Talking with patients about palliative and hospice care is not always easy, but it is important.
One of the unique aspects of oncology nursing is our ability to be present during some of the most dark times patients face. Through this, we develop relationships that lead to meaningful connections and trust. Our patients will come to us and trust us to speak the truth, as well as seek a safe place where they can share their darkest and deepest secrets and concerns.
Being present requires the ability to engage in conversations that ensure patients’ goals of care align with their priorities. This is not easy. Additional education and skills are required to master these discussions in a way that provides the desired result.
Palliative care focuses on caring for patients living with a serious illness and also supports their families. Unlike hospice care, which is given when treatment stops and usually takes place within the last 6 months of life, palliative care can start at the time of diagnosis. Both specialties address the symptoms and emotional aspects of care. Lack of access to specialty palliative care is a constant challenge for patients with cancer across the United States. Access in rural hospitals is even more challenging because of the lack of training, resources, and specialty palliative care clinicians. Although many rural health systems seek to provide elements of palliative care, including patient and symptom management and advance care planning, many local clinicians and nurses offer these services in the absence of formal training or specialty certification.
Today, many health systems struggle with providing quality end-of-life care. Thirty percent of all Medicare dollars are spent on end-of-life care.1 Often, treatment increases suffering and fails to improve the quality of life. As a result, institutions are beginning to see the benefit of incorporating palliative care earlier in the disease process, in part because of research findings that reflect this. However, they struggle with determining which model will prove to be the most sustainable.
Unfortunately, this is a common problem without easy answers. Institutions are looking for innovative models that can help ensure that patients and staff have critical resources needed to deliver quality patient care. An example of how 1 health system is addressing this challenge is seen in the Conversation Nurse Model. This program provides nurses with the training required to have serious illness discussions, as well as goals for care, and an interdisciplinary team provides hospice and palliative care consults. Initial data reflect the following cost savings benefits:
• Increase in number of palliative care consults for inpatients
• Increase in number of patients with advance directive
• Increase in hospice consults for patients in skilled nursing facilities • Decrease in readmission
• Expansion of trained staff to increase education into the community2
Nurses often find themselves in a position to lead improved end-of-life care within their own institution. Often, a simple survey to physicians and staff can help identify their perception of how care is delivered and opportunities for improvement. Another example may be setting up processes so that patients are asked if they understand advance directives. This would be an opportunity to provide important education before patients and caregivers are faced with a crisis. Nurses should stress the importance of patients understanding the need to determine who will speak on their behalf if they are unable to do so.
As new initiatives are developed, it’s important to recognize the emotional energy required for difficult conversations. Finding support both inside and outside the healthcare setting is essential. Every patient relationship can affect nurses differently. Mindful meditation can help manage stress or anxiety, as can reflective journaling. Nurses should find people to talk with without judgment. At the end of the day, these patient experiences remind us about the finality of life and how precious each day is. Caring is a privilege, but it does come with a cost.
An example of an innovative model to improve end-of-life care is seen at High Point Regional Health System in North Carolina. The hospital identified the opportunity for improved care at the end of life. A team was brought together that initially included a surgeon, a chaplain, a nurse navigator, a hospice liaison, and a social worker. That led to developing an end-of-life care consult team led by the chaplain and the nurse navigator. A set of routine comfort orders was implemented for patients admitted to the hospital for pain and symptom management at the end of life, which resulted in an increase in advance directives and hospice referrals. Ultimately, the American Hospital Association recognized this work with the Circle of Life Award.
Difficult conversations require nurses to draw on their own skills and the skills of others to help patients and caregivers prepare for what is to come, especially if that means end of life. These conversations require time and rarely can be accomplished in 1 visit or encounter. Patients must be given the time to express what they want, how they want to live, and what is important to them. They need to understand that this is about having the quality of life they want and that stopping treatment does not mean stopping care. Providing guidance and a clear understanding of what hospice is and what it is not can help bring additional support. Giving families permission to have these conversations and ask questions may end up being one of the most important gifts nurses can offer.
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