Patients with a progressive disease are likely to require many encounters with the healthcare system. Throughout the course of their disease, they require additional information and support while their health status changes.
Nurses, the "constant" in a patient's journey throughout their disease trajectory, are the ones to discuss goals of care and treatment options. As trust is established, communication is essential for nurses in caring for patients throughout this process.
Karen S. Peereboom, MSN, APRN, ANP-C, noted that a patient's questions, concerns and responses will change over time.
"Through skilled communication, the nurse will be more likely to preserve the patient's 'voice' throughout their disease trajectory," she explained.
Patients and their families often turn to nurses for advice and counsel when confronting decisions about treatment options in the setting of a life-limiting illness. Through effective communication skills, these conversations should focus on the patient's goals and values, helping to guide the decisions about treatment options.
"If nurses do not communicate effectively when discussing goals of care and treatment options, a window of opportunity may be lost and the patient may embark on a plan of care that is incongruent with their values, beliefs and wishes," said Peereboom.
A Unique Position
Nessa Coyle, ACHPN, PhD, FAAN, retired from Memorial Sloan-Kettering Cancer Center (MSKCC) at the beginning of 2012 after four decades working with advanced cancer patients and their families as a nurse practitioner and member of the Pain and Palliative Care Service, and running the supportive care program of the service.
Today, she continues as a member of the ethics committee and clinical ethics consultation team. She is also a facilitator in the ComSkills Lab of MSKCC's Department of Psychiatry and Behavioral Sciences.
Coyle described the relationship between nurses and patients with a life-limiting illness as "extremely close."
"Nurses are at the bedside for a purpose and can be a healing presence through practicing the science and art of nursing," she explained. "The nurse needs to bring together knowledge of the patient and knowledge of the disease process and symptom management."
She said nurses must focus on the specific needs of an individual patient - keeping in mind his goals, culture, spirituality, quality of life and what is important to him at this stage of life - as well as be well-versed in managing symptoms.
While the nurse is present when patients express their thoughts, concerns and values, they also become familiar with the patient's medical history, health status changes, 'behind-the-scenes' discussions of the team and family dynamics.
That's because nurses are with the patient in all settings and at times when no one else is present, Peereboom said. For example, nurses may remain with patients in the exam room, the chemotherapy treatment rooms and the bedside, when other members of the healthcare team are absent.
"A patient with a life-limiting illness is often overwhelmed with the amount of information that is shared, the myriad of healthcare providers they encounter, the fragmentation of the healthcare system and the many decisions that are required," she said.
Wndow of Opportunity
"Because nurses are uniquely positioned to establish a therapeutic relationship with their patient, they may be able to help ensure that the patient's values, beliefs and wishes are honored throughout the patient's disease trajectory, as the goals of care are established."
Communication is the foundation of all patient- and family-centered care.
With attentive listening, the nurse will learn from the patient what is most important to them as life draws to a close.
The nurse can also provide a guiding voice as patients sort through the various options for care at the end of life - how to talk to their families, say their goodbyes, define their legacy and what their imprint has been on the world.
"Effective communication is especially helpful during transition points throughout the course of a progressive illness," noted Peereboom.
Coyle added that effective communication is also useful when patients are feeling frightened and alone and fear abandonment by the medical team, or when they're feeling like a burden on the family and fearful of the dying process and uncontrolled pain.
"The nurse can be a guiding and stable voice providing concrete straightforward information, and a sense of security through giving information about these processes in a language that can be understood," she said.
Though they're in an ideal position, Peereboom said nurses might be hesitant to initiate end-of-life discussions because of lack of experience, fear of using the wrong words, fear of the emotions that might be elicited, feelings of guilt because they are not able to do more, feelings of disagreement with the decisions being made, and moral distress (C. Dahlin, Sept. 17, 2011, We are in this together: Creating a circle of care).
"If they have not received training in end-of-life care and end-of-life communication, they may be fearful of doing harm," said Coyle, who noted that training in palliative care, end-of-life care and communication are essential skills for all nurses to be taught. "You cannot practice what you do not know."
The close proximity of nurses often allows for communication in a less-formal and less-threatening discussion. As patients' fears, worries and disease progress, Coyle said patients with advanced disease may "test the waters" in communicating to their nurse.
"A window of opportunity may open up to really hear the patients' worries and concerns from that tentative voice. If the nurse either does not 'hear' the question or is uncomfortable in responding and therefore does not respond, the patient may withdraw and that opportunity is lost," she said.
If a window of opportunity is missed due to the nurse's discomfort with these discussions, there is a higher possibility that a plan of care will be adopted that is incongruent with the patient's values and wishes. The opportunity may or may not present itself a second time, or the patient may remain or become closed off in communicating their real concerns.
Clumsy communication or giving information to a patient who is not prepared or ready to hear the information can cause increased anxiety and thereby harm - the patient may no longer see the nurse as someone who understands them.
"Skilled discussions throughout the disease trajectory are essential to preserving the patient's values and wishes as the treatment options are considered," said Peereboom.
"Because the relationship is based on trust, clumsy communication can leave a patient feeling abandoned, fearful and distrustful. Without trust, the patient will be unlikely to share their thoughts and feelings with the nurse, creating a barrier to the exchange of sensitive and nuanced communication."
Both Coyle and Peereboom believe it is possible for communication skills to be taught.
"With training and practice, a nurse with sharpened communication skills will be able to discern the patient's values, beliefs and concerns, obtaining the information needed to promote the patient's evolving goals of care throughout his/her disease trajectory," said Peereboom.
Implicit in this nursing role at end-of-life is the ability to 'sit' with the distress - acknowledge the emotions, ask what was said/heard and the meaning to them (the two may be different) - clarify and correct any misconceptions, listen to their questions, address their fears in concrete terms and make referrals to other members of the multidisciplinary team as appropriate, said Coyle.
"Many patients and their families fear the dying process. Open conversations about death and dying can be helpful in demystifying what to expect," she concluded. "The nurse, by addressing specific fears, correcting myths and giving helpful medical information about symptoms that may occur and how they will be managed, can help restore a sense of control and decrease uncertainty."
Beth Puliti is a frequent contributor to ADVANCE.