SCHEN SCC-CSI research @ MUSC

1. SCHENSCC-CSI research @ MUSC Walter Limehouse MD MA MUSC Emergency Medicine

2. We have only just begun • Template for communications for inpatients with life limiting illness developed • Template adopted as policy @ MUSC • Policy rollout in progress

3. MUSC policyCommunication Process for Inpatients with Life Limiting Illness • Purpose: To promote communication, consent and the decision-making process for patients with life-limiting illness

4. Communication Process for Inpatients with Life Limiting Illness • Life Limiting Illness may include one or more of the following: • Clinical condition such that death within six months would not be unexpected • Chronic debilitating illness with >1 hospitalization and/or >1 emergency visit for same illness in a 30 day period • Acute failure of one or more organ systems resulting in unplanned ICU admission or transfer

5. Communication Process for Inpatients with Life Limiting Illness • Policy: In accordance with the Patient Self-Determination Act of 1990 effective December 1, 1991 and Policy C-12. MUSC offers patients the opportunity to affirm or establish advance healthcare directives during their hospitalization. As part of this process, MUSC encourages its health care providers to communicate with patients about their wishes surrounding end-of-life treatment prior to the patient losing the capacity to make their own decisions.

6. Communication Process for Inpatients with Life Limiting Illness • These communications may include the following: • determination of decision-making capacity according to established South Carolina law; • determination of the patients’ understanding, beliefs, values, and wishes; • identification of the proper decision makers, agents, or surrogates; • facilitating effective communication; and • consulting palliative care and/or ethics to address concerns.

7. Communication Process for Inpatients with Life Limiting Illness • If the patient experiences a Life Limiting Illness as defined above and does not have an applicable advance directive, the following should occur: • Any member of the interdisciplinary team may consult Case Management or Social Work from 8 a.m. to 4:30 p.m. daily to request a nurse case manager or social worker to facilitate completing the planning notes identified below and to schedule meetings as needed to develop or revise goals of treatment. Chaplains may initiate the process after hours. Lead physicians or their designees should conduct discussions with the patient or surrogate toward reaching shared goals of treatment.

8. Communication Process for Inpatients with Life Limiting Illness • If all members of the interdisciplinary team agree to the plan of treatment and the patient or family agrees with the plan and does not have questions or concerns, the case manager or social worker works with the team to facilitate completion of the planning notes

9. Communication Process for Inpatients with Life Limiting Illness • If not all members of the interdisciplinary team agree to the plan of treatment and/or the patient or family do not agree with the plan or have questions or concerns, consultations should be made to the Ethics Committee or Palliative Care, as appropriate.

10. Communication Process for Inpatients with Life Limiting Illness • The medical team should determine whether the patient has decision-making capacity and, if the patient has capacity, ask him/her to identify a surrogate to speak for them in case he/she becomes unable to make decisions. If the patient is unable to make decisions, two physicians should so certify as outlined in Medical Center Policy C-02 Consents and thereby determine the patient’s appropriate legal surrogate.

11. Communication Process for Inpatients with Life Limiting Illness • The medical team should consult with the patient or their surrogate decision maker as appropriate to explore the patient’s beliefs, values, and known wishes. If the patient lacks decision making capacity, communications with the surrogate decision maker may consist of exploring whether any wishes were expressed in the past, whether expressed verbally or through written advance directives, such as • SC Declaration of Desire for Natural Death, • SC Healthcare Power-of- attorney, or • Aging with Dignity’s “Five Wishes”.

12. Communication Process for Inpatients with Life Limiting Illness • If the patient lacks decision making capacity and their wishes are not known, the surrogate may base decisions upon the patient’s best interests after weighing the benefits and burdens of treatment.

13. Communication Process for Inpatients with Life Limiting Illness • The medical team should communicate frequently with patient and/or surrogate to • Provide the patient and family or other surrogate decision maker current diagnosis and realistic expectations; • Ensure consistency in the feedback given and received by all parties, including various physicians, family members, and caregivers who are stakeholders in setting goals of treatment • Describe and define ineffective treatment, if appropriate including but not limited to. • Benefits of treatments available, and • Burdens of treatments considered; • Address needs and points of stress for caregivers

14. Communication Process for Inpatients with Life Limiting Illness • The medical team should determine if the patient is receiving clinically indicated, • effective treatment (including comfort care, if appropriate) in accordance with known wishes. For example, • Look for verbal clues of concern from clinical team • “I don’t think what we are doing is what the patient really wants.” • Look for values statements from the patient • “Did the patient ever say what she would want in a situation like this?”

15. Communication Process for Inpatients with Life Limiting Illness • Look for lack of response to specific treatments or interventions • Identify prolonged stays without change or progress • Look for demographics like age, LOS, diagnoses known to be difficult to treat to recovery. • Note increased complexity of treatment with little response

16. Communication Process for Inpatients with Life Limiting Illness • Look for objective data and literature about outcomes. • Move toward consensus among the clinical team. • Meet with patient / surrogates, when needed, to revise goals of treatment.

18. Serious Illness Planning Progress Note

19. Acknowledgements • Upstate consensus on EOL decision-making • Stuart Sprague PhD, Steve Williams JD • SCMA House of Delegates, May 2010 • RESOLUTION on STANDARD COMMUNICATION, CONSENT AND DECISION-MAKING PROCESS FOR SERIOUSLY ILL INPATIENTS IN SOUTH CAROLINA • SCMA Bioethics Committee & Greenville County Medical Society

20. Acknowledgements • The Seven Point Communication Review of Symptoms (C-ROS) • Ability to Consent • Patient Voice • Physician Voice • Patient Understanding • Physician Understanding • Advance Directives • Decisions • Mark O’Rourke, SCMA Bioethics Committee

21. SC Advance Directives • SC Code SECTION 44-77-50. Form of declaration of desire for natural death • http://www.scstatehouse.gov/code/t44c077.htm • SC Code SECTION 62-5-504. Healthcare Power of Attorney, • http://www.scstatehouse.gov/code/t62c005.htm • Aging with Dignity “Five Wishes” form, • http://www.agingwithdignity.org/five-wishes.php

22. Next steps • IRB submission • Analysis of outcomes before & after policy rollout • Patient / surrogate outcomes • Medical staff outcomes