It’s not easy, but we must deal with dying
There’s an old saying that goes, “Time heals all wounds.” Six months after Sept. 11 and more than one year after the local tragedy at the Lyon’s Restaurant and county mental health building, we are managing to go on with our daily lives, albeit somewhat wiser and with more sadness. But our wounds may never heal. The tragedy of instant, violent death is inexplicable. It leaves us questioning the meaning of it all.
Death in any form is a shock to our senses, regardless of the timing and preparation (or lack thereof) for it. So why, when given advance warning, don’t we pay attention to the signs of impending death? Why do physicians hesitate to deal with the reality of end of life? Why do we seek a cure when it is obvious that there is none? Why do we continue with a cure that causes more suffering than the disease itself? Why do we give up on quality of life in favor of invasive, damaging treatment? The whys can go on forever.
A wise person once said you can judge a society by how it treats its dying. I say, look around at how we treat our dying and judge for yourself how well you think we are doing as a society.
How many of us can say we have completed advance directives so that our loved ones will know what to do when and if the time comes to make decisions for our end-of-life care? How many of us even know what advance directives are and how they are used? How many have even thought of what kind of care we really want at end of life, or dealt with some of the thornier issues like tube feeding, futile care, artificial life support, “Do Not Resuscitate” orders, and on and on … ? If we don’t think of what we want for ourselves, how can we inform those who might be making decisions for us?
Why do we avoid dealing directly with end-of-life care and the myriad issues surrounding it? It is commonly accepted that the possibility of suffering and/or becoming a burden to our loved ones is the biggest fear surrounding death. Where is resolution to the issues found? It is a startling fact that most practicing physicians have never been formally trained in pain management. Recently, the AARP Bulletin reported that “landmark research from a 1995 Robert Wood Johnson Foundation study – conducted in teaching hospitals to understand decision-making related to terminally ill patients – showed that half of all dying patients suffer “moderate to severe pain.” Are we willing to accept this as fact in modern-day America? University of California at Davis Medical School ethicist Ben Rich is not. He has stated that “about 95 percent of all pain can be safely and effectively managed.” Recent legislation in California mandates that physicians receive training in pain management. While this is a step in the right direction, it is still a baby step. We can and should do better.
Physicians have the responsibility of requesting informed consent from their patients. This implies that a patient is informed about options that are available for treatment in order to provide consent. Given the limited time and the array of other pressures on physicians today, can we realistically expect them to be able to sit with us and give us the time needed to have the conversations necessary to fully inform us?
I believe that we must take more personal responsibility for our care, and especially our end of life care. We may have the right to informed consent, but we must assume responsibility for acquiring knowledge in order to give informed consent to treatment.
At Hospice of the Foothills, we care for the terminally ill by providing palliative, or comfort, care. Our goal is not to treat the underlying disease, but to accept the natural process of dying, and provide as much quality of life to our patients as possible. Needless to say, the elimination of pain is an important and necessary part of our care. And, although not completely successful 100 percent of the time, we are confident that our care provides increased comfort to our patients and their loved ones.
We have watched what is referred to as the “end of life” movement evolve over the last 10 years. For most of the last half of the 20th century, it was customary to “medicalize” death. How often have we visited someone in the hospital and all of a sudden they were gone, the room was antiseptically clean, and it was as if they had never been there? We learned to ignore death and keep it in the closet. As medical technology improved, we seemed to think that everything was curable, and when someone died, it was the result of a failure in our medical system, rather than a natural end to this life. One could conclude that our system is a miserable failure, because to my knowledge, no one has ever escaped death.
It is not in the dying, but in the way we view it that measures our degree of caring. Dying is simply not a medical event, but it truly is a spiritual process, and one that deserves our attention just as much as the birthing process. One need only look at the vast changes that have taken place in how we treat the birthing process today as compared to 25 years ago. The improvements have made the process much more natural and participatory.
The dying process deserves nothing less. If we are to judge ourselves by how we care for each other from birth to death, we must decide to direct our resources across the entire spectrum. Caring well for our dying is not difficult, and comparatively, it is not even expensive. In fact, studies have shown that hospice care is less expensive than traditional medicine. We simply need to look at how we changed the birthing process and realize that the same can be done for the dying process. It is a societal shift, a sea change if you will, requiring an open mind and a willing heart.
The necessity for this change was recognized by nationally acclaimed correspondent Bill Moyers and his wife Judith Davidson Moyers in a PBS series titled “On Our Own Terms, Moyers on Dying in America.” The series deals with the question “Will we die the way we’d like to?” While the evidence shows that most Americans say they’d prefer to die at home, the majority die in hospitals, where pain management for the terminally ill has traditionally played a secondary role. This month, on Tuesday and April 16, 23 and 30 at 6:30 p.m., the Nevada County Coalition for Compassionate Care (NC4) will be presenting this series at the Nevada County Senior Center. Based on two years of research, “On Our Own Terms: Moyers on Dying” will reveal the stories of the dying, their families and their caregivers, and illustrate the growing struggle to balance medical intervention with comfort and humanity.
We are all ultimately responsible for learning not only what care options are available to us in the dying process, but what we prefer and how we communicate our preferences as well. This series will present the Moyers tapes, and will have a panel of experts available for questions at each of the four sessions. I highly recommend the Moyers series and urge anyone who is interested in learning more about this topic to attend.
Denis Fournier is executive director of Hospice of the Foothills.
‘On Our Own Terms’
“Living with Dying”
The premiere of “On Our Own Terms” will explore America’s search for new ways of thinking about death. It will focus on people, patients and caregivers who are finding ways to overcome the denials that dominate mainstream American culture and open conversations about living with dying.
“A Different Kind of Care”
The series will continue with a report on the evolution of palliative care, otherwise known as comfort care. Leaders in this movement emphasize pain management, and the need for each doctor to address a patient’s psychological, emotional and spiritual well-being, as well as his or her physical condition.
“A Death of One’s Own”
Dying well, to many, means a matter of control over choices to be made as we die. We fear dying in pain and we fear that too much, or not enough, will be done to keep us alive. This program will look at issues surrounding efforts to control the circumstances of our death and the implications for families, institutions and communities.
“Time to Change”
In the final program, we will follow crusading individuals who offer palliative care to the working poor and uninsured. Through their work with terminally ill patients who otherwise would risk falling through the cracks of the U.S. health-care system, these doctors and nurses are creating models for change.
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