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Choosing Life: Living Your Life While Planning for Death
Ernest H. Rosenbaum, MD; Isadora R Rosenbaum, MA; Debra Marks, PhD; Sabrina Selim, MD; Thomas Addison, MD; Joanna Beam, JD; Meryl Brod, PhD; David Claman, MD; Alan J. Coleman, MD; Malin Dollinger, MD; Michael Glover; Alexandra Andrews, Nancy Lambert, RN, BSN; Elmo Petterle; Patricia Sparacino, RN, MS, Jeffrey Silberman, Dmin; Kenneth A Woeber, MD
Choosing Life: Living Your Life While Planning for Death
How You Can Help Your Survivors
Persons to Notify
Arrangements for Your Body
Assets and Liabilities
Home and Personal Inventory
Your Personal or Ethical Will
Despite the inevitability of death and the importance of planning for tomorrow, the purpose of life is to live. The diagnosis of an acute or chronic illness doesn't need to be experienced as an automatic death sentence; it can be viewed as an important reminder to "live each day as if it were the last."
The uncertainties of living with an illness can make life all the more meaningful. The smallest pleasures--flowers, the sky, sunshine--are intensified. It is a time to do things you have always wanted to do and to make peace with your family or friends.
Death eventually comes to us all. But we can choose the way we live our life--and, to some extent, the way we die. One remarkable example of a good death is that of the national hero Charles Lindbergh, who died in 1974. After being diagnosed with a lymphoma in 1972, he continued to live actively while undergoing radiotherapy and chemotherapy. He hoped that his life and death would reflect his simple birth and that they would serve as a memorial for his children and grandchildren. He returned to his home on Maui in Hawaii where one of his doctors (Milton M. Howell, MD, in The Lone Eagle's Last Flight, Journal of the AMA, May 1975) noted the following:
"In time, he made appropriate legal arrangements for his burial there and selected the site of his grave. Systematically, he arranged his personal affairs, and yet he maintained a sense of the past and an interest in the present. He planned for the next major event in his life, but it did not become an obsession."
He planned ... [the] construction of his grave with a simple coffin. He planned his funeral services along with his family and requested that people attend in their working clothes. There was time for reminiscing, time for discussion and time for laughter. When he lapsed into coma he wanted no respirator, defibrillator (for electric shock) or other complicated paraphernalia. He received excellent, prompt responsive nursing care, oxygen when needed, a minimum of analgesia (for pain), and a great deal of love and consideration from his family and the medical staff (at home).
He stated that he wished his death to be a constructive act in itself. His example of simplicity, his careful planning, his unfailing politeness and consideration for those around him, his public refusal of medical heroics, and his humble funeral are evidence of that wish. Death was another event in his life, as natural as his birth had been in Minnesota more than 72 years before.
Your legacy of love for your survivors can, with careful thought and compassion, be one of clear decisions and planned arrangements--a house swept clean of personal, financial and business cobwebs. By sorting out your affairs now, you can spare your survivors an inheritance of scattered papers and countless details to be waded through. Instead, you can bequeath to them the gifts of clear direction, rich memories and unique insights.
The processes of dying and death dictate many decisions that must be carried out by your survivors, typically at a time of great stress. They often have to come up with answers to troubling questions--such as what last-minute medical treatments to accept or reject on your behalf, whom to notify if you die, what arrangements to make to tend to your body and pay tribute to your life, which resources to turn to in order to settle liabilities and disperse assets, and what memories to embrace in order to best remember you.
By taking time and care now to attend to each of the following areas of importance, you'll be providing benefits to yourself and those you love. In the short term, you'll reap the benefit of peace of mind, which comes from organization and control of your affairs, and in the long term, you'll know that what will be done is what you would have wanted.
Before considering the areas listed below, first plan where you are going to store this information file so that those who will need it will know where to find it and will be able to find it easily. Then be sure to tell those who need to know about its location. You might consider putting the most important legal documents in a safe-deposit box, but be sure to tell those who need to know that this box exists, where to find the key and how to gain access to the box.
Today's realities dictate that unless there is an Advance Directive, your doctors may feel obligated to do whatever is necessary to keep you alive. Sometimes these actions may result in considerable pain and suffering for you as well as emotional suffering for your family and close friends. Other times, these procedures do not prolong meaningful life, but merely delay death.
Decisions about Advance Directives and when to perform CPR are not simple and may depend on the type of medical condition you have. Many people clearly do not want extraordinary treatment in hopeless situations but may accept such treatment in acute but potentially reversible situations. For instance, using a mechanical breathing machine to treat pneumonia after an operation is usually temporary and may help recovery. The potential risk and benefit of these treatments depend on many factors, including the patient's age, type of illness and other chronic medical problems.
Standard Advance Directives can sometimes cause confusion and need to be discussed with your family and doctor. They should be re-evaluated after each new illness. An acute disease (such as a heart attack) may be reversed by CPR, whereas advanced incurable diseases (such as terminal cancer, severe refractory heart disease, resistant infections, emphysema or kidney failure that can no longer be treated with medical therapy) may instead be best treated with comfort care (care that is aimed at keeping a person comfortable, but does not treat an illness; this may include bathing, nutrition, fluids, massage and pain medications). Different types of general statements are useful with different types of illnesses--especially with regard to the reversibility of a condition. One example might be the following: "I will accept life-supportive treatments for acute potentially reversible conditions that are very likely to be treated successfully and that are likely to result in full recovery and a return to independent life." Here is a more conservative example: "I prefer that all care be directed at comfort and that life-supportive treatments not be used." These directives are often very helpful to physicians and families.
By completing a Durable Power of Attorney for Health Care form or a Natural Death Act Declaration, you are providing both your family and your health care team with guidance about your decisions. A copy of this directive should be given to a family member and to your doctor for inclusion in your medical record. It should be included in your hospital record if you are hospitalized.
Be sure to include the name, address and phone number of your primary care doctor and any other specialists in this medical information file.
Preparing a will is one of the most important responsibilities you have. Make this a priority. Should you die without a will (called dying intestate) or leave an invalid will, state laws will govern the distribution of your estate. Your estate might wind up being administered by a total stranger appointed by the court. Should both parents of a child or children die without a will, a court-appointed guardian takes custody of any minor children and of the parents' estate.
Preparing a will encourages you to assess your financial situation and to ensure that your property, savings, benefits and assets will be managed according to your wishes. In most cases, you will need a lawyer to guide you and protect your estate. The laws concerning wills are complex and vary by state.
Writing your own will, though, is better than leaving none at all. An entirely handwritten (holographic) will, signed and dated by you, can be binding and enforceable. California accepts holographic wills, but not all states do.
Be sure to review your will periodically to keep your information up to date. If you divorce, separate, or remarry or if the status of your named heirs changes, be sure to revise your will appropriately.
In considering your will's contents, be prepared to include information about an executor (the person you name to carry out the terms of your will), your children, anyone you wish to disinherit, your assets, tax implications, gifts, trusts, revocable living trust (talk to a knowledgeable person about the advantages and disadvantages of this technique to avoid probate), life insurance and charitable contributions.
Include the names, addresses, phone numbers and email addresses of doctors, attorneys, employers, relatives, friends, business associates, the executor or trustee of your estate, religious and social organizations and anyone else who should be notified of your death.
It is important to make decisions regarding organ donation, burial, cremation and donation of your body for scientific research, and then make appropriate plans based on those decisions. You might want to compose your own inscription to appear on a headstone. It is wise to select and designate the plot, location and mortuary of your choice in advance.
Note: If you wish to donate your organs, fill out the appropriate places on your driver's license and the Medical Emergency Wallet Card.
What would you like your local newspaper to say about you? You can help your family by providing information about your place of birth, career background, education, special achievements, military service, involvement with organizations, hobbies and memorial contribution preferences.
Your clergy can help provide guidelines regarding mourning or burial rituals. If you know the type of service you want (for instance, public or private), where the service should be held, what music should be played, who should officiate and so on, this is the time to spell out your preferences in writing. Be sure to notify the appropriate family member or friend who would need to know this information.
Survivors may be entitled to benefits you've earned or provided for. These may include benefits from life insurance, pension and profit-sharing plans, including Keogh plans, IRAs, Social Security, Medicare, supplemental medical insurance, Veterans' benefits or Workers' Compensation benefits. Assemble this information and mark it clearly. Provide account numbers, contact names, and addresses and phone numbers, if possible.
This section of the file should include information about bank and savings and loan accounts (including T-bills and CDs); investments (stocks, bonds and investment funds, including money market accounts, mutual funds, government securities, limited partnerships and annuities); real estate (your home, investment properties, and other assets); notes, first or second mortgages (that you owe or that are owed to you); other liabilities (including home mortgage, investment properties, and business, auto and personal loans); and any recommendations about investments for your survivors.
Provide information on insurance policies for your home (whether you own or rent it) and auto. Record the addresses of all insured properties and the license numbers of all insured cars. Provide the documentation for each insurance policy as well as contact names, addresses and phone numbers.
An inventory is a practical way of listing your belongings, identifying each item, specifying its location, estimating its value and naming the heir to whom you're giving it.
Use this opportunity to give away items you're not interested in keeping--donate usable items to charity or have a garage sale. You may want to give away some of your belongings now to your family or friends and take advantage of the opportunity to see them enjoying your former possessions.
Create a paper information sheet and a backup disk containing your passwords and logins for your personal computer, website and email accounts. Keep copies in a safe place, for instance a safety deposit box. Let your executor know where this vital information can be found. Make sure these logins and passwords are not easily accessed on the web or can be hacked from another computer.
This is a rare opportunity to take the time to express your innermost thoughts. You might want to write a personal note to your loved ones or specific personal messages to each of them. You might want to record your thoughts on audiotape or videotape. This is your most meaningful legacy--it expresses who you are, records your autobiography and reflects your life philosophy. The thoughts you share here will provide a lasting and precious memory for your survivors. Include anecdotes, favorite quotations and philosophies. You might also want to include any diaries, pictures or journals you'd like to pass on.
You may wish to make a log booklet or a tape recording of your life history. Talk in depth about your early life experiences, beginning with your youth. Recount memories of parents, grandparents, aunts, uncles, siblings, children, friends, neighbors, colleagues and pets.
Leave a rich family history by providing a family tree. This is also a good time to map out a family medical tree. Write down any medical conditions that you or your relatives may have had--this can be valuable information for your family now and for generations to come.
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