In North American culture there is a great divide between advance end-of-life care planning and advance end-of-life financial planning. Although the costs of care can influence care choices, financial information is seldom part of planning for future care. A combination of medical and financial factors, including limited benefits, varying financial circumstances, and uncertain prognoses, result in complex and unpredictable care needs for patients in their final months.
Caregivers, already at risk for social, emotional, and physical harm, can also suffer from financial burden related to patient care needs. When discussing goals of care, health care providers are careful to provide patients and caregivers all the medical information they need to make an informed decision. But can their decisions be truly informed if they don't understand the potential financial burden of care?
Good care relies on an understanding of and a willingness to work within patients’ lives. For dying people and their families, this includes financial realities. Patients and caregivers are often unaware of the potential costs of care in the final months of life, from the need for private caregiver services, to medications, to the additional costs caregivers incur through missed work time.
Advance care planning conversations are already difficult, and many patients (and nurses) may want to avoid talking about money. But nurses are skilled in having difficult conversations and have the ability to make them part of their regular practice. Although finances have been viewed as a private matter, or one between patients and their lawyer, financial realities are part of patients’ and caregivers’ experiences. Nurses have a responsibility to reflect that in the care they provide. Information about financial costs and resources, whether it comes from the nurse or from a family's own pursuit, is crucial to informed decision making when planning for care.
While it is not within nurses’ scope of practice to act as financial planners, they can easily provide certain basic information and resources. Common coverage plans, such as national or state benefit programs, are often well known by nurses, and informed nurses can provide information on what is likely to be covered or not covered as illness progresses. For private insurance or other less familiar coverage plans, nurses should counsel patients and caregivers to contact their plan administrators early during the care-planning process, so that they are knowledgeable about financial costs and restrictions. In addition, nurses often know about other private resources that are available in the community, and can share with patients and family information about approximate hourly or daily home care costs in their area.
Assessing caregiver fitness gives nurses an opportunity to ask about employment, vacation time, and leaves of absence. Health care organizations can support nurses by providing fact sheets and brochures for families designed to prompt financial planning, as well as other sources of financial information. It is important that patients and families have this information early in the care-planning process and can take financial realities into account when making decisions.
It is an unfortunate reality that at the end of life, many patients do not receive the care they need and are unable to attain their goals of care because of financial costs. This is not a problem unique to the United States. Even in countries such as Canada, which has a single-payer public health care system, there are limits to the services available to patients and caregivers at the end of life. While this article counsels nurses to ensure that patients and families have as much financial information as possible for informed decision making, this is a stopgap measure in a system that too often fails to provide needed care. Nurses have an additional responsibility to advocate for adequate coverage so that one day they will no longer need to help patients and families prepare for financial hardship.