Palliative care programs are rapidly growing in this country, in response to the increasing elderly population and the economic issues we face in healthcare today. The role of advanced practice nurses has significant value in this specialty. NPs provide holistic care along with diagnostic and treatment expertise and at the same time evaluate cost-effective utilization of resources.
Palliative care is often thought of as end-of-life care and the same as hospice care. Hospice care has a similar philosophy, but it requires certification that a patient has 6 months or less to live.
Palliative care is defined today as comprehensive care of patients and families dealing with serious, chronic, traumatic or terminal illness. The goal of palliative care is to relieve suffering and support the best possible quality of life. The focus is on treating pain and stress, providing support for daily living, and assisting patients and families in making decisions based on their goals of care. The NP's focus is on the physiologic, psychosocial and spiritual needs of the patient.
The NP works with all members of the interdisciplinary team and often is the facilitator who brings different members of the team together to clarify and ensure that the patient's wishes are followed.
One of the challenges NPs in palliative care face is being able to bring the appropriate team members to the table. One patient in the ICU had a meeting that included family members, the palliative care service representatives, and the attending physicians from oncology, orthopedics, general surgery and the ICU. In order to clarify the medical status, prognosis and likely functional outcome of the patient, it was necessary to bring the whole group together to help set realistic goals for care.
In the setting of an acute care level 1 trauma center, the role of the NP as the clinical coordinator of the palliative care consult service is quite varied. A consult can be called by anyone in the medical center, including physicians, nurses, social workers, or patients and families. The scope of palliative care in the medical center covers pediatrics to geriatrics. Palliative care at SUNY Upstate Medical Center now has both pediatric and adult specialists.
The patients cover a variety of diagnoses, from motor vehicle trauma, intra cranial hemorrhage, and a return visit to the ER of a newly diagnosed lung cancer patient to chronic pulmonary, cardiac or neurologic disease. The symptoms of these cases range from severe pain, dyspnea, nausea and vomiting to fatigue and significant anxiety.
The families are also part of the care provided, and they are often in shock and so overwhelmed that it is difficult for them to focus on the patient's goal and how to honor their wishes.
The interdisciplinary team helps ensure that the right care at the right time and in the right place is going to happen for the person. The NP often calls on the case manager, social worker and chaplains to assist with identifying and meeting the critical needs in a timely manner.
Palliative care nurse practitioners need to be skilled in communication, diagnosis, treatment and pharmacology, and they need to counsel and support patients and families emotionally. Providing pain and symptom management and addressing patient suffering are important parts of the role.
Addressing patient suffering is often a bigger challenge than finding the right treatment for physiologic suffering. Sometimes when patient talk of pain or discomfort "all over" and are not able to pinpoint a specific location for the pain, they are actually describing what is known as spiritual or emotional distress. The challenge is to identify the source of this distress. The most valuable skill that can be used at this time is the ability to listen and allow them the opportunity to tell "their story." End-of-life issues are very sensitive. That is when we are all most vulnerable, scared and thinking of what we did or did not do in our lifetime.
Ira Byock, MD, a nationally known palliative care expert says the four things people need to address as they prepare to say goodbye are "Please forgive me," "I forgive you," "Thank you" and "I love you." The discussion of death and dying is one that most people and also most healthcare professionals find very difficult to talk about. NPs who can be empathetic and "be" with the patient at this very important time will have one of the most rewarding experiences of their career.
Educating staff members who have not studied care for the dying and loved ones in their educational curricula is another important role of the palliative care nurse practitioner. The review of medical and nursing curricula in the last 10 years has revealed a lack of information in these areas.
The End-of-Life Nursing Education Consortium (ELNEC) and Education on Palliative and End-of-Life Care (EPEC) curriculum to educate physicians and nurses on end-of-life care were established with the support of the Robert Wood Johnson Foundation. These programs were established as "train the trainer," so the education the trainers received was to be brought back and shared with other clinicians.
My facility, SUNY Upstate Medical University, uses these programs to provide teaching for medical and nursing staff members. The palliative care service has received requests for clinical training for all disciplines. The NP is a vital part of this education.
This consult service has had chaplain and social work interns and geriatric and nephrology fellows participate in clinical experiences. The medical staff, students, residents and fellows from many services do rotations with the team. The nursing staff often asks to have students and new employees shadow experienced providers, and those who are in undergraduate and graduate programs ask to be precepted by the NP. The requests from area hospitals to provide knowledge and training as they attempt to start programs have also been another area the NP has been involved in, along with community education on end-of-life issues and advance directives.