings even if that prefer using life-prolonging medical poorly supported to express their meant he would die as a result? Did technology if he (or his surrogate) EOL preferences. Steps should be he simply want to keep taking oral thinks the benefits outweigh the taken to minimize this risk. Mrs. J and feedings as long as possible? Is Mr. burdens. her daughter should be encouraged J at the point of transitioning from While individuals for whom staff to communicate with Mr. J that it is being chronically ill to terminally ill, complete a MOLST form may choose okay with them if he is ready to stop for which a “comfort care” approach not to complete an advance directive, working so hard to get better. Even under hospice care would best fit his the latter should be encouraged to if he is not verbally communicative, needs and wishes? avoid situations like this one. At a he may still hear and understand. It Given the information at hand, it is minimum, Mr. J could have appointed might help for Mr. J to hear directly reasonable to conclude that uncertainty a health care agent, and this would at from his wife and daughter that they remains whether or not Mr. J would least have provided some indication give permission for him to make these want the tube feedings stopped now. that he trusted his wife’s decisions choices, as sometimes family members When making a decision to forego about his EOL treatment orders. are not ready to “let go” and push life-sustaining interventions that would Because Mr. J’s wishes were not patients to “get better” when that is not result in a patient’s death based on the documented in the form of an advance what the patient really wants. These patient’s wishes, it is appropriate to directive, the clinician completing are difficult decisions, particularly require a standard of clear evidence. the MOLST form, after discussion when there is uncertainty about the Because Mr. J’s stated desire to forego with Mrs. J (assuming Mr. J lacks patient’s prognosis and wishes. It is tube feedings was not implemented decision-making capacity; this appropriate to give the family time in the form of a legally valid advance should be confirmed), will need to to think about these options and to directive, and given the contradictory consider what interventions are most respect their choices as long as they

8 Mid-Atlantic Ethics Committee Newsletter are informed and do not contradict the patient’s condition changes. From shouldn’t ever be changed except to clear evidence of Mr. J’s wishes. an ethics point of view, I don’t want remove more healthcare interventions. patients to get treatment they don’t Maybe this comes from seeing Anita J. Tarzian, PhD, RN want. But on the other hand, patients advance directives ignored. But a MHECN Program Coordinator (or their surrogates) have a right to MOLST is not an advance directive. Ethics & Research Consultant, change their minds. In almost every Baltimore, MD Q: Considering Mr. J, how do you case where I’ve encountered staff think the hospital and nursing home resistance around a MOLST order, differ in their approach? INTERVIEW WITH ROBERT E. it’s when the patient or the patient's ROBY, MD, CMD appropriate decision-maker decides to RR: In Mr. J’s case, it seems that Q: How would you handle a case change the MOLST form to request the MOLST form was filled out like this? more life-prolonging interventions, incorrectly at the nursing home. For example, it wouldn’t make sense to RR: On one hand, this is a very not to limit them. For example, a patient with end-stage cancer or withhold tube feedings if he couldn’t simple algorithmic exercise. The eat, but to offer CPR. So I can see how MOLST form was created when ALS might decide they would like to void a prior MOLST order to pursue Mr. J or his wife reconsidered the tube Mr. J was in one condition. Now his feedings in the hospital. But in my condition has changed, so you have a trial of antibiotics and ventilator support to treat a pneumonia. Yet, I experience, we have more time in the to start over. You start at the top of nursing home to fill out the form right. the algorithm: has a determination have seen staff try to block this in various ways because they believe The time factor in hospitals is a real of incapacity been made for Mr. J by problem. Families are usually coping two doctors? If yes, has Mr. J been that less aggressive end-of-life (EOL) interventions are more appropriate for with a major health crisis, so it’s determined to be in a terminal or hard to have a meaningful discussion end-stage condition, or in a persistent patients who are terminally ill, and they feel obligated to follow through about EOL treatment limitations. vegetative state [PVS]. If so, then as Most hospital physicians don’t know the authorized decision-maker, Mrs. with MOLST orders that limit EOL interventions. how to have these conversations, and J can decide to continue or to stop they don’t know how to interpret and her husband’s tube feedings, taking I’ve seen some ridiculous situations, such as staff telling patients who are correctly fill out MOLST forms. into account what she knows of his What I’ve seen more commonly is wishes. If Mr. J is not considered to clearly their own decision maker that they can’t change the MOLST form that the hospital physician completes be terminal, end-stage, or in a PVS, a MOLST form incorrectly, and this then Mrs. J is more limited in which that they themselves created. In some cases, the very request to change the puts the nursing home in a difficult of Mr. J’s treatments she can request position. It’s almost better for the be withheld or withdrawn. As for the form was taken as evidence that the patient must have lost capacity, with nursing home if there is no MOLST MOLST form that was filled out in the form accompanying a patient nursing home before Mr. J’s hospital staff then pressuring physicians to certify incapacity on that basis alone. discharged to the nursing home from transfer, it doesn’t make sense to the hospital because there is about a provide all life support interventions Another variation is for staff to tell the physician who signed the original five to seven day grace period allowed while withholding tube feedings, so to address this. Yet, if a MOLST form this needs to be clarified. MOLST form (the very act that completed it and made it an order) that is sent that is incorrectly completed, Q: So assuming Mr. J lacks (s)he cannot change the form because nursing home staff perceive that we decision-making capacity, you would it is now an “order” and as such cannot need to correct this immediately. let Mrs. J make decisions and you be altered, even by a physician. Nursing home social workers, in would complete a new MOLST form? The long term care staff really particular, are afraid of failing an audit RR: Yes. Unfortunately, I’ve seen bond with their patients. They feel if the MOLST form is not filled out a trend among some nursing home protective of them and want to 100% correctly. staff to view a MOLST form as a advocate for them. But what does it Say we get an admission from a binding legal document—kind of a mean to advocate for a patient when hospital on the weekend, when there’s de facto advance directive—instead it comes to MOLST forms? To some no social worker, and the MOLST of a medical order that changes when nurses, MOLST is an order that Cont. on page 10

Mid-Atlantic Ethics Committee Newsletter 9 Case Presentation Cont. from page 9 form that came from the hospital nursing home perspective, they usually Q: Do you think an ethics consult indicates on the first page that the form won’t take a patient back if the patient might help in cases like these? was completed based on a discussion isn’t eating or swallowing well and RR: I think if staff continue to have with the patient’s health care agent. doesn’t have a feeding tube, unless the concerns, an ethics consult could help Then the nursing home staff discover patient is enrolled in hospice, for fear clarify the process and the legal and there is no appointed health care agent. of being sanctioned by state surveyors. ethical standards. In cases I’ve seen Once the social worker discovers But in Mr. J’s case, what concerned the like these, there can be a lot of anger this, she wants the form redone staff was his prior stated wishes that built up on both sides. It can help to immediately. Yet, nine times out of he didn’t want tube feedings. It could let those involved vent their emotions. ten, the correction made to the form be that staff really believe he doesn’t You have to rebuild trust. In the end, doesn’t change the patient’s care. want the tube feedings and they feel we need to really listen to the family Mr. J’s case centers on tube compelled to advocate for him. But here. If they are telling us something feedings. This is the MOLST order it could also be another example we think doesn’t make sense, let I’ve seen most commonly ignored in of this trend I’ve seen to think that them explain why they think it makes the hospital setting, whether before once a MOLST form is issued with sense. Our tendency is not to listen, July 1 when nursing homes were using any limitation on treatment, it can’t especially if the conversation isn’t MOLST voluntarily, or after July 1. be undone. A MOLST form is not a going the way we want. What’s most Hospitals are focusing on achieving replacement for an advance directive. important is that the medical orders shorter patient lengths of stay and Ideally, you should have both. I think support good end-of-life care that’s fewer readmissions. I think hospital facilities are filling out MOLST forms consistent with the patient’s known physicians believe putting a feeding but not advance directives because the wishes. We still have a ways to go to tube in a patient who is having trouble MOLST is legally mandated, while get this right. eating or swallowing helps achieve the advance directive is not. That’s a these goals, even though the literature problem. doesn’t really support this. From the

2014 GOAL FOR MARYLAND ADVANCE DIRECTIVE REGISTRY In 2011, the Office of the National Coordinator for Health Information Technology awarded the Maryland Health Care Commission $1.6 million to pilot the electronic exchange of clinical documents between long-term care facilities and hospitals through the statewide health information exchange (HIE, see http://crisphealth.org/). Fund- ing for this pilot also calls for Maryland to plan for and test the availability of electronic advance directives and MOLST forms. Senate Bill 790 requires the Department of Health and Mental Hygiene to set a fee in regulation to fund an advance directive registry in Maryland, which would be operational by October 1, 2014. Details have not been finalized. Oregon, New York, and Virginia have advance directive registry initiatives in place. For more information about efforts in Maryland, visit http://mhcc.dhmh.maryland.gov/hit/hie/Pages/hie_main.aspx. Tanio, C.P. & Steffen, B. (June, 2012). Strategy for Implementing Electronic Advance Directives and MOLST forms. Maryland Healthcare Commission Information Brief. Available at http://mhcc.dhmh.maryland.gov/hit/hie/ Documents/AD_MOLST_Final.pdf.

10 Mid-Atlantic Ethics Committee Newsletter CALENDAR OF EVENTS OCTOBER 5 (10A-12N) Henrietta Lacks Memorial Lecture. Sponsored by the Johns Hopkins Institute for Clinical and Translational Research. Speaker: Gary Gibbons, MD. Turner Auditorium, Johns Hopkins Medical Campus. Free to public but registration required. For more information and to register, visit http://ictr.johnshopkins.edu/service/lecture/.

15 (6:30 pm) The Ethical Responsibility of Physicians in Response to Violence or the Threat of Violence. The Second Annual Medical Ethics Lecture and Forum sponsored by Dr. & Mrs. Thomas Allen and MedChi. 2211 Cathedral St., Baltimore, MD.

24-27 Tradition, Innovation and Moral Courage, Annual meeting of the American Society for Bioethics and Humanities, Hilton Atlanta, Atlanta, GA. For more information, visit: http://www.asbh.org/.

NOVEMBER 1-4 Clinical Ethics Immersion, Center for Ethics, MedStar Washington Hospital Center, Washington, D.C. For more informa- tion, contact Christian Carrozzo, [email protected], 202-877-0246. DECEMBER 9 MOLST: A SIX MONTH CHECK-UP, Sponsored by the Maryland Healthcare Ethics Committee Network, University of Maryland School of Law, 655 W. Lombard St., Baltimore, MD. For more information, visit http://www.law.umaryland.edu/ mhecn (click on Conferences).

12 (12:30 PM) Difficult Conversations When Life is Short, Bioethics Grand Rounds, Shady Grove Adventist Hospital, Sycamore/Birch Room, Rockville, MD. For more information, contact Paul Van Nice, (301) 509-2225, [email protected].

JANUARY 17-20 Clinical Mediation Intensive, sponsored by the University of Pennsylvania Department of Medical Ethics and Health Policy. For more information, visit http://medicalethics.med.upenn.edu/events.

MARCH 7 Social Work Ethics Conference – Practicing Social Work in a Digital World: Ethical and Risk-Management Challenges. Sponsored by the National Association of Social Workers, North Carolina Chapter, McKimmon Center, Raleigh, NC. For more information, visit: http://www.naswnc.org/. 7-9 Responding to the Limits and Possibilities of the Body – 3rd Annual Conference on Medicine and Religion, sponsored by the Program on Medicine and Religion, University of Chicago and the Institute for Spirituality and Health, Texas Medical Center. Hyatt Chicago Magnificent Mile, Chicago, IL. For more information, visit: www.MedicineandReligion.com. 19 Ethics of Caring, Annual National Nursing Ethics Conference, Los Angeles, CA. For more information, visit http://ethic- sofcaring.org/.

The Johns Hopkins Berman Institute hosts bioethics seminars on the second and fourth Monday of each month from 12:15 PM to 1:30 PM. Lunch is provided. To receive emails of seminar speakers or for more information, contact Tracie Ugamato at [email protected], 410-614-5550.

Mid-Atlantic Ethics Committee Newsletter 11 The Law & Health Care Program Maryland Health Care Ethics Committee Network University of Maryland Francis King Carey School of Law 500 W. Baltimore Street Baltimore, MD 21201

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12 Mid-Atlantic Ethics Committee Newsletter