Part of why I love my program is because it is unique in that it places a heavy emphasis on spiritual well-being. So far, every semester, I have at least one class where we do a personal sharing. It includes one medical-related article sharing and one “spiritual” sharing (which is just anything that inspires, motivates, drives you, etc.)
Now hold on right there! No spirituality is not synonymous with religion… at least not in the world of nursing. In fact, spiritual care in nursing is a broad term that includes atheism, agnosticism, paganism, etc. Spirituality defines the connection people have with themselves, others, the environment, and/or a transcendent being. In nursing, religion is a part of spirituality, but spirituality is not only religion.
This is my week or spiritual sharing in my intermediate med-surg class. We are on the hematology unit and the cancer unit was last week so for my article I chose one on palliative care by Theodore Bosworth (link here), and a video about a young woman who is actively dying.
‘It’s About Living Better’: Repositioning Palliative Care in Hematologic Cancer
Palliative care is a highly UNDERUTILIZED option for patients. Most people think you must be dying in that moment to fully utilize. In fact, most people only use it for a couple weeks before death. Well in California, you actually can take advantage of all its benefits if you six months or less to live.
Why is palliative care so underutilized?
Patients, their families, and healthcare providers (unless specially trained in palliative services) have difficulty talking about death, which will tie into my “spiritual sharing” video below. This prevents everyone involved in planning. Planning how to maintain QOL for patients (palliative care), make end-of-life arrangements (palliative services), and making the most of the life patients are estimated to have left (palliative care).
WE ARE ALL DYING! We should all be thinking about these things, which is why in hindsight it is hard to understand why we don’t address QOL, end-of-life arrangements, and making the most of our lives! I am just a guilty as the next person. After the palliative training in my nursing program, I (at the ripe age of 26) sat down and planned all these things out. I want to be uncomfortable for the few moments it takes to plan these things out so I can focus on living NOT dying.
However, most patients don’t get the luxury of a graduate nursing palliative care training course. They don’t realize the importance of this until they have days to weeks to live. This article describes how patients, especially those with hematologic cancers, are not offered palliative care earlier enough. It was cited that this is often because healthcare providers worry it will send the wrong message to patients about their prognosis, but that is where COMMUNICATION comes into play! Explain what palliative care is! It isn’t about dying. It is about living the best life possible until they die!
Bosworth explains, “palliative care, which is directed at symptom control and the stress imposed by symptoms, is already fundamental to hospice and end-of-life management, but it is a strategy that can be initiated at any stage of disease, including at the time of diagnosis. Although palliative care is not a treatment for the disease, it can be delivered alongside forms of treatment with curative intent in order to improve QOL.”
What can we do? Discuss palliative care with our patients. Explain what it is and if they would like a referral to palliative care services. Palliative care specialists are trained on the difficult discussions that take place. Let them do what they are trained to do, but your patients will never get a chance to see them if you don’t let them know its an option. Tell them it isn’t about dying. It’s about living a better life.
“This girl with a terminal illness is using social media to normalize death” by Nathalie Basha
Death is hard. It is. It is actually one of the few things I still really struggle with. When someone mentions death I freeze, I don’t know how to act. I feel sad, but should I express that because I need to be strong of the person’s loss?
Claire, who is dying from cystic fibrosis, not only blows all misconceptions about people dying out of the water, but is completely inspiring in her optimism, positivity, and love for life. What I love about her message is the ability to preserve without bitterness but compassion.
Probably everyone. It seems like as soon as life resolves one thing… it hits us with another.
Probably none of you. It’s hard to not not wonder why… why is this happening to me… why do I have to deal with this. Some of you may focus on the negative. “Okay, I’ll be happy once I can fix problem A, B, and C.”
Again probably none of you. We are so worked up over these little things because we have the luxury of life. We know we have time to be worried about the little things, but is that really how we want to spend our gift of life? Most of you do not have a prognosis that says you will die in about 5 years life, but Claire does. Most people die from cystic fibrosis by their mid-20s. She was 19 at the time this video was made.
One of the most powerful parts of the video is when she says,
You can be in pain and yet you can see beauty, and that’s what make life so incredible. The people who have been through the most are the ones who have the most to give.
Link here for above video