Palliative Medicine最新文献

Background: Perinatal palliative care can offer compassionate support to families following diagnosis of a life-limiting illness, to enable them to make valued choices and the most of the time that they have with their newborn. However, home birth is usually only offered in low-risk pregnancies.

Case: A couple who received an antenatal diagnosis of hypoplastic left heart syndrome and who had made a plan to provide palliative care to their baby after birth requested the option of a home birth.

Possible courses of action: Recommend birth at hospital or explore the possibility of a home birth with perinatal palliative care support.

Formulation of a plan: Multidisciplinary discussion and collaboration enabled a plan for home birth to be made which anticipated potential complications.

Outcome: The baby was born at home and died on day 5 of life receiving outreach nursing, paediatric and palliative care support and buccal and oral opioids for symptom management. We include reflections from the family on the importance of this experience.

Lessons: We provide a list of potential criteria for considering home birth in the setting of perinatal palliative care.

View: Facilitating a home birth in the setting of perinatal palliative care is an option that can be hugely valued by families, but this service may be practically difficult to deliver in many contexts. Further research is needed to understand the preferences of women and families receiving perinatal palliative care.

Background: Adequate death preparation positively influences families' experience before death and during bereavement. However, how to prepare families in non-Western cultures has received scant attention.

Aim: To explore family caregivers' experiences in preparing for a relative's death in specialist palliative care in Taiwan.

Design: A qualitative study employing reflexive thematic analysis of data collected from semi-structured interviews was conducted.

Setting/participants: Twenty-two family caregivers from seven hospitals participated.

Results: The overarching theme was 'getting everything right to have no regrets between the dead and the living'. We developed two themes to explain preparations for the time surrounding and after the death, including the deceased' afterlife: (1) 'having a good ending but not the end of the relationship', which addresses preparations for the death itself, the funeral, the afterlife and maintaining connections and (2) 'using religious beliefs and cultural norms to guide preparation', which explores perceptions of a good death, including refrain from strong emotions before and after the death.

Conclusion: Funeral arrangements, enhancing the deceased's afterlife and maintaining connections to the deceased are crucial for families' experiences which can be impacted by actions they take as they prepare for the death. A culturally appropriate death is beneficial for the dying relative which includes preparing to not show strong emotions during and after the death. These insights inform the importance of the cultural context in death preparation in Taiwan and provide perspectives for palliative care beyond Western culture, potentially benefiting Chinese populations, predominantly East Asian and Buddhist societies.

Background: Implementing shared decision-making in oncology practice is often limited, particularly integrating the patient's context into decision-making. To improve this, we conducted a quality improvement project, CONtext. CONtext attempts to accomplish this by: (1) Integrating the patient's context into shared decision-making during consultation with the medical oncologist; (2) Actively involving the GP and case manager (a specialized oncology nurse), who often have knowledge about the patient's context, and; (3) Giving the person with advanced cancer a time-out period of up to 2 weeks to consider and discuss treatment options with others, including close family and friends.

Aim: To explore how persons with advanced cancer and their involved professionals experienced shared decision-making after the introduction of CONtext.

Design: A qualitative embedded multiple-case study using in-depth interviews analysed with inductive content analysis.

Participants: A purposive sample of 14 cases, each case consisting of a patient with advanced cancer and ideally their medical oncologist, case manager, and GP.

Results: Four themes were identified: shared decision-making is a dynamic and continuous process (1), in which the medical oncologist's treatment recommendation is central (2), fuelled by the patients' experience of not having a choice (3), and integrating the patient's context into shared decision-making was considered important but hampered (4), for example, by the association with the terminal phase.

Conclusions: The prevailing tendency among medical oncologists and persons with advanced cancer to prioritize life-prolonging anticancer treatments restricts the potential for shared decision-making. This undermines integrating individual context into decision-making, a critical aspect of the palliative care continuum.

Background: Healthcare providers working in hospitals have significant exposure to patients with palliative care needs. For many patients, these needs often reflect non-specialist rather than specialist palliative care needs. Embedding a palliative care approach in acute hospital-based care however is challenging.

Aim: To identify core indicators for the integration of a palliative care approach in hospitals.

Design: A Delphi technique used three sequential online survey rounds. Preliminary indicators were identified in a concept analysis of a palliative care approach, and a systematic review of hospital-based healthcare providers' views of a palliative care approach.

Participants: An international expert panel of three key stakeholder groups (clinicians, researchers, patients/family members) participated in each Delphi round.

Results: The Delphi participants were recruited from 12 countries; 97 individuals responded to round 1, 78 to round 2 and 72 to round 3 (74% overall response rate). Consensus was achieved (defined a priori as >70%) on 32 core indicators of a hospital-based palliative care approach, with five structural indicators (relating to infrastructure and governance), 21 organisational indicators (relating to clinical care processes) and six staff indicators (relating to training and support for healthcare providers).

Conclusions: This study offers multi-level guidance for clinical practice, policy and research related to integration of a palliative care approach in hospitals, based on evidence and international consensus from major stakeholder groups. These core indicators provide a means to assess, review and communicate the core elements of a palliative care approach in hospitals.

Background: The use of opioids occasionally causes tinnitus. However, there is a paucity of data regarding the use of peripherally acting μ-opioid receptor antagonists for opioid-associated tinnitus in patients with cancer.

Actual case: A 74-year-old male with pancreatic cancer complained of abdominal pain. Two days after initiating oxycodone therapy, the patient experienced tinnitus during body movements. Although peripheral tinnitus disappeared after discontinuing oxycodone, it reappeared with hydromorphone or tapentadol administration.

Possible courses of action: Drug cessation is a preferred intervention for drug-induced tinnitus; however, the cessation of opioids may not be feasible in patients with cancer who are already taking opioids.

Formulation of a plan: Based on the presumed mechanism of peripheral tinnitus, the use of peripherally acting μ-opioid receptor antagonists was planned, and 200 μg/day of naldemedine was prescribed for tinnitus relief.

Outcome: Tinnitus disappeared immediately after initiating naldemedine, and the pain was well-controlled. The effect was preserved after increasing or switching opioids.

Lessons: The use of peripherally acting μ-opioid receptor antagonists may be an option to treat opioid-associated tinnitus without compromising the analgesic effects.

View: Further clinical data regarding the secondary effect of peripherally acting μ-opioid receptor antagonists on opioid-associated complications other than constipation are required.

Background: Patients with non-cancer disease are less likely to receive specialized palliative care than cancer patients. To be able to provide the best specialized palliative care, it is important to understand palliative care needs of non-cancer patients and whether the type and level of needs differ from those of cancer patients. Large studies including both cancer and non-cancer patients, using validated needs-assessment-tools, are needed to understand differences in palliative care needs at admittance to specialized palliative care.

Aims: To compare palliative care needs at the start of palliative care for cancer and non-cancer disease.

Design: Six-year nationwide register-based study.

Setting/participants: This study included patients from all Danish specialized palliative care services (hospice care, hospital-based palliative care, home-based palliative care, or consultation) who completed a need-assessment-questionnaire. Ordinal logistic regression was performed to study the association between diagnosis and needs.

Results: Cancer patients had a higher probability of receiving specialized palliative care. Of the 44,315 palliative care admissions included in this study, 93.3% were on cancer patients. Independent of diagnosis patients experienced on average six needs and high levels of fatigue and impaired physical functioning. Non-cancer patients had significantly higher odds of insomnia, fatigue and impaired emotional functioning, physical functioning, and quality of life whereas cancer patients had higher odds of pain (except for patients with neurological disease).

Conclusions: The higher levels of several symptoms/problems among non-cancer patients compared to cancer patients suggests that referral to specialized palliative care should be improved for non-cancer patients perhaps by improving identification of palliative needs.

Background: Assisted dying, also commonly known as euthanasia and physician-assisted suicide, is legal in many countries. Interest in assisted dying is growing due to evolving societal understandings of a good death and a desire for choice. Ethico-legal perspectives are well-known, but as societies become more heterogenous, a greater understanding of the perspectives of people from diverse racial, ethnic, and cultural backgrounds is needed.

Aim: To explore perspectives of people from diverse racial, ethnic and cultural backgrounds about assisted dying.

Design: Scoping review with narrative synthesis. The protocol was registered with Open Science Framework.

Data sources: Medline, CINAHL Complete, PsycINFO and ProQuest Dissertations & Theses Global were searched from inception to May 2023. Citations were independently assessed against inclusion and exclusion criteria.

Results: Of the 17 included studies, perspectives of assisted dying were presented according to religion, religiosity, spirituality, race, ethnicity and ancestry. Perspectives were diverse, presenting more as a spectrum, with multiple intersections and interconnections. Support and/or opposition for assisted dying differed according to cultural attributes, but even amongst those with similar cultural attributes, perspectives differed according to life experiences and notions of suffering.

Conclusion: Perspectives on assisted dying are dynamic and evolving. Even where assisted dying is legalised, individual's cultural attributes contribute to unique perspectives of assisted dying as an end-of-life option. Thus, understanding a person's culture, beliefs, expectations and choices in illness, treatment goals and care is fundamental, extending beyond what may be already considered as part of clinician-patient care relationships and routine advance care planning.

Background: Patient and Public Involvement (PPI) is an important component of healthcare research. Conducting PPI within paediatric palliative care research requires specific ethical and practical considerations. Regular reviews of PPI activity are important.

Aim: To evaluate a paediatric palliative care research centre's PPI activity to determine what went well, or less well; and how future activities can be improved.

Design: Two stage evaluation: first a review of PPI study logs; second a qualitative exploration using a survey, structured interviews and a focus group. Data were analysed thematically.

Settings/participants: Parents of children with life-limiting conditions, bereaved parents and researchers, all engaged in PPI activity within a paediatric palliative care research centre.

Findings: The review of PPI logs for 15 studies highlighted the crucial role of funding in enabling PPI throughout the research. Eight parents completed the survey, 4 parents were interviewed and 12 researchers participated in a focus group. Three themes were developed: Clarity of processes and purpose; balanced relationships created a safe space; and mutual respect and value for PPI. These themes highlight what is working well within the Centre's approach to PPI and the opportunities to improve.

Conclusions: To undertake meaningful PPI in paediatric palliative care research, adequate time and resources are required. Roles, processes and expectations must be explicitly agreed. Establishing relationships ensures trust and enables authenticity and vulnerability. In addition to improving research, PPI has personal benefits for researchers and parents. The evaluation led to the development of a 'route map' for establishing an impactful PPI group for paediatric palliative care research.

Background: Every advanced cancer diagnosis brings enormous challenges to patients and their relatives on numerous levels: be it physical, practical, social challenges, or on a more personal level. While specific aspects have been researched before, an overarching approach is lacking.

Aim: To understand the lived experiences of people with advanced cancer, to identify gaps along the cancer care continuum, to identify potential opportunities for meaningful interventions and to develop a theoretical framework for practitioners and researchers.

Design: A qualitative study using in-depth interviews with patients, relatives, and care professionals. Interviews were transcribed verbatim and analysed using a conventional content analysis.

Setting/participants: Fifty-four interviews with 17 patients from a university oncology department and palliative care service, 15 relatives and 22 care professionals from physicians to funeral directors. All interviewees were recruited by a German university hospital.

Results: We developed a novel model describing the diagnosis with advanced cancer as a highly disruptive experience that threatens to challenge the integrity of personhood in cancer patients through four areas: communication, knowledge, relationships, and confidence. We were able to identify factors leading to disintegration in these areas and factors supporting a restoration of integrity of personhood.

Conclusions: The developed model provides a more thorough understanding of patients lived experiences. It can help to develop new interventions along the cancer care continuum to support patients in the complex challenges they face. These interventions should focus on supporting the integrity of personhood.