Fostering medical staff reflection on the technological alienation of parents in the NICU

We describe a case of parents refusing a tracheostomy for an otherwise healthy newborn. The refusal was not honored because permitting the refusal would have violated state law, which required a child to have a qualifying condition (e.g. a terminal diagnosis, permanent unconsciousness, incurable condition with severe suffering) to remove or withhold life-sustaining treatment. However, this case strained the relationship between the parents and medical staff, who worried about sending the newborn home with a tracheostomy where she was not wanted. While many ethical issues arise in treatment refusal cases like this, we focus on the opportunity for ethicists to help the medical staff reflect on the technological alienation of the parents, which may help foster empathy, reduce moral distress, and strengthen the quality of the doctor-parent-patient triad.

Consent or Caring? Issues of Autonomy and Paternalism in the Treatment of Anorexia Nervosa

<p>Denial is a characteristic feature of anorexia nervosa (AN) that may lead to treatment refusal. If an individual is refusing treatment autonomously, it should be accepted, while a lack of autonomy indicates paternalistic intervention may be justified. AN has the highest mortality rate of any mental disorder, so accepting refusal means accepting the risk of death, so should only be done with the certainty that it is autonomous. The current research is theoretical, reviewing the literature on ethical issues relating to autonomy and paternalism in AN in order to evaluate the evidence base for these assumptions. The aim is to develop a procedural model for establishing autonomy in those with AN. The result is the anorexia nervosa autonomous decision-making model (ANDMM), which provides guidance for responding to autonomous and non-autonomous treatment refusal.</p>

Consent or Caring? Issues of Autonomy and Paternalism in the Treatment of Anorexia Nervosa

<p>Denial is a characteristic feature of anorexia nervosa (AN) that may lead to treatment refusal. If an individual is refusing treatment autonomously, it should be accepted, while a lack of autonomy indicates paternalistic intervention may be justified. AN has the highest mortality rate of any mental disorder, so accepting refusal means accepting the risk of death, so should only be done with the certainty that it is autonomous. The current research is theoretical, reviewing the literature on ethical issues relating to autonomy and paternalism in AN in order to evaluate the evidence base for these assumptions. The aim is to develop a procedural model for establishing autonomy in those with AN. The result is the anorexia nervosa autonomous decision-making model (ANDMM), which provides guidance for responding to autonomous and non-autonomous treatment refusal.</p>

Relational Autonomy, the Right to Reject Treatment, and Advance Directives in Japan

Although the patient’s right to decide what they want for themselves, which is encompassed in the notion of ‘patient-centred medicine’ and ‘informed consent’, is widely recognised and emphasised in Japan, there remain grave problems when it comes to respecting the wishes of the no-longer-competent when death is imminent. In general, it is believed that the concepts above do not include the right to refuse treatment when treatment withdrawal inevitably results in death, even when the patient previously expressed the wish to exercise this right when competent. In this paper, I first explain the current social and legal situation in Japan, where the lack of legal clarity regarding the right to reject treatment tends to result in doctors adopting the interpretation of patients’ words that is least conducive to treatment withdrawal. I then argue that the right to refuse treatment should be taken seriously, even when the patient is no longer competent, or the treatment refusal will result in death. I suggest that the concept of relational autonomy might have some practical and valuable implications in a country where individual autonomy is considered incompatible with societal values. Finally, I answer possible objections to relational autonomy and address the widespread societal concern about sliding down the slippery slope from allowing the right to refuse treatment to the obligation to die.

Irremediable psychiatric suffering in the context of physician assisted death: a Delphi-study

Background Patients with a psychiatric disorder (PPD) are eligible to request physician assisted death (PAD) in a small but growing number of jurisdictions, including the Netherlands and Belgium. For this request to be granted, most of these jurisdictions demand that the patient is competent in her request, and that the suffering experienced is unbearable and irremediable. Especially the criterion of irremediability is challenging to establish in patients with psychiatric disorders. Aims To establish what criteria Dutch and Belgian experts agree to be essential in characterising irremediable psychiatric suffering (IPS) in the context of PAD. Method A two round Delphi procedure among psychiatrists with relevant experience. Results Thirteen consensus-criteria were established: five diagnostic and eight treatment-related criteria. Diagnostically, the participants deem a narrative description and attention to contextual and systemic elements necessary. Also, a mandatory second opinion is required. The criteria concerning treatment show that extensive biopsychosocial treatment is needed, and the suffering must be present for several years. Finally, in the case of treatment refusal, the participants agree that there are limits to the number of diagnostic procedures or treatments a patient must undergo. Conclusions Consensus was found among a Dutch and Belgian expert group on essential criteria for establishing IPS in the context of PAD. These criteria can be used in clinical decision making and can inform future procedural demands and research.

Outcomes after initial refusal of curative treatment in patients with Hodgkin’s lymphoma in British Columbia.

e19518 Background: Classical Hodgkin lymphoma (cHL) is considered a highly curable cancer. With standard combination chemotherapy regimens, long-term survival exceeds 95% for limited-stage and 85% for advanced-stage patients. Despite these excellent outcomes some patients delay or decline conventional treatment for cHL. We retrospectively assessed the impact of initial treatment refusal on outcomes of patients with cHL in British Columbia (BC). Methods: Using the BC Cancer Lymphoid Cancer Database, we identified all patients aged 18-70 diagnosed between 1st Jan 1999- 31st Dec 2020 that had documented treatment refusal at initial presentation (‘refusers’ defined as not receiving or delaying treatment > 16 weeks). We identified a control cohort (min. 3 controls/refuser) treated within 8 weeks of diagnosis, matched for age, stage, diagnosis date within 3 years, and blinded for outcome. All patients had centrally reviewed biopsies and were treated with ABVD or ABVD-like regimens +/- radiotherapy if appropriate. Patient and disease characteristics at baseline and at time of treatment were analyzed with Chi-squared test and one-way ANOVA test. The Kaplan-Meier method was used to assess progression-free survival (PFS) and overall survival (OS), and statistical significance between groups was determined using the log-rank test. Results: We identified a cohort of 15 patients who initially refused treatment and 47 matched controls. The control cohort was well-matched, with no statistically significant differences in baseline characteristics (age, sex, Ann Arbor stage, B symptoms, International Prognostic Score (IPS) score, ECOG PS, and disease bulk) between groups. The most common reason for initial treatment refusal was to pursue alternative therapy (73%). 13 of 15 refusers eventually accepted treatment (mean time to treatment 76 weeks [range 26-214] vs. 5 weeks [range 1-8] for controls, p < 0.001). At time of treatment, the proportion of refusers with advanced-stage disease increased from 20% to 62% (p = 0.03) and had an associated alteration of treatment plan, and 62% of patients developed higher risk disease with increased IPS score (p = 0.02). At median follow-up of 5 years (0.4-21 years) for all living patients, estimated 5-year PFS was 65% vs 84%, and 5-year OS was 93% vs 98% for refusers and controls respectively. With extended follow up, 13% of refusers (1 late death at 8 years) compared to only 4% of controls died of cHL specifically. Conclusions: This study highlights the impact of treatment refusal in this highly curable malignancy. Initial refusal of treatment is associated with progression of stage, worsening prognostic score, escalation to more prolonged treatment than required at diagnosis, and increased risk of death from cHL. This analysis may help to provide guidance to counselling physicians, as well as inform patients who may be considering alternatives to standard of care for cHL.