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While working on their recoveries at TLC, patients often tell staff about all of the activities they will engage in once they are “all better.” They will share these plans regarding work, vacations, school and family clearly having spent significant time planning future activities assuming an identical skill level as that enjoyed pre-injury. There is nothing inherently wrong with this kind of planning, but there is an important complementary plan that is missing. The majority of the patients at TLC have suffered severe traumatic brain injuries and contend with multiple areas of deficits. Moreover, insurance companies and other funding sources inevitably only fund rehabilitation for a finite span of time. Those spans of time almost never cover the entirety of a patient’s incremental progress back to “100%,” and no such funding source can make allowances for an indefinite stay. After a number months (the exact number differing among funding sources and insurance plans), sources will cut off funding and force discharges even if patients would benefit from further therapy. This is why it is important for patients and their families to make at least two plans. One of these plans can assume a full recovery, but another plan should recognize the very real likelihood of a less than full recovery.
The first plan, based on a full recovery, tends to be fairly straightforward. Patients generally want to return back to the majority (if not all) of pre-injury daily activities. The second plan, based on a less than full recovery, can be more difficult. This plan is far more emotionally taxing, as it requires patients and families to confront the possibility that the journey of recovery will be longer and more complex than they originally hoped it might be. It also means that patients and families will have to identify needs, resources and accommodations necessary to be successful incorporating effectively permanent deficits into any planning equation. This takes a considerable amount of time and effort. Neglecting to make these plans though can be very problematic, and in some cases quite dangerous. For instance, if a patient has difficulties with balance and there is no plan in place to make accommodations for those difficulties, a patient may go home without necessary equipment such as grab bars and a shower chair to compensate for balance problems in the bathroom. This would place the patient with balance deficits at a high risk for a fall, which could lead to a serious injury. Similarly, if no secondary plan is made for a patient who is confused and experiences disorientation, that patient may be left at home alone. This confused and disoriented patient may then leave home unaccompanied and become lost wandering the streets, which clearly places that patient in extreme personal danger.
The obvious question when making a plan for a less than full recovery is how does one best make such a plan when the patient is still actively recovering? Does one guess that a patient will be 25, 50 or 75% better at eventual discharge? Experience dictates that it is generally preferable to make this secondary plan based on the worst-case scenario (which makes it more likely that all contingencies will be covered) regardless of the rate of improvement a patient appears to exhibit. So what is the worst-case scenario? The worst-case scenario is the situation arising if a patient were to make no further improvements beyond current status. After all, as long as a patient does not have some additional health issue arise (e.g. seizures), then overall recovery should not decline significantly. This promotes the valid assumption that the current state is the worst possible state and should then be used to inform secondary planning. So how does one talk about this thorny issue with a patient currently devoting so much of his or herself to the recovery process? After introducing the topic and having the patient agree to a discussion, I usually start with a version of the following: “I can see that you are working hard and getting better through rehabilitation. However, no one has a crystal ball to predict the future. All we know for certain is today. Let’s pretend for a moment that you do not get any better than you are right now or that perhaps the insurance company decides to force your discharge tomorrow. What would you need at home to be successful? What activities could you take part in on your own or with help? In addition, which activities might you be unable to take part in at your current recovery level? By doing this, we can be better prepared for even the hardest post-discharge situation.” With this type of introduction framing the discussion, patients are able to more comfortably explore these distressing potential eventualities.
As alluded to earlier, this discussion can be very emotionally difficult for patients and family members. It forces focus on a troubling “what if” and can provide a quite painful reality check resulting from a practical assessment of skills impacting needs. It is important that everyone understands that this does not mean that it is assumed the patient will not get better or that rehabilitation is useless. This planning is to raise the likelihood that the patient and family members will be prepared for all possibilities and to lower the likelihood of unexpected dangers and headaches later in the recovery journey. Overall, the goal is to have a smooth, safe and successful transition to home life after inpatient rehabilitation.
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