Last modified: 11 May 2000
It is important for all of us to think about our preferences if a serious illness, injury, or permanent loss of mental capacity makes us incapable of talking to a doctor and deciding what medical treatments we do or do not want. And we must communicate o ur preferences to others.
The legal documents that enable you to communicates your wishes regarding health care should you become unable to communicate these wishes yourself are called advance directives.
Advance directives can take many forms: living wills, health care proxies, durable powers of attorney--and, yes, organ donor cards. Each state has its own legal guidelines as to what can be included in these documents. In general, living wills specify the kind of medical care you would or would not want if you became unable to communicate your own wishes. Health care proxies designate someone to make your medical decisions in case you're incapacitated; and durable powers of attorney designate someone to manage your affairs in case you're incapacitated.
How do you go about completing advance directives? The easiest way is to consult a lawyer; these documents are frequently reviewed as part of your estate plan or will. Many hospitals distribute living will forms to patients so they will have a record of their wishes.
Another source of information is the AARP Legal Counsel for the Elderly, which has prepared a booklet called Planning for Incapacity: A Self-Help Guide for each state. Each publication has a living-will form and a health-care power of attorney form, as well as information on preparing advance directives. The cost is $5.00/booklet, including including shipping and handling. Order by title and state from Legal Counsel for the Elderly/AARP, PO Box 96474, Washington, DC 20090-6474; make checks payable to Legal Counsel for the Elderly.
A second source of forms for each state is an organization called Choice in Dying. They make forms available at no charge, but do not provide separate instructions. Call 800-989-9455 for more information.
If you have questions about some of the medical issues involved in completing these forms, ask your doctor the next time you're in the office.
Finally, once you complete the forms, be sure you distribute them appropriately. For example, your doctors should have copies of your living will. Get more specific distribution instructions from your lawyer or from the kits you purchase.
It's a little late for new year's resolutions, but put this on your to-do list anyway.
This month's column is a special one because it profiles TRIO's family of significant others. Every husband, wife, parent, sibling, child, relative, and friend who has given of themselves with love and friendship . . . we honor you.
You're the glue that has kept most of us together during the ups and downs of waiting for a transplant, and you continued to be there during the long recovery period that followed. You where there when we needed an ear, you were there when we needed a sh oulder, and most of all you were just there. You were there when we needed to get to the emergency room at 3 a.m., and you stayed there for as long as it took--even though you often went to work the next day with little or not sleep. It was you we first saw in the recovery room, giving us a thumbs up, a smile, or just your presence. We knew we weren't alone!
You've fed us, cleaned up after us, called us, and generally loved us. When we were down, you tried to lift us up, and when we were up, you shared our joy. There will never be enough words to describe what you mean to us. Each of you has stayed strong for us always, and our recoveries and well-being are due as much to you as to our wonderful transplant teams.
We know that you have had bad days too, and have lived our fears and pain with us. So, in this column, at least, we want you to know how very special you are. And maybe sometime in the future, the transplant community will designate a day to honor all o f you as you deserve. We consider ourselves very fortunate that you've touched our lives in such a profound way.
More startling news is that TRIO New England offices will also be moving soon. After five years of working out of founder, past-president, and director Marty Smith's home, the executive committee has approved the long-overdue move to an office. We are currently looking for a small, inexpensive office along the 128 belt. There are some strong contenders in the Wakefield area, but we're still investigating other possibilities. (If you have any ideas, please call.) We hope to start moving in March and h ave everything up and running by April 1.
In conjunction with the new location, there will be some dramatic changes in office staff. Chapter finances can no longer support a full-time director, so Marty Smith will be resuming his volunteer status, but on a part-time basis. Those of you who have worked with Marty know how many hours he devotes to TRIO, and realize that we are losing much more than one employee. So who will be filling in the void? YOU!!
With nearly 400 members, we believe we can compile a schedule of volunteers who will staff the office 3-4 hours at a stretch. You can sign up for a weekly shift, a monthly shift, or even a 1-time shift--it will all help.
Your primary responsibilities will be to answer phones and respond to requests for information. You'll be trained on standard procedures and you'll play a vital role in TRIO New England's next phase. So start thinking about your schedule and when you ca n donate some time. You'll be hearing more about this next month (and probably every month thereafter)!
A collaboration of The Partnership for Organ Donation, the New England Organ Bank, and the museum, the event is being held in conjunction with the museum's current exhibit, Memory and Mourning: American Expressions of Grief. "Memory and Mourning is about how Americans remember and commemorate those they have lost," says Robert MacKay, museum director of education. "I can't think of a better way to end such an exhibition than by displaying the National Donor Family Quilt."
The quilt squares, dubbed "Patches of Love," incorporate pieces of memories into pieces of materials to commemorate the love and the lives of these donors. Crayons, paint, markers, threads, and other media have been used to design the 8-inch squa res, which are made of many fabrics and colors.
"The quilt shows that organ donation brings comfort to grieving families, who often tell us that it is the only good thing to come out of a very tragic situation," says Betsey Strock, director of public education at NEOB.
Other events at the museum March 9-10 include: "The Nicholas Effect," a documentary about the dramatic increase in organ donation in Italy following the death of 7-year old Nicholas Green; a discussion of their experiences by several donor family members; information tables manned by staff from NEOB and The Partnership; and distribution of "A Different Kind of Love Letter," a grassroots public education chain letter originated by The Partnership and TRIO.
The public is invited to view the National Donor Family Quilt from 10 a.m. to 5 p.m., Saturday, March 9, and from noon to 5 p.m. Sunday, March 10. Admission and parking are free. For more information, call the museum at 617-862-6559.
But in September, the international Board of Directors changed the start of the fiscal year to January and increased the international portion of the dues to $10.00.
These changes caused confusion in some chapters, including ours. We have forwarded the previously collected $5.00/member to international--now we are asking members to pay an additional $5.00 in order to comply with international's revised rules. Your d ues will then be covered until the end of 1996.
Send your checks, payable to TRIO New England, to the chapter office at 172 Boston Street, Middleton, MA 01949. Thanks!
You can send cards and notes to Karen at 2712 SW 34th St, Apt 105, Gainesville, FL 32608-1625.
Congratulations to all!
If a group would like to get together in RI, NH, CT, VT, ME or elsewhere to plan and hold a fundraiser, the office can supply a list of members in your area. David and I would be happy to host a brainstorming meeting at our home. Call us at 508-685-2886 . Let's put our heads together and get TRIO back on a sound financial footing.
Our next meeting is scheduled for 7:00 p.m. on Wednesday, March 6, at the Dana Education Center, Classroom 2, Maine Medical Center. Daniel Bates, Esq., will speak on employment rights. Dan spoke at the September meeting at the Lahey and it was an intere sting program.
We plan to have speakers on other topics of interest to transplant patients at future meetings. We invite anyone who has an interest to join our growing group.
March 28. Transplant Ethics. Michael Shapiro, M.D., Chief of Transplantation at Beth Israel and a member of the UNOS Ethics Committee, will discuss the generic ethical issues involved in transplantation.
April 25. Managed Health Care. Joseph Reedy, R.N., Clinical Nurse Consultant for John Hancock Mutual Life Insurance Co., will discuss their national transplant program.
OTHER MEETINGS
In addition to the educational series held at the Lahey Clinic, TRIO New England sponsors meetings at the following locations:
OTHER EVENTS
Martin Smith
TRIO New England
172 Boston Street
Middleton, MA 01949
Phone: 508-777-6050
Fax: 508-777-0620
email: BYGJ31A@prodigy.com