Palliative Medicine

Debate about appropriate and ethically acceptable end-of-life choices is ongoing, which includes discussion about the legalization of voluntary assisted dying. Given health professionals’ role in caring for patients at the end life, their stance towards assisting a person with dying can have implications for policy development and implementation in jurisdictions where law changes are being considered.

To explore end-of-life care professionals’ attitudes towards voluntary assisted dying 6 months prior to vote on legalization.

Qualitative study using textual data collected through semi-structured interviews. Purposive sampling strategy used to collect a broad representation of perspectives. Audio-recorded interviews were transcribed verbatim and subjected to qualitative descriptive analysis techniques.

A total of 16 health professionals with experience in caring for people with life-limiting illness.

Participants reported two overarching positions grounded in differing moral philosophies with compelling arguments both for and against legalization of voluntary assisted dying. A third and common line of argument emerged from areas of shared concern and uncertainty about the practical consequences of introducing voluntary assisted dying. While a diversity of opinion was evident, all participants advocated for more public education and funding into end-of-life care services to make high-quality care equitable and widely available.

Common dedication to reducing suffering and facilitating good dying experiences exists among experts despite their divergent views on voluntary assisted dying. Ongoing engagement with stakeholders is needed for practical resolution in the interest of developing health policy for best patient care.

An important concern of healthcare professionals when exploring the wish to hasten death with patients is the risk of causing them some type of distress.

To assess the opinion of hospitalized patients with advanced cancer about the proactive assessment of the wish to hasten death.

Descriptive, cross-sectional study.

We assessed 193 advanced cancer patients admitted to an oncology ward for the wish to hasten death using a semi-structured clinical interview. After the assessment the participants were surveyed to determine whether they found the interview upsetting and, if so to what extent, and also their opinion regarding the assessment’s importance.

The wish to hasten death was reported by 46 (23.8%) patients. The majority of patients (94.8%) did not find talking about the wish to hasten death to be upsetting, regardless of whether they presented it or not. The majority of patients (79.3%) considered that it was either quite or extremely important for the clinician to proactively assess the wish to hasten death and discuss this topic, regardless of whether they experienced it.

In this study, most of the advanced cancer patients did not find the assessment of wish to hasten death to be upsetting, and a substantial proportion of patients in this study believe that it is important to routinely evaluate it in this setting. These findings suggest that healthcare professionals can explore the wish to hasten death proactively in routine clinical practice without fear of upsetting patients.

Little research has explored the detail of practice when using sedative medications at the end of life. One work package of the I-CAN-CARE research programme investigates this in UK palliative care.

To investigate current practices when using sedative medication at the end of life in London, UK, by (1) qualitatively exploring the understandings of palliative care clinicians, (2) examining documented sedative use in patient records and (3) comparing findings from both investigations.

We conducted focus groups with experienced palliative care physicians and nurses, and simultaneously reviewed deceased patient records.

In total, 10 physicians and 17 senior nurses in London hospice or hospital/community palliative care took part in eight focus groups. Simultaneously, 50 patient records for people who received continuous sedation at end of life in the hospice and hospital were retrieved and reviewed.

Focus group participants all said that they used sedative medication chiefly for managing agitation or distress; selecting drugs and dosages as appropriate for patients’ individual needs; and aiming to use the lowest possible dosages for patients to be ‘comfortable’, ‘calm’ or ‘relaxed’. None used structured observational tools to assess sedative effects, strongly preferring clinical observation and judgement. The patient records’ review corroborated these qualitative findings, with the median continuous dose of midazolam administered being 10 mg/24 h (range: 0.4–69.5 mg/24 h).

Clinical practice in these London settings broadly aligns with the European Association for Palliative Care framework for using sedation at the end of life, but lacks any objective monitoring of depth of sedation. Our follow-on study explores the utility and feasibility of objectively monitoring sedation in practice.

Nursing homes are becoming a common site where delivering end-of-life care for older adults. They often represent the junction between the curative and the palliative phase.

To identify the elements that nursing home residents’ family carers perceive as good end-of-life care and develop a conceptual model of good end-of-life care according to the family perspective.

Systematic review (PROSPERO no. 95581) with meta-aggregation method.

Five electronic databases were searched from inception between April and May 2018. Published qualitative studies (and mixed-method designs) of end-of-life care experience of nursing home family carers whose relative was dead or at the end-of-life were included. No language or temporal limits were applied.

In all, 18 studies met inclusion criteria. A ‘life crisis’ often resulted in a changed need of care, and the transition towards palliative care was sustained by a ‘patient-centered environment’. Family carers described good end-of-life care as providing resident basic care and spiritual support; recognizing and treating symptoms; assuring continuity in care; respecting resident’s end-of-life wishes; offering environmental, emotional and psychosocial support; keeping family informed; promoting family understanding; and establishing a partnership with family carers by involving and guiding them in a shared decision-making. These elements improved the quality of end-of-life of both residents and their family, thus suggesting a common ground between good end-of-life care and palliative care.

The findings provide a family-driven framework to guide a sensitive and compassionate transition towards palliative care in nursing home.

Existing quantitative evidence suggests that at a population level, socioeconomic factors affect access to preferred place of death. However, the influence of individual and contextual socioeconomic factors on preferred place of death are less well understood.

To systematically synthesise the existing qualitative evidence for socioeconomic factors affecting access to preferred place of death in the United Kingdom.

A thematic synthesis of qualitative research.

Cochrane Library, MEDLINE, Embase, CINAHL, ASSIA, Scopus and PsycINFO databases were searched from inception to May 2018.

A total of 13 articles, reporting on 12 studies, were included in the synthesis. Two overarching themes were identified: ‘Human factors’ representing support networks, interactions between people and decision-making and ‘Environmental factors’, which included issues around locations and resources. Few studies directly referenced socioeconomic deprivation. The main factor affecting access to preferred place of death was social support; people with fewer informal carers were less likely to die in their preferred location. Other key findings included fluidity around the concept of home and variability in preferred place of death itself, particularly in response to crises.

There is limited UK-based qualitative research on socioeconomic factors affecting preferred place of death. Further qualitative research is needed to explore the barriers and facilitators of access to preferred place of death in socioeconomically deprived UK communities. In practice, there needs to be more widespread discussion and documentation of preferred place of death while also recognising these preferences may change as death nears or in times of crisis.

Chronic breathlessness is a neglected symptom of advanced diseases.

To examine the effect of airflow for chronic breathlessness relief.

Exploratory systematic review and meta-analysis.

Medline, CINAHL, AMED and Cochrane databases were searched (1985–2018) for observational studies or randomised controlled trials of airflow as intervention or comparator. Selection against predefined inclusion criteria, quality appraisal and data extraction was conducted by two independent reviewers with access to a third for unresolved differences. ‘Before and after’ breathlessness measures from airflow arms were analysed. Meta-analysis was carried out where possible.

In all, 16 of 78 studies (n = 929) were included: 11 randomised controlled trials of oxygen versus medical air, 4 randomised controlled trials and 1 fan cohort study. Three meta-analyses were possible: (1) Fan at rest in three studies (n = 111) offered significant benefit for breathlessness intensity (0–100 mm visual analogue scale and 0–10 numerical rating scale), mean difference −11.17 (95% confidence intervals (CI) −16.60 to −5.74), p = 0.06 I² 64%. (2) Medical air via nasal cannulae at rest in two studies (n = 89) improved breathlessness intensity (visual analogue scale), mean difference −12.0 mm, 95% CI −7.4 to −16.6, p < 0.0001 I² = 0%. (3) Medical airflow during a constant load exercise test before and after rehabilitation (n = 29) in two studies improved breathlessness intensity (modified Borg scale, 0–10), mean difference −2.9, 95% CI −3.2 to −2.7, p < 0.0001 I² = 0%.

Airflow appears to offer meaningful relief of chronic breathlessness and should be considered as an adjunct treatment in the management of breathlessness.

Building palliative care capacity among all healthcare practitioners caring for patients with chronic illnesses, who do not work in specialist palliative care services (non-specialist palliative care), is fundamental in providing more responsive and sustainable palliative care. Varying terminology such as ‘generalist’, ‘basic’ and ‘a palliative approach’ are used to describe this care but do not necessarily mean the same thing. Internationally, there are also variations between levels of palliative care which means that non-specialist palliative care may be applied inconsistently in practice because of this. Thus, a systematic exploration of the concept of non-specialist palliative care is warranted.

To advance conceptual, theoretical and operational understandings of and clarity around the concept of non-specialist palliative care.

The principle-based method of concept analysis, from the perspective of four overarching principles, such as epistemological, pragmatic, logical and linguistic, were used to analyse non-specialist palliative care.

The databases of CINAHL, PubMed, PsycINFO, The Cochrane Library and Embase were searched. Additional searches of grey literature databases, key text books, national palliative care policies and websites of chronic illness and palliative care organisations were also undertaken.

Essential attributes of non-specialist palliative care were identified but were generally poorly measured and understood in practice. This concept is strongly associated with quality of life, holism and patient-centred care, and there was blurring of roles and boundaries particularly with specialist palliative care. Non-specialist palliative care is conceptually immature, presenting a challenge for healthcare practitioners on how this clinical care may be planned, delivered and measured.

Drug use beyond the licence (off-label use, off-label drug use) is a common practice in palliative care and respective recommendations can often be identified in the literature. It is both risky and offers opportunities at the same time and, therefore, requires special attention in clinical practice.

To determine the prevalence of off-label drug use in palliative care and to identify, evaluate and critically appraise studies describing the clinical practice, healthcare professionals’ awareness, knowledge and attitudes towards off-label-use and management strategies.

Systematic literature review following the guidance of the Centre for Reviews and Dissemination.

Medline, Embase, Web of Science and Current Contents Connect were searched in July 2018 as well as hand searches. The reference lists of pertinent studies were screened for further relevant publications, and citation tracking was performed.

Eight studies met the inclusion criteria. Due to the variety in study designs and settings, no meta-analysis or meaningful statistical analysis was possible and a narrative synthesis of the data was performed. Frequency of off-label drug use ranged from 14.5% to 35%. Up to 97% of palliative care units did not have any policy or guidance on handling off-label drug use. About 20% of prescribers never obtain consent in the context of off-label use.

Off-label use is common in palliative care with up to one-third of prescriptions affected. Challenges are often related to obtaining informed consent. Little is known about the decision-making process. More information and guidance for the prescribers are needed to enable safe handling of drugs outside their licence in palliative care.

Patients with advanced chronic obstructive pulmonary disease have difficulty reporting their holistic support needs to health care professionals, undermining delivery of person-centred care. We lack tools that directly support patients with this.

To develop an evidence-based, designed-for-purpose, tool to enable patients to directly identify and express support needs to health care professionals.

Two-stage qualitative study. Stage 1: domains of support need were identified through a systematic review, analysis of an established qualitative dataset and patient/carer focus groups. Stage 2: draft tool developed using the identified domains of need and then refined through feedback from patients, carers and health care professionals, ensuring acceptability and suitability.

Stage 1 patients/carers recruited via four primary care practices and two patient support groups (East of England). Stage 2 health care professionals recruited via the Clinical Research Network and local community trust and patients/carers through two further practices and two additional support groups (East of England). In total, 57 patients, carers and health care professionals participated.

A comprehensive set of evidence-based support domains (for example: overcoming boredom or loneliness, knowing what to expect in the future) was identified and formulated into questions. The resulting tool asks patients to consider whether they need more support in 15 broad areas. Patients, carers and clinical stakeholders broadly endorsed the tool’s content and wording.

The Support Needs Approach for Patients (SNAP) tool is a concise evidence-based tool designed to help patients with advanced chronic obstructive pulmonary disease identify and express their support needs to enable delivery of person-centred care.

Strong family bonds are part of the Indonesian culture. Family members of patients with cancer are intensively involved in caring, also in hospitals. This is considered “normal”: a societal and religious obligation. The values underpinning this might influence families’ perception of it.

To explore and model experiences of family caregivers of patients with cancer in Indonesia in performing caregiving tasks.

A grounded theory approach was applied. The constant comparative method was used for data analysis and a paradigm scheme was employed for developing a theoretical model.

The study was conducted in three hospitals in Indonesia. The participants were family caregivers of patients with cancer.

A total of 24 family caregivers participated. “Belief in caregiving” appeared to be the core phenomenon. This reflects the caregivers’ conviction that providing care is an important value, which becomes the will power and source of their strength. It is a combination of spiritual and religious, value and motivation to care, and is influenced by contextual factors. It influences actions: coping mechanisms, sharing tasks, and making sacrifices. Social support influences the process of the core phenomenon and the actions of the caregivers. Both positive and negative experiences were identified.

We developed a model of family caregivers’ experiences from a country where caregiving is deeply rooted in religion and culture. The model might also be useful in other cultural contexts. Our model shows that the spiritual domain, not only for the patient but also for the family caregivers, should be structurally addressed by professional caregivers.

Ensuring palliative care for all under a new global health policy must include key populations, that is, lesbian, gay, bisexual, transgender and intersex (LGBTI) people, and sex workers. Accessibility and quality of care have not been investigated in lower and middle-income countries where civil rights are the weakest.

To examine the accessibility to, and experiences of, palliative care for key populations in Zimbabwe.

Qualitative study using thematic analysis of in-depth interviews and focus groups.

A total of 60 key population adults and 12 healthcare providers and representatives of palliative care and key population support organisations were interviewed in four sites (Harare, Bulawayo, Mutare and Masvingo/Beitbridge).

Participants described unmet needs and barriers to accessing even basic elements of palliative care. Discrimination by healthcare providers was common, exacerbated by the politico-legal-economic environment. Two dominant themes emerged: (a) minimal understanding of, and negligible access to, palliative care significantly increased the risk of painful, undignified deaths and (b) discriminatory beliefs and practices from healthcare providers, family members and the community negatively affected those living with life-limiting illness, and their wishes at the end of life. Enacted stigma from healthcare providers was a potent obstacle to quality care.

Discrimination from healthcare providers and lack of referrals to palliative care services increase the risk of morbidity, mortality and transmission of infectious diseases. Untreated conditions, exclusion from services, and minimal family and social support create unnecessary suffering. Public health programmes addressing other sexually taboo subjects may provide guidance.

Understanding current patterns of functional decline will inform patient care and has health service and resource implications.

This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis.

Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale. Segmented regression was used to identify time points prior to death associated with significant changes in the slope of functional decline for each diagnostic cohort. Sensitivity analyses explored the impact of severe symptoms and late referrals, age and sex.

In all, 115 specialist palliative care services submit prospectively collected patient data to the national Palliative Care Outcomes Collaboration across Australia. Data on 55,954 patients who died in the care of these services between 1 January 2013 and 31 December 2015 were included.

Two simplified functional decline trajectories were identified in the last 4 months of life. Trajectory 1 has an almost uniform slow decline until the last 14 days of life when function declines more rapidly. Trajectory 2 has a flatter more stable trajectory with greater functional impairment at 120 days before death, followed by a more rapid decline in the last 2 weeks of life. The most rapid rate of decline occurs in the last 2 weeks of life for all cohorts.

Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.

A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%–85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However, structured Perinatal Palliative Care programs are missing in many European countries. In Germany, parents have the right to free psychosocial support from pregnancy counseling services after the prenatal diagnosis of a life-limiting disease.

We aimed to investigate whether German professional pregnancy counselors perceive the need for structured Perinatal Palliative Care and if so, how it should be conceived.

This is a qualitative interview study with purposeful sampling. The interviews were analyzed with the coding method of Saldaña.

A total of 10 professionals from three different pregnancy counseling services participated in the study.

The main topics raised by the professionals were as follows: (1) counseling and parental support during the decision-making process; (2) fragmented or missing support infrastructure for parents; and (3) challenges, hesitations, and barriers, particularly from the different stakeholders, regarding a Perinatal Palliative Care framework. They highlighted the importance of the integration of Perinatal Palliative Care in existing structures, a multi-professional approach, continuous coordination of care and education for all healthcare providers involved.

A structured Perinatal Palliative Care program is considered as necessary by the pregnancy counselors. Future research should focus on (1) needs reported by concerned parents; (2) attitude and role of all healthcare providers involved; (3) strategies to include stakeholders in the development of Perinatal Palliative Care networks; and (4) outcome parameters for evaluation of Perinatal Palliative Care frameworks.

Awareness and pain during palliative sedation is typically assessed by observational scales, but the use of such scales has been put into question.

A woman in her mid-80s was admitted to a palliative care unit, presenting with chronic lymphatic leukemia, depression, and a cerebrovascular accident, with right-sided hemiplegia and aphasia. The patient was unable to eat and was suffering from nausea and vomiting. Before admission, the patient had expressed her desire to discontinue treatment on several occasions.

The decision was made to initiate palliative sedation. The patient consented to take part in a study to assess level of comfort and pain using two monitoring devices (NeuroSense monitor and Analgesia Nociception Index monitor).

The patient died 90 h after initiation of palliative sedation. Titration of the medication was challenging and sedation was not deep enough during the first 2 days. Thirteen assessments made with the Ramsay Sedation Scale showed that the patient was considered to be in a deep sleep, while in fact the NeuroSense monitor indicated otherwise.

This case demonstrates the feasibility and potential advantages of using monitoring devices to objectify assessments of pain and discomfort in palliatively sedated patients.