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Palliative and Hospice Care Part 2: Broken

“…And when it’s getting that bad for her, we will all get into a car, turn it on, and shut the garage door. We’ll go too. That will be that.” The dad said this with an empty look. Not even the blink of an eye or a twitch of the arm occurred when he stoically mumbled his plan. The mother stood silently, staring into the infinite emptiness.

Broken. That was the best way to describe them. They were completely broken. Their little daughter was dying of an aggressive form of brain cancer and she was deteriorating before their eyes. First, she lost her feistiness then she slowly lost her ability to smile without a facial droop along with her personality and cognition. This was the part that was eating the parents up inside. They were so destroyed that dying with her seemed like the only plausible way to not suffer as a family. She was their life. Without her, everything else seemed trivial. The extent of depression and helplessness that they expressed was terrifying. There was no doubt in our minds that the parents were serious when they said that they would end their lives when their daughter’s suffering was getting unbearable. It was heartbreaking.

In the midst of this chaos, the parents were fortunately introduced to the palliative care team. Through the use of a multidisciplinary approach, the parents were better equipped to understand what was going on with their daughter and their family structure. Though still very much broken, the parents slowly began to feel empowered, which enabled them to make decisions that honored their child and family. The change was neither a miracle nor magic, but it was the aftermath of understanding and acceptance that was made possible by the palliative care team. This was an example of the positive impact that the palliative and hospice care team can have on a family.

The word palliative care derives from the word pallium, which means, “cloak” in Latin. Palliative care, according to the World Health Organization, aims to provide care for the patient’s and family’s mind, body, and spirit. Palliative care is not only for the dying, however, it is also aimed towards assisting patients who have any form of life-altering disease. Effective palliative care is multidisciplinary and aims to provide pain control, comfort, and rehab. According to western practices, hospice is the part of palliative care that specifically deals with terminally ill patients. In simple terms, hospice is under the umbrella of palliative care.

My understanding of palliative care has evolved since that encounter and especially on this global medicine experience in Kerala, India. Through working with Pallium, it has become evident how important this field of medicine is in treating patients with complex medical conditions. I can write a book on the importance and depth of palliative care, but for now, please check out this link for more information.

Also, stay tuned for one last post on this topic, which will focus on Pallium in India and Dr. Rajagopal.

“You that seek what life is in death, now find it air that once was breath. New names unknown, old names gone: till time end bodies, but souls none. Reader! Then make time, while you be, But steps to your eternity.”–-Baron Brooke Fulke Grevillea

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Priyal Patel

More about Priyal Patel

Priyal Patel graduated from the Fairleigh Dickinson University-College at Florham with bachelors in biological sciences and minors in chemistry, lab sciences and anthropology. She then did her medical school studies at The New York Institute of Technology. She is currently in training for Pediatric Hematology/ Oncology.

2 Comments

    1. Now I wonder what kind of palliative care I should think about for my 91-year mom with dementia. Your article struck a chord when you mentioned cognitive decline and loosing the abiity to smile. But, my mom is not in any pain. She is in a memory care unit that takes care of her needs; bathing, dressing, bathroom, medicines, preparing for sleep, and providing for daily activities. I wonder, what else should be done. What can I do?

      1. Priyal

        Mrs. Merkley, this is such an important question, one with much complexity. I’m really sorry to hear about your mom. From what I hear, you have done a fantastic job supporting her and nurturing her through this illness. Palliative care is not just for pain. It serves to provide coordination of care and comfort. It also is as much for the patient as it is for the family. Keeping in mind that each patient has a unique set of needs, it would be advised that you talk to her doctor if you have any specific questions about how palliative care can help your mom and family.

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