Individuals continue to need high-quality health care as they approach the end of their lives. Yet research has shown that most people do not receive the type of care they want in their final months.
A number of obstacles make it difficult for patients to receive the end-of-life care they want. One key obstacle is inadequate physician education regarding death and dying, which prevents doctors from communicating effectively with their patients. In addition, a medical culture that emphasizes curing over other care goals too often propels physicians to implement aggressive care against patients’ wishes.
Another obstacle is the difficulty physicians have in making accurate prognoses for patients with life-threatening illnesses. This impedes the timely initiation of end-of-life care planning and leaves patients unable to make informed decisions. It also may prevent or delay the use of palliative care, such as hospice care. Lack of knowledge about palliative care—in particular, about adequate management of pain and suffering as well as psychosocial support—results in an unnecessary degree of suffering by terminally ill patients and an unnecessarily traumatic experience for their loved ones. (See Chapter 12, Personal and Legal Rights, for a discussion and policy on advance directives.)
Studies suggest that end-of-life care is often poorly coordinated among providers. This leads to increased use of acute-care services, inadequate pain control, and emotional stress for patients and families. Models that promote better coordination of care delivery have been shown to improve the quality and decrease the cost of end-of-life care.
Medicare limits hospice coverage to those with a life expectancy of six months or less, and requires them to choose between hospice care and curative care. These restrictions may inappropriately discourage or delay people from seeking hospice care. In addition, government attempts to discourage fraud and abuse among hospice providers in Medicare and Medicaid may have had an unintended negative effect of discouraging hospice providers from enrolling appropriate patients.
Medicare policy does not permit APRNs, such as nurse-practitioners, to certify patients for hospice care, but APRNs may serve the patient’s attending doctor and recertify.
The ACA authorized a Medicare demonstration that will allow beneficiaries to get both hospice care and non-hospice covered services at the same time
End-of-Life Care: Policy
To ensure that people are afforded every opportunity to make informed decisions about end-of-life care and the appropriate range of medical and palliative options, the knowledge base about such care must be substantially improved. Providers should be sensitive to cultural values and beliefs in delivering end-of-life care.
Federal and state policymakers should support:
- improved palliative care, including better treatment for emotional distress and the elimination of all barriers to the appropriate management of pain and suffering;
- improved access to palliative care services regardless of patient setting (e.g., hospital, nursing home, or residence)—all barriers to patients’ use of Medicare and Medicaid hospice benefits should be eliminated, including limitations on life expectancy and the use of acute or other curative services;
- the reimbursement formula for Medicare hospice care—this formula, which has increasingly incorporated costly interventions such as prescription drugs, radiation, and even surgery to relieve symptoms, should be reassessed to ensure that it accurately reflects the current mix of services used by beneficiaries receiving state-of-the-art hospice care;
- improved coordination of end-of-life care among providers; and
- changes in the way end-of-life care is financed so as to facilitate appropriate care (including more appropriate use of important palliative care services outside of hospice benefits).
States should legally recognize physicians’ and other prescribers’ duty to provide palliative care sufficient to relieve patients’ pain, limited only by patients’ informed wishes and the limits of medical science.
Policymakers should support programs to help patients plan their advance care and create clear, comprehensive advance health care directives to be shared with providers and loved ones.
The Medicare program should facilitate and support the drafting of advance directives by providing information at the time of enrollment on how to create or obtain an advance directive including designating a health care decision maker.
States should enact laws, such as the Uniform Health Care Decisions Act, that regulate advance health care directives and are enforceable in fact. Laws of this nature should be flexible regarding patient preferences in unpredictable circumstances and protective of appropriate end-of-life interventions.
Policymakers should support improved training and continuing education programs for health care professionals that would focus on palliative care and other issues associated with caring for dying patients. Programs that help providers improve their communications skills, particularly in imparting complex information to seriously ill patients and their families, should be part of standard medical, nursing, and social work curricula.
Policymakers should support research that aims at providing information that would further improve the quality of end-of-life care. Such research should focus on:
- identifying the outcomes most important to terminally ill patients and their families, and developing appropriate outcome measures;
- identifying the care processes linked to improved outcomes for terminally ill patients and their families, which will assist in the development of clinical practice guidelines;
- developing information that improves a physician’s ability to make terminal prognoses and determine probable outcomes of treatment options to inform discussion with patients and their families—in the meantime, the best currently available information must be communicated to patients and their families in a timely manner;
- using information technology to support patients’ decisionmaking and develop a better understanding of how patients’ wishes regarding life-sustaining treatment may change over time, as medical conditions and life situations change; and a better awareness of the adequacy of current policies for the creation, maintenance, and review of advance medical directives; and
- improving access and reducing racial and cultural disparities.
Health insurance plans should provide adequate coverage for hospice care.