5 Establishing Goals of Care Hospice nurses are experts at supporting patients and their families during the transition from curative care to end-of-life care. They partner with families to ensure their loved ones’ wishes are honored and periodically reestablish goals of care if the patient’s condition improves or declines. This chapter addresses the role of the hospice nurse in establishing goals of care and facilitating difficult conversations with patients and families. After reading this chapter, you will be able to: ■ Establish goals of care with patients and families ■ Manage difficult conversations regarding end-of-life care ■ Help facilitate family conversations regarding the patient’s end-of-life wishes and resolve family conflicts regarding end-of-life care ESTABLISHING AND REESTABLISHING GOALS OF CARE Prior to a referral to hospice, many patients have lived with chronic illness and disability for some time. Patients and their families may have had conversations with the primary care provider regarding goals of care and recommended treatments. Referral for hospice services is an indication that health care providers and patients feel that the goals of care have shifted primarily to symptom management, rather than curative care. Knowing that previously stated end-of-life wishes sometimes change as patients actually face a terminal disease, hospice nurses support patients as they establish or reestablish goals within the context of the disease process. For example, a patient whose living will previously included mechanical ventilation may decide that such intervention is no longer congruent with his or her end-of-life wishes. Focused conversations open the door to determining whether patients’ goals are consistent with hospice philosophy. Establishing goals of care is a learned skill that requires excellent communication skills and empathy for the patient’s circumstances. Conversations regarding goals of care can often begin by asking the patient whether he or she has a living will or an advance directive. Patients and families are sometimes unclear on the differences between these terms, so hospice nurses can clarify them using definitions provided by the National Hospice and Palliative Care Organization (2008). (See Figure 5.1.) If a patient has a living will or has established medical power of attorney, this is an indication that the patient has considered what type of end-of-life care he or she might want. Importantly, living wills are created by patients when they are well and attempting to envision what type of care they might want in the event of a medical emergency. One way that a patient may document end-of-life wishes is by using Physician Orders for Life-Sustaining Treatment (POLST), which: ■ Document a plan of care that is created through a serious conversation between a health care provider and patient ■ Are intended for patients who have a life-limiting disease and a life expectancy of less than 1 year (Bomba, Kemp, & Black, 2012) ■ Follow patients throughout all care settings, such as home care, in-hospital care, and long-term care facilities ■ Are typically printed on brightly colored paper so that they stand out in a chart (for a POLST example, see the Appendix) Question: Where can I find more information about POLST? Answer: Visit the National POLST website at www.polst.org/about-the-national-polst-paradigm/what-is-polst. Figure 5.1 Advance directives. For patients who have already had conversations about their wishes with their families and health care providers, reaffirming goals helps to establish a therapeutic relationship with the patient and ensure that the plan of care is consistent with the patient’s wishes. For patients who have not discussed their end-of-life wishes with their families or health care providers, the conversation can be more challenging and may involve reviewing or breaking bad news to the patient and the family. Several models for approaching difficult patient conversations have been published. MANAGING DIFFICULT CONVERSATIONS Hospice nurses working with terminally ill patients share bad news with patients and families on a regular basis. Although the patient may be aware of the terminal diagnosis and may have opted to forgo life-sustaining treatment, the illness trajectory may still catch patients off guard. One model of sharing serious news is the SPIKES model (Baile et al., 2000) that comprises the following six steps: S—Setting: The setting should be private and anyone whom the patient wants to have there should be present. The professional should sit down, take the conversation slowly, and establish a therapeutic rapport with the patient and family. The provider should also limit interruptions by asking those present to turn off cell phones and pagers. P–Perceptions: The professional should establish what the patient and family already know about the medical condition and their expectations, hopes, and fears. I—Invitation: The professional should establish what the patient and family want to know and elicit an invitation to share more information. K—Knowledge sharing: The professional should share the information with the patient and family after explaining that the news is serious. Medical jargon should be avoided and the professional should stop talking periodically to check the patient’s understanding. E—Emotions: After sharing the serious news, the professional should assess the patient and family’s emotional state and identify their emotions (e.g., sadness, shock, or anger). The professional should then try to connect the emotion to the circumstances, and express that to the patient and family as a way of expressing empathy and validating how difficult it is to receive unwanted news. S–Strategy and Summary: The professional should proceed to discussing interventions only if the patient and family are ready to consider them. The patient and family may feel uncertain about what to do or may seek guidance from the professional. Here, the professional can provide direction if indicated but should always engage in shared decision making with patients and families to ensure that their goals are honored. Fast Facts in a Nutshell
Nurse Key
Fastest Nurse Insight Engine
