Facing End Of Life Research Articles

Real-world patterns of chemotherapy and immunotherapy utilization at end of life in a large community oncology network.

22 Background: End-of-life anti-neoplastic treatment does not improve quality of life nor prolong survival of advanced cancer patients. It is also not cost-effective. To-date, there has been little data examining real-world patterns of chemotherapy and immunotherapy treatment at end of life. We investigated use of chemotherapy and/or immunotherapy in the last 14 days of life across a community oncology network of 5 practices, 100 sites of care, and 160 oncology providers. Methods: Using a real-time, network-wide database, we identified patients with solid tumor malignancies who died during an episode of active treatment, defined as having received intravenous (IV) chemotherapy and/or immunotherapy within 90 days of death. We then identified patients in this cohort who received IV chemotherapy and/or IV immunotherapy within 14 days of death (TxEoL). We studied TxEoL patterns by cancer type, treatment type, line of therapy, patient age, patient race, and oncology provider years in practice. Statistical significance was assessed using Pearson’s Chi-squared test. Results: 2,858 qualifying solid tumor cancer patients with dates of death between 1/1/2019 and 5/31/2020 were identified. Observed rates of TxEoL were 16.7% for immunotherapy alone vs. 19.6% for chemotherapy +/- immunotherapy (p = 0.09). We found high variation in TxEoL across 132 oncologists that had 5 or more deceased patients (range: 0% to 50%, mean: 19.2%, median: 19.6%). We found no association of TxEOL with physician years in practice, patient age or race. Rates of TxEoL in the first-line setting were significantly higher than in second-line setting or later (23.3% versus 16.4%, p < 0.01). Patients with head and neck, pancreatic, and hepatobiliary malignancies were the most likely to receive TxEoL, while patients with prostate, brain, and ovarian malignancies were the least likely to receive TxEoL. Conclusions: Our data and method identified wide variation in TxEoL patterns across a large community oncology network, suggesting room for provider-level interventions to improve treatment decisions in patients at high risk of death. Studies within our group, such as examining the impact of palliative care referrals on IV anti-cancer treatment in patients potentially facing end of life, are ongoing.

The Need for Cultural Inclusivity in Global Palliative Nursing: Caring for Selected Underserved Populations in the United States.

It is estimated that 11.1 million people in the United States are living with serious illness, and most people with serious illness need palliative care. Quality palliative care incorporates culturally sensitive care, and with the increasing diversity in the United States, it has become even more critical that nurses and health care professionals be prepared to meet the unique needs of those living within the diverse and underserved populations of this country. Advocating for access to palliative care for the seriously ill, culturally respectful care at the end of life, and honoring values, practices, and beliefs are essential roles of the nurse. This article presents 4 examples of individuals from diverse and potentially vulnerable US populations who face unique challenges as they deal with their life-limiting diseases and face end of life.

Dying in Long-Term Care: Perspectives from Sexual and Gender Minority Older Adults about Their Fears and Hopes for End of Life

As lesbian, gay, bisexual, transgender, and queer (LGBTQ+) communities age, many individuals expect a need to enter the long-term care system toward the end of life. Not unlike most aging Canadians, this anticipation is met with concern and fear. However, previous research suggests that older LGBTQ + individuals have unique fears often related to personal safety and discrimination. This qualitative study examined the hopes and fears of older LGBTQ + adults considering long-term care as they face end of life. Data were collected from three focus groups in Ontario, Canada, and analyzed using inductive thematic analysis. Specific and frequent reference to fear of entering long-term care homes was common across all focus groups, as participants anticipated: social isolation, decreased independence and capacity for decision-making, increased vulnerability to LGBTQ+-related stigma as well as exposure to unsafe social and physical environments. The results from this study, therefore, emphasize the need for palliative care specialists and long-term care home staff to address the unique health needs of older LGBTQ + adults nearing the end of life in order to work toward allaying fears and creating supportive and inclusive long-term care environments.

A good death: lessons learnt from an antipodean model

With an increasingly ageing population, more and more people face end of life in a care home. Sandra Blades discusses the findings of a study visit to Australia, the lessons learnt there and how these can be adapted and applied to care in the UK

WS09.10 “Writing for the future”, addressing the challenges of family communication at the end of life in cystic fibrosis

Objectives Three hundred patients attend the Adult CF Centre in Belfast. There are around 100 children who have a parent with CF. There is an unmet need in individuals with disease progression and facing end of life as to how best to communicate this difficult situation to their children and how to prepare for life without them. Our objective was to develop a personal “writing for the future” book that could be shared between patients and their children. Methods We engaged with a volunteer counsellor who was supported by the Belfast City Hospital and the UK CF Trust. We identified 5 patients approaching the end of their life and offered this service, all engaged. The counsellor and patient undertook several conversations that were recorded. Various themes emerged depending on the individual but could include their own childhood, challenges they faced, happy events and advice for their children as they grow up without them. Results This “writing for the future” was transcribed and presented in a professionally bound book with photographs. The patients then shared this with their families. A patient on reflection with his daughter said, “She will always be secure in the knowledge of my love for her”. Following the patients’ death their children had a tangible memory book and found great comfort in the words. Conclusions We have had overwhelming support from patients and their families for this initiative. This novel approach can sensitively aid the challenging conversations within a family at end of life and helps to prepare their children for the future. We continue to develop this service and would support its initiation in other CF centres.

Last Words, Last Connections: How Augmentative Communication Can Support Children Facing End of Life

Last Words, Last Connections: How Augmentative Communication Can Support Children Facing End of Life

A review of distress and its management in couples facing end‐of‐life cancer

The aim of this review paper is to (1) provide an overview of the impact of cancer on the couple, (2) to identify potential outcomes for couple's interventions targeted specifically when one spouse is facing end of life, (3) to review and critique the empirical literature on psychosocial interventions for couple's facing end of life to date, and (4) to provide direction for research in this area. Based on our review, we found that there is clear evidence of significant distress arising from the impact of terminal illness on the marital relationship, which can result in greater suffering in the last months and weeks of life. Currently, there is a very small body of evidence on the effectiveness of couple interventions for those where one is in palliative care. Future randomized controlled trials are needed to examine the impact of couple therapy adapted for couples facing the end of life, and to guide in providing information on the number of sessions and format required for this population. Outcomes, such as more effective communication, reduction in the experience of hopelessness, uncertainty, isolation, depression, anxiety, and more adaptive coping strategies should be considered.