Mr. C's medical oncologist, Dr. A, contacted Mr. C's radiation oncologist as well as his primary care physician. They all agreed that his prognosis could be measured in weeks to months and that his performance status precluded any further chemotherapy. Dr. A also spoke with the hospital social worker who met Mr. C and his wife during his most recent hospitalization. The social worker said that Mr. C's wife has been very distressed, particularly about his increasing debility and her difficulty in caring for him at home. When Dr. A visited Mr. C during his hospitalization, Dr. A explained to Mr. C that they would be making some decisions about the next steps in his care and asked who might be able to help with these decisions. When Mr. C said his wife would be this person, Dr. A asked that she come to his next visit. Dr. A decided to schedule Mr. C for an appointment at the end of his clinic session the following week.
Step 2: Assess the Patient's Perception
The physician can begin this discussion by asking the patient to describe his or her current medical situation (Table 2). Although the physician may have provided this information on prior occasions, it is important to hear the patient's perception of the diagnosis and prognosis. Patients with advanced cancer often overestimate their prognosis and are more likely to favor life-extending therapies over hospice.19 These questions provide an opportunity to address any misconceptions or gaps in understanding that the patient may have. When the physician, patient, and family are in agreement with the patient's current medical situation it allows for further exploration of the patient's hopes and concerns.
This part of the discussion should rely on open-ended questions designed to elicit the patient's perspective. In particular, an invitation to “tell me more” encourages patients to explore how they are thinking or feeling and can yield more information than closed-ended or leading questions. This phrase can also help redirect the conversation when necessary (“You mentioned before that you are worried that the chemotherapy is not working anymore. Tell me more about your concerns.”).
Dr. A asked Mr. C how he was doing overall and to describe his understanding of whether the erlotinib had been working. In response, Mr. C expressed his concern about his recent weight loss and lethargy. Dr. A asked Mr. C to tell him more about these concerns, and Mr. C said that he thought his symptoms were a sign that the erlotinib was not helping him. He said he knew that the CT scans showed progression of disease, and he wondered whether chemotherapy could help. Dr. A confirmed there was progression of cancer in his lungs and liver. Dr. A also expressed his concern that more chemotherapy would not provide additional benefit for him and may harm him. Mr. C and his wife were tearful and agreed that he was too weak for more chemotherapy. Dr. A acknowledged that the disease had progressed quickly and must be very upsetting to them.
Step 3: Invite the Patient to Discuss Goals of Care and Needs for Care
Before sharing information about hospice with a patient, it is important to understand the patient's hopes and fears about the future, goals of care, and needs for care. It is helpful to start with learning about the patient's perspectives on the future and linking that to the patient's goals of care. Once the goals are clear, it is easier to match the patient's needs with his or her goals.
One way to elicit patients' goals of care is by asking them to describe their hopes and fears about their cancer in the context of their life (Table 2). Patients may volunteer information about their hopes (eg, attending their daughter's wedding) or fears (eg, worrying about pain) that provide insight into their more global goals of care. Again, the “tell me more” phrase can be helpful (“Tell me more about what you mean when you say you are a burden on your family.”).
Once the patient and family express their thoughts, it is useful to restate the patient's goals by asking a question that summarizes the patient's statements (“From what you and your family have just shared with me, I hear that the most important thing to you is … . Did I understand you correctly?”). It is often challenging for patients to specifically articulate their goals of care. Asking a question allows the patient and family the chance to elaborate or offer corrections.
If a patient expresses unrealistic expectations (eg, a cure, years of life), “wish” statements can be helpful in providing gentle redirection. These statements express empathy while also communicating that the wished-for outcome is unlikely (“I wish that we could guarantee that … but unfortunately we can't.”). These statements can explain the reality of the situation in a compassionate manner (Table 2). Patients and families who have unrealistic goals of care may need time to readjust their expectations, and in these cases it may be prudent to revisit the discussion of hospice at a later date.
Once the goals of care have been established, it is important to further explore the needs for care. Although some of these needs may have been mentioned during the goals discussion, it is helpful to directly ask the patient and family about their needs. General questions about what has been hard for the patient and the family can be useful in eliciting needs, as are questions about what life has been like at home and how they are managing (Table 2). It is also important to ask more specific questions that pertain to the patient's symptoms such as pain or depression and those that address the family's needs for help around the house (Table 2). Once this information has been shared, it is often useful to repeat a summary back to the patient and family (“From what we have just discussed, it may be helpful to have a visiting nurse to assist with his medications and a home health aide to dress and bathe him … . Does it sound like this could be helpful to you?”). Often, these needs can be addressed by the multidisciplinary hospice team, and it is important to understand what needs exist in preparation for a discussion about how hospice might be helpful.
Mr. C shares with you that his two hospitalizations for dyspnea have been frustrating because he feels that they have prevented him from spending quality time with his daughters. Although he did not want to be admitted to the hospital, he tearfully expressed that he was worried about “suffocating to death” and did not want to die at home in front of his wife and children. Mr. C's wife also shares that it has been harder to bathe and dress him because he is becoming so weak. Mr. and Mrs. C agree that it would be helpful to have the support of a visiting nurse and a home health aide.
Step 4: Share Knowledge
Once the patient's goals and needs for care have been clarified, physicians can introduce hospice as a way of achieving their goals and meeting their needs. In presenting hospice in this transparent manner, patients and families can better understand how hospice is part of a plan of care that addresses their individualized goals and needs. Most family caregivers report that communication with their oncologists was critical in their understanding the patient's prognosis and hospice as a treatment alternative.7 In one survey, the majority of caregivers did not realize that their loved ones could benefit from hospice until their physicians first discussed it with them.7
A discussion of hospice should offer concrete information about the services provided to patients and their families (Table 1). Many patients and families do not understand the benefits, such as a visiting nurse for frequent symptom management or a home health aide to assist with daily patient care, until after enrollment. Many say they wish they had known sooner.20 By providing this information earlier, patients and families may make more informed decisions about hospice. This description also makes clear to the patient and family that hospice is not simply a generic recommendation but rather the physician's recommendation of a program that is the best fit for their specific goals and needs.
Given the emotional nature of these discussions and the large amount of information involved, it is important to ask the patient to explain in his or her own words how hospice could help (“To make sure I did a good job of explaining things, can you tell me what we just talked about in your own words?” and “How do you think hospice might help you?”). This provides the opportunity to assess understanding and clarify any confusion.
Since not all patients are best served by hospice, the discussion may also be expanded to include other options for palliative care. For example, hospice is not equipped to care for debilitated patients at home who do not have a caretaker, nor is it usually able to absorb the costs of expensive palliative treatments. Sometimes, larger hospices may be able to make exceptions on a case-by-case basis, but it is helpful to be aware of other options for palliative care like bridge-to-hospice home care and outpatient palliative care programs.
Dr. A explained that hospice could provide intensive management of his dyspnea with the assistance of a visiting nurse and a 24-hour phone line to call for assistance. With these measures in place, Dr. A said that he hoped hospitalizations could be avoided, allowing him more time at home with his family. Dr. A addressed Mr. C's concern about dying at home and shared with him that he could be transferred to an inpatient hospice if death seemed imminent. Dr. A shared with Mrs. C that hospice could provide the services of a home health aide, which seemed to reduce her concerns about being able to care for her husband as he became weaker.
Step 5: Empathize With the Patient's Emotion
In discussions regarding end-of-life care, patients and families value empathy, compassion, and honesty balanced with sensitivity and hope.21 Throughout the conversation, it is likely that the patient and family will express a range of emotions. Rather than providing immediate reassurance or trying to “fix” the emotion, it can be helpful to use an empathic statement to let the patient know that his or her emotions are recognized.15 Empathic responses address and validate a patient's emotions and encourage further disclosure.22 The NURSE mnemonic summarizes ways in which to respond to emotions: naming, understanding, respecting, supporting, and exploring the feelings the patient has shared (Table 3).[15] and [23]