Establishing Treatment Goals

ESTABLISHING TREATMENT GOALS

Treatment and care goals

Advanced care planning and goals of care. Once the diagnosis of ATC has been verified, the attending physician should convene a multidisciplinary team discussion with subspecialists who may be involved in the patient's care (115–118), including palliative care expertise (119). This discussion should precede a discussion with the patient. The goal of this discussion is to reach consensus over the realistic treatment options that can be offered to the patient to improve continuity of care and reduce internal disagreement over goals of care. Overly optimistic messages to patients, as well as overly pessimistic messages, can dramatically affect advanced care planning discussions with patients (120–124), patient decision making, well-being, and beneficent care (125).

  • RECOMMENDATION 14 Physicians involved with the management decisions in the care of the patient should consult with multidisciplinary specialists who may be involved in the care of the patient, either at the present time or in the future, before having ''goals of care'' discussions with patients.
       Strength of Recommendation: Strong
       Quality of Evidence: Low

Decision-making capacity and informed consent. Decision-making capacity means that patients have the ability to understand and appreciate the relevant information necessary to make an informed medical decision (126).* There are many barriers to decision-making capacity, which include the physical or psycho-social consequences of having a serious illness, as well as factors such as language; literacy; numeracy; pain or delirium; mental health disorders, such as depression, anxiety, or serious addictions; and untreated mental illnesses, such as schizophrenia (130). Patients without adequate decision-making capacity cannot provide genuine consent to treatment. Assessing decision-making capacity supports both the principles of autonomy and beneficence because patients who are not able to make autonomous decisions require special protections through surrogate decision making according to patient preferences (if known) or in the patient's best interests (131,132). Autonomous decisions must also be voluntary, without coercion (133). The following questions can help to assess decision-making capacity. The first three questions assess understanding, and the last four questions assess appreciation and rationality (134).

  • What do you understand to be the current situation?
  • What are your treatment options?
  • What will happen when you take this treatment? What makes you not want this treatment?
  • Why do you want this treatment?
  • What other choices do you have?
  • Tell me about the decision. How did you arrive at your choice?
  • What questions do you have? Is there anything that you are particularly worried about?
  • RECOMMENDATION 15 Patients must have decision-making capacity to consent to or make particular medical decisions. Concerns about diminished or impaired capacity may prompt a psychiatric consult or clinical ethics consult to assess barriers to capacity.
       Strength of Recommendation: Strong
       Quality of Evidence: Low

Surrogate decision making. The ethical principle of autonomy/respect for persons obligates health care providers to seek out surrogate decision makers for patients who do not have decision-making capacity. Surrogate decision makers are required to make decisions according to the patient's preferences (if known) or in the patient's best interests if preferences are unknown. If the patient has not appointed a surrogate decision maker and/or has no Advance Directive, physicians should be aware of their state's laws surrounding proxy decision making. Local jurisdiction surrogacy laws may vary. In the United States, some states have family hierarchy laws, while some do not. If there are questions about who may serve as the patient's surrogate decision maker, treating physicians should consult with their hospital ethics committee or hospital attorney about appointing a proxy decision maker.

  • RECOMMENDATION 16 If patients require a surrogate (proxy) decision maker, the treating physician should ensure that one is appointed according to the patient's stated preferences if known (written or verbal) or in compliance with local jurisdiction laws surrounding surrogacy and guardianship in consultation with a hospital ethicist or attorney.
       Strength of Recommendation: Strong
       Quality of Evidence: Low

Truth-telling, patient autonomy, and beneficent care. Beneficent care refers to care in which clinical benefits are maximized, while potential clinical harms are minimized (135,136). What constitutes clinical harms in ATC management may be highly variable and can depend on a range of circumstances such as the patient's age, comorbid conditions, tumor status, overall health, and psychosocial support system. Thus, clinical management must be guided by patient preferences with respect to quality of life, which become known through an in-depth candid discussion with the patient, in which there is full disclosure of the diagnosis, realistic prognosis, and treatment options available for prolonging life (137,138). In this discussion, all relevant potential risks and benefits of available therapies must be disclosed (139). The concept of innovative therapy should be fully explained to the patient; innovative therapy refers to a treatment plan developed for a patient in the absence of a proven standard therapy, in which the goal is beneficent care for the patient and not the collection of data for generalizable knowledge (140,141). However, if the patient is being considered for or is enrolling in a clinical trial, this must be fully disclosed, and the informed consent procedures for the trial must be followed.

As appropriate, the patient should be provided, as one available option, palliative care and aggressive pain management, as well as the option to discuss his or her distressing diagnosis and end-of-life issues with psychosocial experts, including pastoral care (119,142,143). The early introduction of psychosocial support and pastoral care can help to reduce what is known as "existential suffering" in patients who may need to have closure about their life events or life relationships (144).

  • RECOMMENDATION 17 In consultation with a multidisciplinary team (see Recommendation 14), a candid meeting with the patient should be scheduled in which there is full disclosure of the potential risks and benefits of various treatment options, including how such options will impact the patient's life. Treatment options discussed should include palliative care. Patient preferences should guide clinical management.
       Strength of Recommendation: Strong
       Quality of Evidence: Low

Advance directives, surrogate decision making, and code status. All ATC patients with decision-making capacity should be encouraged to draft an advance directive, which names a surrogate decision maker in the event the patient loses the ability to communicate wishes (145,146). Although advance directive forms in the United States vary from state to state, these documents can also specify patient preferences regarding intubation, nutrition supplementation and hydration, the placement of feeding tubes, intravenous ports, and tracheostomy, as well as code status, such as do not resuscitate (DNR). A newer term, allow natural death (AND), may be used as an alternative order (147) in limiting aggressive care and one which patients, families, and health care providers may better understand and appreciate. Advance directive documents can be highly problematic because they do not account for many of the nuances in intensive care unit care; additionally, DNR can have multiple meanings for practitioners, and reversible conditions, for example, may go untreated, which can hasten death (147–149). For these reasons, using the term AND is recommended over DNR when discussing end-of-life preferences with patients (147). Clinical ethicists recommend that naming a surrogate decision maker is the most important feature of advance directives (145,146). The surrogate should then be asked to make substituted decisions based on the patient's preferences. Naming a surrogate decision maker is particularly important for patients with no living family members. In states with family hierarchy laws, patients without a designated surrogate could have decisions being made by estranged spouses or other relatives (150).

Patients should be asked about code status preferences, nutrition, and hydration at an appropriate juncture, guided by a values history (151,152). Patients who have indicated they wish to be DNR or AND should be asked about suspension of such orders during surgery (153) or during other palliative procedures (154).

  • RECOMMENDATION 18 Patients should be encouraged to draft an advance directive in which they name a surrogate decision maker and list code status and other end-of-life preferences. Consider, in some cases, using ''allow natural death'' (AND) over ''do not resuscitate'' (DNR), which may be better understood by patients and families as an order that limits inappropriate aggressive care. Circumstances in which suspension of DNR or AND may occur must be discussed with the patient.
      Strength of Recommendation: Strong
      Quality of Evidence: Low

*The Patient Self-Determination Act (127,128) requires hospitals, nursing homes, and other health care facilities to ask about Advance Directives or to record patient preferences regarding certain treatments should the patient lose decision-making capacity. Additionally, all states have specific health care laws that include proxy/surrogate decision making. See for example, New York State's The Family Health Care Decisions Act [N.Y. Pub. Health— Article 29-CC (2994-A-2994-U)], which reflects more flexibility in who can act as a surrogate. Other states, such as in Tennessee, Virginia, Georgia, Pennsylvania, Delaware, and Utah have specific laws regarding who may serve as surrogate decision makers (129). For information on a particular state's health laws, contact your state legislature or institutional health law office.