Learning to Choose – Who Decides and How to Decide about Advance Directives
While 70% of Americans would rather die at home (Cloud, 2000), only 25% of Americans actually do (Centers for Disease Control, 2008). Although Advanced Directives (ADs) allow people to make decisions about the end-of-life care (EOLC) they desire before they become incapacitated or unable to voice their own requests, only 20-30% of Americans report having an AD (Sedensky, 2010). Those who have advanced directives are increasingly utilizing hospice care rather than aggressive treatments in the hospital. ADs enable individuals to 1) create a living will that describes the forms of treatment they do or do not desire in emergency situations, such as ventilators, feeding tubes, cardiopulmonary resuscitation (CPR), antibiotics, and pain medication; and, 2) use a durable power of attorney to appoint a representative who can make decisions for situations that were not specified in the living will. The ADs are important because without them, the physician and family members must decide on the care of the patient when he or she becomes incapacitated. Often in these circumstances, what the patient would have wanted and what others want are entirely different. More of the general population needs to be educated about advance directives and the interventions they involve in order for more people to have a say in the treatments they wish for at the end of their lives. Numerous factors must be considered when making choices about EOLC, such as personal opinions about the quality versus the quantity of life. To make a truly educated decision, patients need to not only educate themselves about EOLC options but also to search within themselves to make these decisions. The person making decisions about EOLC, whether patient, physician, or family member should use his or her knowledge and beliefs to consider:
1) Is someone who requires or uses interventions for essential functions such as eating and breathing truly living? and, 2) Do the potential advantages and disadvantages align with the Vu 4 goals of care? Because people are living longer and the population of Americans who are 65 and older is growing, there is also a projected increase in the incidence of dementia, specifically Alzheimer’s disease. While the use of feeding tubes, ventilators, antibiotics, and pain medication have their own benefits and detriments, the conditions of people diagnosed with dementia can make the use of these interventions increasingly complicated.
II. Who Decides?
a. The Physician
The physician is typically trusted as the medical expert who determines what is best for his or her patients. In the best case scenario, the patient, a family member, and the physician would discuss the duration, invasiveness, chance of success, overall diagnosis, and quality of life as it pertains to each possible treatment option. Commonly, however, such discussions either do not happen or happen between just the physician and family members when the patient becomes incapacitated (Kass-Bartelmes & Hughes, 2003).
In order to facilitate making sometimes difficult decisions, medical ethics courses are an essential part of the medical school curriculum, especially in helping physicians act during times of medical emergency or need for intensive treatment. One of the guiding principles in these situations is “primum non nocere” or “first, do no harm,” which says that if the patient has medical conditions to consider, it might be better to not take action than to cause the patient more harm than help. However, in a study done at hospitals that wanted to improve the use of life-sustaining treatments, 38% of attending medical physicians admitted, “I have acted against my conscience in providing care to the terminally ill” (Solomon, et al., 1993). Furthermore, 58% of attending physicians in this study felt that “the treatments [they] offered [their] patients are overly burdensome,” while only 15% of these physicians felt that they “[gave] up on patients too soon” (Solomon, et al., 1993). This suggests that doctors tend to perform as many actions as possible to avoid feeling as though they are giving up on their patients. According to what is taught in medical school, if a patient is assessed and predicted to have very little time left to live, treatments and interventions such as surgery and antibiotics might be considered medically futile for the patient’s overall condition. Physicians might wrestle with knowing that medically futile interventions can cause more harm than good, but feel the urge to do anything in their power to keep their patients alive. The ethical dilemma is acting on either of two justified choices while knowing that making the “right” choice under a certain set of reasons would be “wrong” under the other set. Although trained in treating patients, physicians may make controversial decisions because they must take into account what they are taught ethically in medical school and their own beliefs, in addition to the desires of a patient.
b. The Family Member
A family member or loved one who is entrusted to make decisions for someone who cannot speak for him- or herself is usually assumed to know the individual’s best interests. The Gerontological Society of America published a study that looked at whether family members could accurately predict the treatment their loved one would desire. The study set up five hypothetical vignettes and recorded answers from ambulatory patients and the family member that the physician would select as their proxy. It was found that a significant amount of patient-proxy pairs gave opposite answers regarding the use of ventilators (33%), the use of CPR (44%), and for the use of feeding tubes (24%) (Zweibel & Cassel, 1989). Surprisingly, although these discrepancies existed, over 90% of the proxies reported that they would want their family member to be treated the same way they would want to be treated in most of the scenarios. Also, over 80% of both patients and proxies reported having made at least one decision in the past similar to those described in the vignettes. Although one would think that experience with similar situations and sympathy for loved ones would help enable proxies to make the same decision the patient would want, patient-proxy pairs largely did not share the same decision for any situation. These results are consistent with conclusions from a prior study also done by Cassel and Zweibel which found that “only 10% of older outpatients reported having given family members specific instructions about future medical care and only 37% reported having discussed their views on life-sustaining treatment more generally” (Cassell & Zweibel, 1987). It is possible that with a lot at stake for the proxy who needs to make decisions, there can be varying degrees of emotional denial or acceptance of his or her loved one’s state that can overshadow the consideration for their loved one’s probable desires. Obvious when said, but people who want their desires to come to fruition must voice them—we can give loved ones what they wish by changing the attitude about discussing the taboo topics of EOLC and death. The conflicted emotional state of the family member and the family member’s knowledge and experience with making EOLC decisions make it even more crucial for patients to complete their advanced directives.
c. The Patient
For someone to begin thinking about each type of intervention that can be found in a living will, he or she needs to first think about his or her own perspectives on life and religion. For example, the medical definition of brain death is described as a cessation of all vital bodily functions such as breathing and heartbeat as well as brain functioning. On the other hand, a patient in a persistent vegetative state (PVS) is unconscious and unaware for a long period of time (classified usually after four weeks or longer). Individuals might use these conditions to consider if someone is still alive because to them, an individual who is unconscious for a long time might or might not still be living when he or she is not cognizant or responding. It is an ethical question that is complicated by emotions such as sadness, hope, and denial. Moreover, people may feel the need to refer to their religion to make decisions about EOLC. Though one would hope that turning to a religious doctrine would help make advance care planning less complicated, there might still be teachings and statements open for interpretation. For example, according to the Catholic Health Association Affirmation of Life’s religious advance directive, Catholics should “request that no ethically extraordinary treatment be used to prolong [his/her] life,” but also, “No treatment should be used with the intention of shortening [his/her] life” (Grodin, 1993). Although this directive tries to clarify that treatment without reasonable benefits should not be given, one person’s interpretation of “reasonable” can differ from another’s. Therefore, using religion as a reference might not make EOLC decisions any easier.
Another important aspect an individual needs to consider when making decisions about EOLC is the amount of comfort one would want when receiving different forms of medical interventions. The use of medications and interventions can affect an individual’s comfort both mentally and physically. Moreover, one’s mental comfort might involve having one’s family feel as much at ease as possible with the inevitable death and what is desired at the end of life. At the final period of life, the patient would not want to feel like a burden. For example, an individual might focus his or her ADs on pain medication and forego aggressive life-saving devices such as ventilators and feeding tubes because this person does not want his or her family members to see them connected to such devices. However, the desire of physical comfort can involve the individual weighing the health effects or goals of the medical interventions against the physical comfort resulting from its use, such as with persistent confusion or delusional states that are a result of heavy medication. An individual might favor more aggressive life-sustaining treatments to try and afford more time with his or her family and friends. Emotions, opinions, comfort, and religion share roles in making the ultimate choices made in a living will.
III. How Does One Decide?—Shortcomings and Benefits of Medical Interventions
a. Feeding Tubes
Once people come to terms about their own opinions and beliefs about the end of life, there should be discussions and understanding about the benefits and shortcomings of interventions such as feeding tubes. As mentioned earlier, the US is experiencing an increase in the number of people diagnosed with dementia—over 5 million people projected for 2012 (Alzheimer’s Association, 2012). In the final stages of the disease, people affected by it typically are unable to feed themselves due to difficulty with swallowing. Swallowing problems can also be caused by other problems such as cancer, stroke, etc., but the main risk is old age. Feeding tubes are considered because there is a desire to keep this person from aspiration and from becoming malnourished or dehydrated. Aspiration, which occurs when food or liquid enters the airway instead of the esophagus, may cause problems with choking or pneumonia. Though the intentions for the use of feeding tubes are good, there needs to be a discussion about the possible side-effects.
The use of feeding tubes is meant to alleviate problems of malnourishment and aspiration, but they may cause more detriments than benefits. For instance, the use of feeding tubes may cause problems because of tube clogging, diarrhea, the possibility that dementia patients unaware of them will pull them out, and the likelihood that nutritional status may not improve overall (Gillick, 2000). Also, in a study of 99 advanced dementia patients who were admitted to a hospital, “tube feeding was not associated with survival” and patient mortality was actually higher due to infections as a result of feeding tube use (Meier, et al., 2001). While some people believe that nutrients should not be withheld from patients, others, including some physicians, believe that keeping patients hydrated can actually prolong the process of dying and cause discomfort through the production of urine and mucus (Hodges & Tolle, 1994). Feeding tubes are a prime example of treatment that can be considered medically futile. A prior ethical case includes that of Paul E. Brophy, Sr., who had his feeding tube removed via the decision of his wife, the medical proxy, so that his life would not be prolonged in a persistent vegetative state and would “allow the underlying disease to take its natural course” (Steinbrook & Lo, 1988). Brophy died in what could be seen as a peaceful death eight days after the use of the feeding tube ceased. Even though feeding tubes enable patients to continue receiving nutrition while they are unable to eat or swallow adequately, this medical intervention may or may not actually increase quality or duration of life for the patient.
Ventilators are another form of EOLC with their own benefits and detriments, and they help patients who cannot breathe on their own or who are breathing insufficiently by moving air into and out of the lungs. The ventilator is a machine which administers controlled amounts of air while the patient is connected with a mask, mouthpiece, or an endotracheal tube put into the mouth and down the trachea. While ventilators help provide a necessary function for life, there are many misconceptions about the device. These fallacies include the beliefs that patients can talk while on a ventilator, that ventilators are oxygen tanks, and that people who are on a ventilator are comatose (Fischer, et al., 1998). A common trend when using different forms of interventions such as ventilators is that older people tend to have multiple problems and that one problem tends to lead to the development of others. For instance, a major concern for the use of ventilators is the development of ventilator-associated pneumonia (VAP). Patients put on ventilators may have their health problems exacerbated if they must now also combat an infection requiring the use of special antibiotics because of bacterial resistance. Other problems associated with the use of ventilators include possible lung damage by air pushed into the lungs with too much pressure and difficulty in coughing, which inhibits clearing of the airways from lung irritants (National Heart Lung and Blood Institute). Hence, although ventilators are a life-sustaining device, they can cause problems such as infections and lung damage, which must be considered when making decisions for a living will.
c. Cardiopulmonary Resuscitation
While CPR is one of the more commonly known life-saving procedures, individuals need to be more cognizant of its misconceptions and important effects before considering its implementation in their advance directives. CPR involves the use of chest compressions and rescue breathing to restore cardiovascular and respiratory function for someone who has gone under cardiac arrest. In an optimal situation, the use of CPR would preserve brain function and restore blood circulation as well as breathing in order to prevent death. However, 66% of patients in a study of 56 outpatients between the ages of 55-88 either did not know or were unaware that a breathing machine is essential following CPR (Fischer, et al., 1998). Furthermore, while physicians stated a typical 20% survival rate for CPR, on average, patients predicted a 70% survival rate (Fischer, et al., 1998). Although the average age of the participants was 72 years, participant knowledge about an important life-saving procedure such as CPR was poor.
Often, CPR is the first step in the escalation of medical intervention use as well as other health problems and not the last. Some of the effects of CPR include broken ribs, brain damage, abdominal distention, and aspiration pneumonia. Rib fractures can then cause lung punctures, necessitating external air supply with a ventilator or inflation of the lungs with a chest tube (Robin, 2011). There are obviously many consequences to consider with the use of CPR, and one must weigh the chances of recovery and survival against the risks of organ damage.
The decision to forego CPR can lead to a formal “do not resuscitate (DNR)” order, but often patients and family members believe that DNR orders allow health care professionals to “abandon care and stop all treatment” (Hospice Patients Alliance). Bad outcomes from CPR can be worse for older people who have multiple health conditions and are more physically fragile. For example, patients with advanced dementia or metastatic cancer will often suffer from “severe neurological damage or [die] in intensive care units” as a result of CPR (Lerner, 2012). DNR orders are written for CPR because of situations in which physicians know that their patients will not benefit from it and consider CPR medically futile. Information about interventions including CPR must be made readily available and explained so that people can make knowledgeable decisions about CPR implementation in ADs.
While antimicrobials such as antibiotics are used throughout one’s lifetime to fight infections, the situation is different at the terminal stages of illness or the end period of life when infections greatly increase mortality. Healthcare providers sometimes must consider the possible futility of interventions such as antibiotics for terminally ill patients because, in this instance, the use of antibiotics might increase the risk of multi-resistant bacteria that can harm other patients. The subject of medical futility raises the ethics of interventions such as antibiotics and its effects on the population, whether it is the effects on other patients or on government spending for medical care. Approximately 32% of total Medicare spending is used in the last two years of life, and it is mainly due to hospital fees, including the use of antibiotics and other medical interventions (Wennberg, et al., 2008). AD decisions take into account the individuals’ preferences for comfort and his or her opinions, but sometimes, one can consider the impact that making a decision can have on others.
In the case of antibiotics, the quality of life and longevity may have correlations with the aggressiveness of treatment. In a study of patients with advanced dementia and suspected pneumonia episodes, there was no significance between the use of different antimicrobial treatment routes (oral, intramuscular, intravenous), but there were significant differences in survival rates compared to those who did not receive treatment. The adjusted increase in survival for those receiving some form of antimicrobial treatment was 273 days (Givens, et al., 2010). A scale was used to measure the comfort level of the patients who received and did not receive treatment for pneumonia, and those who received no treatment but survived reported greater levels of comfort. Lower levels of comfort and greater functional impairment were associated with the aggressiveness of the treatment routes. Therefore, one can choose a less aggressive form of antimicrobial treatment to keep a greater level of comfort, or choose to forgo the use of antimicrobials, including antibiotics, for optimal comfort and possibly a natural route to the end of life. There is also the broader ethical dilemma of deciding between longevity and comfort with functional capacity when choosing or declining treatment. Although considered an “easy fix” compared to other medical interventions, the use of antibiotics can also result in difficulties such as liver damage and adverse drug reactions. In making a decision regarding antibiotics and the other aggressive forms of EOLC, one must consider whether the chances for prolonging life are worth the possibility of not enhancing one’s quality of life.
e. Pain Management
While everyone’s tolerance and opinion about pain are different, it is an important motivator in making end-of-life decisions, and pain management can help control an individual’s level of comfort. However, pain management plans can vary from making the pain just bearable to making a patient feel comfortable but less alert. Preparing a thorough AD using knowledge about pain medication can lead to comfortable EOLC plans. The treatment and decisions made about pain are especially important because pain affects an individual’s mood and ability to make the most of their time left with loved ones. Some of the fear in using pain medication concerns the use of opioids because of misconceptions that people can easily become addicted or overdose. Increasing opioid administration is common, though, because of the progression or terminal state of the patient. A rotation of different opioid administration methods or changing the types of medication can help from addiction and overdose (Miller, et al., 2001). In some instances, when pain seems to be uncontrollable, epidural catheters, which inject drugs to block nerve pain signals near the spinal cord, or local anesthesia, can be used. The development of pain medication has seen great improvements and innovations, and it is therefore important to keep pre-conceived notions about pain medication from the facts and desires for comfort when making decisions about EOLC in terms of pain.
Hospices focus on utilizing palliative care with pain management in addition to the observation of patients’ emotional needs. Instead of attempting curative effects and prolonging life, palliative care involves treating symptoms to alleviate pain and complications that are a result of diseases and medical conditions. Unlike the aggressive medical interventions mentioned above, pain management seen in hospice settings concentrate on quality of life rather than longevity. Furthermore, a study showed that individuals who had advance directives were more likely to pass away at home with hospice care or in a nursing home than pass away in a hospital, utilize a respirator, or have a feeding tube (Teno, et al., 2007). This shows the possibility that people who do know about and complete ADs are more likely to choose non-aggressive measures at the end of life outside of a hospital, such as with pain management and hospice care. AD decisions about pain management can help to keep the quality of life and dignity of individuals, especially in hospice care settings.
However useful and important it is to discuss and learn about advance directives and the various forms of end-of-life care, the decisions that need to be made about the terminal period of life can still prove to be difficult. It is ultimately the individual or patient who needs to make the decisions, but the discussions can be moderated by both the physician and family member(s). Older people, who already have multiple health conditions and illness, are likely to be ready to discuss their medical status, its trajectory, and the medical interventions that might be needed. Therefore, physicians should take an initiative in sharing their knowledge with their patients while promoting their patient’s values. In addition, family members aware of the conditions of their loved ones should be open to discussions about EOLC because they might be involved as a proxy if the individual becomes incapacitated. Conversing with family is also important because the patient will want to make decisions that would be the least burdensome for their surviving loved ones. While the different medical interventions each have their own benefits and shortcomings, these facts must come under the scrutiny of the individual’s preference for quality of life or longevity in different situations. With the variety of medical interventions, it is important for the growing older population to have end-of-life conversations and learn what they want for themselves in order to prepare advance directives that can help fulfill their last wishes.
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