Date: Mon, 15 Jul 2002 13:48:42 -0500
Subject: Re: [Dysphagia] Continuing oral intake even after aspiration demonstrated on Modi fied Barium Swallow

When a patient refuses a recommended treatment, the clinical-ethical-legal question most often asked is whether this patient is capable of making an informed refusal about this particular treatment. In order to demonstrate capacity (decision-making capacity) a person is required to demonstrate (1) the ability to understand their condition and the treatment options presented, (2) appreciation of the consequences associated with each treatment choice, (3) reasoning regarding his/her choice, (4) the ability to express a choice (see Grisso, T & Appelbaum, P. Assessing competence to consent to treatment: A guide for physicians and other health professionals. Oxford Press, 1998; Appelbaum PS & Grisso, T. Assessing patients' capacities to consent to treatment. New England Journal of Medicine. 1988 319: 1635-1638.)

Traditionally, psychiatrists are called to consult and help make a determination of a patient's decision-making capacity (DMC), because of their history with legal competency determinations. However, any physician is able to make an assessment of DMC (ideally in consultation with appropriate professionals). In this case, with a history of depression, psychiatry could prove useful in helping to discern the extent to which depression is a factor in this person's refusal (ie, is depression clouding this person's ability to reason?). An ethics consultant (if you have one) may also be helpful.

If the patient demonstrates DMC for this decision, then the prevailing view (in the US) is that he has the right to accept or refuse that particular medical intervention. If he lacks DMC, it gets harder. Then, usually, family members (next of kin, surrogate decision-makers) are included in the process - with their primary role being confirmation of what this person would most likely have wanted. It's especially tricky to do this when a patient is awake and alert and actively refusing something. If the primary concern here is legal issues, then the documentation of discussions with the family may be prudent.

The determination of DMC does not have to be a threatening, negative, coercive process. It should be a way for the care team (including the SLP) to be reassured that the patient really does understand the treatment and is making a truly informed choice. Part of his informed decision-making should include a discussion about the lack of certainty in the literature about the exact risk of continuing to aspirate, as well as information about the risks of aspiration and other complications associated with the other options (e.g., tube feedings). Various creative options could also be explored: is he willing to drink nectars/milkshakes etc with meals if he is still able to drink water? Sometimes there is one particular thing a patient wants and allowing that (even once a day) puts everyone in a better negotiating position to modify other things - so that the % of thin liquids (in this case) is reduced, if not eliminated. Would he be willing to try (whatever treatment you proposed) for 48 hours and then reassess?

Personally, I shy away from possible litigation driving clinical decisions. It looks, from your e-mail address, as if you practice in Australia? Not a clue about the legal system there. In the US, any patient can sue any time, even if they follow your recommendations to a "t." There is a difference though between filing a suit and a successful suit. Ethically, the goal is to ensure that a capable patient's autonomy is respected (as long as they aren't hurting others) and that a patient who lacks capacity is reasonably protected from making choices that could hurt them. So it turns out that good clinical ethics (e.g., including the patient in the discussion of options, documenting how capacity was determined, incorporating family in tough choices, leaving the door open for the patient to change his mind) - also yields a trail of documentation that could prove helpful if for some reason the case is taken to court. When you think about the alternatives associated with overriding an autonomous refusal- such as forcing a patient with DMC to accept an NG tube for hydration - the legal possibilities blossom into such things as "battery."

There is considerable regional and institutional variation in how these cases are handled. A local physician, ethics consultant, risk manager, hospital administration may already have policies and procedures in place for determining capacity and mechanisms for documentation and handling patients' refusals of treatment.

>I have a patient at the moment who has just recovered from a pneumonia
>(never linked to aspiration) and is now refusing most food and fluids with
>steady weight loss. He is clinically depressed but it was decided to proceed
>with a barium swallow just in case there was another reason for his reduced
>intake. On barium swallow this man aspirated consistently on thin fluids
>(pre, during and post swallow) but not with slightly thick fluids. He did
>not aspirate with soft solids. Our recommendation was therefore that he have
>slightly thick fluids and a soft diet. This man however refused to drink the
>thick fluids and requested thin fluids regardless of the consequences. We do
>not know how long he has been aspirating for or why his swallowing is so
>bad. Given that evidence states that only 38% of known aspirators develop
>pneumonia (and we cannot clearly attribute his recent pneumonia to
>aspiration) and that he was at high risk of dehydration we (after discussion
>with med team) have allowed him to continue thin fluids. Would others have
>made the same call? or would this be considered a breach of duty of care
>when we know this man is aspirating?
>Does anyone have any more evidence to support our decision? Does anyone know
>of any coroners cases/enquiries into deaths by aspiration pneumonia in
>similar cases? Was the speechie deemed to have been negligent?