Some of the emotions arising during a hospice discussion may stem from preconceived notions or a prior experience. Therefore, it may be helpful to specifically ask patients and families about these perceptions and experiences. Common misperceptions may include the concern that hospice hastens death. Other patients view hospice as “giving up” and worry about being abandoned by their physicians. A hospice discussion provides the opportunity to directly address these concerns and provide clarification (“No, hospice does not hasten death. Hospice helps you have the best quality of life for whatever time you have.”).
Ultimately, some patients and families may decide that hospice is not the right choice for them. It is important to recognize that the time invested has not been wasted. Instead, if done well, these discussions offer an opportunity for the physician to align his or her goals and understanding with those of the patient and family. Specifically, these discussions are a chance to demonstrate a desire to understand the patient's individualized goals and to share concerns about disease progression. In essence, it is a valuable opportunity to establish a collective understanding about the patient's current situation while also laying important groundwork for future discussions.
Mr. C tearfully shared his concern about being a burden to his wife and about how his daughters would handle his progressive decline. Dr. A sat quietly, allowed Mr. C to fully detail his worries, and then said, “I can see how worried you are about your family and understand that you want to make sure that their needs are also addressed.”
Step 6: Summarize the Discussion and Strategize Next Steps
In all stages of cancer, patients and families rely on their oncologist for information about treatment options. This is particularly important when a patient's cancer has progressed despite therapy and when the focus of care may be shifting from disease-directed therapies to palliation. Just as a physician may have previously recommended a chemotherapeutic option for a patient, so should he or she recommend the therapeutic option of focusing on quality of life. If hospice appears consistent with the patient's and family's goals and needs, the physician should make this recommendation. It may be helpful for the patient and family to hear a summary of how hospice will meet their needs. If the patient is amenable to learning more about hospice but is not yet ready to enroll, the physician can arrange for an informational visit with the hospice team.
Dr. A recommends hospice and emphasizes that hospice would provide services that meet Mr. C's goals of symptom management, avoiding hospitalizations, and providing support for his family. Mr. C and his wife agree that hospice is the best option for them. They would like to enroll after they have spoken with their children about their decision.
Conclusion
Discussions about goals of care and hospice are not easy. They are rarely as straightforward as presented in this case, and an oncologist may face numerous barriers when attempting to have these discussions. For instance, treating physicians may have differing opinions on therapeutic options. Patients and family members may have different goals and may be in different stages of accepting a life-limiting cancer diagnosis. Additionally, these discussions take preparation, time, and skill. Although there are no easy solutions to these issues, the general guidance provided in this article focuses on suggesting tools and techniques that can make these discussions easier for oncologists, patients, and families. By increasing our competence and comfort with these conversations, we can reduce delays in offering patients the benefits of hospice as they near the end of life.
Although no algorithm will fully address the complexities and nuances of these conversations, this approach provides a general framework and offers tools to use while speaking with patients and families. Conversations about hospice do not begin with the recommendation of hospice but rather with an honest discussion of the goals and needs of a patient and family. If these goals and needs can be met with the services that hospice can provide, the physician has the opportunity to educate the patient and to make the recommendation as they would for any other therapeutic option.
Patients and families consider communication to be one of the most important facets of end-of-life care.24 Seriously ill patients value being able to prepare for death,13 and physicians have the duty to help patients and families prepare for the end of life.25 Physicians can help increase the time patients have to plan for the last phase of their lives by having honest and open discussions about hospice and other alternatives. Oncologists have the responsibility to present patients with the benefits and burdens of therapies throughout the trajectory of their illness, and it is critically important during the transition from disease-directed to palliative care. By exploring the option of hospice, patients and families can make informed decisions about whether hospice may meet their needs. Equally important, patients are given the control to choose how they would like to live the final phase of their lives.