Jane Brody's Guide to the Great Beyond

by BRODY, JANE

• ISBN13: 9781400066544
• ISBN10: 1400066549
• Format: Hardcover
• Copyright: 2009-02-17
• Publisher: Random House

Summary

From the beloved New York Times columnist, trusted authority on health, and bestselling author comes this complete guide to everything you need to know - emotionally, spiritually, and practically - to prepare for the end of life. An invaluable road map to putting your affairs in order - or helping your loved ones do the same - this comprehensive book will answer every question you might have about what does and does not help smooth the transition between life and the Great Beyond. Wise, practical, and characteristically straightforward throughout, Brody advises on: the intricacies of a well-thought-out (and fully spelled-out) living will that health care practitioners readily understand - and how to designate a health care proxy; planning a funeral or memorial to ensure your wishes are followed, including tips on how to reduce expenses; discussing prognoses and treatment options with doctors; your options for controlling pain, shortness of breath, bed sores, and other physical symptoms - plus the facts on feeding tubes; receiving the support you need through hospice care - and suggestions for loved ones and friends who want to help; lightening and enlightening your trials by incorporating spirituality into your life; understanding what happens, physically and mentally, when death is imminent, and recognizing when hand-holding and reassurance, not food or drink or an oxygen mask or CPR, is the proper course of action; and easing your way through the journey of grief by admitting the reality of the loss, showing your emotions, and allowing yourself the time you feel you need. No matter your age or current health, preparing for the inevitable when you are still fully in control of your faculties ensures that you'll be in a far better position to enjoy the time you have left. As Brody notes, "From the start, consider the finish." From the Hardcover edition.

Author Biography

Jane Brody writes a weekly personal health column for The New York Times, which is syndicated in scores of other newspapers around the country. She is the author of several books, including Jane Brody’s Good Food Book, Jane Brody’s Nutrition Book, and Jane Brody’s Good Seafood Book. She has also written many magazine articles and frequently lectures on health issues to audiences both lay and professional. She has appeared on hundreds of radio and television shows and has received numerous prestigious awards for journalistic excellence.

Table of Contents

Preface	p. ix
Prologue: End-of-Life Issues Are Not New for Me	p. xvii
Get Ready Now For the Great Beyond	p. 1
Death Is Inevitable: So Be Prepared	p. 3
A Good Death: There's More Than One Right Way to Die	p. 9
Accepting the Patient's Terms	p. 11
When the Patient Is Prepared	p. 13
When Death Is Sudden	p. 15
Help from an Advance Directive	p. 16
Even a Good Death Can Sting	p. 17
What Most Patients and Families Want	p. 18
Advance Directives: A Living Will Is Not Enough	p. 23
But Will Your Living Will Help?	p. 24
Do You Really Mean "Do Not Resuscitate"?	p. 28
An Improved Living Will	p. 29
Box: Medical Living Will with Code Status Advance Directive	p. 33
You Must Assign a Health Care Proxy	p. 40
When Someone Refuses to Create an Advance Directive	p. 44
Funeral? Memorial? Why Plan Ahead for the End	p. 46
Controlling the Costs	p. 49
Warning: An Advance Purchase Can Backfire	p. 50
Box: Back-to-Nature Burials	p. 51
Planning a Service	p. 52
Charting a Course to the End of Life	p. 55
Uncertain Future: Living with a Bad Prognosis	p. 57
Tell Me, Doc, How Much Time Have I Got?	p. 58
The Value of Knowing Time Is Short	p. 61
Talking the Talk	p. 63
Doctors Need Help, Too	p. 65
Coma: When the Brain Is on Hold	p. 67
Common Causes of Coma	p. 68
A Confusion of States	p. 70
Living Well to the End: Where and How	p. 73
Do You Really Want to Die at Home?	p. 73
What IS Important? Control of Symptoms	p. 75
Is There a Role for Feeding Tubes?	p. 80
When Treatment Is Futile	p. 83
Withholding and Withdrawing Life Support	p. 86
When Someone Is Actively Dying	p. 88
Caregiving: Tending Someone at the End of Life	p. 94
A Rewarding Experience	p. 95
A Demanding Job	p. 96
Relieving Symptoms	p. 98
Managing Pain	p. 101
Getting the Help You Need	p. 103
Caring for the Caregiver	p. 106
How to Know and What to do When the End Is Near	p. 110
Respect Wishes for Privacy or Company	p. 111
Hospice and Palliative Care: Don't Wait Until It's Too Late	p. 114
An Underused Resource	p. 115
How Hospice Can Help	p. 117
Many Wait Too Long to Enroll	p. 120
Hospice Provides Palliative Care	p. 123
Sources of Hospice Care	p. 125
Box: A Hospice Doctor Finds Joy	p. 127
Spiritual Care: Lighten and Enlighten an End-of-Life Journey	p. 130
Spirituality Versus Religiosity	p. 131
Prepare Yourself Spiritually	p. 133
What Family and Friends Can Do	p. 136
What Doctors Can Do	p. 138
When a Child Is Dying: Surviving the Nightmare	p. 142
Children Need and Deserve Comfort Care	p. 144
Parents Can Help . . . and Need Help	p. 146
What Parents Want from Doctors	p. 149
Box: A Mother Recalls Her Baby's Last Day	p. 151
Needs of a Dying Child	p. 152
Easing the End of a Child's Life	p. 154
When a Child Dies Suddenly	p. 156
Continuing Care After a Child Dies	p. 157
What to Say: Conversations at the End of Life	p. 159
Silence Is Not Golden	p. 160
Create a Conducive Atmosphere	p. 162
Gird Your Loins for Strong Feelings	p. 163
What Is-and Is Not-Okay to Say	p. 165
Doctors, Too, Must Know What to Say	p. 167
Box: Improving Doctor-Patient Communication	p. 170
What Patients and Families Want and Need	p. 171
Box: Communicating with Hope	p. 173
Doctors Who Disappear: What Can Be Done About It	p. 176
An All-Too-Common Experience	p. 177
Why This Happens	p. 178
What Patients and Families Can Do	p. 185
Training Compassionate Doctors	p. 187
Assisted Dying: What to Consider When Illness Is Unbearable	p. 191
Clarifying the Terms	p. 192
Weighing the Options	p. 196
Opting for a Patient-Controlled Death	p. 202
Box: The Oregon Death with Dignity Act	p. 204
Considerations if You or a Loved One Seeks a Hastened Death	p. 205
Box: If You Are a Physician	p. 207
Grief: It's Not a Disease	p. 210
No "Right Way" to Grieve	p. 211
Anticipatory Grief	p. 215
Common Symptoms of Grief	p. 217
What Many Find Helpful	p. 219
When Grief Is "Complicated"	p. 220
Can a Support Group Help?	p. 224
Preserving Memories	p. 226
What to Say When Someone Dies	p. 228
What you Can Do to Help the Bereaved	p. 231
Life After Death: What You Leave Behind Counts	p. 235
Organ and Body Donations: A Gift of Life	p. 237
A Need Unmet	p. 238
Misconceptions Abound	p. 240
Donation Following Cardiac Death	p. 241
Age and Health Are Not Limiting Factors	p. 243
Whole Body Donation	p. 244
Box: Your Wishes About Organ and Tissue Donation	p. 245
Autopsy: Valuable Lessons from the Dead	p. 247
A Difficult Decision	p. 250
Many Benefits of Autopsy	p. 252
Lasting Legacies: Leave Memories and Life Lessons	p. 257
Legacies to Treasure	p. 258
Overcome Your Resistance	p. 264
Epilogue: From the Start Consider the Finish	p. 267
Acknowledgments	p. 271
Index	p. 273
Illustration and Permission Credits	p. 285
Table of Contents provided by Ingram. All Rights Reserved.

Excerpts

PART 1

GET READY NOW FOR

THE GREAT BEYOND

We live in a society of death deniers, typified by the failure of most of us to prepare for the inevitable, whenever and however our time will come to leave the world of the living.

The result can be undue anguish for ourselves in the course of our dying and those we leave behind, not only during our final days, but for weeks, months, even years thereafter.

In this section, you and your family will learn what is best done well in advance of the end and how to accomplish it. Perhaps you are now young and healthy and thinking, "Why worry about something most likely years in the future?" But when you are young and healthy is the very best time to start-with minimal emotional pressure to color your thoughts. Furthermore, as you well know but probably don't want to admit, you never know when your time, or the time of your loved ones, may come to cross over to the Great Beyond.

Fear not. Nothing you do or say now will be etched in stone. You can always make changes as your life circumstances, feelings, and beliefs alter. But without an initial template, waiting until the bitter end will make the task that much harder and perhaps even impossible to accomplish.

CHAPTER 1

Death Is Inevitable:

So Be Prepared

There's only one certainty in life, and that is sooner or later it will end. No matter how good a person you are, no matter how important your contribution to society, no matter how healthfully you eat and faithfully you exercise, you will not-you cannot-live forever. That is an incontrovertible fact from which you cannot-and should not-hide. Despite the best that modern medicine can offer, there is no cure for mortality.

Yet the overwhelming majority of people are ill prepared for their final days, or the final days of the people they love. Some people are superstitious. They harbor an irrational belief that thinking about death is inviting trouble. But the real trouble comes from not thinking about death well in advance. Others simply haven't bothered. Why not put off until tomorrow what you don't have to do today? But what if tomorrow is too late?.?.?.??

No matter what your age or the age of your loved ones, the time to prepare yourself for the inevitable is now. You never know when the end may come and whether you will be able to speak for yourself as it approaches.

Too many people wait until it is too late to determine how they wish to spend their final days.

Too many people have neither discussed nor recorded their end-?of-? life wishes with the people most likely to have a say in the matter.

Too many people are at risk of ending up like Terri Schiavo, locked in a vegetative state for years while their families fight over how to proceed.

Too many people spend their dying days suffering needlessly with intractable pain or plagued by futile medical interventions.

Too many people assume incorrectly that having written a living will, they are protected from unwanted interventions when death is near.

And too many families are unprepared for the sudden, unexpected death of a loved one-young, old, or in between.

The terrorist attack of September 11, 2001, claimed 2,996 lives, nearly all healthy people and many in their thirties and forties with young families. A more commonplace tragedy occurred in August 2006 when a flatbed truck loaded with bricks slammed into a car carrying the young Christmas family of Queens, New York. Charles, age forty, and Theresa Ann, age forty-?one, and their two-?year-?old daughter, Victoria, were killed, leaving their four-?year-?old daughter, Theresa, an orphan. The truck then overturned and crushed an SUV, taking the life of thirty-?seven-?year-?old Norma Ryan but sparing her two children, Peter, age twelve, and Samantha, six months old.

All of these, to say the least, were horrid, unexpected deaths. For most people nowadays, the Grim Reaper approaches with far more warning. In 1990 cancer overtook heart disease as the leading killer among Americans under age eighty-?five, which means the majority of Americans now die slowly.

Yet even when there are weeks, months, or even years to prepare for the inevitable, relatively few people acquire the knowledge and take the steps needed to be sure that the end of life is as peaceful and comfortable and, yes, as celebratory as it can be, and that those who will be left behind are not overly burdened with medical and financial responsibilities, unanswered questions, and unresolved guilt.

In days of yore when deaths, other than accidental ones, occurred mainly at home, entire families-even young children-were familiar with it. People died at all ages-in infancy, childhood, childbirth, as well as in old age-surrounded by their loved ones, not strangers in white coats. Death was a part of life and, sad though it may have been, most everyone accepted it as such. There were no respirators, feeding tubes, needles, and fluid-?filled pouches keeping people alive for weeks or months. No one had to decide when to turn off life-?prolonging machinery or stop treatments for an incurable disease.

The case of Terri Schiavo, the twenty-?six-?year-?old who lingered for fifteen years in a vegetative state sustained by a feeding tube while her family fought over the right to end her so-?called life is perhaps the most dramatic illustration of the need for everyone- young, old, and in between-to be prepared:

• To make your wishes known about how you want to be treated if you are unable to communicate them at the time.

• To officially designate someone you trust to speak for you when you cannot speak for yourself.

• To know how to find doctors who treat the whole person, not just the disease, and who will not abandon patients when cure or meaningful prolongation of life is no longer possible.

• To know how to enlist the aid of the medical profession so that comfort and dignity, not agony and terror, are the hallmarks of your loved one's final days.

• To know how to respond appropriately when someone is dying so that the final hours, days, weeks, or months of life are not needlessly traumatic and financially exhausting for you or your loved one.

• To recognize and understand what happens, physically and mentally, when death is imminent, when hand-?holding and reassurance, not food or drink or an oxygen mask or CPR, is the proper course of action.

• To have a properly executed will so that your heirs will know how you wanted your assets distributed and will not become enemies battling over inheritance rights.

• And perhaps most important of all, to assign guardians for your underage children, along with a means to support them, if possible, should they become orphaned by the death of both parents.

It has been nearly forty years since Dr. Elisabeth Kübler-?Ross's best-?selling book, On Death and Dying, turned this long-?taboo subject into a socially accepted topic of conversation. Once the door had been opened, other books for the general reader followed: Final Gifts by Maggie Callahan and Patricia Kelly in 1992, How We Die by Sherwin Nuland in 1994, The Good Death by Marilyn Webb in 1997, Peaceful Dying by Daniel R. Tobin in 1999, The Needs of the Dying by David Kessler in 2000, On Grief and Grieving by Elisabeth Kübler-? Ross and David Kessler in 2005, Last Rights by Stephen P. Kiernan in 2006, and Final Conversations: Helping the Living and the Dying Talk to Each Other by Maureen P. Keeley and Julie M. Yingling in 2007, among others.

Since Dr. Kübler-?Ross opened the floodgates, many who work in the health care industry-nurses, physicians, social workers, chaplains- have written widely on the subject of death and dying in articles published in leading medical journals. Indeed, the Journal of the American Medical Association published an entire issue on the subject in 2000 and regularly runs articles under the rubric "Perspectives on Care at the Close of Life."

The American Journal of Nursing ran a yearlong series on caring for patients at the end of life. And many other leading journals-the Archives of Internal Medicine, the Annals of Internal Medicine, the New England Journal of Medicine, and the British journals the Lancet and BMJ, among others-have collectively published scores of research studies and discussions intended to enlighten physicians and other health care professionals about how best to cope with the myriad medical, ethical, and humane concerns that emerge when patients approach the end of life.

Still, there is so much ignorance about and resistance to this subject, much to the disservice of people who are dying and those who love and care for them. Avoidance and denial, not acceptance, are the states most commonly associated with the end of life, among physicians as well as laypeople like you and me.

For example, none of this information managed to penetrate the psyche of the leading oncologist who treated my friend Frank Crewdson in 1998 following a diagnosis of a relatively rare lung cancer unrelated to smoking. When it became obvious that the treatment the doctor had prescribed in hopes of "buying time" for his patient was not working, he sent in one of his henchmen-

a physician who had had no prior contact with Frank-to tell him, "There's nothing else we can give you."

It was as blunt a death sentence as could be delivered, and Frank, who was alone at the time, had no one to help soften the blow. Furthermore, his physician never saw Frank again, never came in to say, "We tried our best, but I'm very sorry that our best was simply not good enough. We can promise, however, to make you as comfortable as possible."

Nonetheless, changes are taking place in how dying patients are treated, thanks largely to the hospice movement and to the ongoing debates about physician-?assisted deaths. A new medical specialty called palliative medicine, which focuses on alleviating patients' symptoms and delivering humane medical care to patients whether they are expected to live or die, is gaining ground in hospitals nationwide. If properly executed, palliative care can obviate the need for laws to permit assisted suicides. Patients facing a protracted, fatal illness can spend their last days in comfort, saying their good-?byes, imparting their wisdom, healing wounded relationships, and expressing their love and appreciation to family and friends.

Ordinary people today are speaking more openly about loved ones afflicted with diseases like cancer, AIDS, and dementia. It is less and less common in newspaper obituaries for people to die "after a long illness."

Now the task at hand is to help millions of people like you to face up to the inevitable long before it will be necessary to put those preparations into action. You just never know. Remember Terri Schiavo was only twenty-?six years old.

You can-you must, for your own sake and the sake of those you love- help to change the culture of denial and avoidance to one of acceptance and preparation. You and your heirs will be glad you did.

FOR FURTHER READING

Kiernan, Stephen P. Last Rights: Rescuing the End of Life from the Medical System. New York: St. Martin's Press, 2006.

CHAPTER 2

A Good Death: There's More

Than One Right Way to Die

Death gives life meaning. Without death every birth would be a tragedy," Dr. Richard Smith wrote as editor of BMJ, the British medical journal. He recalled Jonathan Swift's writing in Gulliver's Travels:

Gulliver was vastly excited when he traveled to Laputa and heard of the Strudbruggs, the immortals. He imagined them with their "minds free and disengaged, without the weight and depression of Spirits caused by the continual Apprehension of Death." In fact, they were the most miserable of people. One of their "prevailing Passions" was envy of the deaths of the old.

Some people would say there is no such thing as a "good death"-that all deaths, except perhaps the deaths of terrorists and violent criminals, are necessarily unwanted and unwelcome. That may well be true when you are young, healthy, physically and mentally intact or, if not all of the above, at least still able to enjoy the good things and people in your life.

But what if you are very old and sick and no longer able to care for yourself? What if you become demented and no longer recognize or care about the people you loved? What if you have an incurable, untreatable illness that has progressed to the point where death is, as Hamlet put it, "a consummation devoutly to be wished?"

At such points, death might be a welcomed exit from an existence that has become intolerable or meaningless.

But I've discovered from people I've known and others I've read about, there is no one definition of a good death. Just as we have followed different paths in life, each of us must decide for ourselves how we want to be treated when death is near-where we want to be and with whom, and feeling, thinking, and doing what best suits us as individuals.

Some people, like my late friend Frank Crewdson, prefer the "security" of being in a hospital surrounded by equipment and medicines that can assuage any crisis, at least temporarily. Others, like my late friends Jessica Wing and Mickey Martinez, prefer to die at home surrounded by familiar, caring faces and caressed by their tender, loving hands and kisses.

Some, especially those with a deep, abiding faith, are ready to "meet their Maker" whereas others may refuse to acknowledge the approach of the Grim Reaper and insist that everything possible be done to treat their illness and keep them alive for as long as possible.

The five stages of death-denial, anger, bargaining, depression, and finally acceptance, so brilliantly described in 1969 by Dr. Elisabeth Kübler-?Ross-are universal only in the sense that different people choose to die at different stages. In death as in life, there are different strokes for different folks. There is no one "right way" to die.

What can make dying especially painful for both the dying and those they will leave behind is when the two are at different, incompatible stages and neither is willing or able to budge:

• The patient is in denial while the family has accepted the inevitable and only wishes the patient would prepare for it as well.

• The patient has accepted the fact that death is near but loved ones keep scouring the Internet and insisting that this, that, or the other therapy-however outrageous-be tried when all the patient wants is to be left to die in peace.

• The family is unable to relinquish anger over what they believe to be medical mistreatment-a missed diagnosis or improper therapy- while the patient has moved beyond anger to accepting the fact that doctors are human and mishaps are sometimes unavoidable.

• The family is so grief-?stricken that no one can "hear" the patient's attempts to settle unfinished business, express previously unsaid feelings, and bring life to a peaceful closure.