scholarly journals “No thanks, I don’t want to see snakes again”: a qualitative study of pain management versus preservation of cognition in palliative care patients

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Pete Wegier ◽  
Jaymie Varenbut ◽  
Mark Bernstein ◽  
Peter G. Lawlor ◽  
Sarina R. Isenberg
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Pain Management ◽  
Pain Relief ◽  
Decision Aids ◽  
Opioid Analgesics ◽  
Structured Interviews ◽  
Difficult Decision ◽  
Home Based ◽  
Control Pain

Abstract Background Towards the end of life, use of opioid analgesics becomes more common in patients to control pain and improve quality of life. While pain medication may help manage pain, unwanted cognitive side effects are frequently noted. This balancing act presents a trade-off for patients between pain relief and adverse effects, where the desire to relieve pain must be evaluated against the desire to maintain cognitive clarity and may represent a difficult decision for patients receiving palliative care. Our goal was to understand how patients’ decision making about pain medications balances the pain relief from those medications against the cognitive decline often associated with them. Methods We conducted qualitative semi-structured interviews with patients receiving home-based palliative care from a program in Toronto, Canada. Interview recordings were transcribed and analyzed using thematic analysis. Results Thirty-one interviews were conducted. Some patients preferred cognitive preservation over pain management because of a sense that cognition is central to their identity, the desire to maintain lucidity, a desire to continue participating in work or hobbies, and fear of addiction. Conversely, some patients preferred pain management over cognitive preservation because of a desire to avoid suffering, an inability to sleep without medications, or an acceptance of some cognitive compromise. A few patients attempted to find balance through tapering drugs, limiting their use of breakthrough analgesic doses, or using alternative strategies. Conclusions Decision making around pain and pain management is a highly preference-sensitive process—with no clear right or wrong decisions, only the preferences of each patient. The findings from this study may influence the design of future patient-facing decision aids around pain management. Future studies should pilot interventions to better assist patients with this decision.

scholarly journals “No Thanks, I Don’t Want to See Snakes Again”: A Qualitative Study of Pain Management Versus Preservation of Cognition in Palliative Care Patients

2020 ◽  
Author(s):  
Pete Wegier ◽  
Jaymie Varenbut ◽  
Mark Bernstein ◽  
Peter G Lawlor ◽  
Sarina R Isenberg
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Pain Management ◽  
Pain Relief ◽  
Decision Aids ◽  
Opioid Analgesics ◽  
Structured Interviews ◽  
Difficult Decision ◽  
Home Based ◽  
Control Pain

Abstract BackgroundTowards the end of life, use of opioid analgesics becomes more common in patients to control pain and improve quality of life. While pain medication may help manage pain, unwanted cognitive side effects are frequently noted. This balancing act presents a trade-off for patients between pain relief and adverse effects, where the desire to relieve pain must be evaluated against the desire to maintain cognitive clarity and may represent a difficult decision for patients receiving palliative care. Our goal was to understand how patients’ decision making about pain medications balances the pain relief from those medications against the cognitive decline often associated with them.MethodsWe conducted qualitative semi-structured interviews with patients receiving home-based palliative care from a program in Toronto, Canada. Interview recordings were transcribed and analyzed using thematic analysis.ResultsThirty-one interviews were conducted. Some patients preferred cognitive preservation over pain management because of a sense that cognition is central to their identity, the desire to maintain lucidity, a desire to continue participating in work or hobbies, and fear of addiction. Conversely, some patients preferred pain management over cognitive preservation because of a desire to avoid suffering, an inability to sleep without medications, or an acceptance of some cognitive compromise. A few patients attempted to find balance through tapering drugs, limiting their use of breakthrough analgesic doses, or using alternative strategies. ConclusionsDecision making around pain and pain management is a highly preference-sensitive process—with no clear right or wrong decisions, only the preferences of each patient. The findings from this study may influence the design of future patient-facing decision aids around pain management. Future studies should pilot interventions to better assist patients with this decision.

scholarly journals “No thanks, I don’t want to see snakes again”: A qualitative study of pain management versus preservation of cognition in palliative care patients

2020 ◽  
Author(s):  
Pete Wegier ◽  
Jaymie Varenbut ◽  
Mark Bernstein ◽  
Peter G Lawlor ◽  
Sarina R Isenberg
Keyword(s):  
Palliative Care ◽  
Pain Management ◽  
Pain Relief ◽  
Decision Aids ◽  
Opioid Analgesics ◽  
Structured Interviews ◽  
Difficult Decision ◽  
Pain Medications ◽  
Home Based ◽  
Control Pain

Abstract BackgroundTowards the end of life, use of opioid analgesics becomes more common in patients to control pain and improve quality of life. While pain medication may help manage pain, unwanted cognitive side effects are frequently noted. This balancing act presents a trade-off for patients between pain relief and adverse effects, where the desire to relieve pain must be evaluated against the desire to maintain cognitive clarity and may represent a difficult decision for patients receiving palliative care. Our goal was to understand how patients’ decision making about pain medications balances the pain relief from those medications against the cognitive decline often associated with them.MethodsWe conducted qualitative semi-structured interviews with patients receiving home-based palliative care from a program in Toronto, Canada. Interview recordings were transcribed and analyzed using thematic analysis.ResultsThirty-one interviews were conducted. Some patients preferred cognitive preservation over pain management because of a sense that cognition is central to their identity, the desire to maintain lucidity, a desire to continue participating in work or hobbies, and fear of addiction. Conversely, some patients preferred pain management over cognitive preservation because of a desire to avoid suffering, an inability to sleep without medications, or an acceptance of some cognitive compromise. A few patients attempted to find balance through tapering drugs, limiting their use of breakthrough analgesic doses, or using alternative strategies. ConclusionsDecision making around pain and pain management is a highly preference-sensitive process—with no clear right or wrong decisions, only the preferences of each patient. The findings from this study may influence the design of future patient-facing decision aids around pain management. Future studies should pilot interventions to better assist patients with this decision.

scholarly journals Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

2021 ◽  
pp. 104990912110126
Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Yujun Zhu ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Insurance Coverage ◽  
Healthcare Providers ◽  
Health Condition ◽  
Insurance Companies ◽  
Structured Interviews ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

scholarly journals Experts' views on the implementation of the prenatal screening decision aid in Iran: A qualitative study

2021 ◽  
Author(s):  
Razieh Zahedi ◽  
Leila Nemati-Anaraki ◽  
Shahram Sedghi ◽  
Mamak Shariat
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Decision Aid ◽  
Prenatal Screening ◽  
Decision Aids ◽  
Personal Factors ◽  
Snowball Sampling ◽  
Structured Interviews ◽  
Patient Decision Aids ◽  
Patient Decision

Background & Aim: Patient decision aids are detailed and personalized health education materials that assist patients in decision making. According to expert viewpoints, this study aimed to determine important factors in implementing the prenatal screening decision aid in Iran. Methods & Materials: In this qualitative study, 24 experts, including seven obstetricians, four information scientists, five managers or policymakers, and eight midwives, were selected using purposive and snowball sampling approaches. Semi-structured interviews were conducted to collect the data between January 2020 and June 2020 in Tehran, Iran. A prenatal screening decision aid was presented to the participants, and we asked them to raise their concerns and thoughts regarding the factors influencing the implementation of patient decision aids. We used MAXQDA 10 and applied conventional content analysis for data analysis. Results: Two organizational and personal factors themes were identified to implement Iran's prenatal screening decision aids. Conclusion: We identified the viewpoints of experts regarding major factors in patient decision aids implementation for prenatal screening. Before implementing prenatal screening decision aids in Iran, it would be helpful to consider these organizational and personal factors. Prenatal screening decision aids can provide better information for pregnant women and strengthen their decision-making ability.

Informed Consent for Epidural Analgesia at the Time of Labor Pain, Seems Too Late!

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Bastanhagh E ◽  
◽  
Behseresht A ◽  
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Pain Management ◽  
Epidural Analgesia ◽  
Pain Treatment ◽  
Decision Aids ◽  
Treatment Options ◽  
Labor Pain ◽  
Lumbar Epidural Analgesia ◽  
Decision Making Capacity

Pain in the process of childbirth is the phenomenon mostly feared by every woman in her pregnancy, and is a major cause of dissatisfaction and embarrassing memories of labor. Usage of lumbar epidural analgesia as a very effective pain management option has solved this problem to a great extent, and its utilization has turned to common practice in most of the women hospitals worldwide. The use of lumbar epidural analgesia in labor is widespread due to its benefits in terms of effective pain relief in comparison with other labor pain treatment options [1]. Vaginal delivery is an extremely painful process accompanied with great emotional disturbance, which may not be possible for the laboring mother to focus and concentrate to understand the anesthetist explanations at that moment and sign the epidural analgesia informed consent properly. On one hand, the laboring mother expresses doubts because of uncertainty on her decision and on the other hand she desperately wants to get rid of the excruciating labor pain by any means possible. Therefore, the decision to have a neuraxial analgesia (epidural, combined spinal epidural) sounds obligatory on this condition. Each of these analgesic methods beside desirable effectiveness in pain management may have some side effects and it is obvious that each complication takes lots of time and patiently concentration for the mother to be precisely understood and the decision making is even beyond of it. Decision making process cannot get precisely completed just in labor time, so free of any upcoming complication, informed consent may not be ethically verified on labor time. Decision making capacity is a complex mental process involving both cognitive and emotional components. Sometimes this complex action is reduced to “understanding” alone. There are uncertainties about decision-making capacity (mental competence) of women in labor in relation to giving informed consent to neuraxial analgesia. Considering these parameters, sufficient information about pain management methods (advantages, side effects, the way each procedure is conducted) should be provided as part of prenatal education and the consent process must be carefully conducted to enhance mothers’ autonomy [2]. To utilize effective methods for presenting the mothers with (like multimedia modules, recorded video of the sample procedure and so on) in late pregnancy should be considered to achieve better understanding and right decision. Patient decision aids are beneficial in clinical anesthesia and studies have shown that patients feel better informed, have better knowledge, and have less anxiety, depression and decisional conflicts after using this method [3]. It has been demonstrated that using decision aids prior to the procedure can significantly reduce the decision conflict, and improve both autonomy and outcome as a united benefit in favor of laboring mothers [4]. It seems that pain-relieving methods (neuraxial and other treatment options) should be described in details at the second and third trimester of pregnancy by a team consist of midwife, anesthesia provider and obstetrician. The more time is spent on this process; the better informed consent is achieved finally. Also high quality decision aids can increase women’s familiarity with medical terminology, options for care, and an insight into personal values, thereby decreasing decisional conflicts and increase knowledge [5]. Factors like parity, pain threshold, and estimated length of labor should be considered together in the decision process to individualize the best pain treatment option for mother [6].

Comparing Digital vs Paper Decision Aids about the Use of Antipsychotic Medication: Client, Clinician, Caregiver and Administrator Perspectives

2017 ◽  
Vol 7 (1) ◽  
pp. 21-30
Author(s):  
Yaara Zisman-Ilani ◽  
Ksenia O Gorbenko ◽  
David Shern ◽  
Glyn Elwyn
Keyword(s):  
Decision Making ◽  
Decision Aids ◽  
Digital Technologies ◽  
Psychiatric Medication ◽  
Structured Interviews ◽  
Medical Decisions ◽  
Digital Devices ◽  
Stakeholder Groups ◽  
Digital Format ◽  
History Of

Objective: Decision Aids (DAs) help patients participate in medical decisions. DAs can be in paper or digital format, but little is known about the readiness of people with psychosis to use digital technologies for decision-making in psychiatry. We evaluated attitudes and readiness for digital DAs among four stakeholder groups: people with psychosis, clinicians, caregivers, and administrators.Methods: Semi-structured interviews included 19 respondents: six people with a history of psychosis (clients), six clinicians, five caregivers, and two administrators. We recorded, transcribed, and coded interviews for themes using a qualitative inductive analytic process.Results: Our analysis revealed three key themes addressing readiness for involvement in an interactive digital decision-making: (1) preferences for paper DAs; (2) disadvantages of digital DAs (lack of computer skills, lack of access to digital devices, compounded by clients’ age and socioeconomic status); (3) advantages of digital DAs (accessibility to illiterate people or those with disabilities, decrease in cognitive burden).Conclusions: Our study suggests that the introduction of digital DAs into psychiatric medication consultations could be potentially well received. Appropriate training and access to digital devices may facilitate the adoption of digital DAs in mental health care. 

scholarly journals 233 Potential Deprivation of Patient Liberty: A Qualitative Study of Current Practice Amongst Geriatricians in a Tertiary Setting

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii17-iii65
Author(s):  
Michelle O'Brien ◽  
Deirdre O'Donnell ◽  
Barbara Clyne
Keyword(s):  
Decision Making ◽  
Perceived Risk ◽  
Current Practice ◽  
Structured Interview ◽  
Structured Interviews ◽  
Healthcare Ethics ◽  
Patient Decision Making ◽  
Acute Setting ◽  
Difficult Decision ◽  
Patient Decision

Abstract Background The Assisted Decision Making (ADM) Act 2015 was introduced to support decision making and maximise a person’s capacity to make decisions but has not yet commenced. Within this context, medical professionals such as geriatricians must adjust from a best interest’s outlook to that of patient autonomy in response to the changing legislation. The aim of this study is to explore current geriatrician’s practice. In scrutinizing current practice, it will be evident as to what, if any, adaptations are required in order to practice in accordance with the new legislation. Methods Ten semi-structured interviews with individual consultant geriatricians were conducted, each lasting approximately 20 minutes on average in one hospital. Each interview was recorded and transcribed verbatim. The interview involved the geriatrician reading a vignette and answering questions as to how they would manage this situation. Following the vignette, the semi-structured interview proceeded covering topics including; patient decision making in the acute setting, deprivation of patient liberty in the acute setting, thoughts on the ADM (Capacity) Act 2015, and elements learned from experiences in other countries. A thematic analysis was conducted. Results Preliminary themes identified from the interviews include; (a) identification, accessibility and availability of medical and legal colleagues in assisting with difficult decision making, (b) need for clear frameworks, guidance and education in relation to laws applying to medical practice, (c) influence of environment, family, perceived risk and delirium on capacity assessment, (d) paternalism versus autonomy. This work is being conducted as part of a master’s in healthcare ethics and law. Conclusion Preliminary results highlight the need for collaborative communication between medics and the legal profession in order to achieve a structured and supportive framework to inform practice considering the new legislation.

scholarly journals Development of a modular Decubitus Prophylaxis System: DekuProSys

2019 ◽  
Vol 5 (1) ◽  
pp. 277-279
Author(s):  
Simon Gallinger ◽  
Natalie Jankowski ◽  
Milena Bister ◽  
Sandra Korge ◽  
Astrid Trachterna ◽  
...  
Keyword(s):  
Risk Factors ◽  
Decision Making ◽  
Palliative Care ◽  
Pressure Ulcers ◽  
Interdisciplinary Approach ◽  
Skin Lesions ◽  
Difficult Decision ◽  
Palliative Care Setting ◽  
Care Information

AbstractPressure ulcers (decubiti) are one of the most frequent side effects in the palliative care setting. Terminally ill and dying people have multiple comorbidities resulting in a high risk to develop pressure ulcers. These skin lesions are caused by pressure, friction and shearing forces in combination with several risk factors (e.g. moisture, tissue condition). People of all ages with reduced activity can suffer from decubitus ulcers. In palliative care, the treatment of symptoms to ensure the highest possible quality of life is of primary importance. Ethical controversies and difficult decision-making often lead to uncertainties and burdens for caregivers, patients and relatives. In the DekuProSys project, a decubitus prophylaxis system for inpatient and outpatient palliative care of people of all ages is being developed. The system will assist caregivers in patient care in multiple ways. It will capture and report risk factors for decubitus, assist at decision making and documentation. Furthermore, it will provide care information and instruction if needed. Aiming for an innovative and useful solution, the project follows a user-centered and interdisciplinary approach.

scholarly journals Nine Recommendations for Decision Aid Implementation from the Clinician Perspective

2020 ◽  
Author(s):  
Anshu Ankolekar ◽  
Ben G.L. Vanneste ◽  
Esther Bloemen-van Gurp ◽  
Joep van Roermund ◽  
Adriana Berlanga ◽  
...  
Keyword(s):  
Decision Making ◽  
Time Pressure ◽  
Decision Aids ◽  
Patient Activation ◽  
Patient Characteristics ◽  
Active Role ◽  
Economic Incentives ◽  
Structural Factors ◽  
Structured Interviews ◽  
Practice Methods

Abstract Background Shared decision-making (SDM) aims to empower patients to take an active role in their treatment choices, supported by clinicians and patient decision aids (PDAs). The purpose of this study is to explore barriers and possible facilitators to SDM and a PDA in the prostate cancer trajectory. In the process we identify possible actions that organizations and individuals can take to support implementation in practice. Methods We use the Ottawa Model of Research Use as a framework to determine the barriers and facilitators to SDM and PDAs from the perspective of clinicians. Semi-structured interviews were conducted with urologists (n = 4), radiation oncologists (n = 3), and oncology nurses (n = 2), focusing on the current decision-making process experienced by these stakeholders. Questions included their attitudes towards SDM and PDAs, barriers to implementation and possible strategies to overcome them. Results Time pressure and patient characteristics were cited as major barriers by 55% of the clinicians we interviewed. Structural factors such as external quotas for certain treatment procedures were also considered as barriers by 44% of the clinicians. Facilitating factors involved organizational changes to embed PDAs in the treatment trajectory, training in using PDAs as a tool for SDM, and clinician motivation by disseminating positive clinical outcomes. Our findings also suggest a role for external stakeholders such as healthcare insurers in creating economic incentives to facilitate implementation. Conclusion Our findings highlight the importance of a multi-faceted implementation strategy to support SDM. While clinician motivation and patient activation are essential, structural/economic barriers may hamper implementation. Action must also be taken at the administrative and policy levels to foster a collaborative environment for SDM and in the process for PDAs.

scholarly journals Multimodal Pain Management in the Setting of Palliative Care

2021 ◽  
Author(s):  
Marija V. Sholjakova ◽  
Vesna M. Durnev
Keyword(s):  
Palliative Care ◽  
Pain Management ◽  
Side Effects ◽  
Pain Relief ◽  
Additional Treatment ◽  
Therapeutic Approaches ◽  
Multimodal Pain Management ◽  
Addictive Drugs ◽  
Analgesic Therapy ◽  
Good Organization

Pain as an integral part of palliative care (PC) is often present at the end of the life. Today, many different analgesics from opioids and non- opioids origin are in use. The integration of their use is the most effective method for pain relief. The aim of this chapter is to discuss different therapeutic approaches to pain management in palliative care. Palliative care is being confronted between the expectations and the possibilities to provide an efficient relief from the symptoms, the pain and the stress. The possibility to use opioids for pain management, with all side effects, and non-addictive drugs as additional treatment, improves the quality and the duration of life for the patients in palliative care. Since the origin of the pain is different, the use of analgesic therapy should be individualized and adapted to the real need of every person. Finally, only a good organization and institutionalization of palliative care in the society could allow for better prevention of suffering at the end of the life.

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