Wheel of Fortune: Don't Count on Controlling Everything
Another popular TV game show is Wheel of Fortune. This show requires both luck and skill. To win, contestants must solve a word puzzle. The puzzle is revealed letter by letter. To earn a chance to guess a letter, the contestant must first spin a giant wheel. The wheel is separated into wedges, each wedge representing a different outcome. For example, one wedge may say “lose a turn” while another wedge may say “win a trip
to Paris,” and another lists a cash prize. When the contestants get enough money, they can buy a vowel to help solve the word puzzle. Luck enters the game when the contestant spins the giant wheel; luck affects where the wheel lands and, therefore, whether the contestant will get the chance to “buy a vowel” or attempt to solve the word puzzle and win the game. Contestants know what they would like to land on; they have their preferences, but cannot count on landing on a certain wedge. Contestants cannot advance unless they happen to land on a wedge that allows them to continue. Luck affects the amount of playing time and the chances of winning.
Selecting the letters to play (one consonant or vowel at a time) is part luck and part skill. Contestants know that in the English language certain letters are more common than other letters. Furthermore, the word puzzle also involves familiarity with American culture as well as skill in guessing answers based on incomplete information. Furthermore, the person who correctly solves the word puzzle and wins the round may not be the person who correctly guessed most of the letters. Each contestant is constrained by the luck and skill of the other players.
Lessons from Wheel of Fortune can apply to ACP. Residents may communicate what sort of an EOL experience they prefer, which interventions they are willing to endure, and which they wish to avoid. Yet, residents don't control on which wedge the wheel will stop. We can take this one step further by saying that the wheel residents face will have different wedge options, depending on the dominant health condition the resident faces. Lunney, Lynn, and Hogan (2002) categorize EOL trajectories among older adults into three groups: organ failure, cancer, and neurologic conditions including frailty. Nursing home residents whose overall health status is dominated by organ failure face different wedges than residents whose overall health is primarily affected by advanced cancer. Every time the wheel spins, the only certainty is that it will eventually stop. Despite the preferences of the player, the circumstances surrounding where the wheel stops are uncertain. In the medical decision-making context, uncertainty is rarely explicitly discussed, which can lead residents and their health care agents to believe they have more control than they do.
In many cases, having the discussions and completing the paperwork does contribute to the delivery of the type of care desired. In other cases, however, despite the best efforts of the residents and health care agents, the EOL care delivered is inconsistent with the preferences communicated. How can that be? There are many reasons that even if residents express their wishes, residents do not receive the care desired. Three reasons will be discussed in this chapter: (a) the complex medical characteristics of nursing home residents; (b) the communication challenges posed by the nursing home setting; and (c) the lack of a seamless health care system.
Complex Medical Characteristics of Nursing Home Residents
Most nursing home residents suffer multiple chronic conditions. The sheer number of conditions complicates prognoses and can increase care needs. Furthermore, not only do most nursing home residents suffer multiple chronic conditions, these conditions are frequently quite advanced. The combination and severity of conditions complicates residents' health status, prognoses, and decision making. This “ambiguous dying syndrome” (Bern-Klug, 2004) complicates the timing of adjusting goals of care, and makes it difficult to get everyone to agree when a nursing home resident should be considered “dying.” As different people understand medical situations in different ways, even people having what they consider the best interests of the resident at heart develop different ideas about what amount and type of care should be pursued. Confusion occurs, and the interested parties must work hard to make sure everyone is pursuing compatible goals.
Communication Challenges in the Nursing Home Setting
Nursing homes are complex systems. It can be difficult to keep all the interested parties, family members, staff members, physicians, and residents current with respect to residents' health status, prognoses, and care-related preferences, so that everyone can make decisions with roughly the same information, especially when the decision is needed quickly, and even more so when the decision is needed outside the regular business day. The staffing challenges in the nursing home industry make this particularly difficult.
Most nursing homes in the United States are understaffed, both in terms of the number of staff members and their training (National Consumer Voice for Quality Long-Term Care, 2012). The measures nursing homes take to deal with staffing issues have varying implications for residents who are not capable of communicating their wishes. For example, some nursing homes deal with staffing shortages by hiring temporary nurses from an agency. Staff who are not familiar with the nursing home setting in general, and with the culture and protocol of the specific nursing home to which they are assigned, are ill prepared to function effectively as a part of a team. Their lack of institutional memory and knowledge of individual residents and staff not only lessens their individual ability to function effectively in the moment, but can also complicate the jobs of permanent staff.
In addition to not having a sufficient number of well-trained nurses available, most nursing homes do not have a licensed independent provider such as a physician, physician's assistant, or an advance practice nurse present. When serious medical events occur, staff phone a physician, usually the resident's personal physician or the facility's medical director, and relay information about the resident's status. The physician determines the next step. If staff perceive a situation as an emergency, they call 911,
usually for an ambulance and transport to the ER. Although staff may frequently attempt to contact the resident's family, they do not always succeed before a decision is required. Resident preferences communicated through a POLST form can be useful here.
Lack of a Seamless Health Care System
Lack of a seamless health care system complicates continuity of care. If the nursing home resident remains in the nursing home for all care then the resident and the family interact with one system mainly. The moment a resident transfers to the ER or to the hospital, the resident and family must deal with a different system, with different rules, protocols, people, professions, financial charges, reimbursement systems, accommodations, and expectations. In a word—different cultures. It is not uncommon for a 911 call to undermine carefully made plans, especially as the resident approaches the EOL. Health care agents face circumstances they attempted to prevent, in a setting, for example an ER, they attempted to avoid. They realize that the situation does not correspond with the resident's wishes. What can be perceived as “bad luck,” or lack of skill on their part, is actually the result of systemic problems, beyond the control of individual health care agents.