Reflections on a journey, doing unfinished business, and homage to Balfour Mount

As a medical student at McGill in 1972, I was honored to meet Dr. Balfour Mount. He made it possible for me to accompany him to St. Christopher’s Hospice. We were 8 students from all over the world. Dr. Cicely Saunders felt the best way to learn to be with dying patients was to work as a nurse. So, in that summer of my third year of medical school, I did. My career has gone on, first at Mc Gill and since 1987 at UC San Diego. I have been privileged to teach generations of students and faculty a humanistic empowering model of healthcare, seeing the patient as teacher. Our role is to create environments where people take charge of their lives and achieve wellbeing. My first teacher in doing unfinished business was my father. I was 17. He was 72. He had a MI, called me and my mother into the CCU and said, “The last 25 years with you and Ellen have been the best years of my life. If I should die, I want to say thank you and goodbye.” Then he lived for 20 years and we got to know each other. Present at these moments in people’s lives, we can facilitate unfinished business, whether a mother with cancer, who wrote letters for the next 20 years of her daughter’s life, knowing she wouldn’t be there, a Somali family saying goodbye in the ICU to a loved one or my Dad, opening doors to the future.

Facilitating family needs and support at the end of life in hospital: A descriptive study

Background: Caring for family members of dying patients is a vital component of end-of-life care, yet family members’ needs at the end of life may be unmet. Aim: To explore hospital clinician assessment and facilitation of family needs and practices to support families at the end of life. Design: Descriptive study utilising a retrospective medical record audit. Setting and Sample: Undertaken in a large public hospital, the sample included 200 deceased patients from four specialities; general medicine ( n = 50), intensive care ( n = 50), inpatient palliative care ( n = 50) and aged rehabilitation ( n = 50). Data were analysed according to age; under 65-years and 65-years or over. Results: Deceased patients’ mean age was 75-years, 60% were Christian and Next-of-Kin were documented in 96% of cases. 79% spoke English, yet interpreters were used in only 6% of cases. Formal family meetings were held in 64% of cases. An assessment of family needs was undertaken in 52% of cases, and more likely for those under 65-years ( p = 0.027). Cultural/religious practices were supported/facilitated in only 6% of all cases. Specialist palliative care involvement was more likely for those aged 65-years or over ( p = 0.040) and social work involvement more likely for those under 65-years ( p = 0.002). Pastoral care and bereavement support was low across the whole sample. Conclusions: Prioritising family needs should be core to end-of-life care. Anticipation of death should trigger routine referral to support personnel/services to ensure practice is guided by family needs. More research is needed to evaluate how family needs assessment can inform end-of-life care, supported by policy.

An Open-Label Clinical Trial of Oral Transmucosal Haloperidol and Olanzapine in the Treatment of Terminal Delirium

Background : The phenomenon of restlessness, agitation, or cognitive disturbances experienced by dying patients is well-known in palliative care; more than half of these patients will experience delirium symptoms at end-of-life. When not identified early and effectively managed, delirium symptoms could lead to caregiver and patient distress and harm. Methods : 80 patients with a prognosis of 3 days or less will be recruited for an open-label randomized control trial. The two arms compare oral-transmucosal haloperidol 2.5mg vs olanzapine 5mg over 72 hours. The severity of agitation, delirium and toxicities of treatments will be compared at the 24 th , 48 th and 72 nd hour after drug administration. Discussion : This trial is the first to compare anti-psychotics in the management of delirium at the dying stage in the home hospice setting using the oral transmucosal route. Ethical considerations, as well as recruitment procedures are discussed. Trial registration : ClinicalTrials.gov, NCT04750395. Registered 11 February 2021, https://clinicaltrials.gov/ct2/show/NCT04750395

A Cross-Sectional Study of Job Satisfaction and Intention to Leave Job in Palliative Care in Croatia

Purpose Stressful and demanding clinical situations may contribute to job dissatisfaction and may even contribute to an intention to leave the job among palliative care (PC) clinicians. Personal and organizational factors may influence the occupational well-being of PC clinicians as well. This study aimed to determine the predictive contribution of personal (communication skills, resilience, religiosity) and organizational (coworkers’ social support, job control) factors in the explanation of PC clinicians job (dis)satisfaction and their intention to leave their job. Methods The study was conducted on a convenience sample of 122 PC clinicians of different disciplines (nurses/technicians, physicians, psychologists, spiritual counsellors/priests, social workers, physical therapists, etc). The sample mainly consisted of nurses (57%). Hierarchical and logistic regression analyses of the results obtained were applied. Results This study indicates that 53% of PC clinicians are satisfied with their daily job and 76% do not intend to leave the job. The results showed no differences in job satisfaction and intention to leave between nurses/technicians and other PC clinicians. A significant negative correlation was found between job satisfaction and intention to leave the job. Communication skills, religiosity and coworkers’ social support, showed as significant predictors of job satisfaction. PC clinicians’ perception of their own difficulties in communicating bad news contributed significantly to job satisfaction and intention to leave the job in palliative care. Conclusion This study suggests that job satisfaction in a palliative care setting is determined by a larger number of personal and organizational factors than the intention to leave the job. Communication skills showed indispensable for providing quality care for dying patients. Skills in communicating bad news to dying patients and their families have emerged as particularly important for PC clinicians’ occupational well-being.

Intensive Care Nurses’ Experiences Related to Dying Patients: A Qualitative Study

Objective: To describe intensive care nurses’ experiences of caring for dying patients. Method: This study was carried out between July 15, 2019, and September 15, 2019, in a university hospital’s intensive care unit. We conducted in-depth semi-structured interviews with a purposive sample of 14 intensive care nurses to describe their experiences related to patient deaths. Qualitative thematic analysis was used to identify, analyse and report the identified themes. Results: Four themes were identified: (I) Emotions experienced the first time their patient passed away; (II) feelings and thoughts on impact of death; (III) difficulties encountered when providing care and (IV) coping methods with this situation. Conclusion: Despite the passage of time, nurses are unable to forget their death experiences when they first encountered. They oftentimes use ineffective methods of coping and were negatively affected physically and emotionally.

Attitudes of Oncology Nurses Towards Care of Dying Patients and the Principles of Dying with Dignity and Their Views on Good Death

This study investigated oncology nurses’ attitudes toward caring for dying patients, their principles of dying with dignity, and their views on good death. This descriptive study included 257 oncology nurses working at two university hospitals, an educational research hospital and a state hospital in Turkey. Data were collected using the descriptive characteristics information form, the Frommelt Attitudes toward Care of the Dying scale, the Assessment Scale of Attitudes toward the Principles of Dying with Dignity, and the Good Death Scale. The nurses obtained mean scores of 99.53 ± 7.76 on the Frommelt Attitudes toward Care of the Dying scale, 26.84 ± 12.45 on the Assessment Scale of Attitudes toward the Principles of Dying with Dignity, and 57.23 ± 7.48 on the Good Death Scale. The nurses’ personal and professional characteristics influenced their attitudes toward caring for dying patients, the principles of dying with dignity, and their views on good death.

Staff Perceptions of How Music Therapy Can Support Palliative Care Patients in a New Zealand / Aotearoa Hospice, with a Particular Focus on Spiritual Care

<p>The purpose of this study was to explore the perceptions of staff from a hospice, in New Zealand / Aotearoa, regarding the use of music therapy in the care of dying patients. The study has a particular focus on spiritual aspects of palliative care in music therapy, as spirituality is an inherent aspect of the work done by caregivers in palliative care. Hospice staff were asked to reflect on what they knew and understood of music therapy before, and after, a music therapy student arrived at the hospice, and their narratives were explored to uncover the links between patients, music and spirituality. The aim of this was to identify what might be needed to increase knowledge, to improve referral processes, and to increase opportunities for collaborative team work. A cross-section of staff, i.e. two nurses, one doctor, an occupational therapist, and a counsellor, who were part of the palliative care team, were recruited to participate in two semi-structured interviews to discuss their perceptions of the potential for music therapy to support the spiritual needs of hospice patients. A qualitative approach was employed and narrative analysis was used to interpret the interviews. Narrative research emphasises the language of human understanding and in this research it involved gathering participants' 'stories' of their evolving perceptions over time. Findings suggest the language used to describe spiritual care in music therapy was different for each participant although common meanings were drawn from the participants' stories. Commonalities included: music therapy in the hospice was valued by the participants; some participants would like more knowledge to make an informed referral. In addition, staff understanding appeared to have increased over time partly due to educational seminars, sharing at team meetings, actual exposure to music therapy, informal conversations with staff, and participants' growing knowledge of music therapy through their own personal process of learning.</p>

Staff Perceptions of How Music Therapy Can Support Palliative Care Patients in a New Zealand / Aotearoa Hospice, with a Particular Focus on Spiritual Care

<p>The purpose of this study was to explore the perceptions of staff from a hospice, in New Zealand / Aotearoa, regarding the use of music therapy in the care of dying patients. The study has a particular focus on spiritual aspects of palliative care in music therapy, as spirituality is an inherent aspect of the work done by caregivers in palliative care. Hospice staff were asked to reflect on what they knew and understood of music therapy before, and after, a music therapy student arrived at the hospice, and their narratives were explored to uncover the links between patients, music and spirituality. The aim of this was to identify what might be needed to increase knowledge, to improve referral processes, and to increase opportunities for collaborative team work. A cross-section of staff, i.e. two nurses, one doctor, an occupational therapist, and a counsellor, who were part of the palliative care team, were recruited to participate in two semi-structured interviews to discuss their perceptions of the potential for music therapy to support the spiritual needs of hospice patients. A qualitative approach was employed and narrative analysis was used to interpret the interviews. Narrative research emphasises the language of human understanding and in this research it involved gathering participants' 'stories' of their evolving perceptions over time. Findings suggest the language used to describe spiritual care in music therapy was different for each participant although common meanings were drawn from the participants' stories. Commonalities included: music therapy in the hospice was valued by the participants; some participants would like more knowledge to make an informed referral. In addition, staff understanding appeared to have increased over time partly due to educational seminars, sharing at team meetings, actual exposure to music therapy, informal conversations with staff, and participants' growing knowledge of music therapy through their own personal process of learning.</p>

Care needs of dying patients and their family caregivers in hospice and palliative care in mainland China: a meta-synthesis of qualitative and quantitative studies

ObjectiveTo investigate the care needs of dying patients and their family caregivers in hospice and palliative care in mainland China.MethodsA search for English and Chinese quantitative and qualitative studies was performed using the following English databases: PubMed (Medline), CINAHL and PsycINFO, as well as Chinese databases: SinoMed and CNKI. The records were independently screened by two reviewers and critiqued using Joanna Briggs Institute Critical Appraisal tools. All quantitative data were transformed into qualitative data, which were converted into textual descriptions. Due to the diversity of included studies, a three-step analysis was performed: narrative summary, thematic analysis and presentation of integrated results in a narrative form. The qualitative findings were pooled using the meta-aggregation approach.ResultsThe literature search identified 2964 papers after removing duplicates, from which 18 were included (9 quantitative and 9 qualitative studies). All studies were conducted in mainland China. Quantitative studies involved cross-sectional surveys, and qualitative studies involved interviews for data collection. Two synthesised results of patients’ needs were identified, including needs to be comfortable and experience a good death. Another two synthesised results of family caregivers’ needs included needs to care for and improve the quality of life of patients, and to care for themselves well.ConclusionThis study identified that patients and family caregivers have an increasing demand for professional care at the end of life. Professionals, especially nurses, should enact a patients’ demand-centred practice to overcome the challenges of organisation, education, emotion and communication to provide high-quality end-of-life care.