LET THERE BE LIGHT | Part 1: A Path to Acceptance at the End of Life Journey
It is said that God only gives us the life he knows we can handle, but during the end-of-life stage, limits become challenged and it is difficult to gauge what circumstances people can endure. We all know that end-of-life is a part of the human journey, but when that time comes, many can become disoriented and disheartened; many only focus on the life events yet to be versus the ones that have happened, and those thoughts can make people scared, isolated and lost.
The internal battle between one’s satisfied and incomplete measures of their life are often a significant determining factor to whether they can accept their reality during end-of-life, so the ability to confront and establish a plan to overcome these battles is crucial.
The plan to reach acceptance at the end-of-life must be rooted in an interdisciplinary approach that includes the mental, physical and spiritual elements of one’s life, and these elements need to feed into each other. At the VNA, we offer a team made up of nurses, a social worker, and chaplain to satisfy these elements, and each person on the team can help the patient address specific issues or tasks that, once resolved, might lead to acceptance of their end-of-life circumstance. Also, because our team’s work is done in the home, a patient is more comfortable in navigating through such issues, making it more likely to accept their care and prognosis.
The end-of-life care team can help influence patient acceptance in the following ways:
Nurses provide a roadmap for patients and loved one(s) involved by detailing expectations and a plan that addresses the patient’s needs. The nurse also has the responsibility of informing the patient and their loved one(s) on confusing terms, difficult medical scenarios and other critical decisions. Most importantly, the nurse emphasizes the quality of life, not the health cure, to the patient and their loved one(s). This might be as simple as suggesting a pain- free day opposed to a disease-free day.
A social worker becomes an important information resource for the patient and their love one(s). There are many legal and logistical matters that come with end-of-life, and the social worker can help plan and prepare for necessary events and documents. The more knowledge the patient and loved one(s) have, the more empowered they feel during the end-of-life phase, and the more empowered they become, they are more likely to feel in control.
A chaplain’s primary role is to guide a patient and their loved one(s)' spiritually through end-of-life care. Spirituality is different for everyone, so it is important for the chaplain to listen intently and structure their guidance in a way that is clear and comfortable for the patient and their loved one(s). Prayer is often a key responsibility for a chaplain, but sometimes chaplains simply offer their presences in silence. Often times, a patient will use scripture or religious teachings as a guide during end-of-life to become closer to their God with the intention of accepting their destiny in an afterlife. Chaplains play a critical role in that formation, when desired.
It is important to note that the team provides the patient and their loved one(s) the opportunity to take over control at any time. At that point, their role is to guide and provide a voice that ensures patients aren’t dismissed.
With a plan and the right people to implement, the patient’s quality of life can remain high and their willingness to accept their end-of-life circumstance increases significantly. While the end-of-life team and the roles they serve help many patients and loved ones, not every patient accepts their end-of-life journey. It is our team’s hope that those patients that do not fully accept still feel that their dignity is cherished, and they never feel alone.
In the end, the patient’s life story and how they choose to end it is the only thing that matters. That is something we all can accept.