By Dr. Sarah Phillips
Medical Director, Hospice of the Panhandle
Every living thing, no matter how small or seemingly insignificant, dies. We all exist in the circle of life, one that has a beginning, a middle and an end. And for a minute number of species, with death comes grief.
Humans are one of the few beings that have an emotional response to death. For something that is so common, so unavoidable, a shared denominator for the living, many cultures, including ours, shy away from talking about the inevitable.
There are literally billions of us. It is unlikely that the universe notices when one of us has passed on. But for those loved ones remaining, it feels like they just lost their entire world. Being human, having deep connections and complex emotions, introduces grief into our experience of death.
As a species, having just experienced journeying through a pandemic, this hits home even harder. So many lives lost, unexpectedly, without warning in many cases. My friend and esteemed colleague, Dr. Ryan McCarthy, has dedicated much of his time and energy into a project highlighting the journey of health care workers throughout the pandemic called “Healthcare is Human.” Such a moving collection of photos and stories, it is the inspiration for this piece I now write focusing on shared human experiences.
I am a hospice physician. I talk about death and dying every day. It is both the inevitable and the unknown. Research shows that 20% of Americans have some fear of their own mortality, and 65% of Americans say the death of the loved one is their greatest fear. I suspect those numbers are low, as it is human nature to avoid talking about our deepest fears. People facing death also fear suffering, loss of control, eternal punishment and the hardships on those they are leaving behind. Denial and silence often lead to perpetuating fear, people dying alone, people suffering unnecessarily, goals unmet and closure unrealized.
So, can we change our culture? I do not have aspirations of demystifying death and dying for the entire country or the state of West Virginia, but if I can make a small impact on our local community, I would consider that one of the biggest achievements of my career. I see firsthand what can be accomplished when we have more time. When patients and families access palliative care and/or Hospice services sooner in their disease trajectory, the outcome is almost always better.
The final years, months, weeks, days and hours are better, even though the ultimate outcome is death. There is very much a difference between a “good death” and a “bad death” for both the patient and those left behind. Modern medicine is wonderful and has its place, but there is no medication, no surgery and no intervention to achieve immortality. In fact, some of these more aggressive interventions as a person approaches their final years of life are actually harmful and can even shorten life expectancy.
I think education is paramount to making change. We fear what we do not know or understand. In order to gain that knowledge, we have to talk about it, learn from the specialists in field, talk to people within our inner circles who have experienced loss. No, I do not suggest we dwell on death. We should focus on living the highest quality of life with the time we are given. As time becomes more limited — how do you want to spend it? Who do you need to reconcile with? What goals are unmet? Do your loved ones know your final wishes?
There is an entire field of medicine dedicated to helping others journey through this phase of life. Just as you would seek advisement from your cardiologist for heart problems, Hospice and palliative care specialists should be sought out when the focus of care starts to shift from cure and quantity to comfort and quality.
These services offer doctors and nurses, who specialize in pain and symptom management, social workers, who are experts in facilitating conversations and developing plans of care to minimize psychosocial burdens, chaplains, who take a nondenominational approach to the spiritual aspects of living and dying, and certified nursing assistants, who ensure the most basic needs are met with comfort, safety, and dignity.
A hospice chaplain that I work with recently shared this quote from the highly respected author and theologian, Henri Nouwen:
“Learn the discipline of being surprised not by suffering but by joy. As we grow old, there is suffering ahead of us, immense suffering, a suffering that will continue to tempt us to think that we have chosen the wrong road. But don’t be surprised by pain. Be surprised by joy, be surprised by the little flower that shows its beauty in the midst of a barren desert and be surprised by the immense healing power that keeps bursting forth like springs of fresh water from the depth of our pain.”
I see firsthand in the work that I am so privileged to do, that there is joy even in the darkest times.
Death positivity is so very often viewed as taboo, when in fact, it should be an integral part of a healthy society. While we cannot avoid the sadness and grief that comes with dying, we can do things to ensure it is the most positive, peaceful, comfortable, beautiful, sacred human experience possible.
Sarah Phillips has been medical director at Hospice of the Panhandle since February 2013. She holds a certification as a hospice medical director. Hospice is a not-for-profit agency that has cared for patients and families with life-limiting illnesses in Berkeley, Morgan, Hampshire and Jefferson counties since 1980. For more information on how can help you or your family, call (304) 264-0406, or visit on-line at www.hospiceotp.org.