Patient and professional experiences of palliative care referral discussions from cancer services : a qualitative interview study

Objectives The aim of this paper was to identify current barriers, facilitators and experiences of raising and discussing palliative care with people with advanced cancer. Methods Semi‐structured interviews were conducted with patients with advanced cancer and healthcare professionals (HCPs). Patients were included who had and had not been referred to palliative care. Transcripts were analysed using framework analysis. Results Twenty‐four patients and eight HCPs participated. Two overarching themes and five sub‐themes emerged: Theme one—referral process: timing and triggers, responsibility. Theme two—engagement: perception of treatment, prognosis and palliative care, psychological and emotional preparedness for discussion, and understanding how palliative care could benefit present and future care. Conclusion There is a need to identify suitable patients earlier in their cancer trajectory, address misconceptions about palliative care, treatment and prognosis, and better prepare patients and HCPs to have meaningful conversations about palliative care. Patients and HCPs need to establish and communicate the relevance of palliative care to the patient's current and future care, and be clear about the referral process

Against Reduction

Provocative, hopeful essays imagine a future that is not reduced to algorithms. What is human flourishing in an age of machine intelligence, when many claim that the world's most complex problems can be reduced to narrow technical questions? Does more computing make us more intelligent, or simply more computationally powerful? We need not always resist reduction; our ability to simplify helps us interpret complicated situations. The trick is to know when and how to do so. Against Reduction offers a collection of provocative and illuminating essays that consider different ways of recognizing and addressing the reduction in our approach to artificial intelligence, and ultimately to ourselves. Inspired by a widely read manifesto by Joi Ito that called for embracing the diversity and irreducibility of the world, these essays offer persuasive and compelling variations on resisting reduction. Among other things, the writers draw on Indigenous epistemology to argue for an extended “circle of relationships” that includes the nonhuman and robotic; cast “Snow White” as a tale of AI featuring a smart mirror; point out the cisnormativity of security protocol algorithms; map the interconnecting networks of so-called noncommunicable disease; and consider the limits of moral mathematics. Taken together, they show that we should push back against some of the reduction around us and do whatever is in our power to work toward broader solutions

Developing a complex intervention to support timely engagement with palliative care for patients with advanced cancer in primary and secondary care in the UK : a study protocol

Introduction: For patients with advanced cancer, timely access to palliative care can improve quality of life and enable patients to participate in decisions about their end-of-life care. However, in a UK population of 2500 patients who died from cancer, one-third did not receive specialist palliative care, and of those who did, the duration of involvement was too short to maximise the benefits. Initiating a conversation about palliative care is challenging for some health professionals and patients often have unmet information needs and misconceptions about palliative care. We will work closely with patients and health professionals to develop a patient decision aid and health professional training module designed to facilitate a timely and informed conversation about palliative care. Methods and analysis: This study is being conducted over 24 months from November 2017 to October 2019 and follows the UK Medical Research Council framework for developing complex interventions and the International Patient Decision Aids Guideline. The Ottawa Decision Support Framework underpins the study. The Supporting Timely Engagement with Palliative care (STEP) intervention will be developed though an iterative process informed by interviews and focus groups with patients with advanced cancer, oncologists, general practitioners and palliative care doctors. An expert panel will also review each iteration. The expert panel will consist of a patient representative with experience of palliative care, health professionals who are involved in advanced cancer care decision-making, a medical education expert and the National Council for Palliative Care director of transformation. The feasibility and acceptability of the decision aid and doctor training will be tested in oncology and general practice settings. Ethics and dissemination: Ethical approval for the study has been granted by the Office for Research Ethics Committees Northern Ireland (ORECNI), approval reference 17/NI/0249. Dissemination and knowledge transfer will be conducted via publications, national bodies and networks, and patient and family groups

Planning Framework Options for The Massachusetts Ocean Plan (DRAFT)

The Massachusetts Ocean Partnership (MOP) Planning Frameworks Team, in consultation with the Massachusetts Executive Office of Energy and Environmental Affairs (EEA), and based on collective experience and a review of ocean, coastal and resource management programs from the US and other countries, suggests that nine elements are essential components of the framework for the Massachusetts Ocean Plan and its implementation. While management plans and programs generally have these elements in common, there are a range of options for carrying out each program component. These options were presented to structure and inform the development of the Massachusetts Ocean Plan. For the most part, the range of options represents those that were considered to be appropriate under the Commonwealth’s existing legal and administrative structure and responsive to the requirements of the Massachusetts Ocean Act. However, the general concepts these options represent are likely to be transferable to other jurisdictions (especially in the United States) and can inform future ocean management and planning in Massachusetts. Additionally, options or their core elements can be combined to create additional alternatives within one of the nine planning components

Indigenous Protocol and Artificial Intelligence Position Paper

This position paper on Indigenous Protocol (IP) and Artificial Intelligence (AI) is a starting place for those who want to design and create AI from an ethical position that centers Indigenous concerns. Each Indigenous community will have its own particular approach to the questions we raise in what follows. What we have written here is not a substitute for establishing and maintaining relationships of reciprocal care and support with specific Indigenous communities. Rather, this document offers a range of ideas to take into consideration when entering into conversations which prioritize Indigenous perspectives in the development of artificial intelligence. It captures multiple layers of a discussion that happened over 20 months, across 20 time zones, during two workshops, and between Indigenous people (and a few non-Indigenous folks) from diverse communities in Aotearoa, Australia, North America, and the Pacific. Indigenous ways of knowing are rooted in distinct, sovereign territories across the planet. These extremely diverse landscapes and histories have influenced different communities and their discrete cultural protocols over time. A single ‘Indigenous perspective’ does not exist, as epistemologies are motivated and shaped by the grounding of specific communities in particular territories. Historically, scholarly traditions that homogenize diverse Indigenous cultural practices have resulted in ontological and epistemological violence, and a flattening of the rich texture and variability of Indigenous thought. Our aim is to articulate a multiplicity of Indigenous knowledge systems and technological practices that can and should be brought to bear on the ‘question of AI.’ To that end, rather than being a unified statement this position paper is a collection of heterogeneous texts that range from design guidelines to scholarly essays to artworks to descriptions of technology prototypes to poetry. We feel such a somewhat multivocal and unruly format more accurately reflects the fact that this conversation is very much in an incipient stage as well as keeps the reader aware of the range of viewpoints expressed in the workshops

Kaʻina Hana ʻŌiwi a me ka Waihona ʻIke Hakuhia Pepa Kūlana

He wahi hoʻomaka kēia pepa kuana no ke Kaʻina Hana ʻŌiwi (KHʻO) a me ka Waihona ʻike Hakuhia (WʻIH) no ka poʻe e ake nei e haku a hana he WʻIK mai ke kuanaʻike kūpono e hoʻokele ʻia nei e ka manaʻo ʻŌiwi. He kiʻina hana ko kēlā a me kēia kaiāulu ʻŌiwi i nā nīnau a mākou e ui aʻe ai. ʻAʻole kēia mea a mākou i kākau ai he pani i ke kūkulu a mālama ʻana i ka pilina kākoʻo kekahi i kekahi me kekahi mau kaiāulu ʻŌiwi. Eia naʻe, hāpai aʻe kēia palapala i kekahi mau manaʻo e noʻonoʻo ai ke komo i kēia mau kamaʻilio ʻana ʻo ka hoʻomaka koho ʻana i ke kuanaʻike ʻŌiwi i ka haku ʻana he waihona ʻike hakuhia. He hoʻāʻo kēia wahi pepa kūlana e hōʻiliʻili i nā ʻano kamaʻilio like ʻole no 20 mahina, no 20 kāʻei hola, no ʻelua hālāwai hoʻonaʻauao, a ma waena hoʻi o kekahi mau poʻe ʻŌiwi (a ʻŌiwi ʻole hoʻi) no nā kaiāulu like ʻole i Aotearoa, Nū Hōlani, ʻAmelika ʻĀkau a me ka Pākīpika. ʻO ke kia nō naʻe, ʻaʻole ʻo ka hoʻolōkahi ʻana he leo. Paʻa nō ka ʻike ʻŌiwi i kekahi mau ʻāina a aupuni kikoʻī a puni ka honua. Hoʻohuli aku kēia mau ʻāina a mōʻaukala like ʻole i nā kaiāulu ʻokoʻa a me ko lākou mau kaʻina hana ʻŌiwi i ke au o ka manawa. ʻAʻohe “kuanaʻike ʻŌiwi hoʻokahi”, a hoʻomau a haku ʻia nā kālaikuhiʻike e ka hoʻokumu ʻana o kekahi mau kaiāulu kikoʻī i loko o kahi mau ʻāina. Ma mua, he hopena ulūlu o ke kālaikuhiʻike a kālaikuhikanaka ko ka loina naʻauao i hoʻāʻo e naʻi a hoʻohilimia i ka loina ʻŌiwi, a hoʻohāiki ʻia ke ʻano o ka manaʻo a kuanaʻike ʻŌiwi. ʻO ko mākou pahuhopu ke kālele ʻana i nā ʻōnaehana ʻike ʻŌiwi like ʻole a me ke ʻano o ka ʻenehana e hāpai i ka nīnau ʻo ka WʻIH. Ma muli o ia palena, a ma kahi o ka hoʻokuʻikuʻi ʻana he manaʻo lōkahi, he hōʻiliʻili kēia pepa kūlana o kēlā ʻano kēia ʻano o ka moʻokalaleo: ʻo nā manaʻo hoʻokele hakulau ʻoe,, ʻo ka ʻatikala akeakamai ʻoe, ʻo ka wehewehena o ka mana ʻenehana mua ʻoe , a ʻo ka poema ʻoe. I ko mākou manaʻo, he ʻolokeʻa kūpono maoli nā leo a kuanaʻike ʻokoʻa i ka ʻoiaʻiʻo he pae kinohi maoli nō kēia kamaʻilio ʻana, a he hōʻike i ka mea heluhelu no nā kuanaʻike i kupu mai i loko o nā hālāwai hoʻonaʻauao

Hél čhaŋkú kiŋ ȟpáye (There lies the road): How to Make Art in a Good Way

This dissertation explores the possibilities of the ethical creation of artwork using artificial intelligence (AI) through the development of protocols based on Lakȟóta ontologies, resulting in collaborative artworks collectively titled Hél čhaŋkú kiŋ ȟpáye (There lies the road). It investigates how Lakȟóta ontologies are well-suited for creating ethical and reciprocal relationships with the nonhuman and articulates that perspective in the context of creating performance artworks and collaborative art-making processes. This project is conducted in collaboration with the Lakȟóta communities diasporically, the Oglála Lakȟóta community in Pine Ridge Reservation, and diasporic Indigenous communities internationally. Through these collaborations, this dissertation has involved recordings, installations, performances, and written documents considering our current and future relationships to nonhumans with special consideration to digital technology in general and AI specifically—while articulating ethical processes which define who and what is in relation. It considers the acute necessity for engagement with Indigenous ontologies through research-creation in order to develop artworks and technologies in ethical ways. This dissertation 1) seeks to understand Indigenous ontologies, specifically Lakȟóta ontology, by collaboratively defining relationships to nonhuman beings through the process of art-making; 2) develops culturally-grounded methodologies to guide the creation and refinement of AI wearable and digital technologies through performance, sound art, and visual art practice; 3) develops the foundations for a specifically Lakȟóta Artificial Intelligence system; and 4) suggests Indigenous (Lakȟóta) research methods for research and creation in collaboration with Indigenous communities