Surgical Ethics Education Resources #19

[Sent – 13 July 2019 to the 170+ surgeons et al of our Surgical Ethics (Education) Consortium]

Greetings from St. Louis and WashU. For my ‘Surgical Ethics Education Resources -- #19’ communication, I am sharing with you (inserted below) a set of possible discussion starters for reaching consensus with patients and their families re feasible expectations (goals) of care. These observations and recommendations are drawn from extended time spent with surgical teams and intensive care teams in various ICUs – Neonatal, Medicine, Neurology, Surgery, Cardio-Thoracic – over the past 30+ years. I welcome your feedback and would be pleased to learn about other discussion starters you have found to be effective for gently but intentionally opening/sustaining these very important discussions.

Doug

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Establishing Feasible Expectations: Possible Discussion Starters

Douglas Brown, PhD

Two residents who were near the end of their ICU rotations were asked separately – “At any given time, how many of the management plans in the ICU make no medical sense to you?” The question had to do with the (lack of a) link between the management plans and feasible outcome/discharge expectations. Both residents independently responded – “50%”.

An ethically skilled surgeon is prepared to move discussions with patients or surrogates toward consensus re the patient’s outcome/discharge expectations. A patient’s expectations may be restoration to preadmission functional status, relief from pain and suffering, survival regardless of quality of life, or survival long enough for desired closure. Quality of life outcomes that may be unacceptable to a patient include being permanently unconscious, being permanently unable to remember or make decisions or recognize loved ones, being permanently bedridden and dependent on others for activities of daily living, being permanently dependent on hemodialysis, or being permanently dependent on artificial nutrition and/or hydration.

The focus of care for most patients is to restore the patient to a level of function compatible with the patient’s expectations, with all appropriate therapies being initiated and continued. If the surgeon concludes that such restoration cannot be achieved, further discussion with the patient and family members is needed in order to reconsider the expectations for the hospitalization. Based on this discussion, current management may not be escalated, additional interventions may not be introduced, and current life-sustaining treatments may be discontinued so as not to place undue burden on the patient. In some cases, the focus of care should shift to concentration on the patient’s comfort during the dying process.

Sustaining the discussion of feasible goals of care with patients and their families is an art. Here are some effective discussion starters an ethically astute surgeon may use --

• “What makes a day ‘good’ for you?” (with attention given to how ‘good’ is described)
  
  
• “What are your difficult days like?” (with attention given to how ‘difficult’ is described)
  
  
• “Do your good days help you make it through your difficult days?” (with attention to indications of how firm a ‘yes’ is and whether the good:difficult ratio is diminishing)
  
  
• “Do you more often find yourself waking up in the morning hoping for a good day or hoping not to have a bad day?” (with attention to how encouraged or discouraged the patient is)
  
  
• “What do you want me to know as I and the surgical team consider how best to take care of you?” (with attention oriented toward acceptable or unacceptable outcomes rather than toward management plan details)
  
  
• “What outcomes do you want to keep fighting for?” (with attention to how feasible the outcomes are)
  
  
• “Are you concerned that your illness will interfere with your participation in any activities or events in the near future that are especially important to you?” (with attention to what demands these activities or events would make on the patient, to how feasible it is for the patient to participate in these activities or events, to what condition the patient hopes to have at the time of these activities or events)
  
  
• “Do you have any questions or worries that are hard to talk about with your family or friends?” (with reassurances that such can be discussed with you in complete confidence)
  
  
• “Patients sometimes tell me they find themselves thinking ‘that would be worse than dying’. Have you had this thought?” (with attention to indications re what such conditions would be)