Completely Present: What it means in caring for the dying
By Dr. Tom Bishop, PsyD and Joshua Wienczkowski
Dignity therapy, according to Dr. Bishop, revolves around a singular question – what is one thing I need to know about you in order to better take care of you? It’s through this, we as providers help patients and their families build legacy and how they can accomplish this once disease has been diagnosed, he discusses. The notion of being curious opens the door to understanding how patients perceive their situation; it helps us figure out what control and sense of self mean to a person; how their role in life can be preserved; help them maintain pride; instill a sense of hopefulness with autonomy and control, acceptance, resilience, and a fighting spirit.
When working with terminally ill patients, Dr. Bishop is always asking himself,
What do they do to help ease the situation? Are they moving from a focus on disease to the present (mindfulness), and if not, how do I get them there? What are their coping skills? How do they tackle this disease? What does normalcy look like? Do they have or need spiritual comfort, whatever that may mean to them?
In a study from The Lancet Oncology on dignity therapy, 326 terminally ill patients were introduced to dignity therapy in end of life care, and they found improvement in quality of life, impact on changing how families valued them, and helped relieve sadness and depression. However, the study showed it did not lead to improvement in stress levels. Essentially, dignity therapy in end of life care helps coping with the illness, but it’s still dying and still hurts. Stress doesn’t change, but the understanding of it does, according to Bishop.
Reflecting on nearly two decades of helping care for patients in end of life, Dr. Bishop notes a commonality that seems to stem from the very core of the human condition that everyone attempts to find meaning. He goes on to describe an innate drive in everyone to find some meaning in the process of searching for meaning. It doesn’t relieve the conflict and inner turmoil of facing one’s own death, he says, but it can help bring sense of meaning to a life nearing its end, or maybe being more accepting there’s no rational explanation of the suffering.
When talking with patients, there’s informational and formational communication. In formational, info I’ve taken in via a new research study, let’s say, can start to impact how I might practice. Transformational is to the level you might consider mortality in a different way. You want to give information when talking with patients in end of life care, and perhaps impact the way they live and think, but hopefully you’ll change their life and time left through connecting as people in death and dying, and vice versa.
To really appreciate these kinds of conversations, Dr. Bishop recalls a story about Mrs. C, a young woman in her 30’s who was dying quickly from cancer, but her husband simply couldn’t grasp what was happening.
We had to be honest with him, but also respect his defenses. I had to wait for the right time to ask what if. I would ask him to simply look out the window and look at it for just a minute and see how he felt about it, the what if. I was planting a seed. It had to start with not a notion of him just accepting she was dying, but being honest, and respecting his guardedness and finding the opportunity to simply ask the question of what if. He could tolerate that for only a moment, but he couldn’t tolerate that she was going to pass. I had to meet him where he was at.
Recounting the days in home visits leading up to her death, Dr. Bishop described an anger that lingered in their house, but it was anger from two perspectives. He was angry their current situation was even happening, an opportunity of life and love robbed from their hands too soon. She was angry she didn’t have control, and didn’t want to spend their final days in appointments. In that, both were coming to terms they weren’t going to be seeking more care. While Mr. C begged his wife to go to more doctors appointments, to try 4th and 5th line treatments, or a new clinical trial at a big university, Mrs. C simply wanted to spend their remaining time together at a park, wrapped in each others arms as the inevitability of death crept closer like the faithfulness of the sun slowly slipping behind the horizon each day at dusk.
I was working with their daughter, who was struggling with the adjustment, and you just have this sixth sense. In slow motion, I can remember the neighbor coming out into the yard, and the sirens echoing through the neighborhood as the ambulance approached. She had JUST passed away. Her husband was hysterical, yelling “You have to do something! You have to do something!” Even though he had come to terms with Hospice and letting go; even though we had peered out the window and wondered what if, taking small doses in at a time; in that moment, and knowing their spirituality, and attempting to console him by saying things, I was at a loss for words. I tried to dictate their understanding of what was actually happening, and then the daughter began to say “she’s in a better place” and using the language important to them. He just needed to be held, so that’s what I did. I was present, which was more to them than any word I could have offered.
In death and dying, Dr. Bishop offers, being prepared, seeing it coming, having a plan, and then being COMPLETELY PRESENT are the most valuable things one can do for a patient and their family. Being curious and discovering where they’re at is the only way to understanding the core of a person and how they define their own human condition. Comfort with discomfort, he says, is a door through which we can truly appreciate the power of simply being present. Although words may fail when we desire to use them, offering open arms in even the darkest hour is light that can weave comfort with the thread that binds us all, our human condition.
Dr. Bishop is a Clinical Psychologist with the ETSU Family Medicine program in Johnson City, TN and has interests in primary care, rural and organizational health, faith and medicine, positive psychology in medical care, sports psychology, and neuropsychology. Joshua Wienczkowski is a medical student preparing to start Family Medicine residency at ETSU in Kingsport, TN.