Newsletter Articles

by Stuart E. Rapp

When I walked into the kitchen from some errands in mid-morning, my wife held up a scribbled message while talking quietly but urgently on the phone. "Danny was killed in an auto accident early this morning near Frederick, Maryland" it read. My second son was calling about the sudden death of his older brother. Certain as death is to us all, probably nothing else can deliver its numbing shock. That fact is what can make our FCA services so valuable, at the very time when we are the least emotionally prepared, no matter how "ready" we planned to be.

Arriving at my son's home near Washington, DC, before midnight, I managed a few minutes alone with newly-widowed Julie, apart from our extended family. We both sensed what difference a few minutes of planning would make in the rest of our time together.

And indeed it did. Julie had already largely decided that she preferred cremation to other practices, and a family-based memorial gathering rather than a funeral home or traditional church-based funeral. I told her of the resources I had discovered through my membership in FCA of CT, and that, if she wished, I could explore them here for possible sources of help. She readily agreed.

By next morning, we had found the "yellow pages" entry for the FCA affiliate in her area. I left a message, identifying myself as a FCA member and Board member in Connecticut. We received a helpful callback from the emergency contact and learned from him about a well-reputed cremation service and a nearby church with appropriate facilities.

The cremation service responded to Julie's call, visited her in person and patiently explained their services and options. Julie asked them to handle the securing and disposition of Danny's body, which they did, in cooperation with a local crematorium. The service also supplied all legal documentation and personal delivery of the ashes in a plain but durable container. This enabled Julie to share the scattering of the ashes with closest family members.

The cremation service met all these needs with promptness, courtesy and reasonable cost. The use of these services - and those of the religious facility and leadership - resulted in expenses more modest than comparable functions of a standard funeral establishment. Naturally, these choices vary depending on family preferences and requirements at time of death.

As luck would have it - and there was some luck involved - a helpful minister was available to lead the memorial service, and the church welcomed us into their large fellowship space for a beautiful and memorable celebration of Danny's life by family, co-workers and close friends. First, a gathering time enabled far-flung family and friends to greet and share their grief. In the background was a photo montage; a long video loop, prepared by closest co-workers, used Danny's favorite music as the sound track and showed images from various family albums from Danny's birth to the present.

The minister represented the non-doctrinal part of the religious spectrum, so that the service concentrated on spontaneous words of love and recollection from those closest to Danny. These concluded with a simple and beautiful appreciation of his father by son Nathan, the most moving words of all. The minister surrounded these "last tender offices of faith and love" by readings from the Scriptures and concluding prayers. An informal time with refreshments followed for those who could remain.

The luck I mentioned had to do with the dovetailing of availability and time in this case, which nothing can guarantee. The FCA affiliate, however, fully lived up to its own guarantee. It helped us cope with the experience of death at reasonable cost, while enabling the family to maintain its own dignity and that of the one who had died. I now realize, more deeply than before, why membership in FCA is such a valuable asset in our end-of-life planning.

by Craigg McRae

On May 12, 2004 my son Tom had a car accident which left him brain dead with no hope of recovery. After 18 hours of agony watching him kept alive on various machines and having numerous tests to see if there was any brain activity at all, Tom's mother and I gave permission for the hospital to declare him dead. He was 16 and had received his driver's license only four months before. While I was in favor of organ donation, for sentimental reasons his mother was not. What turned the decision around was the fact that Tom had volunteered his organs to be donated when he received his driver's license. This in no way obligated us, but it was comforting to know that Tom had considered this possibility before his death. He had told a friend he would sign up but, of course, never expected the gift to be used.

While Tom's lungs, spleen, and liver were not eligible for donation due to injuries sustained in the crash, he did donate both kidneys, his heart, his eyes, and much skin for burn grafting. Tom's left kidney was transplanted into a 49 year old married mother of two daughters who had end stage renal disease. Tom's right kidney was transplanted into a 33 year old married father who had been receiving dialysis treatments for nine years. Tom's heart was transplanted into a 30 year old mother of two small children.

The fact that parts of Tom are helping many others helps make this tragedy bearable. He was a great kid with a zest for life.  While God controls these events, I know that His taking of Tom at such a young age was to see how we react and what acts of love we initiate as a result. Tom's soul is intact and the memories of him stay alive in our hearts and minds forever.

I strongly encourage everyone to seriously consider organ donation because of the lasting gifts it brings - gifts of life to the recipients and gifts of love to the bereaved.

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.

Advanced Directives

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:

  1. 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.
  2. 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.
  3. 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!)

Medical Directives:

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.