Palliative Medicine

Delirium is a serious neuropsychiatric syndrome frequently experienced by palliative care inpatients. This syndrome is under-recognized by clinicians. While screening increases recognition, it is not a routine practice.

This systematic review aims to examine methods, quality, and results of delirium prevalence and incidence studies in palliative care inpatient populations and discuss implications for delirium screening.

A systematic search of the literature identified prospective studies reporting on delirium prevalence and/or incidence in inpatient palliative care adult populations from 1980 to 2012. Papers not in English or those reporting the occurrence of symptoms not specifically identified as delirium were excluded.

Of the eight included studies, the majority (98.9%) involved participants (1079) with advanced cancer. Eight different screening and assessment tools were used. Delirium incidence ranged from 3% to 45%, while delirium prevalence varied, with a range of: 13.3%–42.3% at admission, 26%–62% during admission, and increasing to 58.8%–88% in the weeks or hours preceding death. Studies that used the Diagnostic and Statistical Manual–Fourth Edition reported higher prevalence (42%–88%) and incidence (40.2%–45%), while incidence rates were higher in studies that screened participants at least daily (32.8%–45%). Hypoactive delirium was the most prevalent delirium subtype (68%–86% of cases).

The prevalence and incidence of delirium in palliative care inpatient settings supports the need for screening. However, there is limited consensus on assessment measures or knowledge of implications of delirium screening for inpatients and families. Further research is required to develop standardized methods of delirium screening, assessment, and management that are acceptable to inpatients and families.

Non-pharmacological breathlessness management programmes have been shown to be beneficial in the management of lung cancer–related dyspnoea for more than 10 years. What is not so clear is how they work.

To evaluate how patients with intrathoracic malignancy (lung cancer or pleural mesothelioma) undergoing the non-pharmacological breathlessness management programmes benefited from the programme, using a qualitative methodology.

Consecutive patients completing the programme were invited to be interviewed (semi-structured and audio-recorded) about their experiences of the programme, what had helped them and how. Interviews were transcribed and analysed using interpretative phenomenological analysis.

Nine patients were interviewed. Seven major themes emerged, they are summarised as follows: (1) Mixed prior expectations of the programme, (2) flexibility of delivery and additional support needs, (3) physiotherapist attributes and skills in developing an effective helping relationship, (4) adoption of new techniques, (5) the effects and impact of the programme and new techniques, (6) difficulties and barriers to achieving change and (7) facing an uncertain future beyond the programme

The non-pharmacological breathlessness management programme appears to offer a wide range of benefits to patients, including improving functional capacity, coping strategies and self-control. Such benefits are most likely to be due to a combination of breathing control, activity management and the therapist qualities.

Advance care planning is considered to have an important role in the management of people with chronic lung disease; however, uptake in clinical practice remains limited. Participant acceptance of the inclusion of an advance care planning information session in pulmonary rehabilitation and maintenance programmes could support a practical solution.

To evaluate the introduction of a structured group advance care planning information session from the perspective of participants in pulmonary rehabilitation and maintenance programmes.

Prospective qualitative study with semi-structured interview transcripts analysed using iterative thematic analysis.

Participants in pulmonary rehabilitation and maintenance programmes at a tertiary metropolitan hospital and two affiliated community sites.

Sixty-seven participants with a range of chronic lung diseases were interviewed with ages ranging from 39 to 88 years, forced expiratory volume in 1 s (FEV₁) ranging from 18% to 130% predicted and 6-min walk distance ranging from 105 to 619 m. Sixteen participants (24%) had previously heard of advance care planning. Major themes were that participants valued the advance care planning information and thought pulmonary rehabilitation was an appropriate setting. The group education format was well accepted and perceived to have advantages over individual sessions. Participants were happy to receive the information from a non-medical facilitator. Non-attendees had usually missed the session for reasons unrelated to content. A small number of participants felt advance care planning was not appropriate for them, but all recognised its value for other participants.

Participants in our pulmonary rehabilitation and maintenance programmes value the opportunity to participate in a structured, group-based advance care planning session. Consideration should be given to broader inclusion of advance care planning education into existing pulmonary rehabilitation and maintenance programmes for people with chronic respiratory disease.

Non-invasive ventilation improves quality and quantity of life in patients with motor neurone disease who have respiratory failure. Use of non-invasive ventilation may, however, result in complex clinical issues for end-of-life care, with concerns as to whether and how it should be withdrawn.

This study aimed to describe carer and health professional experiences of end-of-life care of motor neurone disease patients using non-invasive ventilation.

This article reports data from qualitative interviews with family carers and professionals following the death of patients with motor neurone disease who were using non-invasive ventilation in the final phase of the disease.

Ten of the 20 patients initiated on non-invasive ventilation were using it in the end-of-life phase of their disease, with 5 using it for 24 h/day. Interviews were carried out with nine family carers and 15 professionals. Nine recurring themes were identified in the data. Both carers and health-care professionals perceived that the terminal phase of motor neurone disease was unexpectedly rapid and that this often led to unplanned interactions with the emergency services. Carers of patients who used non-invasive ventilation perceived non-invasive ventilation as aiding patient comfort and anxiety at the end of life.

The use of non-invasive ventilation was described as beneficial and was not perceived by carers or most professionals to have adversely impacted patient’s end-of-life experience. This study highlights variation in patient wishes regarding usage towards the end of life, uncertainty regarding appropriate management among professionals and the importance of disseminating end-of-life wishes.

Despite the high prevalence and impact of episodic breathlessness, information about characteristics and patterns is scarce.

To explore the experience of patients with advanced disease suffering from episodic breathlessness, in order to describe types and patterns.

Qualitative design using in-depth interviews with patients suffering from advanced stages of chronic heart failure, chronic obstructive pulmonary disease, lung cancer or motor neurone disease. As part of the interviews, patients were asked to draw a graph to illustrate typical patterns of breathlessness episodes. Interviews were tape-recorded, transcribed verbatim and analysed using Framework Analysis. The graphs were grouped according to their patterns.

Fifty-one participants (15 chronic heart failure, 14 chronic obstructive pulmonary disease, 13 lung cancer and 9 motor neurone disease) were included (mean age 68.2 years, 30 of 51 men, mean Karnofsky 63.1, mean breathlessness intensity 3.2 of 10). Five different types of episodic breathlessness were described: triggered with normal level of breathlessness, triggered with predictable response (always related to trigger level, e.g. slight exertion causes severe breathlessness), triggered with unpredictable response (not related to trigger level), non-triggered attack-like (quick onset, often severe) and wave-like (triggered or non-triggered, gradual onset). Four patterns of episodic breathlessness could be identified based on the graphs with differences regarding onset and recovery of episodes. These did not correspond with the types of breathlessness described before.

Patients with advanced disease experience clearly distinguishable types and patterns of episodic breathlessness. The understanding of these will help clinicians to tailor specific management strategies for patients who suffer from episodes of breathlessness.

Using available communication technologies, clinicians may offer timely support to family caregivers in managing symptoms in patients with advanced cancer at home.

To assess the effects of an online symptom reporting system on caregiver preparedness, physical burden, and negative mood.

A pooled analysis of two randomized trials (NCT00214162 and NCT00365963) was conducted to compare caregiver outcomes at 6 and 12 months after intervention between two randomized, unblinded groups using General Linear Mixed Modeling. Caregivers in one group (Comprehensive Health Enhancement Support System-Only) were given access to an interactive cancer communication system, the Comprehensive Health Enhancement Support System. Those in the other group (Comprehensive Health Enhancement Support System + Clinician Report) received access to Comprehensive Health Enhancement Support System plus an online symptom reporting system called the Clinician Report. Clinicians of patients in the Comprehensive Health Enhancement Support System + Clinician Report group received e-mail alerts notifying them when a symptom distress was reported over a predetermined threshold.

Dyads (n = 235) of advanced-stage lung, breast, and prostate cancer patients and their adult caregivers were recruited at five outpatient oncology clinics in the United States.

Caregivers in the Comprehensive Health Enhancement Support System + Clinician Report group reported less negative mood than those in the Comprehensive Health Enhancement Support System-Only group at both 6 months (p = 0.009) and 12 months (p = 0.004). Groups were not significantly different on caregiver preparedness or physical burden at either time point.

This study provides new evidence that by using an online symptom reporting system, caregivers may experience less emotional distress due to the Clinician Report’s timely communication of caregiving needs in symptom management to clinicians.

In the ageing population, older people are living longer with chronic diseases. Especially in the last year of life, this can result in an increased need for (complex) end-of-life care.

To study potential changes in received end-of-life care and transfers by older people during the last 3 months of life between 2000 and 2010.

A repeated survey in 2000 and 2010.

Data were collected from a sample of proxies of deceased sample members of the Longitudinal Aging Study Amsterdam in 2000 (n = 270; response = 79%) and 2010 (n = 168; response = 59%).

Compared to 2000, in 2010, older people had a significantly lower functional ability 3 months before death. Over the 10-year period, people were significantly less likely to receive no care (12% vs 39%) and more likely to receive formal home care (45% vs 15%). Older people aged over 80 years, females, and those in the 2010 sample were more likely to receive formal home and institutional care (formal home care – age > 80 years, odds ratio: 3.7, male odds ratio: 0.74, 2010 – odds ratio: 6.9; institutional care – age > 80 years, odds ratio: 11.6, male odds ratio: 0.34, 2010 – odds ratio: 2.5) than informal or no care. Regardless of the study year, older people receiving informal home care were more likely to die in hospital (odds ratio: 2.3).

Two scenarios of care in the last 3 months of life seem to arise: staying at home as long as possible with a higher chance of hospital death or living in a residential or nursing home, reducing the chance of hospital death.

According to various guidelines about continuous sedation until death, this practice can and should be clearly distinguished from euthanasia, which is legalized in Belgium.

To explore professional caregivers’ perceptions of the similarities and differences between continuous sedation until death and euthanasia.

Qualitative data were gathered through focus groups. Questions pertained to participants’ perceptions of continuous sedation. The focus groups were recorded and transcribed verbatim. Analyses were conducted by a multidisciplinary research team using constant comparison analyses.

We did four focus groups at Ghent University Hospital: two with physicians (n = 4 and n = 4) and two with nurses (n = 4 and n = 9). The participants could participate if they were ever involved in the use of continuous sedation until death.

Although the differences and similarities between continuous sedation until death and euthanasia were not specifically addressed in the questions addressed in the focus groups, it emerged as an important theme in the participants’ accounts. Many caregivers elaborated on the differences between both practices, particularly with regard to patients’ preferences and requests, decision-making and physicians’ intentions. However, some stated that the distinction between the two sometimes becomes blurred, especially when the sedating medication is increased disproportionally or when sedation is used for patients with a longer life expectancy.

The differences and similarities between continuous sedation until death and euthanasia is an issue for several Flemish professional caregivers in their care for unbearably suffering patients at the end of life. Although guidelines strictly distinguish both practices, this may not always be the case in Flemish clinical practice.

Palliative care services strive to support people to live and die well in their chosen environment, with optimal symptom control and a pattern of care supportive of laycarers. The likelihood of patients remaining at home often depends upon laycarers, who may be required to manage subcutaneous medications.

This study reports the development, trial and evaluation of a package that teaches laycarers to manage subcutaneous medications used for symptom control in home-based patients. The package was developed by palliative care stakeholders and comprises an educational session, delivered by nurses, and a range of demonstrative, audiovisual and written resources.

The package was trialled across 24 sites and was evaluated by 76 laycarers (pre- and post-use) and 53 nurses (at study completion).

Outcomes of primary interest were perceived global usefulness of the package and rated relevance of components. Laycarers and nurses rated the usefulness and relevance of the package highly – all means were above 5 on a 7-point scale. Also, laycarers were invited to comment on the package, and three focus groups for 26 nurses explored post hoc issues following package implementation.

In terms of the palliative patient’s illness trajectory, consensus was that the time for package introduction depended upon each particular clinical situation and laycarer. Nursing opinion was divided concerning whether it is safe and appropriate for laycarers to manage subcutaneous injections. Nevertheless, this study demonstrates that the package supports laycarers to manage subcutaneous medications. This has important implications for families, services and health-care systems.