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Life after the Diagnosis
Expert Advice on Living Well with Serious Illness for Patients and Caregivers
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In Life After the Diagnosis, Dr. Steven Z. Pantilat, a renowned international expert in palliative care demystifies the medical system for patients and their families. He makes sense of what doctors say, what they actually mean, and how to get the best information to help make the best medical decisions. Dr. Pantilat covers everything from the first steps after the diagnosis and finding the right caregiving and support, to planning your future so your loved ones don’t have to. He offers advice on how to tackle the most difficult treatment decisions and discussions and shows readers how to choose treatments that help more than they hurt, stay consistent with their values and personal goals, and live as well as possible for as long as possible.
Excerpt
INTRODUCTION
VIRTUALLY EVERY DAY, I GET CALLS AND EMAILS FROM colleagues, other doctors, friends, and strangers. A loved one has cancer, heart failure, dementia; they're in pain, nauseated, not eating; the doctors want to operate, step up chemo, or insert a pacemaker or a feeding tube, bring in hospice. Their hearts are breaking. They're confused, at a loss. They're concerned about their loved ones, but they don't know what to do. They need help.
I listen, share my experience and expertise, offer advice, and try to help. I wish I could do the same for more people. Since I can't personally talk to everyone, I've written this book—to give others the same information, support, and guidance I give to patients, patients' families, colleagues, students, and others who contact me.
If you or a loved one is suffering from a serious illness, I'm sincerely sorry for the difficult journey that lies ahead. I understand how hard it can be, the heartache, uncertainty, and fear. I'm sorry for the pain, torment, and hopelessness you may feel. Although it may seem impossible to you now, I want to assure you that your journey can be made easier, less painful, more dignified, and more comfortable. Your pain can ease and you can enjoy better times. That's why I've written this book. I want to help you get through your illness and live life to its fullest.
Before we go any further, let me introduce myself and tell you why I'm qualified to write this book. I'm a physician who is a distinguished professor at the University of California, San Francisco, where I specialize in treating patients with serious medical illnesses. I'm a pioneer and an acknowledged authority in the emerging medical field called "palliative care," which focuses on improving the lives of seriously ill people.
Briefly put, palliative care is dedicated to giving patients relief from their pain, stress, and discomfort in ways that improve the quality of life for both patients and their loved ones. Our main goal is to help patients have the best possible quality of life for as long as possible—to live better and longer. That's also the objective of this book.
Over the past twenty-seven years, I have treated thousands of patients with serious illness and conducted extensive research on treating those patients as well as people approaching the end of life. I've also taught medical students, physicians, nurses, social workers, chaplains, and hospital staff members about palliative care and founded a network that is helping to improve palliative care services nationwide.
Shortly after I began writing this book, my mother was diagnosed with inoperable lung cancer, from which she subsequently died. I've also treated and been at the bedside of other family members, close friends, and colleagues who were seriously ill. As a physician, a son, and a friend, I've gone through the anguish that the loved ones of seriously ill people endure. I've experienced the range and intensity of emotions they feel. The impact of those experiences is always with me and is reinforced every day.
THE DILEMMA
Serious illness is awful, horrible; there's no way to sugarcoat or minimize it. When I talk about serious illness, I mean cancer, heart failure, chronic lung disease including emphysema, cirrhosis, kidney failure, dementia, stroke, Parkinson's disease, amyotrophic lateral sclerosis (ALS), and others. When such an illness strikes, it hits us hard. The impact is shocking, confusing, and depressing. It can devastate both patients and their loved ones. When an illness is long lasting, it disrupts our lives and drains our emotions, energy, and finances. It makes it hard for us to keep ourselves and our lives together.
Serious illness changes everything. It casts us into new and mysterious territory, somewhere we never wanted to go and know little or nothing about. During serious illness, we see everything differently. Our awareness heightens, and we realize that the risks are greater, the stakes are higher, and the time is shorter. The decisions we must make are harder, more elusive.
When we or our loved ones become seriously ill, many of us don't know where to turn, the questions to ask, or the actions to take. Some of us become paralyzed and fail to act, and others charge ahead and make rash decisions. Many may not be able to completely grasp what's happening, the full meaning of the news they received, and all the medical implications that might be involved.
Simply put, when we are diagnosed with a serious medical condition, we don't have, or can't digest, all the information we need. And we're not at our best. We're upset, scared, and feeling extremely vulnerable. Even though we're reeling, our minds are blurred, and we don't have all the facts, we have to move forward. We have to make decisions—critical decisions—on matters we don't want to face and don't feel equipped to make. We face a steep, daunting learning curve and don't know where to start. Life after the Diagnosis tells you where to start and how to proceed.
LIFE AND LIVING
This is a book about life and how to live. Although it's written for people with serious illnesses and those who care about them, it's not a book about dying and death. Instead, it's intended to help clear the fog, provide direction, be a resource, and give seriously ill people, their loved ones, and all caregivers a blueprint to follow during difficult and emotionally wrenching times.
The pages that follow explain that all isn't lost and that you and your loved ones can make the most of your time. They also identify the support you can get and the actions you can take, and they point out that you don't have to stand by helplessly. This book encourages you to be with others and get help, not to withdraw and be alone. During serious illness, you can do a great deal to make your situation better and lead a productive, satisfying, high-quality life.
This book is practical and information intensive. It's a clear, straightforward guide that shows you how to move through your illness in the best possible way: how to live with dignity and be as comfortable and productive as possible for as long as possible—a goal we all share regardless of our present health. It explains the options and what they entail, and states specifically what you can do. In these pages you will find the information you need to make the best, most informed decisions.
CONCLUSION
Helping seriously ill people and their families is my passion; it's my mission, my life's work. Through my career, I've gained invaluable knowledge, unique insights, and special inside information that I want to pass along. Now, I want to share with you, and people everywhere, the same clear, straightforward advice I've given to thousands of patients and to my family, friends, and colleagues—advice that I know will help. My mission is to help you live well after the diagnosis.
The most important lesson I've learned in working with seriously ill people is that our time is limited and precious. Each day, that lesson becomes more powerful and meaningful to me. The message of this book is to make every moment count. Treasure your time and spend as much of it as you can doing what you love with those you love—do it while you can.
Thank you for reading this book. I hope it helps you.
Please feel free to contact me at www.lifeafterthediagnosis.com/comments with your questions, comments, ideas, and personal stories.
Steven Z. Pantilat, MD
San Francisco, CA
PART I
first steps after the diagnosis
chapter one
BAD NEWS, NOW WHAT?
"I'M SORRY TO HAVE TO TELL YOU…"
"The biopsy shows cancer."
"It's a stroke."
"You had a major heart attack."
"It's Alzheimer's."
"The cancer is back."
"You have ALS—Lou Gehrig's disease."
Few things are worse than getting bad medical news. It's devastating to learn that you or a loved one has a serious, life-threatening illness or that a condition that was in remission has returned. Bad health news is shocking and can overwhelm you, even when you think you're prepared for it, even when you sense it coming. When you get bad news, you may think that your life has ended, but it hasn't! You will still enjoy many good times and experiences.
When you get bad news, moving forward is never easy, but it's crucial and definitely possible. How you deal with bad medical news may not cure you or make your illness disappear, but it can help you make the most of a rotten situation. Dealing with bad news is the first step forward in reclaiming your life.
"Hope is not found in a way out but a way through."
—ROBERT FROST
Bad news comes in many forms and affects us differently. For each of us, it makes different demands, has different time frames, and moves at different speeds. And although it initially may feel that way, bad news doesn't mean that your life is over or that your world will immediately be turned upside down. Take dementia for example. When people learn that they have dementia, their minds flood with questions and worries about the future, but they usually don't have to make sweeping, life-altering changes overnight. As their dementia progresses, they will have to adapt and adjust, but most of them will still be able to function in many areas for years.
Similarly, with treatment, medications, and lifestyle changes, most people with heart disease can stay active and hardly miss a beat. In contrast, other illnesses, such as cancer, often demand urgent action. With a cancer diagnosis, you may not be able to wait; you may need to quickly make changes that will put your life on hold. Usually, people with cancer can safely wait a few days or even a few weeks to start treatment, but ultimately they may have to drop everything and begin a course of chemotherapy or radiation that can have many draining side effects and profoundly impact their life.
WHAT TO DO
Bad medical news doesn't have to completely shut you down. When you get bad news:
Take time to deal with your feelings—acknowledge them and let the news sink in. Don't make any major decisions until your head stops spinning and your mind clears.
Then, look ahead. Think in terms of what you need to do now, today, this week or next. Looking too far ahead can overwhelm and paralyze you. So identify the decisions that you need to make now and those that can wait.
Learn about your condition, speak to people, get referrals, and find out who provides the most expert medical care.
Identify the best doctors, hospitals, and clinics, and the medications, procedures, and treatment options.
Plan. In consultation with your doctors, create a plan of action and a treatment plan. Then identify what you have to do and the steps you need to take. Planning won't change the reality of your diagnosis, but it can change how you, your friends, and your family feel about and deal with your illness. I'll discuss this in greater detail in the following chapters.
Each time bad news knocks you down—and it will probably knock you down more than once—take a moment, gather yourself, and develop a new plan to overcome the setbacks and move on. A plan can energize you, change your focus, and help you get back up and move forward. You can always do something to try to make things better.
HEARING BAD NEWS
Everyone reacts differently to bad news. Some people are more sensitive and take it hard. They may go to pieces and find they can barely function. Others are stoic, philosophical, and practical. While they put on a brave face, they may ache inside. Reactions can also be mixed, inconsistent, and extreme. No reaction is wrong; all responses are normal. Expect emotional ups and downs, intense and quickly changing feelings. One minute you may find yourself crying, the next you're on the phone with your insurance company to confirm that a certain doctor is part of your network.
When you receive bad news, your brain may freeze and you may not hear or understand anything else that's said. While your doctor continues explaining, your mind may be in such shock that you can't listen or comprehend. You may be so thrown or worried about your fate that you can't concentrate on anything that's said. Your doctor's words don't register; all you hear is "Wah wah wah wah," like when grown-ups speak in the classic Charlie Brown TV specials.
Upon hearing bad news, don't be surprised if you think the worst. Your mind may go directly to death and dying, as it did for my patient Richard.
At eighty-two, Richard was robust and seemed to be in good health. He lived at home with his daughter, still drove, was physically active, and had all his faculties. One morning Richard awoke with excruciating pain in his right hip and couldn't walk. His daughter called an ambulance that took him to the emergency room. When X-rays of his hip proved negative for a fracture, Richard was given a CT scan to see if there was a small hip fracture that the X-ray had missed. The CT scan failed to show a reason for his hip pain, but it revealed two suspicious masses in his liver that were completely unsuspected and not thought to be related to his hip pain. Richard's pain got better and he went home. A biopsy later that week showed that Richard had colon cancer that had spread to his liver.
The next day, Richard and his daughter came to my office for his biopsy results. "I'm sorry to have to tell you this," I said, "but the biopsy shows that you have cancer, colon cancer, that has spread to your liver." I then stopped speaking. For a minute or so, Richard sat expressionless, saying nothing. Then he asked, "So, Doctor Pantilat, tell me, how long do I have? Am I going to die?"
"This is serious," I said, "and it looks like we're not going to be able to make it completely go away. It may well be the illness that ends your life."
"How long do I have?" Richard asked.
We talked about treatment options, the probabilities, and the risks. I told him that I thought he had at least a year and maybe more if chemo worked. As we spoke, I could see that Richard was visibly relieved. "When you told me I had cancer," Richard said, "I assumed that I only had two or three weeks to live."
Although the news was still bad, our conversation enabled Richard to voice his concerns, learn more about his condition, and find out what could be in store. It also gave him better news than he had imagined when he first heard the diagnosis, which lifted his spirits and gave him hope.
WHAT TO DO
Don't leave anything to your imagination. Ask questions; get the complete and accurate picture. Learn as much as you can. Sometimes the truth, as it was for Richard, will not be as bad as you imagine. Don't try to guess what your doctor means, and don't be afraid you will look stupid or take up too much of your doctor's time. Instead of trying to infer what your doctor is actually saying:
Ask explicit questions to pin your doctor down. If you're confused or don't understand, ask him or her to explain. And be sure you fully understand the answer. If it still isn't clear, ask until you understand. No question is wrong or inappropriate.
If you can't follow what the doctor says or the news he or she gives you isn't clear, signal the doctor to stop. Hold up your hand, tell the doctor to wait, point out what you don't understand, and ask him or her to explain. If you need time to digest what you were just told, say so. During the pause, think about the questions you want to ask. And if you can't think of any questions or even concentrate, which is often the case, tell the doctor that you're going to have to stop now and come back at a later time when you've had the chance to absorb it all and think.
I find that when I'm a patient, I don't always understand everything my physician says. If I, a medical professional, can be confused, people who don't have medical backgrounds also can be confused. Like me, they have the right to, and should, insist on clear explanations.
If you have doubts or questions about your diagnosis that your doctor can't satisfactorily resolve, get another opinion. Get the names of experts and consult them.
Ask your doctor if he or she can recommend websites that you can visit or materials that you can read to learn more about your condition and what it may entail.
A word about the Internet, which I'll address in greater depth in the next chapter. Websites that post information from people with your condition can be extremely helpful. They can help you gain insight into your illness and what it's like to go through it. Although many excellent medical websites exist, the Internet also contains lots of very bad health information. Predators also abound online who hope to make a buck by offering miracle cures to seriously ill people. So be careful; verify all information, promises, and claims you find on the Internet. |
If you have an important doctor's appointment during which you may be given bad news or will be discussing treatment options, bring someone with you. That person may be able to listen and remember the news more clearly and accurately and be able to help and comfort you.
Consider writing down what your doctor says. Then read what you've written back to your doctor to verify that you understood it correctly. Say, "Let me make sure I got this right." You can also bring an audio recorder to tape the meeting so you can listen to it again. Just be sure to get the doctor's permission before you start recording. If you need to, download a smartphone audio-recording app such as iPhone PMC Recorder or Smart Voice Recorder (for Android).
Don't be hard on yourself because of how you respond.
Some people don't ask questions because they're afraid to hear the answers. They often imagine the worst or try to ignore their problems. Ask questions. The bad news you receive may not be as bad as you fear. And even if it is, that information will enable you to do something about it as opposed to not knowing, which will keep you in the dark. When you act promptly, it can have a positive impact. If you ignore the problem and later decide to act, it may be too late.
If you would rather not ask questions, you have other options. You can simply trust the doctor to do what's best, or have a loved one or friend speak with your doctor on your behalf. Patients frequently ask me to talk with their wives, husbands, sons, daughters, nieces, or friends whom they want to make decisions for them. The best approach is the one that works for you. And if you subsequently decide that you want to get information directly from the doctor, you can always change your mind.
The patient-doctor relationship is a two-way street. Essentially, it's just an interaction between two human beings. Patients tend to defer to doctors. As a result, many don't fully question doctors when they receive horrible news, which is understandable. Although it's essential to ask questions when you get bad news, it's hard. So take enough time to clear your mind and formulate questions so you can get the information you need to make the best decisions on how to proceed. You may have to schedule another visit to ask your questions.
SLAYING DRAGONS AND MAKING PLANS
Serious illness usually involves a series of events, and when you're seriously ill, your emotions bounce around. Periods of calm may mix with moments of terror. Once you slay one dragon, another may appear. You may be able to slay some dragons, but some you can't. You may even learn to live with a few. That's why it's so important to have a plan. Often, what the plan is isn't as important as the fact that you have one.
Shortly after I began writing this book, my mother was diagnosed with incurable lung cancer. From the outset, every piece of news we got about her condition was bad. Whenever developments could be either good or bad, they were invariably bad—worse than we hoped. Here are just some of the setbacks we received. We hoped that:
The rib pain my mother had for six weeks was just a strain—it wasn't.
The spot on my mother's chest X-ray was nothing—it was.
She didn't have lung cancer—she did.
My mother had a treatable form of lung cancer—she didn't.
She wouldn't have many complications—she did.
Her complications would be mild—they were draining and debilitating.
One complication was a nasty bladder infection that made my mother very uncomfortable. As part of her treatment, a catheter was inserted. Although the catheter was intended to give her some relief, it added to her pain and discomfort. During one of my visits she told me, "Oh, if I could only get rid of this bladder infection and this catheter, I'd be great."
My first reaction was that her bladder problem was nothing, compared with her cancer. At the time, I was searching for new treatments for her cancer and not worried about a simple bladder infection. In the big picture, it seemed like a tiny bump, a distraction, a trivial issue. But I soon realized that her infection and the catheter were a dragon to her—and one we could slay. Her comfort was paramount. Something I considered a nuisance, especially when compared to her lung cancer, was causing her great pain. Addressing her bladder infection quickly and decisively and having the nurse remove the catheter was a clear, concrete plan that helped my mom feel better.
PUTTING IT IN PERSPECTIVE
Let's face it, bad medical news stinks; it's difficult to handle and can feel extremely unfair. Some people are struck far too early, and many patients and their loved ones have to suffer through long, excruciating sieges.
Although getting bad news is horrible, it doesn't mean that your life has to instantly come to a grinding halt. Every moment that follows your diagnosis will not be terrible; you will still have lots of life to live and lots of joy. You will likely find that you are stronger and more resilient than you thought and that you can continue to lead a high-quality life.
Yes, things won't be the same; you may have to adapt, adjust, and endure a tremendous amount of loss. Although you'll go through difficult times, not everything will be lost, or at least it won't be lost all at once. Even if the worst-case scenario occurs, your world won't immediately end.
My dad died suddenly at age fifty-four. It was Valentine's Day. I got a late-night, long-distance call. What a shock. He was way too young. I was crushed and devastated, and I couldn't function. My life came to a halt—but then somehow it went on. And although I miss him terribly, my life has continued, and during that time I've experienced many wonders, numerous blessings, and lots of great joy.
Even if your tomorrows are limited, you can find joy, meaning, and fulfillment today and in the days ahead. You can find appreciation, gratitude, insights, openings, opportunities, and connections. Look for bright spots. At times, they may be hard to see, but they exist. Embrace the goal of living the best you can for as long as you can.
YOUR RESPONSE
When you're diagnosed with a serious illness, be realistic, understand that your life will change. At the same time, be kind and compassionate to yourself, treat yourself well, and enjoy the people and things that make you happy, without feeling guilt or shame.
Tiny pleasures, the small, seemingly minor, things, can help. They can add some luster and enjoyment to your life.
Jim, a spirited but frail seventy-two-year-old, was homebound with advanced heart failure. Although Jim loved his daily scotch, his sons were adamantly against it. They were afraid that if Jim drank even one glass of scotch, it would aggravate his condition, especially since he seemed to be more and more unsteady on his feet. They worried that he might fall. It became a point of contention between Jim and his sons.
When I visited him at home, Jim pulled me aside and asked, "Hey, Doc, would it be OK if I had just one glass of scotch before dinner?" We laughed about how the tables had turned from the time when his sons were in high school and he had admonished them about drinking. Although his sons strongly objected to Jim drinking any
Genre:
- "An invaluable book for those struggling to live well with an incurable disease, written by a doctor's doctor - the sort of fellow that physicians seek out for their own care."—Abraham Verghese, MD, Professor and Vice Chair, Stanford University Department of Medicine
- "During the times of uncertainty and fear that follow a serious diagnosis, this book arrives like a guardian angel. I will recommend it to all my patients, and will keep it close to hand for me and my family too."—Diane E. Meier, MD, Director, Center to Advance Palliative Care
- "A straightforward and honest guide."—Mark Ganz, President and CEO, Cambia Health Solutions
- "Life After the Diagnosis sets out practical advice for planning and sound recommendations for sorting through complex difficult decisions. If you or someone you love has received a bad diagnosis, take Dr. Pantilat¹s book along as you journey through healthcare and life with illness."—Ira Byock, MD, palliative care physician, Founder, Providence Institute for Human Caring, and author of Dying Well and The Best Care Possible
- On Sale
- Feb 14, 2017
- Page Count
- 368 pages
- Publisher
- Da Capo Lifelong Books
- ISBN-13
- 9780738219387
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