Serious illness conversations and capturing advance care planning

By Drs. Charlie Chen (biography and disclosures) and Hayden Rubensohn (biography and disclosures)

What I did before ­

Most internal medicine practitioners, leaners and attendings alike, include “code status” as an issue on an in-patient’s problem list. Often “not addressed overnight” or “needs to be discussed” is left as the plan. Generally, clinicians appreciate the importance of this task. Most, however, confuse this medical treatment decision – what is the patient willing to consent to as treatment if his/her condition were to seriously deteriorate? – as advance care planning or goals of care. Even more problematic is the need to answer these treatment consent questions in an Emergency Room when the patient is acutely ill.

Yet, even once the patient is more stabilized on a Medical Ward, conversations about goals of care are often still reduced to binary yes or no questions about cardiopulmonary resuscitation and/or Intensive Care Unit admission. All too often, once the CPR status is determined, a more robust, patient-centered goals of care conversation ceases to continue. Most physicians and trainees feel inadequately prepared to conduct difficult and comprehensive goals of care or end-of-life discussions (1, 2). Despite the disconcerting data indicating that many cancer patients have their first end-of-life care conversation during an acute hospitalization (3) or that many dialysis patients never have these discussions at all (4), a change in practice has been slow and difficult.

This cascade of unfortunate events and missed opportunities results in a worrisome mismatch in treatment and care plans between what is documented by clinicians and what the seriously ill patient has already thought about (5). We need to become less accepting of discharge summaries that read: “Code Status: the patient was full code in hospital. This should continue be explored as an outpatient.” These conversations have been incentivized for the physician through Advanced Care Planning billing codes, as outlined by This Changed My Practice contributor Dr. Catherine Clelland (6, https://thischangedmypractice.com/acp-for-patients-with-multiple-co-morbidities/). Furthermore, with data demonstrating the benefits of early goals of care conversations (7), these conversations must shift to being commonplace for patients across the continuum of care.

What changed my practice

Published in JAMA Internal Medicine in 2014, Bernacki and Block discuss the complex topic of communication about serious illness with patients (7, 8). In the article, patient, physician, and system factors, which impede early initiation of advance care planning, are examined. The reader is made more aware of his/her own internal processes that may delay or prevent goals of care conversations with their patients. Equipped with this insight, the medical practitioner is more readily able to surmount those factors and converse with patients about their wishes.

Some of the greatest lessons in this article stem from the data demonstrating that patients and their loved ones generally do want to be informed about the trajectory of their illness and be given an honest and true prognosis (7, 9). Furthermore, Bernacki and Block provide many references indicating that earlier goals-of-care conversations do not harm patients by way of anxiety or hopelessness (3, 10, 11, 12, 13). Relaying this evidence-based message to patients and their families has opened the door for richer advance care planning discussions. By reassuring them with this evidence, we have witnessed fewer families working to “protect” their loved ones by avoiding difficult conversations about the patient’s state of health.

Bernacki and Block also introduce the Serious Illness Conversation Guide developed by Ariadne Labs, a joint center between Brigham and Women’s Hospital and the Harvard T. H. Chan School of Public Health in Boston (14, 8). This guide provides a framework for physicians to engage in care planning with patients in a manner acceptable to the patient. In addressing the elements of the guide – seeking permission; determining current understanding; providing prognostic information; determining patient’s goals, fears/worries, strengths, critical functions, and treatment tolerances in context of the prognosis; summarizing; and recommending next steps – physicians can meaningfully address the nature and trajectory of the illness, how it may impact a patient’s quality of life, and how a patient might wish to live in this likely functional and prognostic reality. The authors also provide communication tips, borne out in the literature, in an effort to facilitate more effective discussions.

What I do now

The Emergency Room is an unlikely location to have robust goals of care conversation with an acutely ill patient, and even the binary “yes/no” question of whether or not they would want CRP is often decontextualized by the medical, situational and social circumstances, often resulting in no valuable answer for the practitioner. In recognition of this, we now elicit information by asking patients questions using a simple S.P.E.A.K. mnemonic:

S – Do you know who would be your Substitute decision maker? Do you have a Representation Agreement?
P – What are your Preferences for decision-making and who helps you make medical decisions?
E – Are there any prior Expressed wishes about the types of medical treatments you would want or don’t want? Do you have an advance care plan?
A – Have you completed an Advance Directive?
K – What other medical Knowledge do you need to do further planning and make medical decisions?

The answers to these questions in the ER, especially if the patient’s responses are informed by previous outpatient serious illness conversations, along with serious illness communication once they are stabilized as inpatients, have allowed us to enhance our engagement with patients on goals of care. Using the Serious Illness Conversation Guide once patients are admitted and stabilized, we have been able to extend the “code conversation” to a holistic patient-centered discussion about distinct goals and fears, and to understand how individual values inform patient decisions about current and future health care. Utilizing the tool provided by Ariadne Labs, and documenting and transmitting the information well, we feel we are able to more readily understand the perspectives of our patients and their families, enabling more robust discharge planning, more appropriate follow-up, and better communication with family physicians and other specialists involved in a given patient’s care.

2015, Ariadne Labs: A Joint Center for Health Systems Innovation (www.ariadnelabs.org) and Dana-Farber Cancer Institute. Revised Feb 2016. Licensed under the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License, http://creativecommons.org/licenses/by-nc-sa/4.0/

References

1. Block SD. Medical education in end-of-life care: the status of reform. J Palliat Med. 2002;5:243-248. (View with CPSBC or UBC) DOI: 10.1089/109662102753641214
2. Buss MK, Lessen DS, Sullivan AM, Von Roenn J, Arnold RM, Block SD. Hematology/oncology fellows’ training in palliative care: results of a national survey. Cancer. 2011;117:4304-4311. (View with CPSBC or UBC) DOI: 10.1002/cncr.25952
3. Mack J, Cronin A, Taback N, et al. End-of-life care discussions among patients with advanced cancer: a cohort study. Ann Intern Med. 2012;156:204-U65. (View)
4. Davison SN. End-of-Life Care Preferences and Needs: Perceptions of Patients with Chronic Kidney Disease. Clin J Am Soc Nephrol. 2010;5:195-204. (View)
5. Heyland DK, Barwich D, Pichora D, et al. Failure to Engage Hospitalized Elderly Patients and Their Families in Advance Care Planning. JAMA Intern Med. 2013;173:778-787. (Request with CPSBC or view UBC) DOI: 10.1001/jamainternmed.2013.180
6. Clelland C. Advance care plan (ACP) for patients with multiple co-morbidities. This Changed My Practice. https://thischangedmypractice.com/acp-for-patients-with-multiple-co-morbidities/ Published March 20, 2012. Accessed March 30, 2017. (View)
7. Bernacki RE, Block SD, Amer Coll Phys High Value Care, American College of Physicians High Value Care Task Force. Communication About Serious Illness Care Goals: A Review and Synthesis of Best Practices. JAMA Intern Med. 2014;174:1994-2003. (Request with CPSBC or view UBC) DOI:10.1001/jamainternmed.2014.5271
8. Serious Illness Conversation Guide. BC Cancer Agency. http://www.bccancer.bc.ca/new-patients-site/Documents/ACP-serious-illness-conversation-guide-card.pdf. Published 2012. Accessed March 30, 2017. (View)
9. Fried TR, Bradley EH, O’Leary J. Prognosis Communication in Serious Illness: Perceptions of Older Patients, Caregivers, and Clinicians. J Am Geriatr Soc. 2003;51:1398-1403. (View with CPSBC or UBC) DOI: 10.1046/j.1532-5415.2003.51457.x
10. Wright AA, Zhang B, Ray A, et al. Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment. JAMA. 2008;300:1665-1673. (View)
11. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:847-847. (View)
12. Emanuel EJ, Fairclough DL, Wolfe P, Emanuel LL. Talking With Terminally Ill Patients and Their Caregivers About Death, Dying, and Bereavement: Is It Stressful? Is It Helpful? Arch Intern Med. 2004;164:1999-2004. (Request with CPSBC or view UBC) DOI: 10.1001/archinte.164.18.1999
13. Clayton JM, Hancock K, Parker S, et al. Sustaining hope when communicating with terminally ill patients and their families: a systematic review. Psycho-oncology. 2008;17:641-659. (Request with CPSBC or view UBC) DOI: 10.1002/pon.1288
14. Ariadne Labs. https://www.ariadnelabs.org/. Accessed March 30, 2017. (View)

Resources:

1. http://www.health.gov.bc.ca/library/publications/year/2013/MyVoice-AdvanceCarePlanningGuide.pdf
2. http://sgp.bc.ca/wp-content/uploads/2016/10/GPSC_Preamble_Sept_13_2016.pdf

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Serious illness conversations and capturing advance care planning

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