Medical Cannabis and Utilization of Nonhospice Palliative Care Services: Complements and Alternatives at End of Life

Background and Objectives There is a need to know more about cannabis use among terminally diagnosed older adults, specifically whether it operates as a complement or alternative to palliative care. The objective is to explore differences among the terminal illness population within the Illinois Medical Cannabis Program (IMCP) by their use of palliative care. Research Design and Methods The study uses primary, cross-sectional survey data from 708 terminally diagnosed patients, residing in Illinois, and enrolled in the IMCP. We compared the sample on palliative care utilization through logistic regression models, examined associations between palliative care and self-reported outcome improvements using ordinary least squares regressions, and explored differences in average pain levels using independent t-tests. Results 115 of 708 terminally diagnosed IMCP participants were receiving palliative care. We find increased odds of palliative care utilization for cancer (odds ratio [OR] [SE] = 2.15 [0.53], p < .01), low psychological well-being (OR [SE] = 1.97 [0.58], p < .05), medical complexity (OR [SE] = 2.05 [0.70], p < .05), and prior military service (OR [SE] = 2.01 [0.68], p < .05). Palliative care utilization is positively associated with improvement ratings for pain (7.52 [3.41], p < .05) and ability to manage health outcomes (8.29 [3.61], p < .01). Concurrent use of cannabis and opioids is associated with higher pain levels at initiation of cannabis dosing (p < .05). Discussion and Implications Our results suggest that cannabis is largely an alternative to palliative care for terminal patients. For those in palliative care, it is a therapeutic complement used at higher levels of pain.

Truth Disclosure at the End of Life: A Qualitative Study of Internal Medicine Residents in the United Arab Emirates

Background Respect for patient autonomy has become the guiding biomedical ethical tenet in the West; yet, moral values are contextual and culturally relevant. In the collectivist society of the Middle East, families and physicians have historically believed that concealing truth about a terminal illness is more ethical and compassionate. Recent studies reveal a trend toward truth disclosure. Objective To gain insight into resident experiences with, and barriers to, truth disclosure in terminally ill patients in the United Arab Emirates (UAE). Methods Focus group interviews were conducted with first through fourth year internal medicine residents and recent graduates at two large academic medical centers in the UAE. Qualitative thematic content analysis was used to identify themes related to communication and truth telling in end-of-life care. Results Residents revealed that non-disclosure of medical information in serious illness is a common practice in UAE hospitals. Barriers to truth telling include family objection, deficits in medical training, and inconsistently implemented institutional guidelines. Conclusion Educational and policy interventions are needed to improve physician-patient communication, decrease patient-family-physician tension, and alleviate trainee moral distress.

The Healthcare Journey of Women With Advanced Gynecological Cancer From Diagnosis Through Terminal Illness: Qualitative Analysis of Progress Note Data

Objective To examine women’s journeys with gynecologic cancer from before diagnosis through death and identify elements of their healthcare experience that warrant improvement. Methods This exploratory study used longitudinal progress notes data from a multispecialty practice in Northern California. The sample included women with stage IV gynecological cancer diagnosed after 2011 and who died before 2018. Available progress notes from prior to diagnosis to death were qualitatively analyzed. Results We identified 32 women, (median age 61 years) with mostly uterine (n=17) and ovarian (n=9) cancers and median survival of 9.2 months (min:2.9 and max:47.5). Sixteen (50%) received outpatient palliative care and 18 (56%) received hospice care. The analysis found wide variation in documentation about communication about diagnosis, prognosis, goals of care, stopping treatment, and starting hospice care. Challenges included escalating/severe symptoms, repeated urgent care/emergency department/hospital encounters, and lack of or late access to palliative and hospice care. Notes also illustrated how patient background and goals influenced care trajectory and communication. Documentation styles varied substantially, with palliative care notes more consistently documenting conversations about goals of care and psychosocial needs. Conclusion This analysis of longitudinal illness experience of women with advanced gynecological cancer suggests that clinicians may want to (1) prioritize earlier discussion about goals of care; (2) provide supplemental support to patients with higher needs, possibly through palliative care or navigation; and (3) write notes to enhance patient understanding now that patients may access all notes.

Perjamuan Kudus Sebagai Sarana Pastoral Bagi Penderita Penyakit Terminal Illness di HKBP

Terminal illness merupakan penyakit yang menyebabkan penderita mengalami berbagai dinamika kedukaan seperti marah, depresi, menolak bahwa ia seorang penderita dan kematian yang segera terjadi. Karena kematian bagi seorang penderita terminal illness tidak terjadi secara mendadak tetapi proses yang membuat penderita terminal illness semakin lama menjadi sekarat. Dalam proses tersebut, penderita terminal illness membutuhkan pelayanan pastoral. Selain kunjungan pastoral, HKBP juga melayankan perjamuan kudus bagi penderita terminal illnes di HKBP. Tetapi pelayanan ini dilaksanakan atas permintaan keluarga, jika mereka sudah siap untuk melepas keluarga mereka yang sakit. Ada anggapan bahwa perjamuan kudus adalah pelayanan untuk mempersiapkan kematian. Jadi, ada yang menerima dan ada yang menolak. Tulisan ini bertujuan untuk meninjau dan menganalisis makna teologis dan tujuan pelayanan perjamuan kudus bagi orang sakit di HKBP. Metode pengumpulan data dilakukan melalui wawancara mendalam dan studi pustaka serta analisis data dilakukan dengan analisis mengalir, yaitu mengumpulkan, mengolah, dan menarik kesimpulan. Dari data yang diperoleh bahwa perjamuan kudus kudus mengandung fungsi pastoral seperti menopang, menyembuhkan, dan mendamaikan dan dapat dilayankan sebagai pelayanan tanpa permintaan keluarga atau ijin keluarga. Sebab, perjamuan kudus bukan untuk melegitimasi kematian dari orang yang menerima perjamuan tersebut. Selain itu, perjamuan kudus juga dapat diberdayagunakan sebagai bentuk persekutuan yang mempersatukan keluarga. Melalui persekutuan tersebut atau kehadiran secara fisik, keluarga bisa berdoa dan membuka ruang percakapan pastoral bagi keluarga sehingga keluarga bisa satu hati berdoa bagi PTI.

Missed Opportunities for Compassion: A Call to Action for Incarcerated Individuals Denied Compassionate Release

In 2016, a total of 4,117 state and federal prisoners died in publicly or privately operated prisons. Each year from 2001 to 2016, an average of 88% of deaths in state prisons were due to natural causes, with more than half of those due to cancer, heart disease or liver disease, conditions for which non-incarcerated citizens often benefit from palliative care and hospice. Prisoners age 55 and older are the fastest-growing segment of the population residing in prisons, as well as those with the highest mortality rate. Compassionate release of seriously ill prisoners became a matter of federal statute in 1984 and has currently been adopted by the majority of U.S. prison jurisdictions. The spirit of the mandate is based on the idea that catastrophic health conditions ie terminal illness affect the four principles of incarceration: retribution, rehabilitation, deterrence, and incapacitation. Concerned about an aging prison population, overcrowded facilities, and soaring costs, many policy makers are calling for a wider use of compassionate release for persons with terminal illness as well as broader prison reform. The prognosticating criteria of compassionate release guidelines are clinically flawed, and the application and procedural barriers are prohibitive. In this paper we review cases of patients who qualified for compassionate release but had their applications denied. We will discuss the urgent need for access to quality palliative medicine for incarcerated persons with advanced illness and call healthcare providers to action with the aim of reducing suffering and promoting social justice for those in need.

Death With Dignity: A Policy Analysis

Death with dignity is one of many titles attributed to the practice of providing a patient with terminal illness a means to die in light of extreme suffering as a result of a terminal illness. The purpose of the Oregon Death with Dignity Act is to provide individuals suffering from a terminal illness with the right to make a written request for life-ending medication to end their life in a “humane and dignified manner.” Deborah Stone’s policy goals of equity, efficiency, welfare, security, and liberty provides a framework to analyze whether a policy is doing what it says it wants to do. As such, the goal of this presentation is to apply the policy goals framework to determine if the Death with Dignity Act is accomplishing its stated goals. Applying a theory of the policy process, the Death with Dignity Act was analyzed using the most recently available data from the Oregon Health Authority. Results showed that since the Death with Dignity Act passed in 1997, 2,518 people have received prescriptions for life-ending medications, and of those, 1657 or 66% have used the medication to end their lives. Based on the data aggregated between 1997 and 2019, the Death with Dignity Act has mostly met its purpose of providing individuals with a terminal illness with the right to die on their own terms and with dignity. However, there are still several issues regarding equity, especially for low-income BIPOC populations. Implications for practice, policy and research are discussed.

A Case Study On Anticipated End-of-Life Caregiving Among The Millennial American Born Chinese

Millennial American Born Chinese (ABCs) are in a double jeopardy position with end-of-life (EOL) care for their immigrant parents, because of both cultural and generational clashes. There is no existing empirical study about the millennial ABCs’ attitudes or behaviors towards EOL caregiving. Our study is the first one to explore the millennial ABCs’ anticipated EOL caregiving behaviors, support and resources needed, attitudes towards terminal illness disclosure and advance care planning (ACP) discussion with their parents, and how acculturation influences. A qualitative in-depth phone interview using a case study approach, with a scenario of caring for parents with Parkinson’s disease and stage IV lung cancer, was adopted. Participants were recruited via convenience sampling, and a total of 27 (18 females and 9 males with an average age of 25) passed the screening and completed the interviews. Using the directed content analysis, researchers identified two themes: EOL caregiving and EOL decision making, which included five sub-themes: caregiving behaviors, needed supports and resources, care arrangement decision, terminal illness disclosure, and ACP. Both traditional Chinese culture of familism and filial piety, and western culture of autonomy and patients’ rights to know were exhibited in every theme. Most participants did not fully understand ACP concept, but they were willing to initiate ACP conversation after comprehending ACP concept. This study constitutes an essential step towards understanding the millennial ABC EOL caregivers’ financial, physical, and emotional needs from family, community and government, better establishing corresponding policies, and promoting public education in ACP to benefit this minority group.