Quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients

Anneke Ullrich et. al. Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients BMC Palliative Care. Published online 10 May 2017.

Background

This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey.

Methods

During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient’s admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions.

Results

FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for “bodily pain”, FCs’ quality of life (SF-8) was impaired in all subscales. Most FCs (96%) reported clinically significant own distress (DT), with sadness, sorrows and exhaustion being the most distressing problems (80–83%). Moderate to severe anxiety (GAD-7) and depression (PHQ-9) were prevalent in 43% and 41% of FCs, respectively. FCs scored a mean number of 16.3 of 20 needs (FIN) as very or extremely important (SD 3.3), 20% of needs were unmet in >50% of FCs. The mean POS score assessed by FCs was 16.6 (SD 5.0) and satisfaction (FAMCARE-2) was high (73.4; SD 8.3).

Conclusions

This pilot study demonstrated feasibility of the questionnaire survey and showed relevant psychosocial burden and unmet needs in FCs during SIPC. However, FCs’ satisfaction with SIPC seemed to be high.

Full document available here

Advertisements

Continuous deep sedation until death & healthcare professionals’ emotional well-being

Ziegler, S. et al. BMC Palliative Care | Published online: 8 May 2017

head-1965678_960_720.jpg

Background: The practice of continuous deep sedation is a challenging clinical intervention with demanding clinical and ethical decision-making. Though current research indicates that healthcare professionals’ involvement in such decisions is associated with emotional stress, little is known about sedation-related emotional burden. This study aims to systematically review the evidence on the impact of the inpatient practice of continuous deep sedation until death on healthcare professionals’ emotional well-being.

 

Conclusions: Current evidence does not suggest that practicing continuous deep sedation is generally associated with lower emotional well-being of healthcare professionals. Higher emotional burden seems more likely when professionals struggled with clinical and ethical justifications for continuous deep sedation. This appeared to be in part a function of clinical experience. Further research is needed to strengthen this evidence, as it is likely that additional studies will change the current evidence base.

Read the full article here

Palliative care clinicians’ knowledge of the law regarding the use of the Deprivation of Liberty Safeguards (DoLS)

Barry, C. et al. BMJ Supportive & Palliative Care | Published Online: 24 April 2017

Objectives: To examine palliative care clinicians’ level of knowledge of the law regarding the use of the Deprivation of Liberty Safeguards (DoLS).

Conclusions: Clinicians working in palliative care have good levels of knowledge of the DoLS. Despite this concerns were raised, particularly by consultants; uncertainty as to when they should be used and the relevance of the Safeguards in clinical practice. Further guidance should be given to clinicians working in this specialty to ensure that clinical practice is both lawful and in the patients’ best interests.

Read the full article here

Preparing future doctors for palliative care

Walker, S. et al. BMJ Supportive & Palliative Care | Published Online: 21 April 2017

classroom-1699745_960_720

Background: Effective training at medical school is essential to prepare new doctors to safely manage patients with palliative care (PC) and end of life care (EOLC) needs. The contribution of undergraduate PC course organisers is central but their collective views regarding role are unknown.

Objective: To survey attitudes of PC course organisers regarding their course, organisation, the adequacy of training provided and level of personal satisfaction.

Conclusions: Approximately two-thirds of organisers were generally positive about their PC course, institution and role. A minority expressed concerns; these may reflect suboptimal PC training at their medical school and poor preparation of new doctors.

Read the full article here

Music therapy in improving the quality of life of palliative care patients: does it work?

Despite recent advances in medicine, patients with advanced illness continue to report high rates of suffering due to psychoexistential concerns such as loss of function, meaninglessness and anxieties in relation to death and dying | BMJ Evidence-Based Nursing blog

record-336626_960_720.jpg

Palliative care recognises the ‘total pain’ experienced by end-of-life patients and supports the use of adjunct complementary therapies to address aspects of patient suffering still outside the remit of medical science and technology.

Music therapy is frequently used as a palliative therapy and entails the use of music to achieve individual goals in the context of a therapeutic relationship with a professional music therapist. Aligning with the goals of palliative care, the primary aim of music therapy is to improve people’s quality of life by relieving physical and psychological symptoms, facilitating communication and alleviating spiritual or existential concerns.

However, there are currently no guidelines in place for the use of music therapy in palliative care. This highlights the need for a stronger evidence base that demonstrates both the benefits and risks to help inform future music therapy provision. To date, primarily because of a lack of robust research, the evidence for music therapy’s effectiveness on patient reported outcomes is positive but weak. Music therapy is an allied health profession and can help a wide range of people affected by illness and disability. It uses musical interaction, and creativity through music, to address a patient’s clinical needs – whether they are psychological, physical, emotional, cognitive or social.

Read the full blog post here

Nurses’ experiences of pain management for people with advanced dementia approaching the end of life

De Witt Jansen, B. et al. (2017) Journal of Clinical Nursing. 26(9-10) pp. 1234–1244

Aims and objectives: To explore hospice, acute care and nursing home nurses’ experiences of pain management for people with advanced dementia in the final month of life. To identify the challenges, facilitators and practice areas requiring further support.

Background: Pain management in end-stage dementia is a fundamental aspect of end-of-life care; however, it is unclear what challenges and facilitators nurses experience in practice, whether these differ across care settings, and whether training needs to be tailored to the context of care.

Conclusions: Achieving pain management in practice was highly challenging. A number of barriers were identified; however, the manner and extent to which these impacted on nurses differed across hospice, nursing home and acute care settings. Needs-based training to support and promote practice development in pain management in end-stage dementia is required.

Relevance to clinical practice: Nurses considered pain management fundamental to end-of-life care provision; however, nurses working in acute care and nursing home settings may be undersupported and under-resourced to adequately manage pain in people dying with advanced dementia. Nurse-to-nurse mentoring and ongoing needs-assessed interactive case-based learning could help promote practice development in this area. Nurses require continuing professional development in pharmacology.

Read the abstract here

Fear of talking about dying ‘leading to thousands of traumatic hospital deaths’

Cancer charity says there is a ‘crisis of communication’ in UK over dying | The Independent

talk-2076968_960_720

Thousands of cancer patients would prefer to die at home but are forced to suffer “traumatic” deaths in hospital, according to Macmillan. Taboos around talking about death are fuelling a “crisis of communication” in the UK that prevents people from planning their final days, warned the organisation in a new report.

Research by the charity found that while 38 per cent of people who die from cancer die in hospital, just one per cent would choose to do so, with 64 per cent saying they wanted to die at home.

Read the news article here