Helping to Plan for What Needs Done at the End of Life

BY ROGER C. BONE, MD Reprinted with permission.

Since death is considered a "morbid" subject to be avoided at all costs, as we discuss in the next section, too often the plans for what will happen are left to the family. But the family may not know how you would like things to be done at the end. Therefore, in addition to When You're Too Sick to Make Decisions (in another section), this article by a physician who wrote Reflections: A Guide to End of Life Issues for You and Your Family while facing his own death, can help you begin thinking of what you want so your family is not left wondering and important details are not left until the very end. We are thankful to the National Kidney Cancer Association for permission to reprint this material.

Dr. Thomas Attig, an expert in death, dying, and the grieving process, has written:

Those who suffer losses are affected in all dimensions of their lives. Grief is at once, physical, emotional-psychological, intellectual-spiritual, and social. This pervasive impact can shake the foundations of self- understanding and orientation in the world and pose significant challenges to personal integrity and to the perceived meaningfulness of continued living.

At the very end of life, there is often a shift in emotion from the terminally ill patient to his or her family. For most of the dying process, the focus is on the patient. Family members and friends must try and be the steadfast rock to which the patient may attach an ever tenuous anchor. But, I have often observed how the roles are suddenly reversed. The patient, now at peace with dying, becomes the anchor to which the tired and frazzled caregivers affix a last line.

Dr. Attig is correct that grief becomes an all-encompassing emotion and there is only so much a terminally ill person can be expected to do to convince inconsolable family members and friends that everything is fine. Nevertheless, one of the patient's last acts can be to convey a sense of love and appreciation to those around him or her. This is important because it provides the patient with a last meaningful act. After weeks and months of being examined, medicated, and cared for like a baby, the patient can still perform an act that no one else can do for him or her. The patient can say "Thank you" and "I love you" and "I will be okay" and "Please remember me but get on with your own life." These words effectively take family and friends "off the hook." It helps to alleviate the sense that there was something more that could be done or they somehow failed the patient.

The final stage of death is a mixture of peace and lingering fear, hope and final despair, technology and no technology. Patients find it hard to believe that family members will be able to continue without them, yet also want to guarantee their survival in any way possible. Days stretch out endlessly, yet it also seems like there is no time left.

The following is a discussion of end-of-life issues that need to be addressed; however, many of them should not necessarily be taken care of at the last minute.

The Funeral

Funerals fall into the same category as wills, which were discussed in an earlier chapter [see Monetary Considerations]. A funeral must be planned and arranged for just like a will. Outside advice must be sought. All sorts of decisions of varying importance must be made. Yet for all the business involved in this process, the need to go through it is another depressing "FINAL" signpost on death's road. In other words, when you start planning your funeral, a big chunk of hope is broken off.

However, a person can be buoyed and comforted by knowing that a funeral is a way of making a final statement. Pre-planning with a funeral home can save money, time, and much uncomfortableness for you and your family at the time of physical death. Also, you can decide on how you want the funeral prepared and carried out. The unique jazz funerals on Bourbon Street in New Orleans are an American tradition that exemplifies the celebration of someone's life. The same can be said of an Irish wake. On the other hand, you may wish for a very formal religious ceremony; a high funeral mass, for example, in the Catholic Church. Many people are choosing a memorial service instead of a traditional funeral. Whatever one's history or religion, a funeral proclaims his or her life, accomplishments, personality, and beliefs.

Funerals in the United States usually cost several thousand dollars or more depending on your chosen details. Cremation or even a modest service at a funeral home with a casket and cemetery plot amounts to a considerable amount of money. It is important to remember this is money well spent to assure peace of mind for both the terminally ill patient and his or her grieving family.

One thing to count on is that you will not be alone when it comes time to plan the funeral and/or church service. The funeral director and your religious guide, whether he or she is a priest, rabbi, minister, or family member, has been through the ceremony before and can offer valuable advice and suggestions. However, one cannot forget that unlike the religious guide, the funeral director is a businessperson who will make more money depending on what services you choose.

The selection of a funeral director is critical. The funeral home industry has greatly reformed itself since the 1960's when there was a series of books, articles, and films that uncovered corrupt practices in the industry. Still, "buyer beware." If the family does not have an established funeral home from past deaths, the best advice is to ask friends for a recommendation.

A short list of funeral/religious service suggestions for the patient's family includes:

1. Check out all expenses and make sure they are in writing. This includes everything, such as the funeral home, limousine, caterer, place of worship, and other miscellaneous services. For example, many people do not realize they need to pay for certain items associated with their place of worship. For example, reserving extra chairs or scheduling a gathering after the service may be an additional cost.
2. Inform the funeral organizers of special requests, such as your favorite music or personal readings, well in advance.
3. Notify pall bearers if needed.
4. Make certain special friends or distant relatives are notified of the patient's death. Not everyone sees obituaries (see below) or hears the news.
5. Out-of town family and friends require special attention. Even though it may not be appropriate, the fact remains that a bereaved family is often suddenly burdened with people expecting to stay at their house.
6. Make sure you find out what else is going on at the place of worship, funeral home, or even in the city on the day of the service. A funeral scheduled with no time cushion right before or after a wedding may cause some embarrassment. Or, trying to maneuver a funeral procession around a St. Patrick's Day parade may also be frustrating,
7. Cemetery selection may or may not be a critical issue for a family. Often, there is already a designated plot or only one graveyard in the town and no need for any discussion. Otherwise, choosing a cemetery is something the terminally ill person can and should participate in well ahead of time. Similar to the selection of a funeral director, purchasing a plot is a business arrangement that should be treated as unemotionally as possible. Be alert to hidden costs, such as yearly upkeep fees. Your friends or religious guide can help with this decision. Again, do this early. It is not something that should be decided on at the last minute.

The Body

Although a somewhat morbid topic for most people, as a physician I feel an obligation to briefly discuss what happens to the body after death. Although many terminally ill patients' bodies are too racked with disease to qualify for organ transplantation, there are circumstances when it is possible. In this case, depending on the recommendation of the attending physician, I would urge everyone to participate in organ donation. It is an opportunity to make a last meaningful contribution to society. Along similar lines, a person may be interested in donating his or her body to a medical school to further education.

Throughout the history of mankind, the two most common practices for disposing of bodies have been cremation or in-ground burial. In David Carroll's Living with Dying: A Loving Guide for Family and Friends, an exceptional book on death and dying done in a comprehensive question and answer format, the author compares the pros and cons for both of these options. He notes the purity and psychological finality of cremation, but acknowledges that some people find it too violent an action to inflict on their loved one's body. A cremation, nevertheless, is considerably less expensive than a burial. On the other hand, in-ground burial is more traditional and a cemetery provides a place of mourning for family and friends. However, a decaying body is not a pleasant image and cemeteries are not necessarily permanent. It is not unheard of for cemeteries to be in the way of roadway construction projects or fall victim to natural disasters such as floods, tornadoes, and earthquakes.

Again, whatever choices are made, the terminally ill patient and his or her family should discuss their options openly and frankly so the appropriate arrangements can be finalized in a timely manner.

Official Business

When a person dies, the subsequent official or legal matters generally fall into two categories: those that are urgent and those that can wait. Activities that can be dealt with at a later time involve the reading of the will and the allotment of insurance money. These are anticipated events and can be executed in the weeks or even months following the death. In fact, unless there is some particular pressing reason, it is best to wait and allow the survivors to recover and regain their composure.

However, there is some business that needs to be done immediately and cannot be put off. An official death certificate, which is signed by the attending physician, and other paperwork needs to be completed by a designated family member. At some point, someone, often the funeral director, will ask how many death certificates the family needs for their records. These usually cost only a couple of dollars each. It may seem like an odd and unexpected question; however, original death certificates are required by many different financial, government, and legal organizations, and it is best to order a sufficient number. For example, insurance companies, investment firms, and banks all need original certificates. Copies will not be accepted. It is time consuming and difficult to "reorder" more, so surviving family members should be certain to order enough.

When the terminally ill person is ready, he or she should consider composing an obituary. Most of us have read one and are familiar with its contents. An obituary serves a variety of purposes, but its primary aim is to announce the location and time of the funeral. In addition to listing information concerning memorials or donations on behalf of the deceased, it is a brief tribute to a person's work history, military record, hobbies, interests, volunteer activities, and survivors. It is also a historical document that acts as a permanent record of a person's life and, for a number of reasons, may be researched fifty or a hundred years from now. Lastly, business associates, debtors, creditors, and colleagues, are notified officially of your death.

The obituary needs to be mailed or delivered immediately after the death to all local newspapers, and maybe hometown dailies. People are usually surprised to learn that they generally charge per inch of copy and extra for pictures to print obituaries. However, they will publish a simple death notice for free. Also, copies of the obituary or death notice should be sent to distant relatives and organizations that have an interest. School alumni organizations and veteran groups are two examples.

Your survivors should know that airlines often give discounts to individuals who are traveling because of a death in the family. They often require an obituary and/or a death certificate as proof.

If you share a safe-deposit box with someone else, or own one outright, be sure to examine its contents or close the account when you are still able to do so. A good time would be when you are organizing your financial and/or legal affairs. Otherwise, the safe-deposit box is sealed until the death notice is processed and eventually can only be opened in the presence of a bank official. As a result, family members cannot access critical papers without a great deal of hassle. An alternative is to add a "joint owner" to your account. He or she will be able to deal with the contents of the box after your death.

A final point to be made under "Official Business": in this day of mass mailings, a terminally ill person will continue to receive mail for years after his or her death. This mail can become emotionally upsetting, as well as just plain annoying, for your survivors. One option your family has is to return the items and request that your name be removed from the mailing list. Unfortunately, this proposition is expensive and involves an inordinate amount of time. It is a little like commanding the ocean waves to stop beating on the shore. Companies are obliged by law to delete names when ordered to do so, but your family can never reach everyone. As long as a name is out there on just one list, it will be duplicated and used over and over again. It is probably best to ignore the problem and deal with it in the best way possible.

Closure

You may want to make a special effort to tell your relatives and caretakers that you love them if you have not done so before. Your family and friends may find it helpful to write to you. It would certainly be appropriate for anyone you have had problems with in the past to write you now to reconcile your differences, so you may achieve some type of closure. This is your last chance not only to thank those people who have gone above and beyond your expectations but also to reconcile past arguments.

An Elegy

An elegy is a poem or song composed as a lament for someone who is dead. Elegies have fallen out of favor in modern times and I think that is too bad. Why? Because it allows the writer and his or her audience to offer a final good-bye to a loved one. It also provides a moment to pause and think about what the deceased meant to him or her.

In his own introduction to one of the great elegies in English literature, "Adonis," the romantic poet Percy Bysse Shelley, concludes by talking about the final resting place of the poem's subject. Shelley calls it "...so sweet a place." At the time of death, it is what I wish for myself and for everyone else — hat we will find comfort and peace in "...so sweet a place."

©1997, National Kidney Cancer Association