Honoring the Personhood of Brain-Dead Patients: A Delicate Approach

A dandelion alone in a field suggests the fragility of life. Photo by RIDVAN AYRIK/ Pexels

In the past month, we had a couple of patients in our pediatric ICU who had suffered tragic neurological injuries and were declared medically brain-dead. In the state of California as in most states, a pronouncement of brain death is equal to a legal pronouncement of death, and the medical team then possesses legal permission to remove mechanical support from the physical body that has remained under intensive care.

In both of these cases in our ICU, the parents struggled to accept the terminal implications of brain death and pushed back to varying degrees for more time to see if their children might still somehow find a way to recover. In these types of cases, the actual moment-by-moment practice of bedside nursing care becomes complicated. How do we honor the personhood of the patient as we provide intensive care for the body prior to removing mechanical support, and at the same time gently help the parents accept that their child has medically died?

The potential for misunderstanding nursing care

The interactions nurses have with family members as we care for their brain-dead child present many opportunities for […]

2023-06-21T13:06:54-04:00June 21st, 2023|end of life, Ethics, family experience, Nursing|1 Comment
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Why Spiritual Care?

Staying connected to something greater.

Photo courtesy of Pexels/Pixabay.

In a world that is constantly asking more of us, how can we stay connected to ourselves, to something greater, to a sense of meaning and purpose in our lives? This question guides most of my work, and my personal practices. Across years of conducting mixed-methods research to explore the role of spirituality among people with cancer, I am constantly presented with ways where our connection to spirit is challenged, and ways that we can remain connected amidst the very real pain, challenge, busyness, stress, and burnout of this modern world.

Making time and space for spirituality may seem elusive or impractical, especially when considering the limitations on our time and capacities. Along with co-authors Katie Addicott, MSN, FNP-C, ACHPN, and William E. Rosa, PhD, MBE, AGPCNP-BC, FAANP, FAAN, my hope for this recent piece in the American Journal of Nursing is to highlight simple, practical, and enjoyable ways to incorporate spirituality into everyday life and everyday nursing care, with the intention of supporting our own well-being and the well-being of patients and families we work with.

Defining spirituality 

While various definitions have been offered, “spirituality” generally refers to a human experience of connection with self, […]

2023-02-21T10:51:33-05:00February 21st, 2023|end of life, Nursing, Palliative care|0 Comments
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In the Nick of Time: Advance Care Planning in the ICU

Marian Grant, palliative care NP

I’m a health policy consultant for national palliative care organizations and often advocate for advance care planning, a process that helps people with serious illness prepare for future decision-making. I also work as a palliative care nurse practitioner (NP) in an academic medical center where I see the real-life aspects of advance care planning.

I recently saw a patient whose case typifies how advance care planning and policies to support it can work. A middle-aged woman with metastatic breast cancer at our cancer center had been seen the day before by the palliative care NP there. The NP was called to help assess the patient’s new-onset dizziness. While seeing the patient, she also spoke to her about her cancer status and suggested completing an advance directive. According to the NP’s note, the patient’s son, who was there with her, seemed surprised that things were not going as well for his mother as they had hoped.

The ‘Five Wishes’ advance directive.

Later in that same visit, the patient became profoundly hypotensive and was sent to the emergency department and then admitted to the medical ICU. The team there put in a request for a palliative care consult for metastatic cancer. I first saw the patient the next morning. She […]

2022-09-22T10:08:13-04:00September 22nd, 2022|end of life, Nursing, Palliative care|1 Comment
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Making Sense of Loss, Finding Strength as a Nurse

Maria, day 6.

It was bright outside, the sun was shining, and as I looked at the window in Room 303, I saw the light peering through. Maria, a 78-year-old Hispanic woman, mother of three, could not move and did not see that spring had begun as she struggled to breath. She looked at me with her helpless teary eyes trying to communicate, but I could not hear the words.

I’d d been Maria’s primary nurse for five of the six days that she has been hospitalized. During that time, I had witnessed the tension and anxiety that existed within her family around her admission with Covid-19. I hoped silently that a DNR order would be initiated if her breathing worsened instead of her being placed on a ventilator. But I tried not to express my feelings to her family about this when I helped them to communicate with and see their mother using FaceTime.

Maria’s family watched as she slowly declined, and saw how she didn’t respond to treatments. Feeling hopeless and overwhelmed, I tried to schedule a time to speak to my nursing manager about how I was feeling, but she was always too busy scheduling and assisting on the floor after other staff called in sick.

Hard decisions take […]

2021-05-13T10:24:41-04:00May 13th, 2021|COVID-19, Nursing|0 Comments
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The Bittersweet Reality of a Nurse’s Limits in Providing End-of-Life Care

Three young patients on the same trajectory.

Image by strikers/pixabay

I have recently spent time with a few young patients all on the same sharp trajectory towards their final day of life. All had different diagnoses, and on the days I had the privilege of being their nurse, they were each at different points on that trajectory.

M. was just four days away from dying, though he and all his medical caretakers thought at that point that he had at least a few more weeks.

J. was a couple of months away from dying, and on my shift with her, she knew her situation was bad but remained hopeful for some last-ditch interventions.

R. was well-appearing outside of an unsteady gait and slight sideways drift of her eyes. She maintained levity and a hopeful innocence in the first few hours of my shift with her before I took her to her MRI scan. As I watched her MRI images appear with a clear and tragic diagnosis, I heard the physicians outside of earshot from the MRI table discuss the inoperable, inevitable turn this would take for her in the very near future. R. didn’t know yet that her budding dreams for adulthood would not come to pass, and it felt a […]

2021-04-02T15:27:22-04:00March 31st, 2021|Nursing|1 Comment
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Views expressed on the blog are solely those of the authors or persons quoted. They do not necessarily reflect AJN’s views or those of Wolters Kluwer Health/Lippincott Williams and Wilkins.
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