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Monday, September 24, 2012

By my side

The federal Center for Medicare and Medicaid Services has enacted new rules for hospitals to ensure the right of every patient to have someone - such as a spouse, relative or friend - to help them make medical decisions and to provide emotional support.  This is a very good thing.

The experience of serious illness carries with it not only the crisis of confrontation with our own mortality, but also, all too often, alienation and a sense of powerlessness.  Our hospitals and medical profession have, in the past, done much more to exacerbate this kind of suffering than to address it.  From Doctor's Orders to Visiting Hours, it is no wonder that in his role as a terminal patient in "The Bucket List" Morgan Freeman's character talks about "busting out" of the hospital.  Indeed, leaving "Against Medical Advice" is as unsanctioned (and liberating) as a jailbreak.

Persons receiving hospital care have the right to appoint a "representative." The healthcare team, led by the physician-of-record, communicates with this individual just as it does with the patient himself, and so allows the patient the opportunity to share decision-making with another trusted person.  The new rules also provide for a "support person" who may or may not be the representative.  This person helps with visitation, ensuring that anyone the patient wants to visit can do so while also helping to protect the patient's privacy by limiting visitation in accordance with the patient's wishes.  

Among the traditions that may be most offensive to the autonomy of hospitalized patients is that when certain procedures are undertaken, the patient's visitors - even a spouse - may be asked to step out.  This goes on regardless of the patient's wishes.  A variety of explanations are offered: the procedure will be too upsetting for the visitor, or the visitor may faint, or the staff will be distracted.  None have ever been studied scientifically, and to the extent that unrestricted visitation has been evaluated, we know that it is helpful to patients.  Moreover, it is their right.

When I need the services that can only be provided in an acute-care hospital, I will want my wife or my children there.  I will understand that the number of visitors may need to be limited if I have a room mate, although I think that double rooms are a questionable practice and need to be abolished.  I will probably ask my wife to be there if I need a tube inserted into my stomach or chest, unless I am asleep for the procedure.  If I have grandchildren at that time, I will decide with my wife whether it is in their best interest to come into the hospital, and not leave that decision to hospital staff.  And if I become unable to make decisions on my own behalf I will expect my physicians to treat the decisions of the person I have pre-appointed as though they were my own.

Surely not all patients will want the same things or decide in the same way.  This is very much to the point.  But every patient will have the right to decide how they decide and how they live within the walls of the hospital, walls that we can hope will represent not incarceration, but patient-centered care.


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