Introduction

Everyone dies, but no one is dead. — Tibetan saying

I have worked in various capacities in the healthcare field for over thirty-five years. These professional experiences, coupled with my own personal experiences, have given me intimate knowledge of the hardships of illness, aging, and frailty, as well as firsthand experience observing family interactions and dynamics when a loved one is ill and reaches the final stages of his or her mortal life.

Initially, I worked as a nurse's aide (now called a patient-care tech) in a nursing home (now called a long-term care facility). The residents (formerly called patients) of the nursing home ranged from people who were self-sufficient and had minimal needs to those who were completely dependent on the staff for all their basic needs, including feeding, bathing, and all bodily functions.

Just as there was a wide range of resident needs, there was a wide range of family involvement in the resident's life and care. The response by families to a loved one's illness and frailty varied greatly. Reactions ranged from complete denial of the patient's condition and non-involvement, where the family ignores the patient completely and refuses to acknowledge they are ill, to the opposite extreme, where the family is over-involved. An over-involved family will try to dictate every minute of the patient's life and run roughshod over the patient, taking away the patient's right to make decisions, telling the patient what he or she will or will not do in the belief that the family knows best. Families that cannot accept the patient's illness and that abandon the person at this crucial time cause extreme emotional pain to the patient. This abandonment often leads to the patient being placed in a long-term care facility. I think this is a sad situation; it stems from selfishness or poor coping skills on the part of the family, since they are unable or unwilling to "walk in the shoes" of the patient and put their own needs aside in order to help their loved one.

These early years working in the nursing home laid the foundation for how I have interacted with patients and families throughout my career. I have always remembered those I cared for at the nursing home. The residents taught me to be truthful with them, to respect them (after all, they had had rich life experiences that I as a young person could learn from), and to always remember that even though they may suffer from severe dementia, were nonverbal, or were bedridden, they were still someone's mother, father, sister, brother, aunt, uncle, child, or loved one.

I grew up in a small rural community, and working in the nursing home brought me very close to the experience of death and dying. My mother is a registered nurse (RN), and she would often talk about patients she had cared for. She knew almost everyone in our small town and had taken care of many of them over the years. Hearing about her work experiences taught me at an early age that everyone dies eventually, but her job was to take care of them to the best of her ability and to keep them as comfortable as possible.

While I was working at the nursing home, many residents died, as would be expected, given their advanced age and multiple chronic illnesses. This is something I expected when working with the frail elderly. I remember one winter when fatalities were particularly high. Every week, at least one resident died, and sometimes several died in a single week. I read On Death and Dying by Dr. Elisabeth Kübler-Ross because I wanted to know what those who were dying were experiencing. I also wanted to know if there was something I could do to help make their transition more comfortable. The book helped me to understand that dying is the natural progression of life, that it should not be faced alone, and that we all will face our own death. How we face that death and how others help us are paramount to having a good death.

I also learned from the residents that death was not something to avoid or fear. I noticed that they never seemed upset or scared when they spoke of dying. It was a topic that was discussed with pragmatism. Over the years I have had many patients tell me they are tired of living and look forward to what lies ahead for them. People who live with a severe illness or multiple prolonged chronic diseases may find the challenges of living insurmountable and become fatigued with living. The oldest old, those eighty-five years and older, may feel they have lived so long that they have outlived their usefulness. This can be hard for family members to understand. My father, who died at the age of ninety-two, would speak of how he had lived too long. All his friends had died. It saddened him that none of his friends would be able to attend his funeral, for they had all preceded him in death. In the last two years of his life my father developed dementia. He became aware of his declining mental capacity and was terribly upset by this. He would often wish for death to take him and spare him the degradation of his mind. He would ask me to help him die before the dementia completely took him over. This was terribly painful to watch as my father become completely dependent on others for his care. It was especially painful because I knew he was miserable. By the time my father died, he could only remember our dog, and seeing her was the only thing that gave him pleasure. He had forgotten everyone else, although he did say he thought we were nice people.

The residents of the nursing home seemed to have an awareness of when they would die. Oftentimes at the end of my shift, I would say "I'll see you tomorrow," and sometimes they would respond with "I won't be here" or "no you won't." At first, in my youth and naïveté, I dismissed these statements. How could they possibly know that? At first I was surprised to find that they were not there when I returned, just as they said. They had died. But as time passed and this occurred repeatedly, I knew that they really did know something I couldn't know. What stayed with me the most was not the fact that they died but that those words were always accompanied by a calm demeanor and often a slight smile on the lips that told me they were at peace with their life and they were ready for whatever came next. I found this comforting. To have an awareness of when their life on earth would end seemed to provide some comfort and even control to the residents. They never appeared to be upset, but rather they were holding a secret that I was fortunate to have them share with me. Based on these experiences, I have never considered that dying might be scary or something to be avoided, but rather another chapter of living. I learned that grieving is for those left behind, not for the one who has died. They are now at their final resting place, and those remaining must continue on without them. This can be a difficult and daunting task.

After I left the nursing home and went to nursing school, my responsibilities changed. I no longer worked in a nursing home filled with elderly people, where expectations were focused not on curing an acute disease but instead on managing chronic diseases or illnesses. Now I worked in the acute care setting, a hospital which had an entirely different focus — a focus on combating every disease, whether acute or chronic, to the most extreme degree possible. Working in the hospital, I was surrounded by the daily hope for a cure and the daily denial that death was inevitable. Death was the enemy and needed to be conquered at all costs, regardless of the futility of our actions or the pain we inflicted on the patients in the course of treating them. This led to patients being subjected to multiple painful and futile treatments, often without their full and informed consent.

It was not unusual for family members to ask the healthcare team to withhold information from the patient regarding their diagnosis or prognosis for fear that, if they knew the truth, they would "give up." Physicians, families, and nurses were only too happy to withhold such important information, not out of malice, but rather out of concern. They thought they were doing the patient a favor by not being truthful. The prevailing thought was that patients shouldn't know how sick they really were, as this would negatively impact their will to survive and to carry on. They would "give up." Families routinely withheld information about the patient's prognosis and often gave the patient false hope for recovery. This was quite a common practice across the United States in the 1970s and 1980s. At this time rapid innovations were taking place in healthcare, including new medications, surgical techniques, and other technologies such as dialysis and mechanical ventilation. These were used with gusto, and there was a general feeling that we could treat any malady. The topic of death and dying was taboo. The death of a patient was viewed as a failure — that we didn't try hard enough or long enough to save them.

I understand now that this was an approach that not only gave false hope but also subjected patients to treatments they may not have wanted had they known the truth regarding their illness and had they been given the option of making their own decisions. It also denied patients and their families the opportunity to come to terms with a terminal diagnosis and allow them to participate in decisions regarding end-of-life care. It also denied patients the time to get their affairs in order and possibly address unresolved issues prior to dying.

Although it is a difficult subject for many people (including healthcare providers) to discuss, I believe we need to foster an environment where there can be open and honest conversations among families, significant others, physicians, nurses, and clergy regarding treatment options and end-of-life care. We need an environment where we can encourage patients to become fully engaged in their care if they wish and where we ensure that they are in control of their own destiny and that others are not doing to them what they think patients may want or what they think is best for them. Even today in 2015 we continue to give patients and their families false hope and encourage them to submit to procedures, surgeries, and treatments by emphasizing the potential benefits, while minimizing the potential side effects or harm that may occur as a result of the treatment. False hope continues to be the number-one prescription for those with terminal diseases.

To this end, I have written this book to help answer questions anyone may face who is diagnosed with a terminal illness or who may be engaged in end-of-life decisions either for themselves or for someone close to them. It is intended to help them understand the options for managing end-of-life care, whether this means undergoing extensive treatment, withdrawal of treatment, refusal or withholding of treatment, palliative care, or hospice care.

History of Caring for the Ill in the United States

Without health life is not life; it is only a state of languor and suffering - an image of death. — Buddha

Since the beginning of time humans have struggled with disease and death; the inevitability of death has long been difficult to accept. From the earliest accounts man has searched for that which will make him live longer. Herodotus, a Greek historian who lived in the fifth century B.C., mentioned a fountain containing a special kind of water in the land of the Macrobians, which gave them exceptional longevity. In 1513 Ponce de León searched for the fountain of youth in what is now Florida. Of course there isn't a fountain of youth, but with the explosion in medical advances, which includes vaccinations, new surgical techniques, medications, chemotherapy, radiation therapy, CPR, mechanical ventilation, antibiotics, antiviral agents, and improved diagnostic imaging such as the CT scan, PET scan and MRI, people are living longer and the expectation for a cure is always high.

Although medical advances are important and we look to these to treat our illnesses, we also need to remember that nutrition, exercise, education, and public safety are more important in determining longevity.

Prior to World War II the cost of hospitalization and healthcare was primarily the responsibility of the patient or family. Very few people had health insurance. Most individuals were cared for and died in the home, surrounded by family and friends. The family was the natural locus of most of the care of the sick, with the women of the family providing most of that care. When someone died, family members prepared the body for burial.

During World War II women entered the workforce at an unprecedented rate, which removed them from the home and made it impossible for them to provide in-home care the way they had previously. After the war women continued to work outside the home, and extended family members were not available to care for and support the ill and dying. More hospitals were being built, and they were easily accessible for the family to visit. Hospitals were originally structured to take care of people who did not have family to care for them. However, this has changed. Hospitals were initially built mostly in ports or river towns such as Philadelphia, New York, Boston, New Orleans, and Louisville — centers of commerce where strangers were likely to be stranded sick or where people were likely to be found working and living alone. The increase in hospital beds encouraged the ill to be cared for in the hospital rather than in the home. In 1949 49.5 percent of deaths in the United States occurred in institutions, by 1958 that number had increased to 60.9 percent, and today 75 percent of Americans will die in institutions.

Private group insurance was introduced in 1929, and employer-based insurance became common during World War II when wage freezes prompted employers to introduce other benefits as a way of attracting workers. The passage of the Medicare and Medicaid act in 1965 provided insurance for those aged sixty-five and older and for those with disabilities, increasing the general availability of insurance and intensifying the number of encounters with the healthcare system and the use of technology. When a person has health insurance, they are more likely to be offered and consent to procedures or treatments and to be hospitalized since there is no financial risk to them. With the movement of care of the dying to institutions, the care of the patient shifted from the women and family to physicians, nurses, funeral directors, and chaplains. This shift changed the dynamic of dying from involvement of the family to removal of the family as the patient's caregiver and made possible denial of a terminal illness by the family and patient. It also allowed an avoidance of talking about the illness and interacting with the dying. The dying became isolated in their experience. This isolation was extended by the physicians and nurses caring for the patient, as the topic of dying was avoided.

At this time it was common practice to withhold information about the diagnosis and prognosis from patients due to the concern that patients were not able to handle the truth. There was a mistaken notion that patients would "give up" if they were told their diagnosis and prognosis. This withholding of information caused further isolation of the patient. My own family offers an example. When I was young, my aunt Lila was in the hospital, and the physician initially thought she had cancer. Although the diagnosis proved incorrect and she recovered, the family, including my mother who is an RN, asked the physician to withhold this information from my aunt because they thought it would upset her too much. Later my aunt found out about this deception and was terribly angry that we hadn't been truthful with her. She said she wanted to be able to deal with her illness regardless of what that illness might be.

When patients are not informed about their diagnosis and prognosis, they are robbed of the opportunity to make their own decisions and maintain control over their medical care, which may include end-of-life decisions. Uninformed patients are not given the opportunity to put their affairs in order or to spend time with their family and friends.