When a patient and their loved one(s) determine that end-of-life care is the next phase in their life journey, it is incredibly difficult to accept. And, as we established in our first Let There Be Light blog entry on acceptance of care, some patients and their loved one(s) never fully accept their reality. However, regardless if the health circumstance is accepted, all involved must adapt in their own way when end-of-life care begins.
Our care team makes it their highest priority to ensure patients and their caregiver(s) can adapt comfortably. We do this by first establishing trust. We get to know the personality of the patient and their caregiver(s) and communicate that the relationship is really a partnership; and the journey is best when walked together. It is important for the patient to know the nurse and team members involved are not there to judge, scold or overly direct them. Rather, their presence is to ensure every moment of life can be lived comfortably. We understand adapting to an uncertain situation is disheartening, but we work to make it as manageable as possible.
Caption: Listen to Anita Wilder, daughter of VNA patient, explains how VNA's
care team helped her and her mom adapt during end-of-life care.
To explain how we help patients and caregiver(s) adapt, here’s a description of the first three steps at the beginning of care:
1) A patient and caregiver(s)’ first interaction will be with a registered nurse. In most cases, it will be a phone consultation that addresses questions and concerns. Additionally, this call serves as an opportunity for the nurse to provide a sense of peace and reassurance that that the team will provide the best quality of care possible.
2) After the phone call, a time is set for a hospice team member (often a registered nurse) to visit the patient and caregiver(s) in their home. During this meeting, a comprehensive explanation on the hospice program is provided. This is also the time that decisions are made by the patient and their caregiver(s) on the direction of care.
Often times, patients and caregivers become anxious when determining the best plan of care. Therefore, listening to the patient articulate their goals and then customizing a care plan that best charts the path to meet them is crucial. When this process is done successfully, the highest level of dignity and quality of life is had.
3) Once the direction of care has been determined and the nurse and team are assigned, the home must be modified for accessibility and comfort of the patient. The care team will provide necessary adaptive items, like a bed, bedside commode, incontinent supplies, and medications. Additionally, they will ensure the home is safe and properly fitted with functioning smoke and carbon monoxide detectors. When modifying a home, the care team makes an extra effort to keep familiar possessions at the center of daily life. It should never be acceptable to create an environment comparable to a hospital setting. The goal is "low technology and high touch".
These three steps described make up the general format that initiates our care team’s work to help patients and caregivers adapt; however, these steps often must be “adapted” to meet the requirements of the patient situation at hand. Our team remains flexible throughout the process, so as we get to know more about the patient’s needs as the time together lengthens, the better we can adapt with them. After all, it is a partnership that should be walked together, side-by-side.