MS Clinical Messenger Gateway Area Chapter
SUMMER 2010
Making Sure Your Wishes Are Followed: What You Need to Know Gateway Area Chapter Clinical Advisory Committee Committee Chair
Robert Naismith, M.D Barnes-Jewish Hospital John L. Trotter MS Center
Committee Members
Elissa Held Bradford, PT St. John’s Sports & Therapy
Lee Clayton McMurray, P.C. Specializing in: Social Security Disability, Estate Planning: Trusts, Powers of Attorney, Wills, Conservatorships and Guardianships, Mental Health Law Most people prefer to think that they won’t ever be in the position of not being able to make their medical and financial wishes known. Losing a loved one, sustaining a life-changing injury or being diagnosed with a serious and potentially disabling illness can quickly change that attitude. The three essential documents needed to ensure that your medical and financial wishes will be honored should you become unable to convey them include: · A durable power of attorney for health care, · A durable power of attorney for financial matters, and · A living will (also called an “advanced directive”).
Mary DuParri, M.A., LPC Private Practice
A durable power of attorney for health care is a document that allows a person (principal) to name an attorney-in-fact (or agent-in-fact) to make their healthcare decisions for them. The power conveyed from the princiGerard Erker, PhD pal to the agent is a broad power, and gives the agent the ability to act in SSM Rehab any health care decision-making capacity that the principal would have St. Mary’s Health Center acted, had s/he been able to do so. The term “durable” is essential, as this ensures that the document survives any time period during which the Barbara Green, M.D. St. John’s Mercy Medical Center principal is unable to make their health care decisions known, which is called “incapacity”. The named agent should obviously be a person who West County MS Center is comfortable accepting this role and who will honor the wishes of the principal. Penny James OTR/L, MS Veteran’s Administration The second essential document is a power of attorney for financial matMedical Center ters. Again, the principal conveys broad powers to an agent (or attorney Michelle Keating, RN, OCN, MSCN in fact), giving the agent ability to handle any financial matters that the St. John’s Mercy Medical Center principal would have handled, had the principal been able to do so. Again, the term “durable” is necessary in order to ensure that the authority of the document survives any period of incapacity or inability, of the prinBarry Singer, M.D. Missouri Baptist Medical Center cipal to act. The authority of the agent can be made a specific or general as needed. Florian Thomas, M.D. Saint Louis University Health Sciences Center
The third essential document is a living will, often called an advance directive. These can be drawn up by an attorney, or found on the Missouri and Illinois Bar’s website.
The living will, unlike the durable powers of attorney, is only referenced at the end of one’s life. The living will sets forth which end of life choices the dying person wishes to avail themselves of. The most critical choice is nutrition and hydration and whether or not to resuscitate. All of these choices can be set forth with specificity, provided one acts before illness or injury makes one unable to do so. If illness or injury has occurred such that the putative principal is totally unable to convey their wishes, other measures can be instituted. Missouri law allows for the court appointment of a guardian and conservator. In Illinois, the appointment is for guardians of the person and guardian of the estate. Consult with an attorney for other very specific statutes relating to Illinois guardianship law. A guardianship gives the guardian authority over the person and the authority to make decisions about placement and medical issues. Typically the person’s ability to drive, vote and enter into a contract is terminated. The conservatorship gives authority for the conservator to gather all assets of the person, inventory these for the probate court, and under court authority, handle the person’s financial matters. There can be limitations placed upon the guardianship and conservatorship duties, all depending upon the function of the person for whom these measures are being taken. The durable powers of attorney are much simpler and cheaper to execute, if the situation allows. The best plan of action is to plan before the need is critical.
MS Society Resources
The Information Resource Center (IRC) with the National MS Society can provide information about MS, referrals to local resources and specialists that are available to listen and provide support on medical and financial issues. The IRC can be reached at 1.800.344.4867, option 1. The Chapter’s Care Management program provides additional support in managing MS and its changes requiring more comprehensive guidance. Knowing what to look for, where to find it, and how an individual with MS and their family can work effectively with doctor and other health professionals is essential to an individual’s health and quality of life. The overall goal of care management is to help people with MS achieve the highest level of independence possible and help caregivers cope with the challenges. Care management is usually brought about by a change in: • Individual’s health status • Caregiver situation
• Support network • Financial crisis
To get connected with a care manager, please call 1-800-344-4867, option 1
Related Publications for Professionals
www.nmss.org g For Professionals g Clinical Bulletins Opening Doors: The Palliative Care Continuum in Multiple Sclerosis by Marion Brandis, MA, RN, BSN, Nancy Clayton Reitman, MA, BSN, RN, MSCN, David Gruenewald, MD, FACP, and Maura Del Bene, MS, RN, NP-P Ombudsman Resource Center Aging with Multople Sclerosis by Terry DiLorenzo, PhD
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Professional Education Programs: Psychosocial Intervention in Multiple Sclerosis: Strategies for Mental Health Professionals Date: Friday, August 6, 2010 Time: 9 a.m. – 5:30 p.m. Location: Garden Villas Retirement Community, St. Louis, MO) Cost: $50/person before July 9, $75/person after July 9, $30/student Presenters: Mary DuParri, LPC, Private Practice Kris Herfkens, PhD, Triangle Neuropsychology Services, PLLC, Durham, NC Continuing Education: CEU’s have been secured for psychologists, social workers, professional counselors and marriage and family therapists Registration: 1-800-344-4867, option 1 Pediatrics and MS: A Program for Health Professionals Date: Tuesday, September 21 Time: CME Dinner program for health professionals Time: 6 p.m. Date: Wednesday, September 22 Time: 8-9 a.m. Pediatric Grand Rounds Location: Cardinal Glennon Children’s Hospital Presenter: Jayne Ness, MD, PhD, Center for Pediatric Onset Demyelinating Disease, a Pediatric MS Center of Excellence, Children’s Hospital of Alabama Rehabilitation in MS: Strategies for Physical and Occupational Therapists Date: Saturday, September 25 Time: 8 a.m. - 5 p.m. Date: Sunday, September 26 Time: 9 a.m. - noon Location: Hilton Garden Inn, O’Fallon, IL Cost: $75/person before August 25, $100/person after July 9, $25/student Presenters: Elissa Held Bradford, MPT, St. John’s Sports & Therapy, St. Louis, MO Marcia Finlayson, PhD, OT (C), OTR/L, Assistant Professor, Department of Occupational Therapy, University of Illinois Chicago Registration: 1-800-344-4867, option 1 Continuing Education: PENDING
Make A Difference Day Does an MS patient of yours need a little help with repairs to their home? Does their yard need a little sprucing up? Does their caregiver need a day off from their yard duties? Make a Difference Day is October 23, and we need your help identifying homes that could benefit from a mini-makeover. An army of volunteers will spread throughout the community, descending on the homes of individuals who are affected by MS, to complete household projects including raking leaves, washing windows, painting, weeding, mulching, planting, trimming hedges and much more. For more information, please Amanda Haught at (314) 446-4182. Thank you for your commitment to making sure that the challenges faced by those who are affected by MS are addressed!
MS Clinical Messenger © 2010 Mission Statement: We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. A newsletter published by the National MS Society. 1867 Lackland Hill Parkway St. Louis, MO 63146 (314) 781-9020 or 1-800-344-4867 info@gatewaymssociety.org President: Phyllis Robsham Editor: Robert Naismith, M.D.
Upcoming Chapter Events and Programs
Midwest Teleconference Series: July 12, August 9, September 13, 7-8 p.m.
The Midwest Teleconference series is the second Monday of the month from 7-8 p.m. and it is free. Upcoming dates and topics are: • July 12, Bowel Dysfunction and MS • August 9, Progressive MS • September 13 Navigating the SSDI Process
Wellness Network Teleconferences: July 29, August 26, September 30, 7-8 p.m.
The Wellness Network connects people who have an interest in or who are actively participating in exercise programs through a monthly teleconference. These are similar to the Chapter “Talk MS” groups but each call will focus on a different topic relating to wellness. Upcoming topics include: • July 29, Exercise Equipment • August 26, Staying Active in Warm Weather • September 30, Weight Management
New Connections at Tony’s Restaurant in Alton, IL: Thursday, August 12, 6-8 p.m.
Come meet with other people who have been newly diagnosed with MS in the past five years or who have recently moved to the area. Chapter staff members will be attending to let you know what we do and how we can help. This program will feature a guest speaker, Dr. Christopher LaGanke, who will address the needs of people living with MS and their caregivers. A three-course dinner will be included with this free program.
Walk MS, 2010, Various Locations: August 21, September 11, 25 and 26
Walk MS is the signature fundraising event of the National Multiple Sclerosis Society. It is an organized front bringing us ever closer to a cure one step at a time. It’s about compassion for others. It’s about passion, drive and commitment to succeed. It’s about raising awareness for a disease that strikes individuals in the prime of their life. It’s about doing more than you have to in life to make someone else’s life that much better. Most importantly it’s about people. It’s about community, neighbors, family and friends. Fall walks are August 21 in O’Fallon, IL, September 11 in Union County, IL, September 25 in Mount Vernon, IL and Bootheel Area, MO, and September 26 in Ste. Genevieve, MO. For more information go to www.gatewaymswalk.org.
Research MS in Edwardsville, IL and Sikeston, MO: August 28
MS specialists will provide up-to-date information on research and new therapies, new data on disease modifying medication for MS. Dr. Gregory Wu, Assistant Professor of Neurology, Division of Neurology, Washington University in St. Louis, will speak at the Edwardsville at Sunset Hills Country Club, 2525 Hwy 157 South in Edwardsville, IL. Dr. Barry Singer, Neurologist at Missouri Baptist, Medical Center, Director of The MS Center for Innovations in Care will speak in Sikeston, MO.
John L. Trotter Research Program, St. Louis, MO: September 23, 7-9 p.m.
Dr. Mark Freedman, Director Multiple Sclerosis Research Clinic, The Ottawa Hospital, Division of Neurology Ottawa Ontario, will be this year’s keynote speaker. Dr. Freedman will discuss: bone marrow transplants and their relationship to treatment of MS, why stem cell research is important to people living with MS, discover what some common misconceptions about stem cell research are and some of the distinctions between different types of stem cells. Early registration (by August 27) is $12.50, regular registration is $15. Call the Chapter about fee waivers and transportation options. There is also a free teleconference option.
Registration and more information:
Call 1-800-344-4867 or 314-781-9020 or go to www.gatewaymssociety.org.