by Cindy Longanacre, RN, CHPN, Hospice of Chickasha
Autonomy (self-determination) is generally considered to be the highest ethical principle in our healthcare system today. A patient’s right to make their own decisions regarding their care is the basis for all decision-making. As long as we have decision-making capacity, our decisions should be honored and respected.
However, just because a person has capacity does not mean that decisions were made entirely autonomously. Many factors can influence a person’s decision, including family or societal cultures. For instance, some cultures dictate that only the patriarch (male head of the family) makes decisions regarding a person’s health care. In fact, only the patriarch is told the patient’s diagnosis or prognosis. In other cases, a person’s religion may preclude the use of certain treatments, as in blood transfusions for Jehovah’s Witnesses.
Sometimes it is the opinions of others that may sway a person’s decision. Family members will often influence a person’s choice. For example, the patient may decide to continue aggressive treatment of their disease because family members have made statements such as, "I’d feel better if I knew we had done everything possible." Healthcare professionals may also influence a patient’s decision, often without realizing it. The very manner in which information is presented may affect the decision-making process. If a healthcare professional implies, by word or manner, that they have a strong preference for one option over another, this can have a powerful influence. Patient's may fear abandonment if they "don’t do what the doctor tells me." Other factors, such as fear, uncontrolled symptoms, medications, etc. may also play a part in a patient’s decisions.
Because of the potential for influence of a patient’s choices, the ethical principle of veracity, or truth-telling, is of highest importance in obtaining informed consent for treatment. Patients want to be told the truth. One study showed that 93% of people with cancer would want to know their prognosis. The most compelling reason healthcare workers withhold full information, particularly regarding a poor prognosis, is to avoid "taking away hope."
Maintaining a patient's hope in the face of serious or terminal illness may seem impossible. This is the most frequently cited reason for not telling the patient the truth regarding their health condition.
Hope is a feeling that assists in supporting the patient's sense of wholeness and well-being. Healing is fostered by the patient's ability to maintain hope. Healing may not be physical but may instead refer to the patient's ability to accept their current circumstance and continue to live and grow in spite of it. In other words, healing affirms the patient's humanity. Hope evolves over time as the patient's disease progresses and goals change. Even when there is no hope for cure of the disease, there are still valid things to hope for; a peaceful, pain free death, making provisions for family members, enjoying the time remaining. Maintaining hope is an important component to spiritual care of the patient. To do less would be to not treat the whole person.
False hope, on the other hand, can be very detrimental. It prevents the patient from exercising their right to autonomy, because vital information is withheld. This also prevents fully or substantially informed consent. Focusing only on false hope may leave patients unaware of their limited prognosis. Patients cannot be expected to make the correct decision for themselves if they do not have adequate information.
False hope also jeopardizes the patient/professional relationship. Put bluntly, treatment based on the offering of false hope is treatment based on a lie. In the case of a patient who is terminally ill, to not affirm the patient’s own perception of failing health and progressing disease is to cause, at the very least, confusion. As the patient continues to decline despite assurances that "everything is fine", the patient may feel betrayed and angry.
It would seem that nearly all people overestimate the success rate of cardiopulmonary resuscitation (CPR). This would seem to include healthcare professionals. Those using medical training to learn about CPR were more likely to overestimate its effectiveness. So were those who learned about CPR from public programs. The elderly were certainly no exception, as 41% stated that they would undergo CPR if suffering from cardiopulmonary arrest. Because patients often overestimate the chances for survival and recovery following CPR, they may opt to receive resuscitation in situations where survival is unlikely.
It is also difficult for people to fully imagine what a prospective health state might be like. Once they experience that health state, they may find it more or less tolerable than they imagined. Increased depression was associated with patients’ changing their initial preference for CPR to refusal of CPR, while less depression was associated with patients' changing their preference from refusal of CPR to acceptance of CPR.
The very act of completing an advance directive seems to help patients do a better of job of predicting what their preferences would be. Patients who had an advance directive maintained stable treatment preferences 86% of the time over a 2 year period, while patients who did not have an advance directive changed their preferences 59% of the time.
CPR was never intended for use in the terminally ill. It was designed for those who are undergoing a medical crisis from which they have a good chance of meaningful recovery. This would include trauma patients, near drowning victims, or a 40 year old man having a heart attack who is otherwise essentially healthy. Cardiopulmonary resuscitation is a painful experience for the patient but worthwhile if the objective of complete recovery can be realistically anticipated.
The influence of popular television shows is evident in the results of a study that revealed only 4% of respondents gave an accurate survival rate of less than 20%. The mean expected survival rate reported by these respondents was 65%. Perhaps more concerning is that of the people giving a 74% survival rate cited personal medical training as their primary source of information. The actual survival rate is 1-18% as documented in the medical literature.
It is often helpful during a conversation regarding treatment choices to redirect the perspective to what the patient would want. AHRQ studies have shown that patients’ treatment was generally consistent with patient preferences if those preferences were clearly stated in an advance directive and the physician was aware of the presence of an advance directive.
This relieves the decision makers of the burden of responsibility for determining what is BEST for the patient. By following the patient’s wishes, as well as can be determined, the patient's right of autonomy is upheld and surrogate decision-makers struggle less with the outcomes of treatment.