All of us, at some point, have pondered what it means to have a “good” death.
A common theme is to fall asleep in one’s own bed and simply not wake up. Woody Allen famously said, “I’m not afraid of death; I just don’t want to be there when it happens.” The underlying desire is comfort, serenity, peace.
According to the Centers for Disease Control and Prevention, the Top 10 causes of death in the United States in recent years were heart disease, cancer, accidents, lung diseases, stroke, Alzheimer’s disease, diabetes, influenza and pneumonia, kidney disease and suicide.
These Top 10 account for three out of four deaths, and most are chronic diseases marked by decline over years with increasing need for medical care and hospitalization along the way. Yet all along there is this denial of illness and death.
We used to be familiar with death.
Before the 1940s — prior to antibiotics, chemotherapy, heart surgery — people usually died in their homes over the course of a few days or weeks. Sir William Osler, frequently described at the Father of Modern Medicine (d. 1919), called pneumonia — a leading cause of death in his time — the “friend of the aged” because it was an “an acute, short, not often painful illness.”
With the advent of the intensive care unit and an ever-expanding medical-industrial complex, we now have approximately 4 million ICU admissions per year and about 500,000 ICU deaths annually.
The contrast between death at home versus in a technology-overrun ICU could not be more stark. In 2010, 28.6% of Americans died in the hospital. Yet 9 out of 10 Americans say they would prefer to die at home if they were terminally ill and had six months or less to live.
Unfortunately, death in the hospital is rarely pretty. Believe me, hospitals do not want patients dying in their facilities. It messes with statistics and quality ratings. It is also far more expensive. So, if hospitals don’t want us dying there, it costs more money, and we say we would prefer to die at home, where is the disconnect?
There are several problems. Doctors don’t like talking with their patients about death and dying. Doctors don’t want to appear to be giving up hope by talking about end-of-life care, nor do they want to appear helpless, as if nothing more can be done.
Patients, having watched one too many TV medical dramas, believe that technology and medicines are so good now that they can overcome any illness, even at the very end of life.
Perhaps the most egregious of these technological and communication disconnects at the end of life is with a procedure called cardiopulmonary resuscitation — the “Code Blue” you hear overhead periodically in hospitals. A code blue is an actual life-threatening emergency situation in which a patient is dying — typically their heart has stopped beating and/or breathing has ceased — and an entire medical team works to revive him/her with medications, chest compressions, intubation, electrical shocks and more.
Cardiopulmonary resuscitation can be life-saving in the community setting when a person suffers a heart attack or drowning, for example. According to 2014 data, nearly 45% of out-of-hospital cardiac arrest victims survived when bystander CPR was administered.
For hospitalized patients who suffer cardiac arrest (essentially, who die), the overall rate of survival from a “full code” procedure leading to hospital discharge is barely 10%. But most people, when asked in a scientific study, believe the survival rate to be more than 75%.
Unfortunately, the quality of life of patients who do survive resuscitation in the hospital is often not good. Rarely do the few survivors return to their previous functional status, which in hospitalized patients was probably poor to begin with. There can be brain damage from prolonged lack of oxygen, bruising and pain from broken ribs, and need for prolonged rehabilitation or nursing home placement.
But unless you — or a family member speaking for you — explicitly states otherwise, this likely will happen to you if you are coded in the hospital. And despite the resuscitation attempt, you will very probably die anyway. Is this really what you want your minutes to look like?
The good news is that we have far more control over where and how we die than one may think.
First, talk with your spouse and your kids — and your doctor — about how you wish to die and where you wish to die if you were to find out you had a terminal illness.
Second, make every effort to write your wishes down. In Texas, there is a document called a Living Will available online at hhs.texas.gov/laws-regulations/forms/miscellaneous/form-livingwill-directive-physicians-family-or-surrogates. Both English and Spanish versions are available.
This directive to physicians and family or surrogates lets you, the patient, tell your doctors and others what types of treatments you do or do not want if you are terminally ill and no longer able to make medical decisions.
In addition to this advance directive, Texas law provides for two other types of directives that can be important during a serious illness. These are the Medical Power of Attorney and the Out-of-Hospital Do-Not-Resuscitate Order. Don’t wait until a crisis to make your wishes known. It may be too late.
Finally, hospice care is available through Medicare, Medicaid and most private insurers to help patients achieve the “good” death they say they want, not by hastening death, but by helping terminal patients to fully live the life they have left as comfortably as possible and most often at home.