Facing death differently: revolutionising our approach to death and grief

Selman, L. (2024). 

BMJ, q2815.

https://doi.org/10.1136/bmj.q2815

Here is an excerpt:

End-of-life care hasn’t just been medicalised, it has been deprioritised. Healthcare systems and education focus on cures and life extension, sometimes at the expense of quality of life and compassionate care for dying people.

In the UK, about 90% of dying people would benefit from palliative care, but 25% don’t get it. Demand is set to rise 25% over the next 25 years as lifespans increase and health conditions grow more complex, yet the sector is already critically underfunded and overstretched. Just a third of UK hospice funding comes from the state, with the remaining £1bn raised annually through charity shops, fundraising events, and donations. This funding gap sends a clear message: care for dying people is less valued than aggressive treatments and high-tech medical advances. (It’s surely no coincidence that 9 in 10 of the clinical and care workforce in UK hospices are women, reflecting a long history of “women’s work” being undervalued.)

This patchwork funding model leaves rural and other underserved communities with glaring gaps in care, particularly for children. As demand for palliative care rises, the case for proper government funding for end-of-life care provision in care homes and the community, including hospices, grows ever more urgent.

In the meantime, stark inequities exist in access to hospice, palliative, and bereavement services. Marginalised communities face the greatest number of hurdles in accessing support at a time when compassion is most needed. Ethnic minority groups, in particular, encounter language barriers, inadequate outreach, and a shortage of culturally competent providers. Thirty per cent of people from ethnic minority groups but just 17% of white people say they don’t trust healthcare professionals to provide high-quality end-of-life care.

The article is here.

Here are some thoughts:

Selman highlights the significant challenges and ethical concerns surrounding end-of-life care in the UK. Despite 90% of dying people benefiting from palliative care, 25% do not receive it, and demand is expected to rise by 25% over the next 25 years due to increasing lifespans and complex health conditions. However, the sector remains critically underfunded, with only a third of hospice funding coming from the government and the rest relying on charitable efforts. This funding gap reflects a societal undervaluation of end-of-life care compared to high-tech medical interventions, raising ethical questions about priorities and the equitable distribution of resources.

The article also sheds light on stark inequities in access to palliative and bereavement services, particularly for marginalized communities. Ethnic minority groups face additional barriers, such as language difficulties, inadequate outreach, and a lack of culturally competent care providers. Trust in healthcare professionals for end-of-life care is significantly lower among ethnic minority groups (30%) compared to white individuals (17%), highlighting systemic failures in addressing the needs of diverse populations. These disparities underscore the ethical imperative to ensure equitable access to compassionate, culturally sensitive care for all.

Ultimately, the piece calls for a reevaluation of societal and healthcare priorities, emphasizing the need to balance life extension with quality of life and dignity in dying. It advocates for increased government funding, culturally competent care, and a shift in values to prioritize compassion and equity in end-of-life care. These issues are not only practical but deeply ethical, reflecting broader questions about how societies value and care for their most vulnerable members.

Toward a Social Bioethics Through Interpretivism: A Framework for Healthcare Ethics.

Dougherty, R., & Fins, J. (2023).

Cambridge Quarterly of Healthcare Ethics, 1-11.

doi:10.1017/S0963180123000452

Abstract

Recent global events demonstrate that analytical frameworks to aid professionals in healthcare ethics must consider the pervasive role of social structures in the emergence of bioethical issues. To address this, the authors propose a new sociologically informed approach to healthcare ethics that they term “social bioethics.” Their approach is animated by the interpretive social sciences to highlight how social structures operate vis-à-vis the everyday practices and moral reasoning of individuals, a phenomenon known as social discourse. As an exemplar, the authors use social bioethics to reframe common ethical issues in psychiatric services and discuss potential implications. Lastly, the authors discuss how social bioethics illuminates the ways healthcare ethics consultants in both policy and clinical decision-making participate in and shape broader social, political, and economic systems, which then cyclically informs the design and delivery of healthcare.

My summary: 

The authors argue that traditional bioethical frameworks, which focus on individual rights and responsibilities, are not sufficient to address the complex ethical issues that arise in healthcare. They argue that social bioethics can help us to better understand how social structures, such as race, class, gender, and sexual orientation, shape the experiences of patients and healthcare providers, and how these experiences can influence ethical decision-making.

The authors use the example of psychiatric services to illustrate how social bioethics can be used to reframe common ethical issues. They argue that the way we think about mental illness is shaped by social and cultural factors, such as our understanding of what it means to be "normal" and "healthy." These factors can influence how we diagnose, treat, and care for people with mental illness.

The authors also argue that social bioethics can help us to understand the role of healthcare ethics consultants in shaping broader social, political, and economic systems. They argue that these consultants participate in a process of "social discourse," in which they help to define the terms of the debate about ethical issues in healthcare. This discourse can then have a cyclical effect on the design and delivery of healthcare.

Here are some of the key concepts of social bioethics:

• Social structures: The systems of power and inequality that shape our society.
• Social discourse: The process of communication and negotiation through which we define and understand social issues.
• Healthcare ethics consultants: Professionals who help to resolve ethical dilemmas in healthcare.
• Social justice: The fair and equitable distribution of resources and opportunities.

Culture: The Grand Web of Meaning

Chao, Melody Manchi and Kesebir, Pelin,
Found in The Experience of Meaning in Life: Perspective from the Psychological Sciences
(September 16, 2011).  J. Hicks, C. Routledge, eds., Springer Press, 2011.

Abstract:    

Meaning and culture mutually constitute each other. Culture rests on meaning, whereas meaning exists and is propagated in culture. The uniquely human quest for meaning transpires against the background of culture and is simultaneously recreating culture. The current chapter aims to explore different aspects of this dynamic relationship between meaning and culture. We begin by defining meaning and culture, and elaborating the nature of their intricate relationship. Then, we analyze the universal and relative aspects of meaning systems across cultures. Finally, we examine meaning in the backdrop of multiculturalism to illuminate how individuals navigate through different cultural webs of meaning and its implications to cultural competence.

The book chapter is here.

Are research ethics guidelines culturally competent?

Ben Gray, Jo Hilder, Lindsay Macdonald, Rachel Tester, Anthony Dowell, & Maria Stubbe
Research Ethics May 20, 2016

Abstract

Research ethics guidelines grew out of several infamous episodes where research subjects were exploited. There is significant international synchronization of guidelines. However, indigenous groups in New Zealand, Canada and Australia have criticized these guidelines as being inadequate for research involving indigenous people and have developed guidelines from their own cultural perspectives. Whilst traditional research ethics guidelines place a lot of emphasis on informed consent, these indigenous guidelines put much greater emphasis on interdependence and trust. This article argues that traditional guidelines are premised on relationships of equal power, and that often the researcher has more power that is not fully equalized by providing information. Where there is a relationship of unequal power, then focusing on interdependence and trust is more likely to achieve ethical safety. We illustrate this thesis by describing the detail of a research project looking at the use of interpreters, where we video-recorded live consultations and then interviewed the patient, interpreter and doctor. We conclude by suggesting that mainstream research ethics guidelines should pay more attention to the development of a trustworthy relationship between subject and researcher, and that, following the lead from clinical medicine, we should develop a culturally competent ethical framework for research on human subjects.

The article is here.