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Recent Advances in Palliative Care

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A special issue of Healthcare (ISSN 2227-9032).

Deadline for manuscript submissions: closed (15 December 2018) | Viewed by 72298

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Special Issue Editors

Prof. Dr. Joanne Reid

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Guest Editor

School of Nursing and Midwifery, Queen’s University Belfast, Belfast BT9 7BL, UK
Interests: cancer; palliative care; patient and lay carer experience; mixed methods research; renal; cachexia
Special Issues, Collections and Topics in MDPI journals

Prof. Dr. Helen Noble

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Guest Editor

Medical Biology Centre, School of Nursing and Midwifery, Queen’s University, Belfast BT9 7BL, UK
Interests: mindfulness; well-being; quality of life; complimentary therapies; Palliative care; nephrology; qualitative
Special Issues, Collections and Topics in MDPI journals

Special Issue Information

Dear Colleagues,

Palliative care has traditionally been associated with cancer, but it is now widely acknowledged that palliative care is necessary to provide support to patients with any life-limiting disease, and their carers. This is reflected in policy documents and changing healthcare practice across the world. Palliative care is an approach described by the World Health Organization that aims to improve the quality of life for people who are dying and those caring for them, and relieve suffering. Palliative care is achieved by means of early identification of need, competent assessment and treatment of pain and other physical, psychosocial and spiritual distress. The introduction of palliative care is often appropriate early in the course of a disease and may be provided in addition to treatments intended to prolong life. Bereavement support for people who are grieving after death is also an integral part of palliative care.

The aim of this Special Issue:

To advocate for mental health and psychological wellbeing in people receiving palliative care and their loved ones.
To highlight holistic health outcomes of significance to those with life limiting disease.
To highlight the need for continued appropriate and integrated psychological care for people living with life limiting diseases as the end of life approaches
To provide interesting information, commentary and research on any areas related to palliative care
To provide specific learning points for multidisciplinary HCPs working in healthcare generally where palliative care is provided
To provide specific future areas for research via authors’ work.

Keywords

palliative care
life limiting disease
end of life
death and dying

Published Papers (11 papers)

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Research

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15 pages, 392 KiB

Open AccessArticle

Parental Life-Limiting Illness: What Do We Tell the Children?

by Rachel Fearnley and Jason W. Boland

Healthcare 2019, 7(1), 47; https://doi.org/10.3390/healthcare7010047 - 20 Mar 2019

Cited by 15 | Viewed by 7131

Abstract

Being diagnosed with and having a life-limiting illness is a stressful experience which is compounded when the patient has dependent children. An important aspect of the patient’s psychosocial care should include recognition that their children are also likely to experience severe stress because of the illness. However, children’s needs are often overlooked during the illness. These needs include information about the illness. Health care professionals have a significant role in supporting patients to communicate with their children. This study aims to increase our understanding of children’s experiences when a parent has a life-limiting illness by exploring bereaved children’s experiences of the support they received when their parent had a life-limiting illness, and professionals’ perspectives of the support offered to children. 7 children (aged between 9 and 24), and 16 health care professionals were interviewed about communication during parental illness. Children report needing open, clear and age appropriate conversations with parents and health care professionals to help them begin to obtain some meaning from the situation. The importance of communication is discussed, with particular reference to the role health care professionals have in supporting these conversations. Full article

(This article belongs to the Special Issue Recent Advances in Palliative Care)

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12 pages, 741 KiB

Open AccessArticle

Development and Use of the ‘SENS’-Structure to Proactively Identify Care Needs in Early Palliative Care—An Innovative Approach

by Monica C. Fliedner, Geoffrey Mitchell, Daniel Bueche, Monika Mettler, Jos M. G. A. Schols and Steffen Eychmueller

Healthcare 2019, 7(1), 32; https://doi.org/10.3390/healthcare7010032 - 20 Feb 2019

Cited by 7 | Viewed by 5488

Abstract

Anticipatory planning for end of life requires a common language for discussion among patients, families, and professionals. Studies show that early Palliative Care (PC) interventions based on a problem-oriented approach can improve quality of life, support decision-making, and optimize the timing of medical treatment and transition to hospice services. The aim of this quality-improvement project was to develop a pragmatic structure meeting all clinical settings and populations needs. Based on the Medical Research Council (MRC) framework, a literature review identifying approaches commonly used in PC was performed. In addition, more than 500 hospital-based interprofessional consultations were analyzed. Identified themes were structured and compared to published approaches. We evaluated the clinical usefulness of this structure with an online survey among professionals. The emerged ‘SENS’-structure stands for: Symptoms patients suffer from; End-of-life decisions; Network around the patient delivering care; and Support for the carer. Evaluation among professionals has confirmed that the ‘SENS’-structure covers all relevant areas for anticipatory planning in PC. ‘SENS’ is useful in guiding patient-centered PC conversations and pragmatic anticipatory planning, alongside the regular diagnosis-triggered approach in various settings. Following this approach, ‘SENS’ may facilitate systematic integration of PC in clinical practice. Depending on clearly defined outcomes, this needs to be confirmed by future randomized controlled studies. Full article

(This article belongs to the Special Issue Recent Advances in Palliative Care)

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15 pages, 1444 KiB

Open AccessFeature PaperArticle

Monitoring the Italian Home Palliative Care Services

by Gianlorenzo Scaccabarozzi, Pietro Giorgio Lovaglio, Fabrizio Limonta, Carlo Peruselli, Mariadonata Bellentani and Matteo Crippa

Healthcare 2019, 7(1), 4; https://doi.org/10.3390/healthcare7010004 - 02 Jan 2019

Cited by 12 | Viewed by 6241

Abstract

Background: In Italy, there currently is a lack of reliable and consistent data on home palliative care provided to people near death. Objectives: Monitoring the activities of the Italian Home Palliative Care Services, according to the 2014 national data collection program entitled “Observatory of Best Practices in Palliative Care” and providing process/outcome measures on a subsample (Best Practice Panel), on regulatory standards and on complete/reliable activity data. Design: A data collection web portal using two voluntary internet-based questionnaires in order to retrospectively identify the main care activity data provided within the year 2013 by Home care units. In the Best Practice Panel and International best practices, eligibility and quality measures refer to the national standards of the NL 38/2010. Setting/Subject: Home Palliative Care Services (HPCSs) that provided care from January to December 2013. Results: 118 Home care units were monitored, globally accounting for 40,955 assisted patients within the year 2013 (38,384 cancer patients); 56 (47.5% of 118) were admitted in the Best Practice Panel. Non-cancer (5%) and pediatric (0.4%) patients represented negligible percentages of frail care patients, and a majority of patients died at home (respectively nearly 75% and 80% of cancer and non-cancer patients). Conclusion: The study demonstrated the feasibility of the collection of certified data from Home care services through a web-based system. Only 80% of the facilities met the requirements provided by the Italian NL 38/2010. Moreover, the extension of the palliative care services provided to frail non-cancer and pediatric patients, affected by complex and advanced chronic conditions, is still inadequate in Italy. Full article

(This article belongs to the Special Issue Recent Advances in Palliative Care)

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11 pages, 1057 KiB

Open AccessArticle

Clinical Use of an Order Protocol for Distress in Pediatric Palliative Care

by Marc-Antoine Marquis, Lysanne Daoust, Edith Villeneuve, Thierry Ducruet, Nago Humbert and France Gauvin

Healthcare 2019, 7(1), 3; https://doi.org/10.3390/healthcare7010003 - 02 Jan 2019

Cited by 4 | Viewed by 4507

Abstract

Several children receiving palliative care experience dyspnea and pain. An order protocol for distress (OPD) is available at Sainte-Justine Hospital, aimed at alleviating respiratory distress, pain and anxiety in pediatric palliative care patients. This study evaluates the clinical use of the OPD at Sainte-Justine Hospital, through a retrospective chart review of all patients for whom the OPD was prescribed between September 2009 and September 2012. Effectiveness of the OPD was assessed using chart documentation of the patient’s symptoms, or the modified Borg scale. Safety of the OPD was evaluated by measuring the time between administration of the first medication and the patient’s death, and clinical evolution of the patient as recorded in the chart. One hundred and four (104) patients were included in the study. The OPD was administered at least once to 78 (75%) patients. A total of 350 episodes of administration occurred, mainly for respiratory distress (89%). Relief was provided in 90% of cases. The interval between administration of the first protocol and death was 17 h; the interval was longer in children with cancer compared to other illnesses (p = 0.02). Data from this study support the effectiveness and safety of using an OPD for children receiving palliative care. Full article

(This article belongs to the Special Issue Recent Advances in Palliative Care)

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14 pages, 555 KiB

Open AccessArticle

Bereaved Family Members’ Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness

by Anna O’Sullivan, Anette Alvariza, Joakim Öhlen and Cecilia Håkanson

Healthcare 2018, 6(4), 130; https://doi.org/10.3390/healthcare6040130 - 06 Nov 2018

Cited by 9 | Viewed by 5070

Abstract

Background: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking. This study explored bereaved family members’ satisfaction with care during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members. Methods: A cross-sectional survey design was used. The sample was 485 family members of individuals who died at four different hospitals in Sweden. Results: Of the participants, 78.7% rated the overall care as high. For hospice care, 87.1% reported being satisfied, 87% with the hospital care, 72.3% with district/county nurses, 65.4% with nursing homes, 62.1% with specialized home care, and 59.6% with general practitioners (GPs). Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person had a higher educational attainment and a length of illness before death of one year or longer. Conclusion: The type of care, diagnoses, length of illness, educational attainment, and the relationship between the deceased person and the family member influences the satisfaction with care. Full article

(This article belongs to the Special Issue Recent Advances in Palliative Care)

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13 pages, 1082 KiB

Open AccessArticle

Academic Palliative Care Research in Portugal: Are We on the Right Track?

by Alexandra Pereira, Amélia Ferreira and José Martins

Healthcare 2018, 6(3), 97; https://doi.org/10.3390/healthcare6030097 - 12 Aug 2018

Cited by 4 | Viewed by 3956

Abstract

Background: The narrow link between practice, education, and research is essential to palliative care development. In Portugal, academic postgraduate publications are the main booster for palliative care research. Methods: This is a bibliometric study that aims to identify Portuguese palliative care postgraduate academic work published in electronic academic repositories between 2000 and 2015. Results: 488 publications were identified. The number of publications has increased, especially in the last five years. The most frequently used method was quantitative, healthcare professionals were the most studied participants, and psychological and psychiatric aspects of care comprised the most current theme. Practice-based priorities are financial costs and benefits of palliative care, awareness and understanding of palliative care, underserved populations, best practices, communication, and palliative care in nonhospital settings. Conclusion: The number of palliative care postgraduate academic publications has increased in Portugal in the past few years. There is academic production in the eight domains of quality palliative care and on the three levels of recommendation for practice-based research priorities. The major research gaps in Portugal are at the system and societal context levels. Full article

(This article belongs to the Special Issue Recent Advances in Palliative Care)

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12 pages, 215 KiB

Open AccessArticle

Conversations about Death and Dying with Older People: An Ethnographic Study in Nursing Homes

by Åsa Alftberg, Gerd Ahlström, Per Nilsen, Lina Behm, Anna Sandgren, Eva Benzein, Birgitta Wallerstedt and Birgit H. Rasmussen

Healthcare 2018, 6(2), 63; https://doi.org/10.3390/healthcare6020063 - 14 Jun 2018

Cited by 27 | Viewed by 10062

Abstract

Nursing homes are often places where older persons “come to die.” Despite this, death and dying are seldom articulated or talked about. The aim of this study was to explore assistant nurses’ experiences of conversations about death and dying with nursing home residents. This study is part of an implementation project through a knowledge-based educational intervention based on palliative care principles. An ethnographic study design was applied in seven nursing homes, where eight assistant nurses were interviewed and followed in their daily assignments through participant observations. The assistant nurses stated that they had the knowledge and tools to conduct such conversations, even though they lacked the time and felt that emotional strain could be a hinder for conversations about death and dying. The assistant nurses used the strategies of distracting, comforting, and disregarding either when they perceived that residents’ reflections on death and dying were part of their illness and disease or when there was a lack of alignment between the residents’ contemplations and the concept of dying well. They indicated that ambivalence and ambiguity toward conversations about death and dying should be taken into consideration in future implementations of knowledge-based palliative care that take place in nursing homes after this project is finalized. Full article

(This article belongs to the Special Issue Recent Advances in Palliative Care)

16 pages, 269 KiB

Open AccessArticle

Striking a Balance: A Qualitative Study of Next of Kin Participation in the Care of Older Persons in Nursing Homes in Sweden

by Birgitta Wallerstedt, Lina Behm, Åsa Alftberg, Anna Sandgren, Eva Benzein, Per Nilsen and Gerd Ahlström

Healthcare 2018, 6(2), 46; https://doi.org/10.3390/healthcare6020046 - 11 May 2018

Cited by 16 | Viewed by 5399

Abstract

Most of the care in nursing homes is palliative in nature, as it is the oldest and the frailest people who live in nursing homes. The aim of this study was to explore next of kin’s experiences of participating in the care of older persons at nursing homes. A qualitative design was used, based on semi-structured interviews with 40 next of kin, and analyzed using qualitative content analysis. An overarching theme emerged, a balancing act consisting of three categories: (1) visiting the nursing home; (2) building and maintaining relationships; and (3) gathering and conveying information. The next of kin have to balance their own responsibility for the older person’s wellbeing by taking part in their care and their need to leave the responsibility to the staff due to critical health conditions. The next of kin wanted to participate in care meetings and conversations, not only in practical issues. The findings indicate the need to improve the next of kin’s participation in the care as an equal partner. Increased knowledge about palliative care and decision-making of limiting life-prolonging treatment may lead to a higher quality of care. Full article

(This article belongs to the Special Issue Recent Advances in Palliative Care)

Review

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17 pages, 976 KiB

Open AccessReview

The Role of Palliative Care in the Cardiac Intensive Care Unit

by Massimo Romano’

Healthcare 2019, 7(1), 30; https://doi.org/10.3390/healthcare7010030 - 19 Feb 2019

Cited by 15 | Viewed by 6475

Abstract

In the last few years, important changes have occurred in the clinical and epidemiological characteristics of patients that were admitted to cardiac intensive care units (CICU). Care has shifted from acute coronary syndrome patients towards elderly patients, with a high prevalence of non-ischemic cardiovascular diseases and a high burden of non-cardiovascular comorbid conditions: both increase the susceptibility of patients to developing life-threatening critical conditions. These conditions are associated with a significant symptom burden and mortality rate and an increased length of stay. In this context, palliative care programs, including withholding/withdrawing life support treatments or the deactivation of implanted cardiac devices, are frequently needed, according to the specific guidelines of scientific societies. However, the implementation of these recommendations in clinical practice is still inconsistent. In this review, we analyze the reasons for this gap and the main cultural changes that are required to improve the care of patients with advanced illness. Full article

(This article belongs to the Special Issue Recent Advances in Palliative Care)

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10 pages, 532 KiB

Open AccessReview

The Development of Pathways in Palliative Medicine: Definition, Models, Cost and Quality Impact

by Laura Finn and Sonia Malhotra

Healthcare 2019, 7(1), 22; https://doi.org/10.3390/healthcare7010022 - 01 Feb 2019

Cited by 12 | Viewed by 8343

Abstract

Palliative Care and its medical subspecialty, known as Palliative Medicine, is the care of anyone with a serious illness. This emerging field includes Hospice and comfort care, however, it is not limited to end-of-life care. Examples of the types of serious illness that Palliative Medicine clinicians care for include and are not limited to hematologic and oncologic diseases, such as cancer, advanced heart and lung diseases (e.g., congestive heart failure and chronic obstructive pulmonary disorder), advanced liver and kidney diseases, and advanced neurologic illnesses (e.g., Alzheimer’s and Parkinson’s disease). In the past decade, there has been tremendous growth of Palliative Medicine programs across the country. As the population of patients with serious illnesses increases, there is growing concentration on quality of care, including symptom management, meeting patients’ goals regarding their medical care and providing various types of support, all of which are provided by Palliative Medicine. In this review article we define Palliative Medicine, describe care pathways and their applicability to Palliative Medicine, identify different models for Palliative Care and provide evidence for its impact on cost and quality of care. Full article

(This article belongs to the Special Issue Recent Advances in Palliative Care)

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12 pages, 672 KiB

Open AccessReview

Last Aid Course. An Education For All Citizens and an Ingredient of Compassionate Communities

by Georg Bollig, Frans Brandt, Marius Ciurlionis and Boris Knopf

Healthcare 2019, 7(1), 19; https://doi.org/10.3390/healthcare7010019 - 28 Jan 2019

Cited by 25 | Viewed by 7910

Abstract

Due to demographic changes, the need for palliative care in the community and at home is expected to rise in the coming years. The care that is given by family members and general practitioners plays a vital role in basic palliative care. Knowledge in palliative care is very limited or totally absent in most communities, and information about the effects of educational procedures in teaching non-professionals in basic palliative care is sparse. In the Last Aid course, the public knowledge approach and the initial experiences from the implementation process are described. In addition, a review of the literature on educational efforts regarding palliative care for non-professionals and the existing literature on Last Aid courses is provided. An international working group has established a curriculum for Last Aid courses based on four teaching hours (45 minutes each). The feasibility of Last Aid courses for the public has been tested in pilot courses. The experiences with Last Aid courses in different countries are overall very positive. Last Aid courses are well-attended. The evaluation of questionnaires in a German pilot study has shown a favorable response. Last Aid courses may form the educational basis of compassionate communities, and are well-suited to inform the public about palliative care and end-of-life care. Full article

(This article belongs to the Special Issue Recent Advances in Palliative Care)

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