The New Rules of Dying
Modern medicine, specifically hospital medicine, has in recent years changed the way we die. Consequently, most people are in the dark when it comes to knowing how to manage the end-of-life decisions that are now upon us—the ones that sometimes need to be made quickly in an ICU, as well as those we have time to prepare for. Graceful Exit is a conversation about how to die, and let others die, with grace and dignity in this age of modern medicine. It’s also a plea to make expressing end-of-life wishes as common as sharing what’s on your Christmas list, what kind of cake you want for your birthday, or what you want for supper.
In some ways, this book answers the question: Is there a right way to die? The answer is yes, with a caveat—the right way is different for everyone. Graceful Exit sets a framework for how to approach a loved one’s death with an elevated sense of responsibility and compassion. It asks us to acknowledge the deeply buried and sometimes overwhelming emotions that surface when facing loss and to use them as a bridge to a higher love. Loss, instead of being a source of pain, paralysis, and conflict, becomes a vehicle for knowing how connected we all are—with those we can easily love, as well as with those we harbor resentments against. Loss takes us out of ourselves, even as we reach inward. It forces surrender, acceptance, and with any luck, forgiveness. Rather than try to understand death, we surrender to it. We fall into grace, knowing we cannot fight death forever.
This book is intended to help you—a family member of a chronically or terminally ill patient, a parent who wants to get advance directives and inheritance documents in order for her children, a recent widower who has no idea what to do next, or a clinician who is interested in more fully understanding the patient experience—comprehend the new rules of end-of-life medical care: the advantages, the limits, the necessary preparations, the roles family members must play, the responsibilities of medical teams, and the cost considerations. We cover the nuts and bolts, such as the importance of advance directives and who to contact after someone dies, as well as some of the bigger ethical issues: do we prolong death using painful interventions that will buy the patient a bit of time, or do we, in spite of our capabilities, let nature take its course?
One beautiful Saturday morning last year I was supposed to be at the wedding of a dear friend, but instead I found myself in the emergency room, frantically performing CPR on Jane. Seventy-year-old Jane was visiting Miami from New York when she collapsed and could not be revived. She was rushed to the hospital where my team began working to try to save her. She was relatively young and healthy, but for some mysterious reason, she was bleeding internally, her heart had stopped beating, and her lungs had ceased to pump oxygen.
We tried everything to bring her back to life: standard medications, off-label medications, machines, pumps, tubes, and numerous procedures. Her husband, who sat in the waiting room during those tense few hours, added prayer to the efforts.
I am relieved to tell you that Jane survived. She walked out of the hospital several weeks after her ordeal with no lasting effects. She hasn’t had a relapse, thank God.
Jane and patients like her are the reason I practice modern medicine. Not only do patients like Jane routinely make it through situations they wouldn’t have just a few short decades ago, but many of the ills that once killed millions are now tamed to the point of near extinction. What we physicians can now do for our patients is nothing short of amazing. And the results grow more miraculous with each new breakthrough.
Another case in point: My good friend and retired physician, Dr. C, collapsed while having breakfast. His wife found him unconscious and immediately called 911. A specially outfitted ambulance with a CT scan in the back came to his driveway. The brain scan, which indicated a stroke, was performed and read by our hospital radiologist before the paramedics left Dr. C’s house. On the way to our emergency room, he was treated with a clot buster, and by the time I saw him in the ER, he was back to normal. That’s the miracle of modern medicine.
For patients like Jane and Dr. C, who are generally strong and healthy, modern medicine is at its best. But for the eighty-five-year-old with cancer, dementia, and a heart condition, the story changes.
Patients with little chance of survival—or at least little chance of survival with a quality of life—need a different kind of care. In almost any hospital in this country, a typical medical encounter like Jane’s is handled the exact same way, whether the individual is 30, 40, 50, or 101. I argue that aggressive treatment does not serve every patient well. I’m not talking so-called death panels here, but I believe that we must bring some sort of sanity into the way medicine evaluates possible outcomes.
Hospital medicine’s opposites are hospice and palliative care, whose main goals are to make a dying patient as comfortable as possible by helping to relieve pain via medication and offering emotional support and companionship. Most of the information in this book applies to all levels of care, from hospitals to hospice and everything in between. We will discuss hospice and palliative medicine, long-term acute care (LTAC), skilled nursing homes, and the growing home medical-care industry, as well as how insurance and predetermined limits of stay impact patients and family members.
We can weigh the good and ills of modern medicine till kingdom come. Modern medicine works miracles, or puts us in a difficult spot. The point is that it exists, and because it exists, most of us will come face-to-face with it at some point. And so I want you, the reader, to know some of the issues you will have to face and to have a method to deal with them. With this knowledge and perspective, you can go through the process confidently, centered, and at peace knowing that you have done due diligence for your ill loved one, your family, and yourself.
Everything starts with relationships. And perhaps never are they so impassioned than in an ICU. And so I begin this book with a chapter on what happens to family dynamics when on the brink of change.