Journey’s End: Death, Dying, and the End of Life

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Julie was inspired equally by her professional backgrounds as a biomedical researcher and long time educator. Julie values open and lively discussions based on interview and research findings, trends in health and wellness, and exciting new modalities of treatment and professional education. She believes it will be through such discussions that we will create new and more satisfying cultural paradigms within which we may live all the days of our lives with dignity and quality of care.

Julie Saeger Nierenberg

Gabriel Heras La Calle, MD

My name is Gabriel and I have been an intensive care physician since 2007.

As an intensivist, I spend my working hours balancing on the thin line that separates life and death. I have been doing this for more than ten years. Each day is a magical and unique adventure. I have cried and laughed. I have seen suffering and experienced joy also. I have helped patients survive due to the wonders of technology and emotional human support. I have also witnessed the finality of death, more than the rest of the population. Sometimes knowing that we did all that we could isn’t enough; sometimes death is just meant to be.

I consider myself lucky to have shared many of these highly intense moments with the team members from the Departments of intensive Care Medicine of several Spanish hospitals: Leganes, La Paz, Alcorcon, Torrelodones, Vallecas, Son Llàtzer, and Torrejón. After each day, we all know that our work doesn’t stop after eight hours: we bring those moments of joy and sadness home with us. Emotional time doesn’t run the same as normal time.

Throughout the ten years, very little has changed in the way ICU patients are treated when “there is nothing to do.” With my years of first-hand experience, I now feel that there is so much more that we can do to improve the patient’s journey towards death.

In Spain, death is not a subject to be spoken about; death is not conceived as natural-or as an inevitable fact that will happen to us all. Therefore, when a patient or his/her family is faced with the possibility of death, they build up a defensive wall to rational thought. First there is the denial, then doubt that what they heard was true, then hope that the doctor is wrong, and that  this ‘news’ will just go away or disappear. But it doesn’t. When the fatal illness or injury happens, they are paralyzed, shocked, dumbfounded; they are not prepared. it is funny to realize that we, as organized human beings, prepare for our vacations to the last detail, plan our birthdays or weddings months in advance, yet ignore death or how we want to die or be treated in our last hours on this earth.

Because of this lack of preparedness of our patients and their family members, we as healthcare workers and medical ICU staff need to stop, listen, think, and be empathetic towards what the patients and the family members are experiencing. We need to think of how we would feel in the same situation, put ourselves in their shoes, and be aware of what they are going through. We need to think about our own death: the death of an intensivist, in my case.

We need to stand back and think of what we can do to make this moment smoother, calmer, kinder, gentler; to reflect on how we can help them understand that death is part of the life process, that there is not anything else more democratic that death: it happens to us all no matter who or what w are. That cold fact doesn’t make it any easier, but through emotional support and genuine caring, the shock and numbness can be lessened.

We have seen an individual who doesn’t benefit from sharing, from talking about their wants, their likes, their fears, or their tears. And I know that we as humans can adapt to almost any situation, no matter how desperate or dramatic it might be. You will survive; you will be okay. We are here for you; your family is there for you. So, let’s provide a relief from pain. Let’s provide solace for the desperate, company for the lonely, a comforting hand for the frightened, and the dignity in death.

As physicians, we were taught to preserve life. But we also have the responsibility to educate people in the hard reality of life’s end: death. We must take up this challenge to train staff and management alike in the how and the why of end-of-life situations: communication, empathy, and bedside manners.

Our objectives as specialists in intensive care medicine were always to reduce mortality and morbidity associated with critical illness, preserving the function of organs and restoring health. We were focusing on the result, not on the process, and we are probably wrong. But we have to make room for death with dignity: maintain autonomy, physical and emotional comfort, and ensure communication between people to prevent any kind of conflict.

Some might think that palliative care intensive care is incongruous. However, we should try to bring together the best treatment available with the best multidisciplinary care to ease the patient’s dying process. Ultimately, we want to improve care in death by improving the quality of life of patients and families with physical, pharmacological, psychological, and spiritual support.

We must work to make sense of death by helping patients, family, and friends to be prepared for the eventuality, avoiding surprises that trigger negative reactions, blatant rejection; we need to standardize processes in the ICU.

Looking and listening, embracing and understanding, feeling compassion for those who are suffering means preparing patients, families, and friends for the inevitable. By putting ourselves in their shoes, we can feel what they feel and learn to respect their wishes. Hopefully we can transform today’s reality into a better journey down life’s ICU path.

Gabriel Heras La Calle, MD, intensive care doctor at University Hospital of Torrejón, Madrid. Creator of the International Research Project of Humanizing Intensive Care.

Facebook: Gabi Heras

Twitter:@HUMANIZALAUCI