paywalled: Conveying empathy to hospice family caregivers: Team responses to caregiver empathic communication

Conveying empathy to hospice family caregivers: Team responses to caregiver empathic communication: Publication year: 2012

Source: Patient Education and Counseling

Objective The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members.

Methods Empathic opportunities and hospice team responses were analyzed from bi-weekly web-based videoconferences between family caregivers and hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data.

Results Data analysis identified 270 empathic opportunity-team response sequences. Caregivers expressed statements of emotion and decline most frequently. Two-thirds of the hospice team responses were implicit acknowledgments of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities.

Conclusion Although hospice team members frequently express emotional concerns with family caregivers during one-on-one visits, there is a need for more empathic communication during team meetings that involve caregivers.

Practice implications Hospice clinicians should devote more time to discussing emotional issues with patients and their families to enhance patient-centered hospice care. Further consideration should be given to training clinicians to empathize with patients and family caregivers.

End-of-life care: the neglected core business of medicine : The Lancet

End-of-life care: the neglected core business of medicine : The Lancet

abstract: American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care into Standard Oncology Care

American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care into Standard Oncology Care

Abstract

Purpose 

An American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) offers timely clinical direction to ASCO's membership following publication or presentation of potentially practice-changing data from major studies. This PCO addresses the integration of palliative care services into standard oncology practice at the time a person is diagnosed with metastatic or advanced cancer. 

Clinical Context 

Palliative care is frequently misconstrued as synonymous with end-of-life care. Palliative care is focused on the relief of suffering, in all of its dimensions, throughout the course of a patient's illness. Although the use of hospice and other palliative care services at the end of life has increased, many patients are enrolled in hospice less than 3 weeks before their death, which limits the benefit they may gain from these services. By potentially improving quality of life (QOL), cost of care, and even survival in patients with metastatic cancer, palliative care has increasing relevance for the care of patients with cancer. Until recently, data from randomized controlled trials (RCTs) demonstrating the benefits of palliative care in patients with metastatic cancer who are also receiving standard oncology care have not been available.

abstract: Radiation Oncology Quality: Aggressiveness of Cancer Care Near the End of Life

Radiation Oncology Quality: Aggressiveness of Cancer Care Near the End of Life


Purpose
Quality in cancer care is an issue that has come to the forefront over the past decade. Although the American Society of Clinical Oncology has developed extensive quality metrics and goals, such as limiting chemotherapy being provided within the last 14 days of a patient's life, there are no similar quality metrics, and few data, in the field of radiation oncology.


Methods
In this study, morbidity and mortality records from 2008 to 2011 were reviewed for patients at Indiana University who received radiation therapy (RT) within 30 days of death; 63 patients met those criteria.


Results
Analysis showed that 22.2% of patients had Karnofsky Performance Status Scale scores >80, whereas 66.7% of patients had scores < 60. Just over half of patients (52%) were still on treatment at death, and more than half of patients (54%) had completed less than half of their original RT plans. Six patients had their final treatments on the days of their deaths, and another 43 patients had their last treatments within 10 days of death. Forty-eight percent of patients received RT for less than one-fifth of their final month of life and 21% for more than half of their last month alive.


Conclusions
These data are valuable in ongoing discussions of RT use at the end of life, especially as related to hospice underutilization.

Karolinska Institutet - Complexities in caregiving at the end of life (re: PLOS study)

"...The study indicates three key areas that are sometimes overlooked in palliative care, namely bodily care and contact, a secure, aesthetic and comfortable environment, and death-related rituals.
“The caregivers described different kinds of communication with patients and relatives, from the giving of advice to communication through non-verbal, physical contact,” says Dr Lindqvist. “Rituals surrounding dying and death were not only spiritual or religious but also more subtly existential, legal and professional. One field that has been largely ignored by research is sensory aspects of the caring environment, both at home and in in-patient settings.”
The study also shows that non-pharmacological palliative care is based on a number of complex and sophisticated decisions on the part of the caregiver regarding not only what can be done or should not be done, but also when, how and why to whom. This differs from the traditional understanding of non-pharmacological palliative care as ‘basic’...."

open access: PLoS Medicine: Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study including Editorial Summary

including:

Editors' Summary Top

Background

End-of-life care is a major public health issue, yet despite the inevitability of death, issues related to death and dying are often taboo, and, if mentioned, are often referred to as “palliative care.” There are detailed definitions of palliative care, but in essence, the purpose of palliative care is to relieve any suffering in patients who are dying from progressive illness and to provide the best possible quality of life for both the patient and his or her family. In order to achieve this aim, both pharmacological and non-pharmacological management is necessary, with the latter taking a central role. Recently, a European Commission Seventh Framework Programme project, OPCARE9, aimed to improve the care of dying patients in Europe and beyond by optimizing research and clinical care for patients with cancer in the last days of their life, especially regarding well-being and comfort as death becomes imminent.

Why Was This Study Done?

There is now a growing literature base in non-pharmacological management at the end of an individual's life, particularly in relation to psychological, ethical, and communication issues as well as family-focused and culturally appropriate care. Despite this progress, there is currently little systematic knowledge in how health workers use such non-pharmacological approaches in their efforts to maximize well-being and comfort in patients experiencing their very last days of life. Therefore, in order to advance knowledge in this important clinical area, in this study the researchers reviewed and identified the variety of non-pharmacological caregiving activities performed by different professionals in the last days and hours of life for patients with cancer (and their families) in palliative care settings in the countries that participated in OPCARE9.

What Did the Researchers Do and Find?

End-of-life care is complex but aims to provide care and comfort

"...They add: "This adaptation is accomplished by using knowledge about and respect for the person as an individual with a life history lived in a particular context, that is the person is not viewed only as a dying patient.""

Editorial: Full-text - For a Modern Concept of Palliative Care

"Unfortunately, in most countries hospice care addresses end-of-life care."

"....This late referral to palliative care is also in contrast with the classical definition of palliative care provided by WHO: “Palliative care is ….. applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications” [6]. "

abstract: Palliative Medicine Fellowship: A Study of Resident Choices

Context

There are no data on the motives or characteristics of physicians choosing fellowship training in Hospice and Palliative Medicine (HPM).

Objectives

To understand more about the residents who choose HPM and what leads them to this decision.

Conclusion

Negative experiences with end-of-life care in residency, particularly in the intensive care unit, continue to be a factor in selection of HPM as a specialty. Many residents make their decision to enter the field and apply during Postgraduate Year 3. Most received negative comments about the choice. Fellows require a broad range of experience when selecting a fellowship program.

End-of-Life Care for Advanced Lung Cancer Differs Markedly Between U.S. and Ontario

Note: study on lung cancer but pertinent for all cancer patients/families

Even more important, he writes, patient preferences vary from one individual to another and these preferences are often unheard: “Quality in end-of-life care will continue to elude us if we assume that societal average preferences indicate the care individual patients want and need,” he writes.

Search Results: palliative vs hospice 2011 ASCO Abstractsts

Find ALL words: palliative vs hospice

Found 35 documents, showing

video/text: Palliative Medicine: Care versus Cure? Dr Diane Meier/ Richard Heffner's Open Mind - dialogue (U.S.)

AIR DATE: 2/26/2011

Association Between a Name Change from Palliative to Supportive Care and the Timing of Patient Referrals -- The Oncologist

"....Because of the nature of our institution as a comprehensive cancer center
with a large patient volume, the results might not be generalizable to smaller cancer centers and oncology programs in other areas. However, the findings 
of our study regarding a higher overall number of referrals and earlier
referrals in the outpatient setting confirm the findings of our previous
survey study on the attitudes and beliefs of medical oncologists and
midlevel providers regarding the term palliative care. We believe
that these findings and the difference in referral pattern after the
name change are not center specific but rather reflect perceptions
among health care professionals in the U.S. regarding the strong
associations among palliative care, hospice, and end of life."


Conclusion The name change to supportive care was associated with more inpatient referrals and earlier referrals in the outpatient setting. The outpatient setting facilitates earlier access to supportive/palliative care and should be established in more centers.

Hospice enrollment for terminally ill patients with gynecologic malignancies: Impact on outcomes and interventions (abstract)

Objective 

To determine survival and interventions for patients with non-curative gynecologic malignancies based on supportive care enrollment.

  
Conclusions
While retrospective reviews evaluating hospice are challenging, our data suggest no detrimental impact on survival for hospice patients. Continued evaluation for patients at the end-of-life is necessary in order to optimize resource utilization.

Attitudes towards weight and weight assessment in oncology patients: survey of hospice staff and patients with advanced cancer — Palliat Med

"...A little over half of hospice staff, 81/146 (56%) considered that weighing could cause patients to be upset.
However, 124/129 (96%) of patients with advanced cancer reported that they had never found the experience of being weighed in a healthcare facility upsetting.
Some 95/129 (74%) of patients weighed themselves at home and 89% would want to know if their weight was changing.
While there is reluctance on the part of many hospice staff to weigh patients, most patients with advanced malignancy in the hospital setting do not report weight measurement to be upsetting."

Hospice enrollment for terminally ill patients with gynecologic malignancies: Impact on outcomes and interventions

CONCLUSIONS: While retrospective reviews evaluating hospice are challenging, our data suggest no detrimental impact on survival for hospice patients (vs non hospice). Continued evaluation for patients at the end-of-life is necessary in order to optimize resource utilization.

Abstract/full free access: Tracking the evolution of hospice palliative care in Canada: A comparative case study analysis of seven provinces

'The worst thing about hospice is that they talk about death': contrasting hospice decisions and experience among immigrant Central and South American Latinos with US-born White, non-Latino cancer caregivers

Abstract:
Hospice care is promoted as a model for improving end of life care and decreasing burden on caregivers. However, hospice use is low in Latinos and little is known about how Latinos make hospice decisions and experience hospice once enrolled. Qualitative methods were used in this study to conduct in-depth interviews and focus groups with 15 Latino bereaved hospice family caregivers and 15 White non-Latino bereaved hospice family caregivers to describe hospice experiences and evaluate whether cultural factors affected the experience. Differences in decision-making and caregiving experience were identified that were influenced by culture. For example, cultural values of denial, secrecy about prognosis and a collective, family-centered system influenced hospice decisions and experience in Latinos but not non-Latinos. This study identifies a significant dilemma: that is, how to discuss hospice with a patient and family who prefer not to discuss a terminal prognosis. Future research is needed to extend these preliminary results; such results may be useful for designing interventions to improve end of life care and caregiving in Latinos.

Impact of caregivers’ unmet needs for supportive care on quality of terminal cancer care delivered and caregiver’s workforce performance

Conclusions
Caregivers’ unmet needs negatively affected both the quality of EOL care they delivered and their workplace performance. More investment in caregiver support and public policies that meet caregiver needs are needed, and hospice use should be encouraged.

Urgent notice: Ovarian Cancer woman needs help - pls respond Vancouver, BC

An ovarian cancer woman is being discharged to home hospice care, however, her wishes are to die within an institutional complex hospice care facility. Physician hospice support would be required. Apparently these services are not available for patients/people with complex care. IF you can assist with these system issues please respond in an urgent manner.