Mary Ann Meeker

The Effectiveness of Interventions to Increase Advance Directive Completion Rates

Objectives: Despite federal and state laws governing advance directives (ADs), interventions to increase rates of legally completed ADs have not produced significant results. This study synthesizes the state of the science regarding effectiveness of interventions to increase AD completion rates. Methods: Garrards method for conducting a systematic literature review was followed. In all, 25 studies meeting inclusion criteria were reviewed. Interventions fell into two types: (a) didactic—information distributed through an educational program or clinical encounter or by a mailing and (b) interactive—person-to-person interaction where participants had the opportunity to ask questions and/or receive assistance completing the forms. Results: Postintervention rates of AD completion were: didactic = no change to 34% increase; interactive = 23% to 71% increase. Discussion: Education without the ability to ask questions does not significantly increase the AD completion rate. Didactic interventions did not usually increase completion rates higher than the predicted average rate for the general population.

Family Surrogate Decision Making at the End of Life: Seeing them Through with Care and Respect

Family surrogate decision makers are pivotal in end-of-life decision-making processes. The author investigated decision-making experiences of 20 surrogates who assisted terminally ill family members for this grounded theory study. Findings describe a basic social process of Seeing Them Through With Care and Respect, during which surrogates continuously synthesized the core values of caring for their family member and respecting their family member’s autonomy. Surrogate narratives began with Learning the Diagnosis. The major categories of surrogate decision makers’ activities during the process were Standing With and Acting For the ill family member. Events reported in two gating categories, Brokering Information and Working With Family, facilitated or impeded decision making. A final category, Outcomes, reports consequences for the surrogate of having been a decision maker.

Family Caregivers and Cancer Pain Management: A Review

Due to the critical role of family caregivers in cancer pain management, this systematic review was undertaken to examine what is known about of their experiences and needs. Searches were conducted using electronic databases, and research reports from 1991 to 2007 were analyzed using a matrix method. Family caregivers were actively engaged in assisting with pain management and experienced significant needs and concerns related to this role. Myths and fears about opioid use remain widespread across cultures studied and across care settings. Family caregivers need education about pain management, training in problem-solving skills, and recognition from providers about their role in pain management. When clinicians better understand and respond to the needs of the family caregivers, they can enhance the quality of life and care outcomes for both patients and their caregivers.

Oncology nurses' knowledge, attitudes, and experiences regarding advance directives

PURPOSE/OBJECTIVESnTo determine oncology nurses knowledge of, attitudes toward, and experiences with advance directives (ADs).nnnDESIGNnDescriptive, correlation survey.nnnSAMPLEnUsable responses from 794 (21% return) of 3,840 randomly selected members of the Oncology Nursing Society. The typical respondent was female, Caucasian, married or living as married, middle-aged, and Christian.nnnMETHODSnA mailed survey using the Knowledge, Attitudinal, and Experiential Survey on Advance Directives instrument.nnnMAIN RESEARCH VARIABLESnKnowledge, attitudes, experiences, confidence, and ADs.nnnFINDINGSnOverall, oncology nurses were most knowledgeable about ADs in general (70% correct) and less knowledgeable about the Patient Self-Determination Act (51% correct) and their state laws (53% correct). The mean total knowledge score based on the three subscales was 17.4 out of a possible 30, or 58% correct. The nurses experience with ADs was measured using a five-item subscale with a mean score of 4 (SD = 1.11). They were less confident in their ability to assist patients with completing ADs. Respondent attitudes reflected an advocacy role in end-of-life decisions. Attitude items were reviewed individually. Respondents strongly agreed (97%) with the statement that patients should receive sufficient medication to relieve pain even though it may hasten death, which reflects the emphasis in oncology on adequate pain management at the end of life.nnnCONCLUSIONSnNurses knowledge scores were low. Nurses in the study were not highly confident in their ability to assist patients with ADs. Demographic variables generally did not influence knowledge, confidence, or experience scores.nnnIMPLICATIONS FOR NURSINGnMore education related to ADs is needed and could be administered through in-service classes or continuing education. Nurses responses indicated that they need more time to assist patients with completing ADs. This is difficult in the current practice environment but must be recognized as critically important.

Voices of oncology nurses: What is needed to assist patients with advance directives.

The process of completing and executing advance directives (ADs) is not without problems and issues that need to be studied. Nurses, by the nature of their practice, are in a unique position to help patients complete ADs. The findings reported in this article focus on an open-ended question that was part of a larger quantitative survey. The open-ended question, “What do oncology nurses need to increase their ability to assist patients with ADs?” was asked of a random sample of Oncology Nursing Society members. The Knowledge, Attitudinal, Experiential Survey on Advance Directives instrument was used to survey a random sample of oncology nurses in four states: California, Illinois, New York, and Texas. Of the 900 nurses who responded to the survey, 677 (75%) wrote responses to the open-ended question. Grounded theory was used to analyze data to establish and saturate categories. The four topics discussed most often by the nurses were time, education, support, and the nurse’s role. Nurses also wrote about philosophical issues related to dying, end-of-life issues, and ADs, as well as institutional issues that have an impact on the assistance they can give patients completing ADs. In addition, the category “communicating” was frequently discussed by nurses. The importance of communication was a thread woven throughout their responses.

Communication and advanced care planning in palliative and end-of-life care

Communication about and planning for the end of life has evolved with medical and technological changes. This article presents a focused literature review of Advance Directives (ADs), Advanced Care Planning (ACP), and communication in palliative and end-of-life care. Two focused Medline searches were conducted to locate articles that addressed ACP in the U.S. Content analysis was utilized to summarize and categorize the literature into five domains: (1) ADs, (2) ACP and communication, (3) Barriers to ACP, (4) Differential domains of ACP, and (5) Interventions to enhance the process. Policies and protocols for ACP and communication have been developed to facilitate the process in different patient populations and locations of care. Effective ACP is an essential component of person-centered end-of-life and palliative care.

A Voice for the Dying

Secondary analysis of data collected for a grounded theory study of family surrogate decision-making processes at the end of life was undertaken to describe participants’ perceptions of the needs of family decision makers as expressed through their advice to others. Data were analyzed using the constant comparative method of grounded theory, resulting in identification of the major categories and their properties describing surrogates’ recommendations. The entire data set (approximately 22 hours of audiotaped narrative data collected from persons who had functioned as surrogates during the terminal phase of a family member’s cancer) was newly analyzed for the secondary analysis. All participants experienced the role as very demanding. Those who were able to see that another’s wishes were honored experienced satisfaction. Advice from experienced surrogates offers nurses both direct guidance to help them meet surrogates’ needs and insight to assist them in coaching surrogates in the performance of this critical role.

Hospice Decision Making: Diagnosis Makes a Difference

PURPOSEnThis study explored the process of decision making about hospice enrollment and identified factors that influence the timing of that decision.nnnMETHODSnThis study employed an exploratory, descriptive, cross-sectional design and was conducted using qualitative methods. In-depth in-person semistructured interviews were conducted with 36 hospice patients and 55 caregivers after 2 weeks of hospice care. The study was guided by Janis and Manns conflict theory model (CTM) of decision making. Qualitative data analysis involved a directed content analysis using concepts from the CTM.nnnRESULTSnA model of hospice enrollment decision making is presented. Concepts from the CTM (appraisal, surveying and weighing the alternatives, deliberations, adherence) were used as an organizing framework to illustrate the dynamics. Distinct differences were found by diagnosis (cancer vs. other chronic illness, e.g., heart and lung diseases) during the pre-encounter phase or before the hospice referral but no differences emerged during the post-encounter phase.nnnIMPLICATIONSnDifferences in decision making by diagnosis suggest the need for research about effective means for tailored communication in end-of-life decision making by type of illness. Recognition that decision making about hospice admission varies is important for clinicians who aim to provide person-centered and family-focused care.

Metasynthesis: withdrawing life-sustaining treatments: the experience of family decision-makers.

AIMnThe present study was undertaken to synthesise findings from qualitative investigations of family participation in decisions to withdraw and/or withhold life-sustaining treatment from a seriously ill family member.nnnBACKGROUNDnAs a consequence of increasing effectiveness and sophistication of available medical interventions, death is commonly preceded by a decision to withdraw or withhold potentially life-sustaining treatments. These decisions take place in a bioethical context characterised by the pre-eminence of self-determination, but patients are typically too ill to make their own decisions. Thus, family members are called upon to participate in these morally consequential decisions on the patients behalf.nnnDESIGNnMetasynthesis.nnnMETHODnMetasynthesis is a form of inquiry that provides for integration of qualitative studies findings to strengthen knowledge for practice and advance theoretical development. This metasynthesis was conducted using the constant comparative methods of grounded theory.nnnRESULTSnFamily members engage in a process of participation in decision-making that is comprised of three major categories: reframing reality, relating and integrating. Surrogates used both cues and information as they reframed their understanding of the patients status. Relationships with providers and with other family members powerfully influenced the decision-making process. Integrating was characterised by reconciling and going forward. This part of the process has both intrapersonal and interpersonal aspects and describes how family decision-makers find meaning in their experience and move forward in their lives.nnnCONCLUSIONSnThis synthesis provides a more comprehensive and empirically supported understanding of family members experiences as they participate in treatment decisions for dying family members. Relevance to clinical practice. This metasynthesis provides evidence to improve family care during treatment withdrawal/withholding decision-making and a theoretical model that can be used to guide creation of clinical practice guidelines. Through increased understanding of family members experiences, clinicians can more effectively support family decision-making processes.

Constituting Advance Directives From the Perspective of People With Chronic Illnesses

The purpose of this study was to investigate end-of-life decision making from the perspective of people with chronic illness concerning the completion of advance directives (ADs), the meaning of ADs for them, and their experiences with, attitudes toward, and perceived needs related to ADs. The sample included 76 people with varying chronic illnesses, recruited from 16 different support groups representing 10 different chronic illnesses. Data were collected via 23 individual interviews and nine focus groups. The findings consisted of a Basic Social Process, Constituting AD, which comprised four major categories: learning about ADs, interacting with the healthcare system, barriers related to AD completion, and triggering stiles. The findings illustrated that people with chronic illnesses do not have a good understanding of ADs. Healthcare proxy was a mechanism that was easier to understand than living wills. Future intervention studies should focus on mechanisms to help individuals understand and complete ADs in a way that does not depend on a healthcare provider initiating the process.