Narrative medicine: A comparison of terminal cancer patients’ stories from a Dutch hospice with those of Anatole Broyard and Christopher Hitchens

Florijn, Barend W.; Graaf, H. van der; Schoones, Jan W.; Kaptein, Adrian A.

doi:10.1080/07481187.2018.1504350

Cited by 9 publications

(6 citation statements)

References 49 publications

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“…Furthermore, physicians inform patients about their situation and prospects and assess whether there are no reasonable alternatives to relieve suffering. This suggests physicians have a role in enhancing patients' autonomy in their decision making for physicianassisted death, in a practice of "interpretation through dialogue in service of the patient's health" (Florijn et al 2019;Sveneaeus 2018). Only this model, in which the physician and patient engage together in a dialogue, guarantees a safe practice of physician-assisted death and allows physicians to invoke force majeure upon performing physician-assisted death.…”

Section: The Ruling Of the Supreme Court Part I: The Physician-patient Relationship Is Indispensable In Guaranteeing A Practice Of Due Camentioning

confidence: 99%

From Reciprocity to Autonomy in Physician-Assisted Death: An Ethical Analysis of the Dutch Supreme Court Ruling in the Albert Heringa Case

Florijn

2020

The American Journal of Bioethics

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In 2002, the Dutch Euthanasia Act was put in place to regulate the ending of one's life, permitting a physician to provide assistance in dying to a patient whose suffering the physician assesses as unbearable. Currently, a debate in the Netherlands concerns whether healthy (older) people who value their life as completed should have access to assistance in dying based on their autonomous decision making. Although in European law a right to self-determination ensues from everyone's right to private life, the Dutch Supreme Court recently adopted a position on whether the Dutch Euthanasia Act lacks adequate attention to a patient's autonomous decision making. Specifically, in the Albert Heringa case, the Court ruled that the patient-physician relationship as understood in the Dutch Euthanasia Act limits this plea for more self-determination. This ethical analysis of the Heringa case examines how the Supreme Court's understanding of the Euthanasia Act defines patient autonomy within a reciprocal patient-physician relationship.

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Section: The Ruling Of the Supreme Court Part I: The Physician-patient Relationship Is Indispensable In Guaranteeing A Practice Of Due Camentioning

confidence: 99%

From Reciprocity to Autonomy in Physician-Assisted Death: An Ethical Analysis of the Dutch Supreme Court Ruling in the Albert Heringa Case

Florijn

2020

The American Journal of Bioethics

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“…Thinking with stories is a narrative competence that comes instead of thinking 'about stories', thereby allowing the narrative to naturally work on us, instead of conceiving narratives as an object 7 . We previously used novels to provide such a perspective 8 – 10 and analyzed the language of illness perceptions in patient stories 11 . It is unknown however, how figurative language and the use of metaphors function in the Parkinson’s disease experience and whether they influence factors such as physician-patient interaction, the decision to initiate treatment, or treatment adherence.…”

Section: Introductionmentioning

confidence: 99%

Narrative medicine pinpoints loss of autonomy and stigma in Parkinson’s disease

Florijn,

Kloppenborg,

Kaptein

et al. 2023

npj Parkinsons Dis.

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Parkinson’s disease characteristics can create a self-perceived sense of stigmatization and disapproval by others, thereby affecting self-perceived autonomy. This study investigated the metaphors related to the loss of autonomy and stigma in stories and drawings of Parkinson’s disease. We compare a contemporary first-person illness narrative and -drawing from a person with Parkinson’s disease, with two novels (Jonathan Franzen’s The Corrections and Claudia Piñeiro’s Elena Knows), a graphic novel (Peter Dunlap-Shohl’s My Degeneration: A Journey Through Parkinson’s), a non-fiction book (Oliver Sacks’ Awakenings) and a first-person illness narrative (John Palfreman’s The Bright Side of Parkinson’s). Metaphors in the patient narrative, novels, and non-fiction work were reviewed and a list of themes or categorizations common to 2 of the metaphors was generated. Parkinson’s disease metaphors indicate a ‘Parkinson’s prism’ thereby depicting extreme experiences (24.4%) like a ‘fall by mischance’, a ‘tantrum of selfish misery’ or a ‘bottomless darkness and unreality’ (Table 1). Both novels signify a sense of ‘betrayal and disconnection’ in the Parkinson’s disease experience while non-fiction of Parkinsonism depicts a space in which one feels ‘caged and deprived’. This makes the Parkinson’s disease narrative a chaos story that could influence the decision to initiate treatment and treatment adherence. We conclude that narrative medicine can help to focus the medical consultations with affected individuals on issues that matter most to them, thereby improving self-perceived autonomy and stigma. As such, it is a critical component of the much-needed move towards personalized medicine in Parkinson’s disease, achieved through the reciprocity of thinking with stories.

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“…Physician and patient together decide when there is in all reasonableness no other solution to alleviate the patient’s suffering other than to end the patient’s life. This presupposes a vital patient-physician relationship centered around a practice of narrative ethics that respects people’s story of suffering (often unbearable suffering rooted in a medical condition, but for older persons also due to social isolation and loneliness) to improve people’s informed decision …”

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confidence: 98%

Narrative Ethics in Response to Unbearable Suffering—the Dutch Slippery Slope Is Nonexistent

Florijn

Kaptein

2021

JAMA Intern Med

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To the Editor This letter is in reference to the recently published Editorial by Meier. 1 Meier argues that the study by van den Berg et al 2 demonstrates that euthanasia or physician-assisted suicide (EAS) is a "quick, easy, and inexpensive" 1(p160) intervention offered in response to unbearable suffering attributable to multiple geriatric syndromes. Furthermore, absence of regulatory constraints to contain physician-assisted death may underscore real societal harms in the Netherlands.First, do physicians in the Netherlands follow "only vague" criteria before administering EAS? 1 Not true. In fact, the provision of EAS in the Netherlands is a violation of the criminal code. On performing EAS, physicians invoke force majeure, a legal concept based on an emergency situation instigated by a conflict of duties. This moral conflict consists of a physician's duty to protect life and a physician's duty to relieve suffering. Physicians are not punishable for invoking force majeure and when EAS is performed in accord with the statutory due care criteria laid down in article 2 of the Euthanasia Act. 3 As such, physicians' assessment of unbearable suffering ensures due care in carrying out EAS.Second, does permissive access to EAS and its expansion to older people with multiple geriatric syndromes reduce the responsibility to advocate for the continued life of the patient? 1 Not true. Physician and patient together decide when there is in all reasonableness no other solution to alleviate the patient's suffering other than to end the patient's life. This presupposes a vital patient-physician relationship centered around a practice of narrative ethics that respects people's story of suffering (often unbearable suffering rooted in a medical condition, but for older persons also due to social isolation and loneliness) to improve people's informed decision. 4 Third, does the study by van den Berg et al 2 underscore societal harm in the Netherlands in which access to EAS invokes the possibility that a right becomes an obligation? 1 Again, not true. The Dutch Euthanasia Act formulates due care requirements for physicians and does not delineate patients' rights. 5 According to the due care requirements, the patient's request should not only be voluntary, but also well considered. This again pinpoints narrative ethics that enable patients' clear insight into illness to make careful assessment of their story based on sufficient information provided by the physician.In conclusion, Meier's slippery slope argument is modest in the practical counsel it offers. Instead of pinpointing societal harm in the Netherlands, one could acknowledge that even though various moral principles can conflict in the moral life, decision-making in morality and public policy progresses with reasoning through difficult cases. 3 Therefore, the debate in the Netherlands, centered around how physicians should respond to unbearable suffering, is not societal harm but a narrative ethics approach that demonstrates "society's ability to surround its citizens...

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Narrative medicine: A comparison of terminal cancer patients’ stories from a Dutch hospice with those of Anatole Broyard and Christopher Hitchens

Cited by 9 publications

References 49 publications

From Reciprocity to Autonomy in Physician-Assisted Death: An Ethical Analysis of the Dutch Supreme Court Ruling in the Albert Heringa Case

From Reciprocity to Autonomy in Physician-Assisted Death: An Ethical Analysis of the Dutch Supreme Court Ruling in the Albert Heringa Case

Narrative medicine pinpoints loss of autonomy and stigma in Parkinson’s disease

Narrative Ethics in Response to Unbearable Suffering—the Dutch Slippery Slope Is Nonexistent

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