by David B. Feldman, Ph.D. & S. Andrew Lasher, Jr., M.D.
Caring for a person as he or she is dying is one of the most difficult yet important things we will ever do for someone we love. Most of us come to the task woefully ill prepared. Growing up in the United States, we have to a greater or lesser extent absorbed the orientation toward illness, aging, and dying of contemporary Western culture, summed up succinctly as “I don’t want to think about it.”
All our lives we’ve thought there is nothing worse than dying. But unfortunately there is. One thing worse than dying is dying badly. It’s not just our own death we fear. We can’t imagine anything worse than someone we love becoming ill and dying. But again, worse things can occur. More dreaded than losing people you love is knowing that they suffered as they died or, worse still, realizing that their suffering could have been prevented.
People rightly want to focus on life and living. Even when a person becomes ill, talking about dying can feel like giving up on life. The problem with unwavering avoidance of dying and death is that it keeps us from planning. As a consequence, most of us are utterly unprepared when this inevitable and inarguably important part of our lives happens.
I often talk to patients and families, as well as public groups, about advance directives—living wills and the durable power of attorney for health care. Frequently, the initial response from people is that they are not ready to discuss it. “I’m just not there yet, doctor,” or “Do you think things are that far along?” I explain that every adult should have an advance directive; I have one, and so does everyone in my family, including my daughters in their twenties. It’s hard for me to imagine anything worse than one of my daughters being seriously injured or ill, but if tragedy strikes our family, I want to keep it within our family. The cases that have shaped American law on end-of-life medical decisions—Karen Ann Quinlan, Nancy Cruzan, Terri Schiavo—were all young women.
Like it or not, when the day comes that we have lost the capacity to speak for ourselves, someone we know and trust will be called on to speak for us. While we can’t alter the inherent vulnerability and frailty of being human, we can project our personal values and choices forward. By being proactive, we can not only protect our choices but also diminish the burden of decision making that our friends and family feel. That’s why I have an advance directive. Otherwise, we make the hard job that our families will have even harder.
As awkward and anxiety provoking as it may be to contemplate illness and dying, preparing is essential. The cold truth is that about 80 percent of us will be physically dependent on others during the last months, weeks, or days of life. We will need help with basic daily activities, including the biological needs of eating, personal hygiene, and elimination. As we were when we were infants and toddlers, so we will be at the end of our life. If all that seems undignified, I suggest, it is merely human. Some species are born fully independent and die suddenly. Babies are utterly dependent on others for the first few months and remain reliant on their families and communities for basic needs and protection through childhood. The process is reversed at the far end of life, whether occasioned by age or by disease. Correspondingly, people have cared for their young, old, and frail since the beginning of our species; it’s part of what makes us human.
Hospice and palliative care have made huge strides in changing the way people are cared for as they die. Even today, however, over half of deaths occur in hospitals. Nearly 20 percent of Americans end their days in intensive care units, often tethered to beds to keep them from dislodging IVs or breathing tubes. Dying is hard enough—it doesn’t have to be this hard.
One would think that the general cultural avoidance of dying and death would dissolve at the doors of the medical center. Not true. In the mid-twentieth century, a dazzling string of advances in surgery, cardiology, the treatment of infections, and the understanding of disease made it seem that aging and death might one day be conquered. As a result, the topics of death and dying became taboo in the medical community. More recently, medical culture has begun to accept and integrate the fact that people eventually die. Still, the old observation that death feels like a failure to doctors remains true. Doctors care deeply about the people who are their patients, but they have been trained from day one to protect people from death. Medical education is focused on evidence-based treatments of disease. While this has resulted in notable successes in treating specific diseases, it has fostered a mechanistic, fix-it approach to patient care.
People are more than elegant machines. An exclusive focus on physiology ignores the emotional, social, and spiritual parts of a person’s life. The fix-it mentality is also ultimately lacking, because at some point, despite cutting-edge treatments, everyone dies. When a person develops a life-threatening condition, he or she needs access to the very best treatments and medical centers. The person needs doctors and nurses trained not only in curing diseases but in caring for the people who have them. Yet even with the best doctors and nurses, people can feel bewildered and lost in the world of illness and in the complex, technical world of medical treatment.
Receiving a diagnosis of a terminal illness is a bit like stepping into a raft on a river with class IV rapids. Things abruptly begin moving too fast; people describe feeling unsteady, never fully in control. They are aware that unseen dangers may await them at every turn. People who are seriously ill—and those caring for someone who is ill—urgently need a guide who has run rivers like this before. A knowledgeable guide can help an ill person—and the family members also in the raft—to navigate these swift, rough, and foreboding waters. An experienced guide can alert people to the decisions that lie ahead and provide tips from people who’ve journeyed this way before, both mistakes to avoid and things you don’t want to miss. A guide through illness can point out snags lying beneath the surface of the health care system, such as sometimes perverse financial reimbursement incentives, or forces of groupthink and assumptions about the way things are done that can sweep people away in a direction they would never have chosen.
An adept guide would never presume to plan for a journeyer, but would know the questions to ask so that the traveler could carefully choose his or her own path. The ideal guide would be part doctor, whose counseling is rooted in medical expertise, and part psychologist, who could explore and assist with sources of personal distress, helping to maximize the individual’s and family’s personal well-being.
In this handbook, David B. Feldman, a clinical psychologist, and S. Andrew Lasher Jr., a palliative care physician, with many combined years of experience caring for people with advanced illness, extend to reluctant travelers critical information, suggest essential questions to ask, and offer sound counsel for the journey through illness, the frailty of advanced age, and the challenge of caregiving. It would be ideal if they could climb into the raft with you. But the next best thing is to pack the book you have in your hand. Hold on to it during the journey ahead.
Ira Byock, M.D.
Lebanon, New Hampshire