When discussing medical issues with family members, particularly through a translator, it is often helpful to confirm their understanding: “I want to be sure that I am explaining your mother’s treatment options accurately. Could you explain to me your understanding about your mother’s condition and the treatment that we are recommending?” “Is there anything that would be helpful for me to know about your family or religious views about serious illness and treatment?” “Sometimes people are uncomfortable discussing these issues with a doctor who is of a different race or cultural background. Are you comfortable with me treating you? Will you please let me know if there is anything about your background that would be helpful for me to know in working with you or your (mother, father, sister, brother)?” The physician’s role in managing hospice patients Hospice is based on the idea that the dying patient has physical, psychological, social, and spiritual aspects of suffering. Hospice is a philosophy, not a specific place, and can be provided in any setting, including patients’ homes, nursing homes, and hospitals. 28 Hospice typically involved an interdisciplinary team providing access to a wide range of services to support the primary caregiver, who is responsible for the majority
of the patient care. In 2017 about 1.5 million Medicare beneficiaries received hospice care, a 4.5% increase from the previous year and nearly 200,000 more people than used hospice in 2012. 29 To be eligible for hospice, a patient must have a terminal illness and an estimated prognosis of less than six months. Patients with non-cancer diagnoses (e.g., congestive heart failure, chronic obstructive pulmonary disease, stroke, dementia) currently represent about 70% percent of all hospice decedents. 29 The responsibility for hospice referral in a non-cancer diagnosis often falls to the primary care physician, facilitating continuity of care for the patient in his or her final days and months. In making an appropriate referral, physicians should be aware of some common misconceptions about hospice care (see Table 4). BEFORE MOVING ONTO THE NEXT SECTION, PLEASE COMPLETE CASE STUDY 3 ON THE NEXT PAGE. Determining prognosis Deciding whether a patient has a life expectancy < 6 months is an unavoidably imprecise exercise, however the following scales or tools provide clinicians with some quasi-objective criteria to help guide decisions: • Karnofsky Performance Scale 32
• National Hospice Organization Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases 33
• Palliative Performance Scale 34 • Palliative Prognosis Score 35
Referral patterns Continuity of care and multigenerational relationships allow a family physician to guide a patient and family through the hospice referral process with a unique knowledge of the patient’s values, family issues, and communication style. (In general, most hospice referrals come from physicians, although social workers, nurses, and patients’ families can also make a hospice referral.) The majority of caregivers and families of patients who have received hospice care report that they would have welcomed more information about hospice from their primary care physician at the time the diagnosis was labeled terminal. Most hospices expect the referring physician to remain in charge of the patient’s care and to be available by phone or other means for consultation, although expectations for availability vary by hospice. In some cases, the local hospice medical director may be willing to cover the attending physician on weekends and during vacations.
Table 4. Common misconceptions about hospice care 30
Misconception
Clarification
Patients will be discharged from hospice if they do not die within six months.
There used to be a six-month regulation that penalized hospices and patients when a patient lived too long, but it was revised and there is no longer any penalty for an incorrect prognosis if the disease runs its normal course. Medicare does not require a DNR order to enroll in hospice, but it does require that patients pursue palliative, not curative, treatment; individual hospice organizations may require a DNR order before enrolling a patient. Medicare does not require a primary caregiver, but this may be a requirement of some hospice organizations. Most hospice organizations encourage primary physician involvement; the primary physician becomes a part of the team and contributes to the hospice plan of care.
Patients in hospice must have a DNR order.
Patients in hospice must have a primary caregiver.
The primary physician must transfer control of his or her patients to hospice. Only patients with cancer are appropriate candidates for hospice.
Anyone with a life expectancy of less than six months and who chooses a palliative care approach is appropriate for hospice. Only Medicare-eligible patients may enroll in hospice. Most commercial insurance companies have benefits that mimic the Medicare Hospice Benefit; individual hospices vary in their willingness to take uninsured patients. Patients in nursing homes are not eligible for hospice. This was once true, but Medicare now covers patients in nursing homes. Patients are not eligible for hospice again if they revoke the hospice benefits. Patients who want to return to hospice care can be readmitted as long as hospice conditions of participation are met. Only physicians can refer patients to hospice. Anyone (e.g., nurse, social worker, family member, friend) can refer a patient to hospice.
Hospice care precludes patients from being able to receive chemotherapy, blood transfusions, or radiation. Patients who have elected the hospice benefit can no longer access other health insurance benefits.
Medicare requires that hospice must cover all care related to the terminal illness; individual hospice agencies are allowed to determine whether a specific treatment is palliative (providing symptom relief), which will guide what treatments they are willing to cover.
Each insurer has rules defining eligibility for covered services; medical problems unrelated to the terminal illness continue to be covered under regular Medicare insurance. Patients in hospice cannot be admitted to the hospital. While the patient is enrolled in hospice, most insurance companies, including Medicare, will still cover hospital admissions for unrelated illnesses, as well as for the management of symptoms related to the terminal diagnosis, and respite care. Hospice care ends when a patient dies. All hospice programs must provide families with bereavement support for up to one year following the death of the patient.
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