Ethical issues in palliative care research

2021 ◽  
pp. 1312-1317
Author(s):  
Tyler Tate ◽  
David Casarett
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Ethical Issues ◽  
Research Participation ◽  
Ethical Aspects ◽  
Care Research ◽  
Qualitative And Quantitative ◽  
Decision Making Capacity ◽  
Potential Benefits

Recent growth in palliative care research has created a heterogeneous field that encompasses both qualitative and quantitative techniques, and descriptive as well as interventional studies. Despite the valuable knowledge that has been produced by this research, and the promise of future important advances, its progress has been impeded by a persistent uncertainty about the ethics of these studies. For instance, there have been concerns raised about whether patients near the end of life should ever be asked to participate in research, although others have objected to this extreme position. Nevertheless, the combination of ethical and practical issues can create substantial barriers to palliative care research. This chapter discusses five ethical aspects of palliative care research that investigators and clinicians should consider in designing and conducting palliative care research. These include (1) the study’s potential benefits to future patients, (2) the study’s potential benefits to subjects, (3) the study’s risks to subjects, (4) subjects’ decision-making capacity, and (5) the voluntariness of subjects’ choices about research participation.

Ethical issues in palliative care research

2015 ◽  
Author(s):  
David Casarett
Keyword(s):  
Palliative Care ◽  
Ethical Issues ◽  
Research Participation ◽  
Ethical Aspects ◽  
Interventional Study ◽  
Care Research ◽  
Qualitative And Quantitative ◽  
Decision Making Capacity ◽  
Potential Benefits ◽  
Study Designs

Recent growth in palliative care research has created a heterogeneous field that encompasses both qualitative and quantitative techniques, and descriptive as well as interventional study designs. Despite the valuable knowledge that has been produced by this research, and the promise of future important advances, its progress has been impeded by a persistent uncertainty about the ethics of these studies. For instance, there have been concerns raised about whether patients near the end of life should ever be asked to participate in research, although others have objected to this extreme position. Nevertheless, the combination of ethical and practical issues can create substantial barriers to palliative care research. This chapter discusses five ethical aspects of palliative care research that investigators and clinicians should consider in designing and conducting palliative care research. These include (1) the study’s potential benefits to future patients, (2) the study’s potential benefits to subjects, (3) the study’s risks to subjects, (4) subjects’ decision-making capacity, and (5) the voluntariness of subjects’ choices about research participation.

Ongoing Consent in Situations of Cognitive Vulnerability

2019 ◽  
pp. 3-14 ◽  
Author(s):  
Lauren R. Sankary ◽  
Paul J. Ford
Keyword(s):  
Clinical Trial ◽  
Decision Making ◽  
Ethical Issues ◽  
Cognitive Vulnerability ◽  
Research Participation ◽  
Proxy Consent ◽  
Decision Making Capacity ◽  
Research Oversight ◽  
Vulnerable Patient ◽  
Study Participants

This chapter explores ethical issues in obtaining ongoing consent for clinical research involving cognitively vulnerable patient populations. Stakeholders in these challenges include researchers, sponsors, study participants, caregivers and other legally authorized representatives, and research oversight boards. First, this chapter examines existing conceptual frameworks and proposed safeguards for the protection of cognitively vulnerable research participants, including double consent, proxy consent with participant assent, advance consent, and process consent. This chapter then proposes an inclusionary approach to obtaining ongoing consent to research participation when cognition could fluctuate over the course of research participation. Proposed safeguards and modifications to the consent process should address duration of research participation, the nature and timing of research-related risks, expected and unexpected fluctuations in decision-making capacity, and the process of exiting a clinical trial. The proposed framework is then applied to the specific context of implanted neural device trials, with special attention to considerations for device explant.

Specific Ethical Issues at the End of Life (DRAFT)

2018 ◽  
Author(s):  
Robert C. Macauley
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
Ethical Issues ◽  
Care Planning ◽  
High Burden ◽  
Code Status ◽  
Decision Making Capacity ◽  
Advance Care

A specific application of advance care planning has to do with determining the “code status” of a patient. Many of the terms used to document this status are misunderstood or carry unfortunate connotations, such as “DNR.” It is more appropriate to refer to a “Do Not Attempt Resuscitation” (DNAR), to emphasize the uncertainty as to whether attempted resuscitation will be successful. Code status is especially relevant to patients who “want everything,” which may include high-burden and low-benefit procedures. Time-limited trials and Do Not Escalate Treatment orders may be considered in those situations. There may also be situations when a patient’s refusal should be overridden, when the patient’s decision-making capacity is compromised.

End-of-life care for patients with mental illness and personality disorders

2015 ◽  
pp. 618-627 ◽  
Author(s):  
Betty D. Morgan
Keyword(s):  
Decision Making ◽  
Mental Illness ◽  
Palliative Care ◽  
Personality Disorders ◽  
End Of Life ◽  
Serious Mental Illness ◽  
Mentally Ill ◽  
End Of Life Care ◽  
Ethical Issues ◽  
Life Care

This chapter examines what is known about palliative care and the mentally ill, including those with serious mental illness (SMI) and personality disorders (PDs). Special issues related to communication and treatment are presented as well as strategies for care for this population. Ethical issues including capacity and competency for decision-making as it relates to those with SMI and end-of-life care are also discussed. Collaboration and consultation between providers is essential in providing end-of-life care for those with SMI.

Decision-making capacity for research participation among individuals in the CATIE schizophrenia trial

2005 ◽  
Vol 80 (1) ◽  
pp. 1-8 ◽  
Author(s):  
Scott Stroup ◽  
Paul Appelbaum ◽  
Marvin Swartz ◽  
Mukesh Patel ◽  
Sonia Davis ◽  
...  
Keyword(s):  
Decision Making ◽  
Research Participation ◽  
Decision Making Capacity

scholarly journals Transitions in decision-making authority at the end of life: a problem of law, ethics and practice in deceased donation

2020 ◽  
pp. medethics-2020-106572
Author(s):  
Shih-Ning Then ◽  
Dominique E Martin
Keyword(s):  
Decision Making ◽  
Organ Donation ◽  
End Of Life ◽  
Decision Maker ◽  
Legal Authority ◽  
Time Of Death ◽  
Medical Decisions ◽  
Ethical Concerns ◽  
Decision Making Capacity ◽  
Practical Implications

Where a person is unable to make medical decisions for themselves, law and practice allows others to make decisions on their behalf. This is common at the end of a person’s life where decision-making capacity is often lost. A further, and separate, decision that is often considered at the time of death (and often preceding death) is whether the person wanted to act as an organ or tissue donor. However, in some jurisdictions, the lawful decision-maker for the donation decision (the ‘donation decision-maker’) is different from the person who was granted decision-making authority for medical decisions during the person’s life. To date, little attention has been given in the literature to the ethical concerns and practical problems that arise where this shift in legal authority occurs. Such a change in decision-making authority is particularly problematic where premortem measures are suggested to maximise the chances of a successful organ donation. This paper examines this shift in decision-making authority and discusses the legal, ethical and practical implications of such frameworks.

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