Karen A. Kehl

Effect of a Disease-Specific Planning Intervention on Surrogate Understanding of Patient Goals for Future Medical Treatment

OBJECTIVES: To determine whether a disease‐specific planning process can improve surrogate understanding of goals of patients with life‐limiting illnesses for future medical treatments.

Effect of a disease-specific advance care planning intervention on end-of-life care.

To compare patient preferences for end‐of‐life care with care received at the end of life.

Treatment of Terminal Restlessness

Terminal restlessness is an important issue in the management of symptoms at the end of life with between 25% and 88% of dying patients exhibiting this condition.1–5 The purpose of this review was to examine the empiric evidence about the pharmacological treatment for terminal restlessness. All available literature, in all languages, from 1966–2002 including randomized trials, concurrent observations, retrospective chart reviews, single case studies, clinical practice guidelines, expert consensus, single expert opinion articles, and editorials were reviewed as “best available evidence.” Of the 72 articles reviewed, 14 met the criteria and were chosen for analysis. Despite the majority of authors recommending neuroleptic medications as a first or second line pharmacological treatment of restlessness, a number of studies demonstrated the effectiveness of other medications such as benzodiazepines (notably midazolam and lorazepam), or phenothiazines, either alone or in combinations. There is insufficient evidence to suggest that a single medication or class of medications is appropriate for terminal restlessness. There is a clear need for additional trials of neuroleptics, benzodiazepines, barbiturates, and combination protocols to determine which protocols are the most effective and have the least side effects.

Recruiting Participants in End-of-Life Research

A great deal of time, attention, and funding has been dedicated to research concerned with improving care at the end of life. However, sizes of samples for such research are reduced by recruitment problems unique to end-of-life studies, which limits their power and generalizability. In this article, experiences are shared and suggestions are offered to increase recruitment using 4 recent studies on end-of-life topics as examples. The issues in this article include those related to participants (patients or family members) and those related to the health care providers or systems. A researcher who is forewarned about higher-than-usual rates for lack of contact, refusals, and no-shows in end-of-life research can plan appropriately for the time and effort needed during the recruitment phase of the study.

Challenges Facing Families at the End of Life in Three Settings.

This study examined the challenges faced by family members at the end of life in different care settings and how those challenges compare across settings. A total of 30 participants, who had a family member die in inpatient hospice, a skilled nursing facility, or a community support program were interviewed. Semi-structured interviews were recorded and transcribed. Text was coded using qualitative thematic analysis. Themes were determined by consensus. Twelve challenges were identified across care sites. Two themes emerged in all three settings: bearing witness and the experience of loss. The study findings contribute to our knowledge of family perceptions of care in different settings and raises awareness of the need for further research describing the experiences at the end of life in different settings and the importance of creating and testing interventions for both setting specific needs and universal issues.

Recognition and Support of Anticipatory Mourning

Anticipatory mourning is a concept that has been incorporated into common use in healthcare. Anticipatory mourning is a complex, multidimensional, and unconscious process of emotional response to the threat of loss. It shares many characteristics with after-death grief, but differs in form and duration. The research concerning the effects of anticipatory mourning or grief has been contradictory and there is no clear evidence that experiencing anticipatory mourning increases or decreases distress after the death. Interventions for family members and others close to the dying person who are experiencing anticipatory mourning include acceptance, support, and comfort from healthcare professionals, as well as clear communication about the patients condition and assurance that their family member is receiving the best care possible. Appropriate response to anticipatory mourning has the potential to facilitate appropriate grief work and make the postdeath adjustment period easier for the family. Additional research focusing on measurement and the effect of interventions is needed.

How hospice staff members prepare family caregivers for the patient’s final days of life: An exploratory study

Background: There is widespread agreement that the families of hospice patients need to be prepared for the final days of life, yet current practices preparing families are not well described. Examining the gap between family needs and current practice will inform the development of effective preparatory interventions. Aim: The purpose of the study was to describe how hospice clinicians prepare family for the final days of life, including (1) the content of the preparatory information, (2) strategies and timing of preparation, and whether the preparation is tailored, and (3) who prepares families. Design: Conventional content analysis guided this study. Individual interviews using semi-structured questions were conducted. Setting/participants: In all, 19 hospice clinicians who provided care in the home setting from two hospice agencies in the United States participated. Results: Preparatory messages included information on signs of impending death, symptoms, implications of the symptoms, what to expect next, and instructions on what to do. Commonly used strategies included listening, engendering trust, repetition, collaboration with other disciplines, and demonstrations. Staff tailored content and delivery of messages on patient, family, and hospice factors. Preparation usually occurred over time. All hospice staff provided preparatory information, but there are some differences by discipline. Conclusions: Most content previous identified as necessary for preparedness is part of the current preparation. The knowledge of the current practice in preparing families can be used to develop systematic means of assessing the factors related to timing and tailoring, which may assist in developing preparatory messages that are effective and timely.

Materials to Prepare Hospice Families for Dying in the Home

Many changes occur in the final hours of life. Family members of those dying at home need to be prepared for these changes, both to understand what is happening and to provide care. The objectives of this study were to describe (1) the written materials used by hospices to prepare families for dying in the home setting and (2) the content of such materials. Questionnaires were sent to 400 randomly selected hospices, of which 170 responded (45.3%) sending their written materials. The most frequently used publications were Gone from My Sight (n = 118 or 69.4%), Final Gifts (n = 44 or 25.9%) and Caregiving (n = 14 or 8.2%). Half (56.5%) of the hospices used other publications and a majority (n = 87 or 51.2%) used multiple publications. Materials were given to the families by nurses (78.2%) or social workers (67.6%). More than 90% of the hospices had materials that addressed the following signs of impending death: decreased fluid intake, decreased food intake, breathing pattern changes, cold extremities, mottling, increased sleeping, changes at the moment of death, audible secretions, urinary output changes, disorientation, incontinence, overall decline and restlessness. Seven signs were addressed less than 30% of the time; pain (28.2%), dyspnea (19.4%), bed-bound state (18.2%), skin changes (18.2%), vital sign changes (17.1%), surge of energy (11.8%) and mandibular breathing (5.9%). Hospice staff should know the content of the materials offered by their agency so they can verbally address the gaps between the written materials and family needs.

Hospice and Palliative Nurses Association 2015-2018 research agenda

Hospice and palliative nursing care occurs in most practice settings, at all stages of chronic illness, and for persons of all ages. Thus, the Hospice and Palliative Nurses Association (HPNA) seeks to provide direction for research by highlighting key gaps in knowledge that serve as barriers to excellent care. The 2015-2018 HPNA Research is designed to (1) provide a focus for graduate students and researchers, (2) guide research funding by the Hospice and Palliative Nurses Foundation, and (3) illustrate to other stakeholders the importance of these research foci. The agenda also begins to outline a procedure for HPNA development and endorsement of clinical practice guidelines. The resulting document has been developed for all HPNA members regardless of role: clinical, academic, or research. Hospice and Palliative Nurses Association members were asked to select from among the 8 domains of the National Consensus Project which domain encompassed the most pressing gaps in knowledge. The 2 most frequently selected domains were (1) structure and processes of care and (2) physical aspects of care. The third component of this agenda, also member driven, will focus on the process of research translation in palliative nursing. While all research in palliative care is important to patients, the 2015-2018 HPNA Research Agenda identifies specific target areas to bring focus to research efforts and highlights the importance of research translation.

Can you hear me now? The experience of a deaf family member surrounding the death of loved ones

Introduction: Individuals who are Deaf face challenges both similar and unique from those faced by hearing individuals when a family member is dying. This study was guided by the question, ‘‘What are the challenges faced by a Deaf family member when a loved one is dying?’’ Methods: This qualitative study is guided by critical theory and an interpretive perspective. Robert, a college-educated older adult who has been Deaf from birth was interviewed in American Sign Language using a death history format. Results: There are challenges for Deaf family members that affect communication with both the dying person and health care professionals. Patient-family communication issues included physical challenges and financial challenges. Lack of cultural competence concerning the Deaf community created challenges communicating with professionals. Decision-making was also a challenge. Conclusions: These findings provide a framework for future research concerning the needs of Deaf individuals facing the end of life and provide guidance for clinicians.