Cancer Therapy – Planning for the Future
The chances for living a long and healthy life are now greater than ever before. Age is just a number that measures time. As George Burns said, “You’re not old until the candles on your birthday cake cost more than the cake.”
Today, we have better nutrition, better physical fitness, improved living conditions, new drugs, and new advances in medical science such as transplants, bypasses, and other life-prolonging discoveries. More and more cancers are becoming curable when they are diagnosed at an early stage. Cancer treatment techniques are constantly being developed, and new therapies like immunology and genetic engineering are holding out the prospect of curing more cancers in the future.
Yet living with cancer remains a fearful, anxious time despite all the promise of medical advances. No matter how well informed you are about your cancer or all the therapies that might be used to treat it, you still feel some loss of control over your fate. You put your life in the hands of specialists and live in uncertainty, hopeful one day, gloomy the next.
Although living with uncertainty may seem uncomfortable, it does allow room for hope and positive thoughts. You may discover that life can be more meaningful. Little pleasures can become very important. You may even begin to “stop and smell the roses.” Once any anger or bitterness about having cancer is put aside, you will find there is still tremendous room for enjoyment.
And, if you are like many other people faced with uncertainty, you may get your life in focus with more clarity than you have known before. Thinking about their own mortality, perhaps for the first time, many people decide to make plans for the future if the best happens or if the worst happens. In either case, the act of making plans wonderfully concentrates the mind. If you make that decision yourself, the act of planning will let you face the uncertain future with clarity, simplicity, and the comforting knowledge that your affairs are in order and that as few things as possible are left undone.
Your Legacy of Love
We all know that at some time death will take us. And each of us makes—or should make—some plans for when the time comes. Most of us buy life insurance to provide financially for the people we love. We make wills so that when death occurs, there is a clear plan for the distribution of our earthly possessions.
But beyond these basics, few of us take the time to prepare in detail for the time when we are no longer around. Making such preparations isn’t pleasant. In some ways, it may be very difficult. It is something that we often put off, partly because we all consider ourselves immortal or too young to worry about death and all its implications.
But to avoid discussing or thinking about it only puts off the kind of planning that really should be done. The burden just passes on to our survivors. More than 90 percent of survivors in America are unprepared to handle the responsibilities and immediate needs when a loved one dies.
Making Your Medical Choices You should discuss with your physician any concerns you have about how your medical care should be delivered, especially during a medical crisis. In the event of a sudden drastic complication, such as a heart stoppage or cessation of breathing, hospitals are often legally required to “call a code,” to resuscitate you with cardiopulmonary resuscitation (CPR). This is sometimes called a Code Blue. Many health care givers also believe they are morally and professionally obligated to call such a code.
Code status varies, however, and it is important to consider how far you want your physician to go to attempt resuscitation should a crisis occur.
• Full Code means that treatment and support will be very aggressive, with the use of cardiac resuscitation, breathing tubes (intubation), and machines.
• A Chemical Code calls for a less aggressive plan. Drugs and intravenous treatments will be used to save or prolong life, but if breathing or the heartbeat stop, no attempt will be made to restart it.
• If you agree to a No Code status, no extreme measures will be used for life support and resuscitation.
The decisions about what life support measures should be taken should be made by you in advance of a hospitalization or major illness. Then make your wishes known. This can take the form of an advance directive, a paper you fill out in advance with your instructions in case you have a serious illness and are not able to speak for yourself. There are also documents called living wills and durable powers of attorney. (These decisions can be reversed at any time.) These will protect you as a patient even if you are unable to convey the information at the appropriate time. They will also protect your family from the stress of making sudden medical decisions for you.
The best way to define the code status you wish and ensure that your wishes are followed is through written documents.
• A living will should include your decision on the extent of treatment in the event you become so seriously ill, you might die. You may amplify the living will with a codicil or statement of your wishes for additional pain and comfort care if the end is near and the primary goal is keeping you comfortable under all circumstances. You can include a written request for adequate doses of morphine or sedatives, for example.
• Durable powers of attorney should include a summary of your wishes on limits to preserving or extending life. Those responsible for monitoring and delivering your health care can then act in accordance with your wishes should you become physically or mentally unable to make your own medical decisions.
This information should be in the medical file kept by your doctor and in your hospital record. Always carry in your wallet a medical emergency information card containing all vital information about codes, diagnoses, and any medications you take. In some states, the code status request can be included on the driver’s license organ donor card.
Planning Tools A book by Elmo A. Petterle called Getting Your Affairs in Order (Legacy of Love) (Petterle Publications, 3 Greenside Way, San Rafael, CA 94901) is a practical guide on how you can make life easier for the people you leave behind. Its objective is to approach the problem of potential death with compassion and sensitivity. The book was designed for everyone—young, old, rich, poor, married, single, healthy, and ill.
It was not written to scare you into thinking that your time is running out because of age or any other reason. It is simply a strategic planning tool, a workbook you fill in yourself. It deals with realities in a very practical and organized way so that your survivors know what they need to know and are properly instructed and prepared for what has to be done.
• The book introduces you to the material you will be working on, including how to start planning for your beneficiaries. It gives advice on will preparation—on what you have to do, what the priorities are, and what is not important.
• It covers the details on how you wish to be cared for if you become very seriously ill, including a living will and durable powers of attorney.
• It gives advice and a place to fill out your instructions about your choice of a cemetery or other resting place, mortuary and funeral arrangements, memorial or other types of services, and newspaper information and advice on death benefits that are available in the United States.
• It provides survivors with a list of immediate after-death contacts and phone numbers in order of importance. This is convenient at a most awkward time. In their grief, people often don’t think clearly and may make errors such as being sold costly funeral services that might directly contradict your wishes, which should be honored.
• It also lists the proper contacts to be made within the first ten days, such as instructions for the post office or motor vehicles departments, and what contacts should be made within the first month—telephone, gas and electric, water, and waste disposal companies, newspapers, credit cards, clubs and organizations, cable TV, and other organizations that deserve to be listed.
• It provides guidance and planning space to be filled out on financial plans, any investments you’ve made, and property and casualty insurance, as well as information about home and personal property insurance. It is amazing how ill informed many people are about life insurance policies, Social Security benefits, medical insurance, pensions, profit-sharing plans, IRAs, and Keogh provisions that have often been made years before. Working through this section may give you a few surprises.
• It lets you catalog vital information on banks, savings accounts, loans, safety deposit boxes, and so on, so that this information is available when it should be.
• It gives advice on how to deal with bureaucracies that are often insensitive to the needs of people at such personal times.
• It provides necessary information about medical history that may be important to the family, as well as about family history and where personal letters can be found.
There are other tools that can assist you in your planning. One especially helpful book is The Diagnosis Is Cancer, by Edward J. Larschan, J.D., Ph.D., and Richard Larschan, Ph.D. (Bull Publishing, PO Box 208, Palo Alto, CA 94302). This book covers some of the same ground as Legacy of Love but from a different perspective, dealing primarily with the legal arrangements necessary for survivors.
Many people unfortunately procrastinate, but books like Legacy of Love and The Diagnosis Is Cancer give all thoughtful people an opportunity to lessen the pain and suffering of their survivors, simply because they love them.
Hope and the Will to Live
Like every creature in the animal world, human beings have a fierce instinct for survival. The will to live—that instinct to fight when our lives are threatened by illness or some other crisis—is a natural impulse in all of us. Yet some people are easily destroyed by the mental and physical effects of disease, while others call on inner resources to sustain them through the experience. Why do some people respond positively to suffering, while others cannot endure? Maybe the survivors have learned to be resilient by coming through earlier crises, becoming strong, tough, and confident in the process. Maybe the small flame of gritty determination that makes us keep struggling at even the lowest ebb just burns brighter in some than in others. But the most important reason may be hope.
Many doctors have seen how two patients of similar ages with the same diagnosis and degree of illness and the same treatment program experience vastly different results. And the only noticeable difference between the two is that one person is pessimistic and the other is optimistic. Hope, courage, effort, determination, endurance, love, and faith all nurture the will to live. And the greatest of these is hope. There may be times when you feel exhausted and overwhelmed by never-ending problems, when you feel ready to give up the struggle to survive. Yet if you have hope, you can carry on.
As long as there is even a remote chance for survival, as long as there are even minor improvements, hope can be kindled and nurtured. As long as your family, friends, and support team keep a positive attitude, hope can see you through any crises or times of reversal. But hope has to come mainly from within. You can have hope if you are willing to fight for your life and if you are ready to do everything you can to improve your health. Just as soldiers have a revival of mood and spirit as they march home singing from an exhausting day, so you can find new energies and new strength.
Even at the roughest times, you probably have untapped reserves of physical and emotional strength at your command. Call on them and use them to survive another day. These resources are the foundation and the source of your recovery.
Advance Health Care Directive
The following advance health care directive is a sample from the state of California. You can download your home state’s forms for free from the National Hospice and Palliative Care Organization, at www.caringinfo .org, or you can order them for free by calling 1-800-658-8898.
Checklist of Forms and Worksheets
The time to act is now: 93 percent of families are unprepared when a death occurs. Collecting key pieces of information and putting them in one place will help ensure that your loved ones are cared for after your death. Once you have gathered this information, be sure to tell several key people where it will be kept. Do not keep this information in a safe-deposit box (it will be sealed upon your death): Give it to your doctor, family, lawyer, agent (as designated by your medical power of attorney), and hospital medical records department.
In addition to the Advance Directive, consider putting together the following pieces of information (representative copies of these forms/checklists can be found in Everyone’s Guide to Cancer Supportive Care):
• Additional considerations for the advance directives (gives your preferences for specific types of life-sustaining measures, such as CPR, being placed on a mechanical ventilator, or receiving a feeding tube; depending on the particular health condition—persistent vegetative state, Alzheimer’s disease, etc.)
• A medical emergency wallet card (containing your contact information, diagnosis, and medications, as well as the location of your advanced directives and your do-not-resuscitate wishes)
• Medic Alert Service Form (access on-line at www.medicalert .org)
• Family information
• Location of records (your wills, financial statements, insurance policies, and personal records [passports, birth certificates, etc.])
• Review of assets and liabilities (bank accounts, stocks, bonds, and mutual funds, assets, loans, and mortgages)
• Persons to notify after death (clergy, funeral director, executor of will, life insurance agent, organ donation coordinator, attorney, etc.)
• Arrangements for funeral/memorial service