Anticipated impacts of voluntary assisted dying legislation on nursing practice.

BACKGROUND: The Voluntary Assisted Dying Act 2017 passed into law in Victoria, Australia, on the 29 November 2017. Internationally, nurses have been shown to be intimately involved in patient care throughout the voluntary assisted dying process. However, there is a paucity of research exploring Australian nurses' perspectives on voluntary assisted dying and, in particular, how Victorian nurses anticipate the implementation of this ethically controversial legislation will impact their professional lives. OBJECTIVES: To explore Victorian nurses' expectations of the ethical and practical impacts the voluntary assisted dying legislation will have on their professional lives. RESEARCH DESIGN: This qualitative study analysed nurses' free text responses collected as part of a larger mixed methods online survey investigating staff views on the Voluntary Assisted Dying Act. Data were collected during the period between the passing of the voluntary assisted dying legislation and the start date and were analysed using inductive content analysis. PARTICIPANTS AND RESEARCH CONTEXT: Free text survey responses were analysed from 1873 nurses employed across seven Victorian health services located in both metropolitan and regional areas of the state. ETHICAL CONSIDERATIONS: The study obtained research ethics approval and all participants were informed of the voluntary and anonymous nature of their participation. FINDINGS: This study identified three broad areas of Victorian nurses' professional lives that they expected to be impacted by the implementation of voluntary assisted dying: professional identity, career development and workplace relationships. CONCLUSION: Participants anticipate diverse and nursing-specific impacts of the implementation of voluntary assisted dying in Victoria. Their insights can inform health services in jurisdictions considering or already implementing voluntary assisted dying, to develop policies, procedures and staff training programmes that safeguard the well-being and legal rights of their nursing staff.

The active identification and management of chronic refractory breathlessness is a human right.

Chronic refractory breathlessness is defined as breathlessness at rest or on minimal exertion that will persist chronically despite optimal treatment of the underlying cause(s). At any time, 1% of the population report a modified Medical Research Council dyspnoea score of ≥ 3 chronically. Despite the prevalence, severity and chronicity of this symptom and an evidence base of affordable and safe interventions, chronic refractory breathlessness remains grossly undertreated. Many patients and clinicians accept the presence of the chronic refractory breathlessness as an inevitable part of an illness, with no thought of treating the symptom despite an evidence base for its safe treatment. Consensus statements from major respiratory clinician organisations now endorse such a clinical course. Failure to inquire about, assess and properly treat chronic refractory breathlessness with opioids as outlined in specialist clinical guidelines is now an unacceptable level of care ethically and is, arguably, a breach of people's human rights. Adequate pain control through access to pain relief is now accepted as a human right and, given its burden across the world, the symptomatic treatment of chronic refractory breathlessness should be seen in exactly the same way.

Informed consent in palliative care clinical trials: challenging but possible.

Obtaining informed consent is a key protection that should be afforded universally to people using health services and the basis around which any participation in clinical trials is built. Randomized controlled effectiveness studies are necessary to answer key questions in hospice and palliative care, in order to help systematically improve the quality of care. In order to be properly generalizable, such trials need to have broad inclusion criteria to reflect the population most likely to be affected by the condition. The inclusion of patients who are seriously ill, and therefore potentially vulnerable, requires careful exploration of ethical and legal principles that underpin informed consent. Specific challenges in obtaining informed consent for randomised clinical trials (RCTs) in clinically unstable populations such as hospice and palliative care include higher rates of people with impaired cognitive capacity as well as interventional studies in clinical situations which may present as a sudden change in condition. None of these challenges is unique to hospice and palliative care research, but the combination and frequency with which they are encountered require systematic and considered solutions. This article outlines five different ethically valid consent approaches and discusses their applicability to hospice and palliative care research trials. These include: consent by the patient (at the time of enrolment, in advance of the study, or delayed until after the study has commenced); a proxy (or legally authorised representative); or a consent waiver. Increased use of the less traditional modes of informed consent may lead to greater participation rates in hospice and palliative care trials, thereby improving the evidence base more rapidly in part by better reflecting the population served and hence improving generalizability.

Improving access to palliative care through an innovative quality improvement initiative: an opportunity for pay-for-performance.

BACKGROUND: Improving access to palliative care is an important priority for hospitals as they strive to provide the best care and quality of life for their patients. Even in hospitals with longstanding palliative care programs, only a small proportion of patients with life-threatening illnesses receive palliative care services. Our two well-established palliative care programs in large academic hospitals used an innovative quality improvement initiative to broaden access to palliative care services, particularly to noncancer patients. METHODS: The initiative utilized a combination of electronic and manual screening of medical records as well as intensive outreach efforts to identify two cohorts of patients with life-threatening illnesses who, according to University HealthSystems Consortium (UHC) benchmarking criteria, would likely benefit from palliative care consultation. Given the differing cultures and structure of the two institutions, each service developed a unique protocol for identifying and consulting on suitable patients. RESULTS: Consultation rates in the target populations tripled following the initiative: from 16% to 46% at one hospital and from 15% to 48% at the other. Although two different screening and identification processes were developed, both successfully increased palliative care consultations in the target cohorts. CONCLUSION: Quality improvement strategies that incorporate pay-for-performance incentives can be used effectively to expand palliative care services to underserved populations.

Ethical issues in palliative care.

Ethical problems in medicine are common, especially when caring for patients at the end of life. However, many of these issues are not adequately identified in the outpatient setting. Primary care providers are in a unique and privileged position to identify ethical issues, prevent future conflicts, and help patients make medical decisions that are consistent with their individual values and preferences. This article describes some of the more common ethical issues faced by primary care physicians caring for patients with life-limiting illness.