Helping patients and families shift care goals from curative to palliative remains a challenge for many nurses. Nurse.com asked Mary Magee Gullatte, PhD, RN, ANP, BC, AOCN, FAAN, president of the Oncology Nursing Society and vice president for patient services and CNO at Emory University Hospital Midtown in Atlanta, to share her wisdom about end-of-life care discussions.
Q. How do nurses know it’s time to broach the subject of end-of-life care?
A. It’s important to engage the patient and family early on, depending on the treatment and prognosis. We have to be open and honest. Many times, assessing readiness is intuitive based on words or phrases you hear, such as, “We just need to have faith” or ”It’s not his time.” I usually take my cues from the patient and family. They may start reminiscing about their life and quality of life. Oftentimes, when they no longer have that quality of life, they tell us they are ready to go and need for the family to know it’s OK. The nurse may then have a private conversation with a family member selected by the patient about his or her being ready to let go.
Q. What goes into the discussion?
A. You need to have a candid conversation about where they are in their disease trajectory, what their treatment options are, what their care plan can and should include and the level of care, such as skilled nursing or home care. It’s about having a relationship with the patient and family and letting them know we are here to support you. I like to use the phrase “no code does not mean no care.” One of patients’ biggest fears is that we are not going to do anything more for them, and they will suffer and be in pain.
It’s our job to reassure them about what we are going to do to promote comfort and to make sure they are getting whatever we can give to support them in a death with dignity.
Q. How do you balance providing information while not destroying hope?
A. You want to be realistic and not give false hope. You do not take away the coping mechanisms people may have. They may believe that a miracle may happen. We don’t take that away, but at the same time, we are open and honest about the treatment plan, how we will manage the symptoms and what to expect as they transition through the final stage of life.
Q. What are some of the challenges?
A. It’s not an easy conversation, even for healthcare providers. It’s difficult, because in Western medicine, it’s about a cure. We don’t embrace the fact that death is the final stage of life. The younger the patient is when they’re faced with a life-threatening condition or illness, the harder it is for the patient to accept they are going to die or the family to accept they will lose their loved one. Patients often will try bargaining for more time to attend a wedding, graduation, birth or some other memorable life event. Additionally, family and patients’ spiritual and religious beliefs that prayer will change the prognosis often present a challenge.
Q. How do you overcome those challenges?
A. We have a team approach. The nurse may not be the first one to give them the prognosis, but we are there when the physician discloses that information. Depending where the patient is from a religious or spiritual perspective, we may have the chaplain take the lead, with us providing the pathophysiologic background to the patient. It may be a social worker with a background in counseling and who knows the options outside of acute care. We have more palliative care teams in hospitals, and some facilities have inpatient hospices. Members of palliative care teams are knowledgeable about symptom management and end-of-life care. Additionally, in palliative care the patient need not stop curative care as is necessary with hospice.
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