by Jean T.D. Bandler
Everyone wants to have "a good life". Definitions will vary, with some hoping for fame, success, and money and others stressing personal ties, civic contributions, and good deeds. Most wish for health, happiness, and productive work. Everyone also hopes for "a good death", and here the definitions are remarkably similar. "A good death" is one that is faced with bravery and yet is without intolerable pain, without helpless humiliation, and without dependence on others. Such a death requires courage and foresight in life. Planning ahead is clearly essential for the terminally ill and elderly; it is equally important for everyone at any age or state of health, since severe accident, disease, and calamity can happen at any time. Verbal comments, plans to fill out a living will, good intentions to write it all down have little standing or worth.
A past article ( FCIS Newsletter, Fall-Winter, 1999) reported on organizations that are particularly helpful for patients at the end of life: Hospice, which focuses on comfort care, Compassion in Dying, an advocacy and information group, and The Hemlock Society, which provides information and advice. (FCA of CT has some extra copies should you wish to review.)
This article focuses on the importance of making specific health decisions now and details two important forms: 1)The Advanced Medical Directives includes a Living Will and Attorney-in-fact- for Health Care and 2)The Medical Directive. These forms let you state your wishes on the kind of life and the kind of death you desire when ill. At the least, everyone should complete the Advanced Directives for Connecticut; even better, everyone should also review and complete the more detailed Medical Directive. Both are essential for planning ahead on the kind of life and death wanted.
The simplest and most universal form is called the Advance Directives. Although there are some variations by State, the forms are fairly standardized and relatively easy to fill out. The Connecticut Advanced Directive has three parts:
- The Health Care Instructions, or living will, a four page form to give your wishes on providing or withholding three specific life support systems (CPR, artificial respiration, and artificial nutrition and hydration) if you are permanently unconscious or terminally ill. There is also space for personal instructions, to request sufficient pain medication to be physically comfortable. A health care agent and an alternate are designated and it is recommended that these be trusted family members or friends; the health care agent is the person who will talk with the doctor to try to ensure that one's wishes are carried out. There is also room to name a "conservator of the person", to make arrangements for caring for the body after death. Two witnesses should sign the form.
- The Attorney in fact for Health care, rarely a lawyer, appoints a trusted person, person, and an alternate, who will make decisions other than about life support when one is unconscious. These decisions might be consenting, refusing or withdrawing all other medical treatments except life support, nutrition and hydration, maintenance of physical comfort. This form must be notarized. It is suggested that the Attorney in fact be the same person chosen as the Health Care Agent.
- The final form is the Witness Affidavit form, an optional 2 page form for 2 witnesses, which should be notarized.
While these are important, challenging life and death decisions, the form is simple, easy to fill out, and can be altered if your views change. There is no need to consult an attorney, but a notary public is required for the Attorney in fact and the witness forms. We recommend that you carefully discuss your wishes with your doctor and your family, make plenty of copies for their files, for your agent/ attorney in fact, and for yourself, with one copy stored in a discussed, easily accessible and safe, place; a bank vault, back of a file, or a desk drawer are not easy to locate. (FCA suggests using the kitchen freezer for the Before I Go packet, which includes the Advance Directives, and affixing the freezer magnet on the door!)
The eight page Medical Directive, is a far more complex and nuanced form. At first glance, some may be intimidated by its scope and detail, but these are complicated, multiple decisions. and should be thought through with care. Developed by Drs. Ezekiel and Linda Emanuel, both physicians and medical ethicists, the detail of the Medical Directive helps to document one's general goals and specific wishes about possible medical treatments in a range of medical situations. Similar to the Advance Directives, there is room for medical donations, naming proxy decision makers and witnesses and for a personal statement, which asks some prompting questions about the medical conditions-intractable pain, irreversible mental damage, inability to share love, dependence-that one regards as intolerable and why. Also similar to the Advance Directives, the Medical Directive comes into effect when one is unconscious, or unable to communicate wishes; it explicitly includes "incompetence" and brain damage.
Most of the form is multiple choice with a range of medical situations, a continuum of general goals for each situation, and then a check list of specific options on a list of medical interventions. The six situations range from being in a coma without hope of regaining awareness, being in a coma and near death with an uncertain chance of regaining mental function, having a terminal illness with only weeks to live and only occasionally awake; having irreversible brain damage or disease so that thinking and feeling is impossible; and finally, two situations one fills out oneself, having a condition likely in view of current medical situation, and contracting an life-threatening but reversible illness. For each situation, the five general goals covers a continuum of prolonging life and treating everything; attempting a cure with frequent revaluation; using less invasive interventions, providing only comfort care; or using other goals that you specify. In each situation, nine treatment interventions are listed; this list covers all types of cardiopulmonary resuscitation; major surgery, mechanical breathing by machine or tube, dialysis, blood transfusion, artificial nutrition and hydration, simple diagnostic tests, antibiotics, and pain medication even if it shortens life. In each situation for each intervention, one must decide between four different options: if treatment is wanted, if it should be tried but stopped if not clear improvement; if undecided, or if not wanted.
Clearly this is a complex form, spelling out a range of six medical situations, five overarching goals, nine treatment interventions, and four possible wishes. Some may worry that this is too complicated and will discourage people from using the form. However, it is the specificity and comprehensiveness of the form that makes it most useful to the patient and to the appointed health agent. The choices are not easy -- if I were comatose, would I want electric shock to keep my heart going? If I were in the last stages of Alzheimer's with a terminal illness would I want a gall bladder operation? If I had terminal cancer and was not coherent, is tube feeding desired? Difficult as these decisions are, it is far better to make them for oneself while one can, than leave them to last minute struggles by family or friends. The Medical Directive allows one to become informed, to make specific choices, and to help control one's own health care.
We urge everyone to use the Advanced Health Care Directives for Connecticut to make general choices and the Medical Directive for specific instructions. FCA of CT has the forms for both directives. Thanks to a generous discount by Drs. Emanuel, we can provide the Medical Directive below cost, but a contribution to cover its purchase, shipping and handling is welcome. Please contribute if you can, but if you cannot, please ask for the forms anyhow. These forms will help you to determine the kind of life and death you wish.
by Peter Dowling
Our father died unexpectedly in 1998, just a few months before his 80th birthday. He'd always planned to be buried alongside our mother and other ancestors in Stamford, in a plot purchased by his great grandmother in 1865 at Long Ridge Union Cemetery. After he died, my siblings and I buried him there. We did so ourselves, without using the services of a traditional funeral home.
Planning and performing our father's burial was a spontaneous, intimate, and more gratifying act of love than any of us imagined. Under Connecticut law, it would have also been illegal -- except for a loophole in the statutes that applied to our case. The lessons we learned in burying our father were instructive, and of special significance to Connecticut residents. Here is our story.
It began in a Massachusetts hospital, where our Dad lay in a coma resulting from complications following arterial surgery. Years earlier, he had executed an advance directive and appointed us, his three children, as his health care agents. Because the directive specified that our Dad did not wish life support to be administered if he was in a vegetative state, we carried out his wishes. When the hospital disconnected all equipment and made him as comfortable as possible, we waited for him to die.
While we were with our Dad in the hospital, I became desperate for information and guidance -- hardly knowing what questions to ask. In recent years I had begun researching how one goes about purchasing funeral services, and the various options available. I was impressed by a pamphlet I came across on the subject, written by FCA -- so I called the national FCA office from the hospital.
I explained the situation to associate Ella Bracket and executive director Lisa Carlson, and wondered aloud what we were going to do. Their sensitivity and kindness were a dry anchorage in a terribly stormy sea. As Ella and Lisa asked compassionate questions, I explained that our Dad was a conservative and simple man, and that we did not want to make any elaborate arrangements for his burial. The time they gave me on the phone provided much more than the information I was seeking. They helped me realize that we had both options and advocates available to help us - that we were not at the mercy of a funeral home.
The words Lisa Carlson spoke that day changed the lives of my siblings and me. She told me that "Some families find that transporting and caring for their own dead can be a very intimate and fulfilling way to honor their loved ones." The thought had never -- and would never have -- occurred to us! From the moment Lisa spoke those words, our family could think of no other way of caring for our Dad that would have been more intimate or more honorable. So we began making the arrangements.
Lisa explained that if our Dad died in Connecticut, state law required that all transportation and burial arrangements be managed by a licensed funeral director. However, this does not apply if a person dies outside of Connecticut and is transported into the state with a valid permit. Since our Dad was about to die in Massachusetts, Lisa said that we could obtain a transportation permit ourselves from the local health department, then transport his body to Stamford, pay the cemetery directly for opening and closing the grave, and handle the arrangements ourselves -- all without involving a funeral home. Lisa's counsel was very comforting to us. Her suggestions seemed to be the natural things to do, and they made a great deal of sense.
Our Dad died a few days later. We would need to purchase a casket, as he wished to be buried in one. We also wanted our Dad's body to be stored for several days after his death -- to allow sufficient time for out-of-town friends and family to attend burial services. As it turned out, we did need the assistance of a funeral home for these things -- and were blessed by the services of a consumer-friendly funeral director in Massachusetts to whom Lisa referred us. This person sold us a simple casket and a concrete vault (required by the cemetery), procured a U.S. flag and Veteran's marker, and stored our Dad's body for nine days. Our cost for all of this was $750.
As we arranged for a burial transportation permit in Massachusetts, we learned that our journey would not be as easy as we had thought. The Health department in the town where our Dad died refused to issue a permit to us. I called FCA immediately, and was referred to Byron Blanchard, an FCA board member who had been instrumental in changing Massachusetts law to allow families to transport their own dead. Byron explained that the town's refusal to issue us a permit was not in accordance with the new law. He then referred me to the director of the Massachusetts state health department, whom I phoned at his home on a Saturday morning. This person called me back within ten minutes, and said our permit had been issued.
Driving his family's mini-van, my brother transported our Dad's casket, draped in the U.S. flag, from Massachusetts to Stamford on the morning of his burial. I had arranged for the cemetery superintendent to open our Dad's grave, and understandably he was quite resistant to do so without the involvement of a funeral director. I assured him that we would give him a legal burial permit issued by Massachusetts, and a check in payment of his fee. Family members placed our Dad's casket on the lowering device, and we conducted our own funeral service with 50 people in attendance. It was natural, heartfelt, and fitting. Flowers consisted of three white roses-one representing each of his children. We lowered the casket and roses into the ground, as a bugler from the local American Legion chapter played Taps.
The way in which we cared for our Dad at the time of his death brought our family closer together and created exceptional memories that we will cherish always. We would not - and could not - have honored our father so fittingly without the steadfast support and unselfish assistance of the people of FCA. But our case was an exception: if our Dad had died in Connecticut, state law would have prevented us from doing any of this. As detailed in Lisa Carlson's book, Caring for the Dead: Your Final Act of Love, Connecticut laws are among the most onerous and conflicting in the U.S. Perhaps with the interest and support of chapter members, FCA-CT and the national office can begin working with the Connecticut legislature to change this-so that other families, if they wish so, can experience the love and intimacy of caring for their own dead.
by Jean T.D. Bandler
Funeral directors tend to urge a "full" funeral as a necessary part of the grieving process, essential for survivors to "deal with afterward", and to come "to closure" on death. The mortician/poet Tom Lynch feels that a service without a body is "like a baptism without a baby". Such comments are ironic from an industry specializing in euphemisms ("the departed, slumber room, interment, cremains, memory picture"), but the intent is to spare no expense in arrangements and last rites. This is fine if one truly wishes and can easily afford embalming, cosmetology, viewing, casket, vault, floral displays, hearse, cars, and a program run by a funeral director. Many, however, want simpler and more economical arrangements - a direct burial, a cremation, or a medical donation.
Many also prefer ceremonies that engage and involve the participants in mourning a death, honoring a life, and comforting the bereaved. Rather than relying on prepackaged ideas and the direction of an undertaker, we recommend a personalized service, whether funeral or memorial, planned and directed by loved ones. This means active work, not passive attendance, with an involvement that melds sorrow and joy, death and life, past and future.
It may be tempting to plan one's own service, both to spare kin the sad details and to ensure that one's wishes are followed. ("For who else knows my life better than I") These are good reasons to specify the type of arrangements for the disposition of the body, but less valid for a memorial or funeral service. Here, the major purpose is to help survivors face the death, grieve, remember, and begin to go forward. It is wise, therefore, to give only general wishes and to leave the planning, specifics, and details to one's loved ones.
A memorial service, held after the arrangements for the disposition of the body, helps to focus attention on the life and values of the deceased rather than on the dead body. The planning is done by family, a few close friends, and clergy. It is a time for beginning reminiscences, for broad outlines of when, where, who, and what is most appropriate. There are no set formulas or wrong answers. Some wish a service shortly after the death to mark a formal recognition of mourning; others prefer waiting a few weeks for reflection. A good suggestion is to set a time that is convenient for most, as a weekend or an evening. It is also helpful to pick a place that is appropriate to the person and fits the number of attendees - church, temple, meeting house, union hall, library, living room, park, or meadow. (A memorial service for an avid golfer was held on the golf course.) And, the service is not a time to settle grudges or exclude an estranged person, so try to notify all family, friends, and colleagues.
Memorial services may be formal or informal. Usually either a religious leader or friend presides to start the service, set the tone, and close the ceremony. Quiet music, live or recorded, as people gather and leave may be used, and often there is music during the service and singing by the congregants. Music, whether classical, folk, or pop, should reflect the interests of the person who died. Readings are helpful and can be drawn from poetry, the Bible, the classics, and the deceased's own letters and writings. There can be one or more designated speakers, family and friends, for eulogies and reminiscences, or, in the Quaker custom, an open forum of unprogrammed reflections and remembrances. (Here, if many are unfamiliar with this tradition, some advance notice is useful.) Speakers can use humor, describe frustrating incidents, touch on problems. They should avoid grandstanding, sentimentality, and idealized descriptions. And, most important are the unique qualities of the deceased that illuminated the life, live on in memory, and provide inspiration. The point is, as Rob Baker writes, "to encapsulate a life in a few words: to pare down the excesses of feelings or details to those that capture the person fully, yet concisely."
A reception after the memorial service is a good time for informal visiting and continued reflections. Light refreshments or a meal may be served. (A favorite spaghetti and meatball recipe was served at one reception). Many families also have a table of photographs and memorabilia.
Earnest Morgan notes that a memorial service meets many needs by deepening spiritual life, offering emotional support, reestablishing relationships, reaffirming values, and continuing the best ideals of the deceased. Rob Baker writes that "memorial services help you confront your loss and keep alive the memory of those who have died." To Morgan , in a memorial service, "the spirit and ideals are alive and growing in each of those present".
A memorial service is an affordable and dignified way of mourning a loss, recalling a life, and renewing a commitment to shared values.