Ms. Alfonso is a Registered Nurse, St. Mary’s Hospital, Waterbury, and Nursing Instructor, Stone Academy, Hamden, Connecticut.
The author discloses that she has no significant financial interests in any product or class of products discussed directly or indirectly in this activity, including research support. The author acknowledges the reviewers of this article for their valuable input.
Address correspondence to Heather Alfonso, MSN, RN, ACNS-BC, 195 Joy Road, Middlebury, CT 06762; e-mail: RNLifesaver@hotmail.com.
An end-of-life care issue in need of attention is the issue surrounding living wills, palliative care wishes, and their accessibility for the various health care professionals providing care for the individual. A living will is a written document that specifies the kinds of medical treatment a patient desires and can be very specific or very general. It is a part of a person’s advance directive, which also may include documentation regarding a health care proxy and power of attorney. A living will is effective only when it exists and reaches the hands of the health care team caring for the patient. When patients are transferred from one health care institution to another in the course of their illness, the living will document may not always follow them, thereby leaving patients’ true wishes regarding end-of-life decisions in the hands of well-meaning family members or medical professionals. The family member who has the copy may not always be present when the patient is being admitted to a different facility or hospital.
According to Domrose (2004), referring to the palliative care clinical guidelines published by the National Consensus Project for Quality Palliative Care, “patients’ top priorities include being free of pain and psychological stress, having control over decisions about their care, avoiding treatments that prolong their deaths, and not burdening their families” (¶13). Many states have implemented a method for ensuring that dying patients’ living wills are documents that will travel with the patients, regardless of where they are being cared for. Such states are able to do this through a centralized database that holds these vital documents and is accessible to health care providers.
Creating a Living Will
Advance directives and living wills are documents that provide specific instructions to caregivers regarding the patient’s health care wishes, should that person become unable to communicate. Advance directives can be created by anyone age 18 and older. In many states, no specific form is required; the patient’s wishes need only be in writing and signed by two witnesses. A lawyer or notary public is not necessary in formulating an advance directive or living will. A variety of forms are available at any hospital, as well as on each state’s Attorney General Web site (Hogan, 2008). Patients can also create an advance directive by stating their wishes to their primary care physician. The only criteria are that the patient is able to understand what they are choosing and able to make a competent decision.
Despite the simplicity of documenting advance directives, many patients do not complete them even when entering a health care setting. Studies indicate that “population-based estimates of completed advance directives range from 5% to 15%” (Ramsaroop, Reid, & Adelman, 2007, p. 277). This implies that 85% to 95% of the population does not complete advance directives, despite the fact that regulatory bodies have stepped in and incorporated laws that require health care facilities to present the information to their patients. In fact, only approximately 7 of 10 nursing home residents have some form of advance directive documented in their medical records.
The Cost of not Having a Living Will
A nationwide study conducted by Mitchell, Teno, Intrator, Feng, and Mor (2007) determined that when advance directives are in place, they “offer an opportunity to avoid a potentially distressing and costly experience for frail older persons” (p. 437). Adding to that result, a study conducted by Dr. Robert Monger, former President of the now-dissolved Wyoming Medical Society, found that approximately 1 in 20 tracheal intubations are unwanted, but patients’ wishes are unknown until days afterward (personal communication, August 27, 2009). He further estimated that any intubations followed by a minimum 2-day stay in an intensive care unit cost between $10,000 and $15,000 per incident (R. Monger, personal communication, August 27, 2009). If 25 to 50 unwanted intubations were avoided each year, the cost savings to the health care system would be approximately $250,000 to $750,000 (R. Monger, personal communication, August 27, 2009). In addition to the financial costs of failing to have a living will or advance directive, there is also an emotional cost for family members. Family members may experience less guilt knowing that their loved one’s exact wishes of are being carried out and that they were not the ones who had to make those very difficult decisions.
Nishimura et al. (2007) conducted a study at the Mayo Clinic that reviewed patients’ preferences regarding their advance directives. The study used a computer-generated sample of 500 patients who had submitted advance directives while under the care of the Mayo Clinic between 2004 and 2005. The study, one of the largest of its kind, noted that many patients who did receive information concerning advance directives were more likely to complete them if they received assistance from a health care professional (Nishimura et al., 2007).
Unfortunately, many clinicians continue to find it awkward to initiate a discussion concerning end-of-life issues. Some of the barriers cited by health care providers for not discussing the topic of advance directives with their patients include not having enough time, lack of privacy for discussion, and feeling that their patients are not sick enough to warrant a discussion of that intensity (Ramsaroop et al., 2007). Smith and O’Neill (2008) found that in many instances, lack of effective communication between the clinician and the patient resulted in advance directives that did not accurately describe the patient’s wishes, indicating that communication plays a key role in the discussion and implementation of these documents.
Accessing Living Will Documents
Even after a person prepares a living will or advance directive indicating their health care wishes, there may be instances in which the document is unavailable when it is needed. Often, the document is kept at home in a safe place. When an individual becomes ill and requires transport to a hospital, he or she is unlikely—and probably unable—to stop what he or she is doing and locate the document. In those situations, it is up to the family members to be aware of the existence and location of the document. In many situations, a living will or advance directive will not arrive at the health care facility until days after the patient arrives. Because of this, it is imperative that all of the patient’s health care providers have access to a copy.
Role of Nurses
Many nurses care for older adults who would benefit from having a living will or advance directive in place. Gerontological nurses are in a position to influence this issue in a positive manner, both as a direct provider of care and at the policy level. Nurses have the opportunity to implement change in policy at both the institutional and federal levels.
The process of completing advance directives should begin well before a hospital admission and requires the health care provider to provide education. Written material in the form of pamphlets and brochures should be made available during the initial discussion of advance directives with patients. Each patient should also have the opportunity to view a video detailing the usefulness of the advance directive document and the importance of indicating specific acceptable or nonacceptable palliative care measures. Gerontological nurses may choose to refer patients who have been given this information to a designated social worker or palliative care agent in the organization to help them further develop these documents.
Gerontological nurses can also be change agents on a much larger scale by becoming involved in the political aspect of policy revision. States such as Arizona, Vermont, and Montana are currently using an electronic database that stores their residents’ living wills, making the document accessible to any of the patient’s health care providers. Lawmakers in several other states have proposed similar bills regarding the institution of a centralized database to store advance directives and living wills. Nurses should be encouraged to write to the Congressperson and senators in their district to voice support of these bills.
Living wills are written documents that outline specific instructions for the caregivers and health care providers in the event that an individual is unable to verbalize those decisions. It is important for any individual to have a living will, but even more so for older adults who may be at even greater risk of being hospitalized. Nurses are in an optimal position to initiate this discussion with patients during the admission process, at the bedside, and even at discharge.
Workable and enforceable living wills provide clear directions to families of individuals who are dying, and they should be available to all who need them. A centralized database entails a comprehensive yet cost-effective method in which health care professionals can access the necessary information and documentation and relieves family members of the responsibility of presenting the documents. Health care providers’ having access to the documents online ensures that the precise requests of the patient are more likely to be implemented. Such centralization can also provide a sense of assurance to the patient and family members, who will be confident that their document is available and will be carried out to their specifications. Clearly, policies to support the accessibility of advance directives will encourage their use, and the centralized database option that several states have already legislated is an important consideration for the rest of the country.
- Domrose, C. (2004, September6). A final embrace. NurseWeek. Retrieved July 26, 2007, from http://www.nurseweek.com/news/Features/04-09/EndOfLife.asp
- Hogan, R. (2008, July4). Where there’s a (living) will, there’s a way. The Connecticut Post. Retrieved December 10, 2008, from http://www.connpost.com/health/ci_9756437
- Mitchell, S.L., Teno, J.M., Intrator, O., Feng, Z. & Mor, V. (2007). Decisions to forgo hospitalization in advance dementia: A nationwide study. Journal of the American Geriatrics Society, 55, 432–438. doi:10.1111/j.1532-5415.2007.01086.x [CrossRef]
- Nishimura, A., Mueller, P.S., Evenson, L.K., Downer, L.L., Bowron, C.T. & Thieke, M.P. et al. (2007). Patients who complete advance directives and what they prefer. Mayo Clinic Proceedings, 82, 1480–1486. doi:10.4065/82.12.1480 [CrossRef]
- Ramsaroop, S.D., Reid, M.C. & Adelman, R.D. (2007). Completing an advance directive in the primary care setting: What do we need for success?Journal of the American Geriatrics Society, 55, 277–283. doi:10.1111/j.1532-5415.2007.01065.x [CrossRef]
- Smith, C.B. & O’Neill, L.B. (2008). Do not resuscitate does not mean do not treat: How palliative care and other modalities can help facilitate communication about goals of care in advance illness. Mount Sinai Journal of Medicine, 75, 460–465. doi:10.1002/msj.20076 [CrossRef]