At some point during a failing treatment process, the focus begins to shift from cure to palliation, and end-of-life care begins. The decision to enter hospice or simply to begin gradually stopping aggressive treatments rests first and foremost with the patient. The patient is the only one who knows when it’s time to stop seeking aggressive or curative treatments and instead to seek comfort measures and support for quality of life throughout the dying process.

Of course, it’s important for the family — however the patient defines that term — to be involved in deciding when the time is most appropriate to move from cure to care. But ultimately, the final decision rests exclusively with the patient. Establishing and protecting this right for the patient and his family is your ethical responsibility, allowing the patient to maintain a sense of control over his future and his autonomy as an adult.

In end-of-life care, as much as in any arena of nursing, mutual trust forms the foundation of a therapeutic nurse-patient relationship. The patient must be able to trust that you are both competent and knowledgeable, a capable and reliable practitioner. In return, you must be able to trust that the patient is providing accurate information and expressing thoughts and feelings to the best of his ability. This is the only way you can confidently plan and provide care that meets the patient’s physical, emotional, spiritual, and cultural needs. When trust is breached on either side of the relationship, your ability to help the patient achieve his goals is threatened.

Before making the decision to begin end-of-life care, the patient and his family may have hoped for cure, for recovery, for life to continue as it was before the patient became seriously ill. Once the patient decides to change his treatment focus, he takes the first step toward his individualized dying process. To navigate this process, he and his family must recognize the futility of their earlier hopes, a recognition that can be even more devastating if it leads to hopelessness.

Hope is an intangible quality that lets us overlook a present discomfort in order to achieve a desired goal. One of your most important roles — both clinical and ethical — at this time is to help the patient and family maintain a sense of hope by refocusing on attainable goals. (See Transforming the meaning of hope.)

This task isn’t easy, and you may struggle with the awkward balance between truthfulness and hopefulness. In fact, years ago, it was common for physicians to withhold a diagnosis of terminal disease in an effort to keep the patient from sinking into hopelessness. Some even created an elaborate pretense to avoid discussing the inevitability of the patient’s death, instead choosing to manipulate conversations in the hope that the patient would discover the truth of his diagnosis for himself without being told by others. Although remnants of this kind of thinking remain, especially among physicians uncomfortable discussing death, experts in death and dying agree that this approach removes the patient’s autonomy and opportunity to complete crucial goals before he dies.

Naturally, you never want to dispense information in a callous or insensitive way, even if what you say is technically true. For example, in even the bleakest situation, never say that nothing more can be done for the patient. (See Power of suggestion, page 26.) Be honest with the patient about the symptoms he likely will experience and the methods that can be used to manage those symptoms. Explain that his care team will do everything possible to ease his transition. And help the patient refocus his hope.

Hope for a patient approaching the end of life can be maintained through the idea of transcending self. This can occur as the patient reaches out to
others, accepts help, experiences pleasure from his surroundings, and reminisces about his life. Meaning can be found through creation of a legacy, letting go of meaningless activities, and living in the moment. The end of life can be seen as a time of reflection, achievement, and continued opportunity. With this view, it’s clear that failure to disclose important information at appropriate times and with the appropriate sensitivity may limit or remove the patient’s opportunities for growth and satisfaction with his life.

In addition, address the patient’s specific needs. Help him understand and embrace the things for which he can hope, including that he’ll have: