Chapter 2 – How Much Does the Family Want to Be Involved in Decision-Making?




Abstract




As advancements in medical therapy improve survival, we are confronted with more patients who either cannot communicate or lack decisional capacity, leaving a more common dependency on collaborations with surrogate decision makers. Accompanying these advancements also come radically more complex scenarios to consider that require us to occasionally compromise between quality of life and longevity of life. For instance, modalities such as continuous renal replacement therapy, extracorporeal membrane oxygenation, left ventricular assist devices, and organ transplantation can certainly extend the lives of their recipients, but at a cost of potential complications, time in the hospital, and variable success. Further, the scale between physician-directed decision-making and medical consumerism is weighing heavier toward giving patients a wider breadth of decisional authority in their health care, and the intensive care unit (ICU) is no exception. The recognition of the importance of autonomous decision-making in the latter half of the twentieth century created a need to establish the shared medical decision-making model that incorporates the values and choices of patients with the medical expertise of the physician, as discussed elsewhere in this text (see Chapter 1, When Does Shared Decision-Making Apply in Adult Critical Care?). A natural extension to the increasingly used shared decision-making model requires that we make reasonable efforts to seek the collaboration with surrogate decision-makers when the patient is unable to represent themselves.1





Chapter 2 How Much Does the Family Want to Be Involved in Decision-Making?


Christopher Bryant and Michael A. Rubin


As advancements in medical therapy improve survival, we are confronted with more patients who either cannot communicate or lack decisional capacity, leaving a more common dependency on collaborations with surrogate decision makers. Accompanying these advancements also come radically more complex scenarios to consider that require us to occasionally compromise between quality of life and longevity of life. For instance, modalities such as continuous renal replacement therapy, extracorporeal membrane oxygenation, left ventricular assist devices, and organ transplantation can certainly extend the lives of their recipients, but at a cost of potential complications, time in the hospital, and variable success. Further, the scale between physician-directed decision-making and medical consumerism is weighing heavier toward giving patients a wider breadth of decisional authority in their health care, and the intensive care unit (ICU) is no exception. The recognition of the importance of autonomous decision-making in the latter half of the twentieth century created a need to establish the shared medical decision-making model that incorporates the values and choices of patients with the medical expertise of the physician, as discussed elsewhere in this text (see Chapter 1, When Does Shared Decision-Making Apply in Adult Critical Care?). A natural extension to the increasingly used shared decision-making model requires that we make reasonable efforts to seek the collaboration with surrogate decision-makers when the patient is unable to represent themselves.1


Shared decision-making and the expansion of consumerism may be a novel idea for families. Although the ethics literature often focuses on the importance of adjusting to the contemporary paradigm of shared medical decision-making, we must also consider the other half of the equation. We unknowingly make a significant leap forward when we assume that all patients and surrogates will embrace this methodology or even agree to participate in this model. Some patients might even prefer a more traditional method of decision-making, wherein the physician is the sole decision maker, and find it uncomfortable or odd to be given choices that they think are the domain of the physician. In fact, only about one-half of surrogates prefer to play a role in medical decision-making.2 We must come to the realization that, if we are going to elevate the importance of autonomy, we ought to include the decision maker’s right to forgo elements of that autonomy if it meets their needs. In contrast, other patients may not wish to yield much decision-making at all and believe they should be given every potential option, even those that the physician’s experience and the evidence would suggest are very likely to cause more harm than benefit.


There are some psychological subtleties to the literature on this subject; for instance, gender, religiosity, and trust in medicine are associated with certain expectations from surrogates regarding their role.2 These details do not capture the full spectrum of surrogate qualities and preference; every patient and surrogate should be approached initially with an open mind with regard to their desired input in the decision-making for the patient. As the provider–surrogate relationship develops, over time this approach can be fine-tuned to better fit individual circumstances. For example, an engineer might prefer more detail-oriented data and clearly enumerated options, whereas a spiritually oriented person may only want to be involved in purely value-laden questions. The only way to differentiate these two would be to invest enough time in understanding their background.


Although presuming the extent to which surrogates want decision-making roles before fostering a partnership is ill-advised, the content of the decision definitely changes both surrogate and provider opinion on where the responsibility lies. Distinguishing minor decisions from major decisions is important to help clarify for which issues most surrogates would like to have input. On average, there are about nine decisions per patient per daily rounds.3 It would be inefficient and overwhelming to surrogates if all of these decisions were addressed with them, and the majority of the decisions would likely best be determined from medical expertise alone.


Within the many decisions to be made is an intermingling of technical decisions and those with value-laden implications. For instance, consider intubation. The decision to place a breathing tube is a heavily value-laden one; therefore, patient goals of care — if they can be obtained — should be equally important to the medical indication to intubate. For a patient with respiratory failure, intubation and ventilation are a commitment to a care path that is very different than if they are forgone. A divide between a likely death and potentially living with a disability or a protracted hospital course is created. By contrast, the decision as to which size endotracheal tube to place lacks a component of personal value and depends on patient mechanics and provider expertise. Distinguishing value-laden decisions from technical decisions can aid providers in addressing the appropriate topics in family discussions and focus on what really matters with regards to surrogate decision-making. This practice can also help to keep surrogates from being overwhelmed with choices and allow them more time to speak on value-laden decisions. Typically, surrogates are not concerned with what size endotracheal tube the team would like to use for an intubation, no more than a plane passenger wants to be consulted on what elevation their commercial airline should choose to cruise.


Occasionally, a surrogate may request a provider fill a more paternalistic role with a question such as, “What would you do?” This question is a direct invitation to contribute more to the value-laden component of decision-making. If done at the behest of the surrogate, there is no harm in suggesting what we as physicians believe is best; it can be a good exercise in empathy as well. We should be careful to acknowledge that we are applying our personal values to the situation, however. Similar to a provider caring for their own loved one, mixing medical practice with personal relationships can compromise the quality of care. Alternatively, these situations can be good opportunities to help surrogates bridge the gap between medical care and their loved one’s values. Identifying specific qualities about the patient, in conjunction with an educated discussion on prognosis, can clarify how certain interventions will affect each individual patient. It is not uncommon for surrogates to misunderstand the downstream reality of medical interventions, so coupling that knowledge with pertinent examples may help to decrease the confusion.4


Of course, some surrogates are sincerely looking for a direct answer to the question, especially if they have a more traditional view of the role of physicians and expect a paternalistic approach. They could also be trying to subconsciously avoid the psychological trauma of making these decisions, or they just feel lost in the fray. Ensuring that surrogates are at least approached with the responsibility of shared decision-making is an opportunity that should not be missed, because there are advantages to surrogate involvement in patient care that extend beyond medical decision-making.


From a practical standpoint, family and surrogates can be a valuable resource in a noncommunicative patient’s presentation when gathering the history. Establishing the details of patient care and values early on with surrogates can help to guide decisions if the surrogate is unavailable to discuss medical interventions in a critical moment. The duration of stay for patients in an ICU as well as mortality rates may be decreased by increasing time spent communicating with family about decisions.5 Common ICU-related complications, such as ICU delirium, can be mitigated with increased family presence by helping to reorient the patient, ensure they have sensory aids if needed, and provide them with a sense of familiarity.6 Family members frequently assist nurses with routine care of the patient; simply being there to help turn or clean their loved ones can alleviate burden on health-care workers.7 Of course, after the patient leaves the ICU, the family may play a primary role as health-care provider at home, and involving them early on in routine care can help to prepare them for a softer transition out of the hospital and strengthen their discharge training.


Having a loved one ill in an ICU can easily consume the lives of surrogates. Although their presence can be invaluable to providers, it does not come without its own sharp edge. Surrogates who help in decision-making are susceptible to symptoms of post-traumatic stress and ultimately are at risk to develop post-traumatic stress disorder.8 Higher rates were associated with family members who felt the information they received was incomplete, if their relative died in the ICU, if they died after end-of-life decisions, if they shared in the decision-making, and most of all if the members shared in end-of-life decisions.8 The latter part of these data act as an apparent counterweight to much of the discussion presented. Providers need to understand the psychological toll that these conversations can have on family; a routine discussion for them may be the moment that wakes a spouse in the middle of the night for years to come. To what extent are providers responsible for the well-being of surrogates? Of course, patient care is the primary concern for physicians, but it is unfortunate that this goal can be at odds with surrogate well-being and that there is not a better compromise to address this situation.


To a certain extent, it should be expected that families who watch their loved ones endure time and possibly death in an ICU undergo some psychological stress; however, more work needs to be done to address surrogate stress, because their input is increasingly incorporated into patient care. For instance, earlier involvement in medical decision-making before end-of-life decisions are associated with an easier time coping when the decision has to be made.9 Careful language can help to reframe the conversation — instead of presenting the decision to “let the patient die,” it can be said to “alleviate suffering,” or “allow the natural disease process to run its course,” or another softer alternative.9 When surrogates know a patient’s preference ahead of time, they will likely have a less difficult time with tough decisions, highlighting the importance for primary care providers to encourage patients with chronic illnesses to discuss their preferences early with potential surrogate decision makers.9 Continuity of care and having one provider be the primary resource for surrogates to turn to is also associated with improved surrogate well-being.9 And, to further emphasize the importance of establishing a relationship with surrogates and coming to know their preferred level of input, some surrogates feel empowered when contributing to medical decision-making as a form of coping. In fact, it could be particularly distressing for a surrogate who expects to have their hand on the tiller to watch their loved one’s health roll aimlessly in the waves while they stand powerless on the shore. It is important to identify those who may benefit from feeling more in control and accommodating them as appropriate. These measures can help to attenuate extraneous stress on family members and surrogates in our increasingly collaborative health-care environment.


The ever-changing landscape of medicine carves different challenges for current and future providers. A combination of changing attitudes on how medical decisions should be made and shifting patient scenarios has culminated in a reliance on individuals other than the patient to participate in the health care of their families. Juggling the health and relationship of a single patient can be a daunting task, let alone a series of family members, all with their own unique ideas of how medicine works and what they believe their and the provider’s role should be. For the reasons summarized, family and surrogate involvement will be an increasingly used collaboration and, if done well, can provide useful advantages to providers and patients alike. The individuals who speak on behalf of our patients should not be seen as another obstacle to finishing the day’s work, but as one more opportunity to provide good health care to patients. They should also be seen as ends in themselves, and more should be done to address their traumas when they choose to be on the front lines with providers as their loved ones are critically ill or dying. Providers will need to remain agile in meeting the spectrum of expectations from family members; there is no single approach that provides universal success. Ultimately, surrogates should be encouraged to involve themselves in decision-making as much as they feel comfortable and as much as is medically safe and reasonable, with the shared goal of the patient’s best interest.

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May 29, 2021 | Posted by in CRITICAL CARE | Comments Off on Chapter 2 – How Much Does the Family Want to Be Involved in Decision-Making?
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