How we do it
Jennifer Shin MD
Abstract
Hospice programs provide comprehensive, compassionate care to dying patients and their families. However, many patients do not enroll in hospice, and those who do generally receive hospice care only in the last weeks of life. Although patients and families rely on their physicians to discuss hospice, there is often inadequate communication between patients and physicians about end-of-life issues. We describe a Six-Step Roadmap for navigating discussions about hospice adapted from the SPIKES protocol for delivering bad news: setting up the discussion, assessing the patient’s perception, inviting a patient to discuss individual goals and needs, sharing knowledge, empathizing with the patient’s emotions, and summarizing and strategizing the next steps.
Article Outline
- A Six-Step Roadmap
- Step 1: Set Up the Discussion About Hospice
- Step 2: Assess the Patient's Perception
- Step 3: Invite the Patient to Discuss Goals of Care and Needs for Care
- Step 4: Share Knowledge
- Step 5: Empathize With the Patient's Emotion
- Step 6: Summarize the Discussion and Strategize Next Steps
Case
Mr. C is a 54-year-old man with metastatic lung adenocarcinoma who presented 1 year ago with multiple lung nodules and hepatic metastases. His tumor responded to initial treatment with four cycles of carboplatin and pemetrexed, and he was treated with maintenance pemetrexed for 5 months before his liver lesions progressed. Despite treatment with docetaxel and then erlotinib, his liver and lung tumors progressed rapidly. He has lost 10 pounds in the last few weeks and is now so fatigued that he spends most of his day resting in his recliner. He has been admitted to the hospital twice in the last month for worsening dyspnea in the setting of progressive pulmonary metastases.
Introduction
Hospice programs provide high-quality, compassionate care to dying patients and their families through an interdisciplinary team specializing in pain and symptom management.[1] and [2] These patients also receive medications and supplies, durable medical equipment, and home health aide services. Patients and their families receive support from a chaplain, social worker, physician, nurse, and volunteer. Families are offered bereavement services for at least 13 months following the patient's death (Table 1).3
| Services |
| • Pain and symptom management |
| • 24-hour telephone access to a clinician |
| • Assistance with personal care needs |
| • Help with errands and light housework |
| • Spiritual support |
| • Companionship for the patient and family |
| • Bereavement counseling before and after the patient's death |
| • Patient and family education and counseling |
| • Case management and coordination |
| • Advance care planning |
| • Medications and supplies related to the hospice diagnosis |
| • Durable medical equipment |
| • Child bereavement services |
| • Respite services (up to 5 consecutive days of inpatient care to allow families a needed break) |
| • Inpatient hospice (for treatment of severe symptoms that cannot be managed at home) |
| Team members |
| • Physician |
| • Nurse |
| • Social worker |
| • Home health aide |
| • Chaplain |
| • Bereavement counselor |
| • Physical therapist |
| • Occupational therapist |
| • Volunteer |
National Hospice and Palliative Care Organization. NHPCO Facts and Figures: Hospice Care in America.3
Families report high levels of satisfaction with hospice and are more likely to describe high-quality care.1 Despite this, only 40% of people in the United States die while receiving hospice care.3 Although longer hospice stays are associated with better quality of life in patients and less depression in bereaved family members,[4] and [5] many patients enroll very late in the course of illness. In fact, the median length of stay is just over 3 weeks, and a third of patients die or are discharged within 1 week of hospice enrollment.3 The result is that brief exposures to hospice at the end of life do not allow patients and families to take full advantage of the benefits.6
There are several explanations for why people enroll in hospice so late. The Medicare Hospice Benefit requires hospice patients to choose a plan of comfort care, which means that they must usually forgo disease-directed therapies unless they provide a specific palliative benefit. Furthermore, the financial per diem payment structure of hospice means that patients may need to forgo palliative treatments that cannot be covered under the typical hospice reimbursement (approximately $150/day for routine home care). Patients may not be willing to give up these therapies or may be reluctant to transition from a model of care focusing on disease-directed therapies to one with palliation as the goal.
Patients may also enroll in hospice later if their physicians do not discuss hospice or if they have these discussions in the last few weeks of the patient's life.[7] and [8] Physicians may delay hospice discussions because they are unsure of the patient's prognosis,9 although the disease trajectory in patients with cancer is often more straightforward than in patients with non-oncologic diagnoses. Studies have documented deficiencies in doctor–patient communication regarding prognosis and end-of-life issues,10 and patients report inadequate communication with physicians about shared decision making at the end of life.1 Another study found that about half of patients diagnosed with metastatic lung cancer reported not having discussed hospice with a provider within 4–7 months after diagnosis.11
Although these discussions may be delayed or avoided altogether, seriously ill patients value the ability to prepare for the end of life.[12] and [13] Patients rely on their physicians to discuss hospice and other end-of-life care options. Furthermore, most family caregivers report that communication with their oncologists was important in helping them to understand the patient's prognosis and to see the role that hospice could play as a treatment alternative.7
These conversations are often difficult for patients and families and can also be challenging for physicians. Nevertheless, communication skills in discussing transitions to palliative care can be learned.[14] and [15] Although these discussions are not nearly as straightforward as a medical or surgical procedure, one can approach them with the same methodical preparation and careful consideration of the steps involved.
When Is a Hospice Discussion Appropriate?
To be eligible for the Medicare Hospice Benefit, a patient must have a prognosis of 6 months or less if his or her illness runs its usual course; also, the patient needs to be willing to accept the hospice philosophy of comfort care. This second criterion is not formally defined but is generally accepted to mean that the patient must be willing to forgo disease-directed therapies related to the hospice admitting diagnosis.
These eligibility criteria should not be used to define the patients for whom a hospice discussion is appropriate however. When a patient's goals and values reflect a desire to focus on palliation, it is time for the physician to initiate a hospice discussion. Other triggers for early hospice discussions can include a change in clinical status, recent hospitalization, decline in performance status, new weight loss, or complication of treatment. Although these factors may prompt a discussion of options for care, including hospice,[16] and [17] not all discussions will lead to a hospice enrollment decision. Nevertheless, earlier discussions that prompt conversations about a patient's needs, goals, and preferences can facilitate later decisions about hospice and other treatment options.
A Six-Step Roadmap
We provide a Six-Step Roadmap for navigating discussions about hospice adapted from the SPIKES protocol for delivering bad news.18 This strategy is comprised of six communication steps that can be remembered by using the mnemonic SPIKES: setting up the discussion, assessing the patient's perception, inviting a patient to discuss individual goals and needs, sharing knowledge, empathizing with the patient's emotions, and summarizing and strategizing the next steps.
Step 1: Set Up the Discussion About Hospice
Before discussing hospice with a patient and family, it is important to communicate with other members of the medical team to ensure an understanding of the patient's prognosis and treatment options. It is also helpful to find out what the patient and family may have expressed to other providers regarding these issues and how they have been coping. Any provider who has been in contact with the patient may be able to contribute to this consensus, including the medical oncologist, radiation oncologist, palliative care physician, primary care physician, home nurse, and social worker. A clear, unified message from the team decreases confusion for the patient and family.
Once a common agreement has been established regarding the patient's prognosis and treatment options, physicians can schedule a time and arrange for a place to allow for an uninterrupted conversation. Scheduling a patient at the end of a clinic day or visiting a patient in the hospital during an admission are potential ways to do this. Before scheduling a meeting, however, it is essential to know who the patient would like to be present at the meeting. One approach may be to tell the patient that there are important options to discuss regarding the next steps in his or her care and find out who may be able to help the patient with such decisions (Table 2). Additionally, a palliative care physician may cofacilitate these discussions. If the patient already has a palliative care physician, it may be helpful to have him or her involved in the meeting. If the patient has not yet been evaluated by a palliative care team, it may be possible to consult a palliative care specialist who can attend the meeting or follow up with the patient afterward.