Palliative Care and Hospice

There is a distinction between palliative care and hospice care. Although it is common for the terms to be used interchangeably, they are not the same services. Palliative care services focus on pain and symptom management at any point during the patient’s treatment. A patient need not be diagnosed with a terminal condition in order to be appropriate for palliative care services. Patients may be undergoing aggressive treatment for ATC and still be appropriate for a palliative care consult. Ultimately, palliative care consultation can be useful at any stage of a serious illness and can be provided at the same time as aggressive, life-prolonging treatment. On the other hand, hospice care focuses on pain and symptom management for patients who are no longer receiving life-prolonging therapies. Some states mandate that physicians involve palliative care expertise and discuss palliative care options when patients are diagnosed with terminal illnesses. In 2009, The Terminal Patients’ Right to Know End-of-Life Options Act took effect in California (California Codes, Health and Safety Code Sections 442–442.7), while in 2011, The Palliative Care Information Act (Public Health Law section 2997-c) was passed in New York State. Such laws mean that failure to discuss palliative care options with terminally ill patients now violate state law. Although some critics (228) have pointed out that legally mandating such discussions is difficult in cases in which a terminal diagnosis is ambiguous, terminal illness is not ambiguous in ATC. Physicians practicing in states with palliative care laws would be required to involve palliative care expertise for their ATC patients.

Definition of a palliative care service

In an academic medical setting, a palliative care service is a multidisciplinary service that addresses physical, emotional, social, intellectual, and spiritual needs of the patient and family. Such services typically include one or more of the following: a medical practitioner specifically trained in palliative medicine; a nurse practitioner; and trained counselors to deal with patients and families coping with serious illness, life-limiting illnesses with no predictable endpoint, complications of therapies, or end-of-life situations. Palliative care is inclusive of life-prolonging therapies.

In the U.S. private practice setting, or a nonacademic setting, palliative care services are quite likely to be available in local hospitals, even in remote settings. As of 2009, >81% of facilities with 300 or more beds had a palliative care program, and 63% of facilities with >50 beds had palliative care programs. Not-for-profit and public hospitals were more likely to have a palliative care program than for-profit institutions. In most private practices—even in remote areas—a hospital close to the patient providing such services is usually available (119,229,230).

When to involve palliative care in ATC. Palliative care is useful at any point during the patient’s treatment, and expertise from palliative care services may help the patient remain more active and comfortable in resuming daily activities. Additionally, physicians who may have difficulty addressing the patient’s emotional, psycho-social, or spiritual anxieties about ATC can call upon palliative care experts to assist with these issues. In reference to specific patient management issues, such as pain control, nutrition, and airway preservation, see the appropriate sections in this document.

When to involve hospice care in ATC. When patients decline therapies intended to prolong life, yet desire dignity and quality of life for end-of-life care spanning the remainder of their illness, hospice care is appropriate. In such cases, the same palliative care teams or services are called in but are specifically provided with a “hospice” goal. In such cases, pastoral expertise or support may also be provided to patients and families, as well as hospice options. Hospice care is frequently undertaken within the patient’s home; however, in some cases, a hospice facility may provide the best setting.

Working effectively with a palliative care or hospice care team. Practitioners managing ATC patients should not “abandon” their patients to palliative care or hospice care teams. Rather, one of the patient’s physicians should serve to coordinate this care. Such a physician could be the oncologist, endocrinologist, or primary care physician, depending upon patient preferences, relationships with practitioners, and logistic concerns. The patient might still require a multi-team level of care or may choose to utilize the expertise of a single physician.

  • RECOMMENDATION 58 The treatment team should include palliative care expertise at every appropriate stage of patient management to help with pain and symptom control, as well as addressing psychosocial and spiritual issues. Palliative care services are appropriate for any ATC patient receiving treatment intended to prolong life.
       Strength of Recommendation: Strong
       Quality of Evidence: Low

  • RECOMMENDATION 59 The treatment team should engage hospice care for ATC patients who decline therapies intended to prolong life, yet still require symptom and pain relief spanning the remainder of their illness.
    Strength of Recommendation: Strong
    Quality of Evidence: Low