The concept and process of advance care planning (ACP) is undergoing an evolution, from the completion of documents by an individual specifying treatment preferences in the case of decisional incapacity, to an act of communication. Communication between patients and surrogates regarding patients' values and preferences is particularly important because surrogates are frequently involved in treatment decision making for acutely ill patients. Despite the importance of patient-surrogate communication, little is known about this dyadic aspect of ACP. The few existing observational studies examining communication rely on either patient or surrogate report alone, without concomitantly examining the perspectives of both. Prior work of the Principal Investigator has studied dyads' engagement in ACP as a process of health behavior change. This work has demonstrated that older persons and surrogates are frequently in different stages of behavior change regarding communication about end-of-life issues. As a consequence, sizeable proportions of pairs disagree about whether they are in the Action/Maintenance stage, meaning they disagree about whether engagement in ACP has occurred. In addition, there are also substantial proportions who agree that engagement in ACP has not occurred. However, the barriers to and facilitators of agreement about engagement in ACP have not been examined. Whether agreement about engagement in ACP leads to a shared understanding of the patient's treatment goals, one of the key outcomes of ACP engagement, is also unknown.
The objectives of this study are to: (a) examine quantitatively the association between older person-surrogate agreement regarding the components of ACP behavior change and agreement regarding older persons' treatment goals; (b) elucidate qualitatively the barriers to and facilitators of older person-surrogate dyads reaching agreement that they have achieved the Action/Maintenance stage of (have engaged in) ACP.
Participants will be 304 veterans age 55 and older and the person they identify as their surrogate decision maker. Dyads will undergo a quantitative telephone interview designed to identify their Stage of Change for four key ACP behaviors as well as Decisional Conflict and Values/Beliefs regarding ACP and to characterize older person-surrogate agreement regarding the older person's treatment goals, so that the relationships among these variables can be modeled. A subset of approximately 50 dyads will undergo a follow-up joint telephone open-ended interview. Content analysis of the transcripts will be conducted to develop a taxonomy of barriers to and facilitators of dyads' reaching agreement that they have engaged in ACP. In the preliminary first phase of the study, 25 dyads participated in both joint telephone and in-person interviews in order to establish the feasibility and safety of performing open-ended interviews by telephone.
Qualitative analysis: Many of the same barriers to and facilitators of ACP engagement were discussed by both the Veteran and surrogate. These included difficulty thinking about dying, difference in values, and experiences with others that demonstrated the ability of ACP to decrease burden or avoid conflict. Reasons for disagreements in perceptions about whether communication had occurred included surrogates' need for more detailed information, surrogates' lack of readiness to hear what the patient was saying, and surrogates' reliance on what they felt they knew about the patient.
Quantitative analysis: A total of 350 Veteran-surrogate pairs completed the quantitative interview. Veterans had a mean age of 66 years and 14 years of education; 36% were non-white and 32% were women. Surrogates had a mean age of 57 years; 34% were non-white and 78% were women. The most common relationship between Veteran and surrogate was spouse/partner (52%); an additional 27% of surrogates were children, and the remainder had a variety of other relationships.
Over 40% of dyads agreed that the Veteran had not completed a living will or healthcare proxy and that there was no communication about quality versus quantity of life. For each activity, sizeable numbers of dyads (18-34%) disagreed about whether participation had occurred. Agreement about participation in communication regarding quality of life was significantly associated with agreement about the Veteran's treatment goals, assessed as the Veteran and surrogate agreeing about the acceptability of three health states (severe physical disability, severe cognitive disability, and severe pain) that could result from treatment. Of Veteran-surrogate pairs who agreed that communication had occurred, 30% agreed about treatment goals; of pairs who agreed that communication had not occurred, 20% agreed about treatment goals; of pairs who disagreed about communication, 15% agreed about treatment goals (P = .01). This relationship persisted in multivariable analysis. Agreement about other ACP activities was not associated with knowledge.
The qualitative findings highlight the need to include surrogates in the process of advance care planning. Surrogates can both hinder and facilitate the Veteran's engagement. Moreover, when disagreement about participation exists, the surrogate can provide important insights into how the process may be failing to meet the surrogate's need for information about the Veteran.
The quantitative findings demonstrate that, while communication about quantity versus quality of life is associated with a greater likelihood of shared understanding of treatment goals, it is not sufficient to ensure this shared understanding. In addition, disagreement about ACP participation is a marker for dyads with the lowest likelihood of shared understanding of goals.
These observations directly informed the design of a randomized controlled trial to test different behavioral strategies in increasing ACP engagement.
- Fried TR, Niehoff KM, Street RL, Charpentier PA, Rajeevan N, Miller PL, Goldstein MK, O JR, Fenton BT. Effect of the Tool to Reduce Inappropriate Medications on Medication Communication and Deprescribing. Journal of the American Geriatrics Society. 2017 Oct 1; 65(10):2265-2271.
- Fried TR, Zenoni M, Iannone L, O'Leary J, Fenton BT. Engagement in Advance Care Planning and Surrogates' Knowledge of Patients' Treatment Goals. Journal of the American Geriatrics Society. 2017 Aug 1; 65(8):1712-1718.
- Fried T, Zenoni M, Iannone L. A Dyadic Perspective on Engagement in Advance Care Planning. Journal of the American Geriatrics Society. 2017 Jan 1; 65(1):172-178.