Research has shown that most people do not receive the type of care they want in their final months of life. One reason for this is inadequate medical education regarding death and dying, which prevents clinicians from communicating effectively with their patients. In addition, a medical culture that emphasizes curing over other care goals too often propels clinicians to implement aggressive care.
Another factor is the difficulty clinicians often 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 and their family members unable to make informed decisions. It also may prevent or delay the use of palliative care, which includes but is not limited to 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 a traumatic experiences for their loved ones. (See also 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 generally limits hospice coverage to Medicare beneficiaries 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 deter 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 Advanced Practice Registered Nurses to certify patients for hospice care, even though they may serve as the patient’s attending doctor and recertify.
The ACA authorized a Medicare demonstration that allows participating 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 to understand the range of medical and palliative options, the knowledge base about such care must be substantially improved.
The standard medical, nursing, and social work curricula (and continuing education programs) should cover palliative care and the skills needed to communicate with patients suffering from serious conditions and their families effectively. Providers should be educated about the importance of understanding cultural values and beliefs in delivering end-of-life care.
Access to palliative 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; and
- improved access to palliative care services regardless of patient setting (e.g., hospital, nursing home, or residence).
Barriers to patients’ use of Medicare and Medicaid hospice benefits should be eliminated, including limitations based on life expectancy and the prohibition on the use of acute or other curative services.
Federal and state policymakers should support:
- 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 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.
Advance planning and directives
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 the 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’ decision-making 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.
Insurance coverage of hospice care
Health insurance plans should provide adequate coverage for hospice care.