The geriatric population is exploding at a rate never seen before. By the year 2050, its expected that the population of people 65 and over will double to 83.7 million (Ortman, Velcoff, and Hogan, 2014). There is a responsibility for elderly clients to make decisions about care like advanced directives, in order to remove the burden of making difficult decisions by family members or caretakers. When decisions concerning care are decided upon by the client themselves, there is piece of mind. Through a living will, durable power of attorney, or do not resuscitate, the client can decide what type of care they want to receive or refuse.
Advanced directives allow the client to make care decisions even when they are no longer able to speak for themselves. The United States enacted the Patient Self-Determination Act in order for the patient to recognize that they are responsible for their own health care choices. The most common advance directives are: do not resuscitate, the living will, and durable power of attorney. A living will disclose, the client’s directions to the doctor when they can no longer speak on their behave. DNR means to withhold cardiopulmonary resuscitation or advanced cardiac life support when the heart stops beating or they stop breathing, and the durable power of attorney means that the client will appoint someone who will be responsible for making care choices if the client is unable to do so (Touhy & Jett, 2014, pp. 415-416). At any time, these wishes may be rescinded.
Although a lot of individuals have interest in AD, not many people have it. In a study by Morhaim and Pollack (2013), one third of people aged 18 years or older have completed AD. Many of the people who do not have one are not even aware that there is such a thing. Another common fear is that it costs money while it is actually free. Many of the younger individuals think that they are too young and healthy to complete one. Younger people feel like they are immortal at times, but many find their way into predicaments because of their risk taking behavior. The elderly population does have the greatest need for AD as they are closer to the end of life.
The subject of advance directives should be had with everyone, no matter the age. According to Thompson (2015), AD are not only for the elderly or the gravely ill, every adult should have one. Changes in one’s health can happen at any moment, leaving you at the mercy of other people’s decisions. Talking to family and friends about AD is one way of starting the conversation.
Decision making for those who have no voice has become a sensitive subject in recent years. In the publics opinion, many of the decisions made are considered unethical, especially when nutrition and hydration is withheld. One case in particular, gained notoriety for this type of action. The case I’m referring to is Terri Schiavo.
Terri Schiavo suffered a brain injury affecting the ability to care for herself. Her husband, Michael Schiavo, who was considered her guardian, and decided to remove the life prolonging tube feeding even though her parents said they would care for her. Upon removal of the feeding tube, the 13-day process of starvation/dehydration leading to her death began. This was all made possible because her husband and had the durable power of attorney (Schindler, 2015). Michael Schiavi decided that this was in her best interest since she really wasn’t “living” anyway. There probably was no way she would have recovered, but was this an appropriate coarse of action? She could have possibly lived many more years in her vegetative state, but would that be ethical to her, and what would the cost be?
Current literature is predominately in favor of AD. Those who are in favor, cite being given a choice in the care they’ll receive, and reducing the burden on family members to make difficult decisions. Another reason for subscribing to the idea of AD, is the awareness that it will save money in the long run, as prolonging life with intense treatment would be reduced. That money could, instead, go to preventing illness.
ADs remove the burden for surrogate decision makers when someone is incapable of speaking for themselves. The stress of having to make health care decisions is debilitating at times and can have long lasting affects like depression. Without ADs, “SDMs are faced with complex healthcare decisions with little or no preparation to make decisions aligned with the patient’s wishes.’ (Hickman & Pinto, 2014, p.757). There must be a fear associated with putting a loved one in harms way. Tough decisions must be made concerning “diagnostic and surgical procedures, life-sustaining interventions (i.e. artificial nutrition, mechanical ventilation and hemodialysis) and end-of-life care.” (Hickman & Pinto, 2014, p.757).
Of the many arguments for AD, one of the strongest ones is medical care cost containment. It is estimated that nearly a quarter of all lifetime medical expenses encountered through a lifetime are done so in the last year of life (Morhaim & Pollack, 2013). With cuts to healthcare spending, changes in end of life care must take place as this is the most expensive time. Technological advances allow us to prolong life even when the body cannot maintain its own functions. Sometimes a natural death would be a better option, especially when there will be no quality of life.
Before a client creates an AD, they must be assessed to see if they are competent. Testing competence is usually done with a Mini-Cog test. In order be considered capable of making sound decisions, the client must be able “to understand the information provided about medical treatment and to comprehend the consequences. Capacity also includes the ability to evaluate the information, comparing benefits of the proposed treatment and alternatives against their risks, using problematic thinking.” (Limehouse, Feeser, Bookman, & Derse, (2012). The inability to prove that one has capacity will leave family members to make decisions for the client. Allowing a patient to make decisions on their own even they are deemed incompetent is unethical.
In recent years, there has been a big push to get people to complete advance directives. Surprisingly enough, April 16th is National Healthcare Decisions Day which was created to “inspire, educate and empower the public and providers about the importance of advance care planning.” (NHDD). As mentioned previously, many people are not even aware of AD. There are also many misconceptions. Some people believe it costs money but its free. If healthcare workers brought up the subject matter with clients, many more people would be informed of their options and there would be a higher enrollment rate.
Congress has now joined in the fight to enroll people in AD. There is currently a bill in congress called the S. 2297 Medicare Choices Empowerment and Protection Act that will pay people a one-time fee of $50-$75 for their enrollment in the program (Medicare Choices Empowerment and Protection Act). Although this sum seems small, to some people it will be enough to get them to register. A mass media campaign would be an effective way of getting the word out. This investment can save the government enormous amounts of money as peoples wishes not to receive unnecessary care can be withdrawn, saving money in the long run.
Medicare and Medicaid are the largest insurer in the United States and may be asked to help their members acquire ADs. There are proposals to now have Medicare recipients mandatorily fill out ADs to help lessen the financial strain of end of life care. The actions by Medicare and Medicaid will hopefully be adopted by the private insurance companies too. All documentation will be stored in a secure national repository (Eltoral & Besdine, 2014). Many people feel the government intervention only complicates the problem, but this would be an excellent way to increase registrations.
A search of AD reveals multiple websites that promise to simplify the process of registering. One site is called the U.S Living Will Registry which offers a lifetime membership and stores your information online for easy access. Other popular websites are mydirectives.com and agingwithdignity.com which offers the Five Wishes brochure for online registration to easily fill out your AD. Most of these companies charge a fee for their services. Registering with one of the aforementioned websites creates easy access for medical personnel if paperwork is misplaced.
The role of providing information on ADs should be shared by those who are in touch with clients like physicians, nurses, and social workers. According to Morhaim and Pollack, these providers should receive compensation for discussing EOLC. They also state that completing ADs should be seen as a sign of quality care and should be part of regular screenings. Marhaim and Pollack (2013) also feel that medical personnel should be taught the importance of AD in school. They feel that this is becoming a public health agenda and that the dissemination of information regarding AD should be spread in the workplace and even places of worship.
The topic of ADs must be brought to the attention of clients in the outpatient setting. The use of EMR can help increase the number of people who have completed their Ad. In a study by Hayek, Nieva, Corrigan, Zhou, Mudaliar, Mays, and Ilksoy, (2014) “By adding AD to the patient’s active problem list, its importance is emphasized and placed at par with the patient’s medical problems, thus encouraging physicians to address it.” The interconnectedness of EMR will ensure that doctors have access to these records in times of need, especially emergency situations.
Bring up the topic of ADs is not easy and it creates a barrier to completion. For physicians, they may feel uneasiness about the subject, feel there’s not enough time, lack of compensation, and they may wait for the client to initiate the conversation. Some barriers the client has include: lack of interest, waiting for the doctor to start the discussion, low health literacy, and spiritual, cultural, and racial traditions (Spoelhof & Elliot, 2012, p.463). There must be dialogue about the subject because people being scared to initiative the conversation is not a good enough reason to avoid the issue. Ways of improving AD completion include involving the the client’s family, group-based interactive interviews that encourage discussion, bring up the topic routinely at checkups, and adding a values history (Spoelhof & Elliot, 2012, p.464).
There are large disparities in ADs when comparing people of varying races and level of education. According to Rao and associates, “Advance directives were more frequent among women, whites, and respondents who had a college degree or post-graduate training, were married, and had a chronic disease and regular source of care.” We must create strategies to better communicate with people of varying education levels. Also, having access to regular care gives the opportunity for medical personnel to have conversations about end of life care. Many minorities do not trust the healthcare system and feel that having “ADs may lead to withdrawing or withholding care.” (Pecanac, Repenshek, Tennenbaum, & Hammes, 2014). Twice as many white people compared to African Americans have ADs. These numbers can be attributable to “cultural differences in family-centered decision-making, distrust of the healthcare system, or poor communication between professionals and patients (Morhaim & Polack, 2012)
Other issues with completing ADs are complex forms and language barriers. According to Maller (2013), the language in the ADs is filled with medical and legal terminology. The material is also written at an 11th grade level which is much higher than the 8th grade national average. This would make it much harder for people to understand, so simplifying the forms is important. One main concern for Latino clients is the language barrier. There must be a more concerted effort to make these forms easier to understand and have it translated into more languages.
The role of nurse allows me to communicate with clients and offer them information relating to their health. As mentioned previously, contact with the client during routine checkups allows me to bring up the issue of ADs (Spoelhof & Elliot, 2012, p.463). During these visits, the client can make necessary changes to their AD as needed. The conversation of end of life care can also be brought into the community setting where individuals can start the conversation and have their questions answered (Marhaim and Pollack, 2013). Culture competence can also help explain the idea of AD to people from various countries and who speak multiple languages. There is also a need to simplify the language used in AD as it is written at a higher reading level than what the national average is (Maller, 2013).
It is clear that the overall consensus is that ADs need to be completed at a higher rate then they currently are. For those who are receiving Medicare and Medicaid, they should be mandated to fill out an AD. This is the largest insurer in the country and possible savings on stopping unnecessary procedures can save the healthcare system which is struggling mightily (Eltoral & Besdine, 2014). During routine screenings, the EMR should prompt you to make an AD for the client. This would signify that its as important as any medical problem the client is having (Hayek, Nieva, Corrigan, Zhou, Mudaliar, Mays, & Ilksoy, (2014). This also entails every medical facility be equipped with with electronic health records. Congress is also trying to pass a law that would pay people money to register in a national database with would be accessible in times of need. This would also prevent the misplacement of documents and they will follow you wherever you go (Medicare Choices Empowerment and Protection Act).
In conclusion, the process of getting the majority of residents to complete an AD will be a long and tedious task. Through community initiates and government involvement, this may become possible. Those who are in contact with clients regularly need to bring up the topic and start the conversation. AD can guide the care a client would like to receive if they are unable to voice their own thoughts. Voicing your feelings about EOLC to friends and family will ensure that they know your wishes, if they have to answer for you. Life is a long journey but we must prepare for the eventual end.
Eltorai, A. E., & Besdine, R. W. (2013, November 29). Mandating advance directives. Aging-Clinical and Experimental Researc, 26(3). doi:DOI 10.1007/s40520-013-0167-x
Hayek, S., Nieva, R., Corrigan, F., Zhou, A., Mudaliar, U., Mays, D., & Ilksoy, N. (2014). End-of-life care planning: improving documentation of advance directives in the outpatient clinic using electronic medical records. Journal of Palliative Medicine, 17(12), 1348-1352. doi:10.1089/jpm.2013.0684
Hickman, R. L., & Pinto, M. D. (2014). Advance directives lessen the decisional burden of surrogate decision-making for the chronically critically ill. Journal of Clinical Nursing, 23(5/6), 756-765. doi:10.1111/jocn.12427
Limehouse, W. E., Feeser, V. R., Bookman, K. J., & Derse, A. (2012). A model for emergency department end-of-life communications after acute devastating events–part I: decision-making capacity, surrogates, and advance directives. Academic Emergency Medicine: Official Journal Of The Society for Academic Emergency Medicine, 19(9), E1068-E1072. doi:10.1111/j.1553-2712.2012.01426.x
Maller, A. (2013, October 23). Why aren’t patients using advance directives? Retrieved August 7, 2016.
Morhaim, D., & Pollack, K. (2013). End-of-life issues: A personal, economic, public policy, and public health crisis. American Journal of Public Health, 103(6), E8-e10
National Healthcare Decisions Day (n.d.). Retrieved August 7, 2016, from http://www.nhdd.org/#welcome
Ortman, J. M., Velkoff, V. A., & Hogan, H. (2014, May). An aging nation: The older population in the United States. Retrieved August 7, 2016.
Pecanac, K. E., Repenshek, M. F., Tennenbaum, D., & Hammes, B. J. (2014). Respecting Choices® and advance directives in a diverse community. Journal of Palliative Medicine, 17(3), 282-287. doi:10.1089/jpm.2013.0047
Schindler, B. (2015, May 30). I will never forget the look of horror on my sister Terri Schiavo’s face the day she died. Retrieved August 7, 2016.
Spoelhof, G. D., & Elliott, B. (2012). Implementing advance directives in office practice. American Family Physician, 85(5), 461-466.
S.2297-Medicare Choices Empowerment and Protection Act. (2015, November 18). Retrieved August 8, 2016.
Thompson, A. E. (2015). JAMA patient page. Advance directives. Jama, 313(8), 868. doi:10.1001/jama.2015.133
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