MEDICAL-SURGICAL NURSES routinely care for patients who are terminally ill. This article briefly describes the care of two patients hospitalized at the end of life. Palliative care was initiated early for one patient but not the other. These two patients illustrate the importance of initiating discussions about palliative care early in a patient's illness to allow for a natural death with dignity.
“Jim,” 66, was diagnosed with pulmonary fibrosis, which he'd lived with for many years. Although hospitalized several times during his disease process, he'd lived his life as normally as possible despite requiring supplemental oxygen at all times. Even though he and his family understood that his condition was terminal, they hadn't discussed his care preferences and other end-of-life issues that could arise as his health status deteriorated.
Recently, Jim was emergently admitted to the hospital because his condition had deteriorated. He and his family assumed that after aggressive treatment, he'd return home as he'd done many times before. But Jim's clinical status continued to deteriorate and he became unresponsive and required ventilatory support. Jim died in the ICU a few days later with his family at his bedside. Unfortunately, Jim never got to say goodbye to his family.
“Patrick,” 86, was also admitted to the ICU with complications related to pulmonary fibrosis and a poor prognosis. He'd lived many years requiring supplemental oxygen at home and the assistance of palliative care. This family had talked with Patrick repeatedly about his end-of-life wishes, including his desire to forego aggressive or futile treatments. They'd all said their “goodbyes” many times. At the point when Patrick became unresponsive, the family honored those wishes and declined ventilatory support. As he continued receiving palliative care to keep him comfortable, the family sat with him on his last day and talked about fond memories, confident that they were honoring his choice for a natural death.
If Jim had known from the beginning of his hospitalization that his short-term prognosis was poor, he might have chosen to spend his time differently. For example, he could have opted to avoid ventilatory support and spend more quality time with his family during his last few days. Given Jim's terminal illness, he and his family would have benefited from discussions about palliative care and life-support options early in the course of his illness.
In 2017, an American Nurses Association (ANA) panel issued a call to action for nurses to lead and transform palliative care, urging that “all seriously ill and injured patients, families, and communities receive quality palliative care in all settings.”1 The panel also pointed out that continuing to provide aggressive treatment to patients who are unlikely to survive creates moral distress in nurses and increases patient and family suffering. One recommendation is that discussion of prognosis and treatment begin when the patient receives a life-threatening diagnosis. Another recommendation is to address end-of-life issues in the patient's home before a crisis occurs.
Research has shown that patients who are admitted to palliative care earlier in their illness have less aggressive end-of-life care, live longer, and experience a better quality of life. Palliative care also reduces symptom burden, improves mood, and allows more patients to die at home.2 When a terminally ill patient is incapacitated and a question arises about whether aggressive treatment or hospice care is in the patient's best interests, family members need to know what the patient would want so they can respect those wishes.
One issue to be addressed at end of life is do-not-resuscitate (DNR) status. Some patients fear that if they ask for DNR status, they won't receive comfort care or aggressive pain management. Richardson and colleagues found that early DNR orders were associated with less aggressive care, fewer beneficial procedures, and a worse survival rate.3 This is an important issue because patients may be less willing to discuss end-of-life issues for fear that they won't receive appropriate palliative care.
The ANA has issued guidelines to help nurses think differently about DNR orders.4 A key point in the guidelines involves the language we use when we talk to patients and their families. For example, instead of saying, “do not resuscitate” or “terminate treatment,” nurses could use the phrase, “allow a natural death.” This terminology clarifies that the patient isn't being killed or abandoned, but rather that death is imminent.
Another strategy is to provide patients and families with resources for palliative care. When hospitals have a palliative care nurse or program, terminally ill patients and families can be asked about a referral upon admission.
Nurses can also help patients and their families find reliable information on palliative care on the Internet. An excellent resource is GetPalliativeCare.org, provided by the Center to Advance Palliative Care. One of many resources it offers is a handout for patients and families that nurses can provide on admission. Besides describing what palliative care is and who might need it, this site also presents stories of real patients who received palliative care and the ways in which it enhanced their final days. Nurses, patients, and families may find these stories helpful in making end-of-life decisions.
Cultural and ethical issues
The nurse needs to practice both cultural and ethical humility when caring for patients who the nurse believes will benefit from palliative care. Jurchak describes an experience in which she was asked to talk with a family whose loved one was clearly dying.5 Learning that they were still hoping for a miracle, she realized that the most valuable service she could provide would be to encourage family members to tell their story, share their hopes and dreams for the patient, and make their wishes known. After telling their story, the family accepted that the patient was dying and asked the healthcare team to implement comfort care to facilitate a natural death. As the author listened, she gained the perspective of a “beginner's mind,” which helped to renew her own passion for her work.
Hyde, Kautz, and Jordan also point out that evidence supports the need to assess how each family makes end-of-life decisions in order to avoid cultural missteps, and to ensure that the patient and family wishes are met.6 Nurses need to ask, “How do you make decisions in your family?” and “How can I assist you to make a decision?” It may be helpful to ask, “Are there members of your family (or community) who can help you make a decision?” If language barriers exist, the interpreter must be trained in helping families make end-of-life decisions so the interpreter won't miss subtle cues from the patient and family when discussing palliative care.
Discussing palliative care and end-of-life issues between patient, family members, nursing staff, and healthcare providers in the early stages of hospitalization clearly has many benefits. But as healthcare professionals, we must also be sensitive to families and patients who aren't ready to accept the diagnosis and refuse to discuss palliative care. When this occurs, we need to be sure the family continues to understand the treatments and likely outcomes, and make ourselves available to listen and help them with decisions.
Community of caring
To the extent possible, all parties should be included in the discussions. Think of the group as a community made up of all those affected by the patient's terminal illness. When all parties are included in these discussions and are knowledgeable about end-of-life care, the likely outcome will be less conflict within the family, less moral distress and burnout in nurses, and a more peaceful death for the patient.
1. American Nurses Association Professional Issues Panel. Call for Action: nurses lead and transform palliative care. 2017. http://www.nursingworld.org
2. Levy M, Smith T, Alvarez-Perez A, et al Palliative care version 1.2016. J Natl Compr Canc Netw
3. Richardson DK, Zive D, Daya M, Newgard CD. The impact of early do not resuscitate (DNR) orders on patient care and outcomes following resuscitation from out of hospital cardiac arrest. Resuscitation
4. American Nurses Association. Position statements: nursing care and do-not-resuscitate (DNR) and allow natural death (AND) decisions. 2012. http://www.nursingworld.org
5. Jurchak M. Been there, done that: ethics consultation and the importance of “not knowing.” Atrium
6. Hyde YM, Kautz DD, Jordan M. What to do when the family cannot agree to withdraw life support. Dimens Crit Care Nurs