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.

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Family members of deceased palliative care patients receiving bereavement anniversary cards

Goebel, S. et al. BMC Palliative Care | Published online: 19 April 2017

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Red Stamp – Flickr // CC BY-SA 2.0

Background: Bereavement support is part of palliative care. Sending out bereavement anniversary cards is one intervention of follow-up support for the bereaved. This study evaluated the suitability of bereavement anniversary cards as an appropriate method in bereavement care.

Conclusions: The participants’ reactions and opinions about receiving the anniversary card were decidedly positive and indicate the continuation of this practice. Those few less pleased reactions may be related to timing and the first anniversary of the patients’ death and therefore an expression of grief rather than a dissatisfaction with bereavement anniversary cards, as such.

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Palliative sedation challenging the professional competency of health care providers and staff

Leboul, D. et al. BMC Palliative Care | Published online: 11 April 2017

Background: Despite recent advances in palliative medicine, sedating a terminally ill patient is regarded as an indispensable treatment to manage unbearable suffering. With the prospect of widespread use of palliative sedation, the feelings and representations of health care providers and staff (carers) regarding sedation must be carefully explored if we are to gain a better understanding of its impact and potential pitfalls. The objective of the study was to provide a comprehensive description of the opinions of carers about the use of sedation practices in palliative care units (PCU), which have become a focus of public attention following changes in legislation.

Conclusions: The uncertainty experienced by the carers with regard to the medical, psychosocial and ethical justification for sedation is a source of psychological burden and moral distress, and it has proved to be a major source of suffering in the workplace. Lastly, the study shows the uncertainty can have the positive effect of prompting the care team to devise ways to deal with it.

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Home palliative care works: but how?

Sarmento, V.P. et al. BMJ Supportive & Palliative Care. Published Online: 23 February 2017

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Objective: To understand patients and family caregivers’ experiences with home palliative care services, in order to identify, explore and integrate the key components of care that shape the experiences of service users.

Conclusions: Home palliative care teams improve patients and caregivers experience of security when facing life-limiting illnesses at home, by providing competent care and being present. These teams should therefore be widely available and empowered with the resources to be present and provide competent care.

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Supporting relatives and carers at the end of a patient’s life

Berry, M. et al. (2017) BMJ. 356:j367

  • Effective support can make a considerable difference to the relatives of people who are dying; helping to allay fears, reducing stress and anxiety, and minimising suffering in bereavement.

  • Clear communication around practical considerations (death certificate, funeral arrangements, information around autopsy, etc) and psychosocial support (normalising grief, cultural and spiritual considerations) is key.

  • Doctors need to familiarise themselves with local systems and protocols. Written communication in addition to verbal is beneficial.

All doctors, irrespective of their specialty or the setting in which they work, will care for patients who die. Around half of all deaths occur in hospitals.1 Evidence suggests that the quality of communication around this process is poorer in hospitals than in other settings, according to responses from relatives who have experienced bereavement.2 Over half of NHS complaints concern care of the dying.3

This article discusses how to best support relatives and carers at the end of a patient’s life. While the focus is on the hospital setting, the principles are applicable to community and care home settings. In this article, “relative” encompasses family members, care givers, and those close to the patient. The article presumes throughout that the patient has given consent for information to be shared with relatives (Box 1).

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Critical Care Nurses’ Perceptions of End-of-Life Care Obstacles

Beckstrand, R. et al. (2017) Dimensions of Critical Care Nursing. 36(2) pp. 94–105

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Abstract: Background: Nurses working in intensive care units (ICUs) frequently care for patients and their families at the end of life (EOL). Providing high-quality EOL care is important for both patients and families, yet ICU nurses face many obstacles that hinder EOL care. Researchers have identified various ICU nurse-perceived obstacles, but no studies have been found addressing the progress that has been made for the last 17 years.

Conclusions: Obstacles in EOL care, as perceived by critical care nurses, still exist. Family-related obstacles have increased over time. Obstacles related to families may not be easily overcome as each family, dealing with a dying family member in an ICU, likely has not previously experienced a similar situation. On the basis of the current top 5 obstacles, recommendations for possible areas of focus include (1) improved health literacy assessment of families followed by earlier directed, appropriate, and specific EOL information; (2) improved physician/team communication; and (3) ensuring patients’ wishes are followed as written. In general, patient- and family-centered care using clear and open EOL communication regarding wishes and desires between patients and families, their physicians, and nurses will help decrease common obstacles, thus improving the quality of EOL care provided to dying patients and families.

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How nurses support families of intensive care patients towards the end of life

Families of people dying in intensive care need to receive personalised communication and ongoing support, and be involved in the dying process | NIHR

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Researchers gathered evidence on how nurses care for patients and their families in intensive care when life-sustaining treatment is withdrawn. The included studies explored the care of the family before, during and after the process. Most of the studies in this small, mixed methods review were qualitative.

Reviewers identified three main ways, or themes, in which families are supported. First, information and good communication, such as the focus on careful use of language, was seen commonly. Second, by careful management of treatment withdrawal itself, for example by clarifying the gradual change expected when medically focussed life-sustaining treatments are withdrawn and family centred end-of-life care begins. Lastly they described a common focus on making the nursing contribution more visible, such as using techniques to build lasting memories for families.

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