There are key steps that nurses can follow to improve upon patient expectations and their understanding of end-of-life care.
“Be prepared before you go into that room,” Brianna Kirkland, RN, Sangre de Cristo Hospice and Palliative Care, said during a presentation at the 3rd Annual School of Nursing Oncology, where she discussed these steps.
Before discussing a patient’s prognosis, nurses must ensure they make no assumptions when it comes to their or their family’s understanding of the state of their disease.
“Don’t fall into the trap of assuming someone has the same understanding of their disease or their situation as you do. This is the biggest piece right here, you want to be able to address what is expected. Not what you expect from this, but also what they expect,” Kirkland said.
The first step, she says, is for nurses to be able to diagnose the risk for dying. This can be done by looking for general indications of decline. Meanwhile, specific indicators related to certain conditions include the cancer itself – does it have aggressive or progressive symptoms; whether there is also heart disease; the presence of chronic obstructive pulmonary disease; a comorbidity of amyotrophic lateral sclerosis.
“High-quality end-of-life care, you have to be able to identify the patients who are risk of dying. As a practice, you need to be able to identify them and you need to be able to treat them differently. They are going through a different journey than all of the other patients we take care of,” Kirkland said.
The second step is for nurses to respect patient autonomy, support decision-making, and provide personalized care. To do this, Kirkland says, healthcare staff should ensure that an advanced care plan (ACP) is discussed and documented; share information across settings and teams throughout their e-health records; and minimize fragmentation of care by supporting one doctor or health professional to coordinate care of the terminally or chronically ill patients.
The third step is to ensure medical treatment decisions are reflective and respect the patient’s best interest. “Knowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of exceptional end-of-life care,” she said.
In the fourth step, nurses must ensure that proper management of symptoms is an ongoing component of end-of-life care. Of note, Kirkland added, symptoms can change as the patient’s condition may progress, and new or ongoing treatments may also contribute to this.
“There is a need for frequent review of function and symptom screening, as well as attention to non-psychological issues,” she said. “If you’re not good at it, find someone who is.”
Lastly, Kirkland recommends for the healthcare staff to support the patient’s family, their culture and their religion. “Providing support to family members and significant others before and after death is an essential part of providing good end-of-life care.”
“Their involvement – with patient consent – in discussions around the prognosis, the goals of care, the ACP are all important to this support,” she added. “It becomes essential if the patient lacks the capacity to make their own preferences kown.”
Kirkland B. Managing Treatment Expectations and Insights for End-of-Life Care. Presented at: 3rd Annual School of Nursing Oncology; August 2-3, 2019; San Diego, CA.