Forum.

Recommendations for decision-making

In order to make recommendations, we have to extrapolate from available related literature and research findings. Not all of the following are relevant to every situation and each patient’s case must be considered individually and carefully (Lanuke 2003)
Principle: use a systematic and inclusive process for determining whether and how to use sedation for intractable symptoms

1. Use a systematic and exhaustive process to determine that the target symptom(s) is intractable (3)
2. Actively involve the patient in the decision-making process:[C & P 1994]
   1. Determine the patient’s preferences for receiving information and for degree of direct involvement in making the decision (Stiggelbout)
   2. Elicit patient’s values, beliefs, and goals, especially those that may lead to conflicting decisions between patient and others (Murray et al 2004; Weissman 2004). (This is particularly important if the patient and physician are from different cultures).
   3. Disclosure of therapeutic options, including potential benefits and risks. (Kottow; Stiggelbout)

2. 4. If the patient is unable to participate, refer to previous discussions or documentation that suggest the patient’s values, wishes, or directives. (Quill).
3. Actively involve the family, with the patient’s permission, in the decision-making process. (Murray et al 2004)
   1. Explain that the intent of interventions is comfort and symptom management, not hastening of death (Friedlander et al 2004); [Fainsinger, intent]; Morita
   2. Elicit and address concerns (Friedlander et al 2004; Morita )
   3. Explain the process and likely achievable goals (Friedlander et al 2004; Morita Dec 2004)
   4. Explain risks (including psychological effects on family, such as sense of loss) (Friedlander et al 2004; Morita Dec 2004)
   5. Facilitate patient-family discussion (Weissman 2004) and resolution of conflict between patient and family, or among family members, related to use of sedation (Brajtman 2003; Morita Dec 2004)
   6. If appropriate, clarify the difference in roles between substituted judgment and acting in the patient’s best interest (Lang & Quill, 2004, Edwards?)
   7. If possible, provide time for the family to process the information provided i.e., don’t rush the decision (Morita Dec 2004)
   8. If necessary, provide opportunities for clarification and resolution of conflict about the use of sedation between family and medical staff (Morita Dec 2004)
   9. Provide emotional support to family members who have difficulty making decisions for a loved one (Morita Dec 2004; Hansen 2004; Brajtman 2003)
   10. Include in the plan of care opportunities to keep the family apprised of the patient’s condition and carefully explain any changes (Morita Dec 2004)
4. Actively involve all members of the team that is providing care for the patient [Woods 2004]; (Friedlander et al 2004, Lanuke)
   1. Agree on the goals of care. (3; Friedlander et al 2004)
   2. Actively elicit team members practical and ethical/moral concerns about the use of sedation in each case. [Barreth –explaining intent]
   3. Tailor the specific sedating intervention for the patient’s (and/or family’s) values and clinical needs (Morita 1999?—22?):

5. Agree to the time of the implementation of sedation with patient, family, and care team. [Morita Sep 2004 SCC; Fast Fact 107]
6. Prospectively agree how sedation will be implemented and by whom
   1. Establish criteria for adjusting the dose or schedule of sedating agents to ensure that the therapeutic goal is met and maintained (Morita Dec 2004; Hospicefed)
   2. If sedation is to be intermittent, prospectively determine the schedule for lightening of sedation, as well as what assessments and interventions are planned during the period of wakefulness (3; Rousseau; Morita)
7. Prospectively agree how the patient will be monitored during sedation. [Morita Sep 2004 SCC; Hospicefed]

Some writers include the withdrawal of nutrition and fluid in the definition of sedation for intractable distress (6,28,36, Tansjo) resulting in the confounding of sedation for intractable symptoms with euthanasia. However, other authors emphatically assert that consideration of whether to continue, discontinue, or initiate other supportive interventions are separate decisions based on their own potential therapeutic merits and burdens (3,37,38, Woods). In the absence of a clear indication that nutrition, hydration, or other life sustaining interventions are either no longer effective or are more burdensome than helpful to the patient, there is no justification for stopping them as if they were an inextricable part of introducing sedation. The decision to begin, continue, or discontinue any other intervention concurrent with sedation should be considered in context, but separately.

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