Open Access Original Article
DOI: 10.7759/cureus.271
Perceptions and Preferences of Patients with Terminal Lung Cancer and Family Caregivers about DNR Naseer Ahmed1, Michelle Lobchuk2, William M. Hunter 3, Pam Johnston 4, Zoann Nugent 5, Ankur Sharma6, Shahida Ahmed7, Jeff Sisler8 1. Department of Radiation Oncology, CancerCare Manitoba, Cancer Care Manitoba, University of Manitoba, Canada 2. Faculty of Nursing, Cancer Care Manitoba, University of Manitoba, Canada 3. Radiation Oncology, Tom Baker Cancer Centre 4. Department of Nursing, Cancer Care Manitoba, University of Manitoba, Canada 5. Department of Epidemiology and Cancer Registry, Cancer Care Manitoba, University of Manitoba, Canada 6. Cancer Care Manitoba, Cancer Care Manitoba, University of Manitoba, Canada 7. Department of Radiation Oncology, CancerCare Manitoba, Cancer Care Manitoba, University of Manitoba, Canada 8. Family Medicine, Cancer Care Manitoba, University of Manitoba, Canada Corresponding author: Naseer Ahmed, [email protected] Disclosures can be found in Additional Information at the end of the article
Abstract Background: Patients with terminal lung cancer and their families are challenged and stressed with the end of life discussions. Do Not Resuscitate (DNR) orders are a critical part of such discussions. Objective: To understand the perceptions and preferences of patients with terminal lung cancer and their family caregivers around DNR discussions. . Methods: Our quantitative component consisted of a pen-and-paper questionnaire that was followed by a 'think aloud' process to capture perceptions of participants in response to questionnaire items. Qualitative methods included content analysis and constant comparison techniques to identify, code, and categorize primary themes arising from 'think aloud' responses.
Received 05/05/2015 Review began 05/08/2015 Review ended 05/18/2015 Published 05/27/2015 © Copyright 2015 Ahmed et al. This is an open access article distributed under the terms of the Creative Commons Attribution License CC-BY 3.0., which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and
Results: In this pilot study, 10 patients with advanced stage lung cancer and nine family caregivers were enrolled from one tertiary cancer care centre. Three major themes and several sub-themes were identified reflecting participants' psychosocial environment, emotional responses to DNR discussions, and suggestions to improve DNR discussions. Most of the time, both patients and caregivers perceived a supportive environment within their family unit. Some patients were uncertain about their disease extent but most had entertained thoughts about prognosis and DNR status prior to having a discussion with their physician. A range of situations stimulated the DNR discussion. Most patients were uncertain about identifying the most appropriate health care provider (HCP) for DNR discussion. While participants found DNR discussions distressing, patients maintained hope in the face of accepting a terminal diagnosis. There were mixed feelings about the reversibility of a DNR decision and concerns about the care of the patients after being stated as DNR. Participants desired their HCP to be emotionally sensitive, knowledgeable, respectful, and straightforward. Conclusions: Most participants were open about their experiences with psychosocial supports and emotional reactions and made suggestions to HCP to improve DNR discussions. Further examination in larger longitudinal studies is required to validate the observations in the current study.
source are credited.
How to cite this article Ahmed N, Lobchuk M, Hunter W M, et al. (2015-05-27 11:09:38 UTC) Perceptions and Preferences of Patients with Terminal Lung Cancer and Family Caregivers about DNR . Cureus 7(5): e271. DOI 10.7759/cureus.271
Categories: Oncology Keywords: dnr, end of life care, patients and care givers, terminal lung cancer
Introduction Patients diagnosed with terminal lung cancer have a rapidly declining performance status and are frail and emotionally vulnerable. Both patients and their families are confronted with the difficult end of life (EOL) discussions, and decisions sometimes need to be made within days after receiving a terminal diagnosis. Do Not Resuscitate (DNR) orders are a significant part of EOL discussions [1]. We recently published a report describing perceptions and preferences of patients, their family caregivers (CGs), and their health care providers (HCP), with respect to their understanding of and the appropriate time to discuss DNR [2]. In the current article, the investigators report study findings from their cross-sectional exploration of cognitive and emotional perceptions and preferences of patients and their CGs when engaged in DNR discussions.
Materials And Methods In this pilot study, 10 patients and nine CGs who met the eligibility criteria were recruited from Cancer Care Manitoba (CCMB) in Canada where tertiary and multidisciplinary care are provided to approximately 800 newly diagnosed lung cancer patients per year. Once considered incurable, patients are given the option to enroll into a palliative care program. Patients must have a DNR status to be eligible for this program. Patients with a pathological diagnosis of either non-small cell or small cell lung cancer and incurable disease, who did not exhibit confusion, and who were not to receive further curative therapy, were eligible. Additional eligibility criteria included a discussion with the HCP around DNR, and having a CG who was willing to participate in the study. A CG was identified by the patient as the individual who assisted most with his or her care and was most involved with the patient in the DNR status decision-making was eligible to participate in the study. Quantitative and qualitative methods were used to capture perceptions of study participants. A dedicated research nurse was trained on the interview technique before she conducted interviews of the participants. A written informed consent was obtained from the participants. Prior to commencing the study’s protocols, the investigators obtained ethics approval from the Research Ethics Board University of Manitoba (approval #H2011: 227). Quantitative Component Study participants completed respective pen-and-paper versions of an investigator-developed questionnaire for patients and CGs. In these tools, we collected socio-demographic and medical information, which were verified with the patient’s medical record with permission from the patient in the written informed consent. Qualitative Component We employed a ‘think aloud’ process where participants were prompted to immediately verbalize their thoughts when responding to items in the investigator-developed questionnaire on DNR status and DNR discussions [2]. In response to our prompts, we were able to glean an understanding of their level of understanding, personal wishes, triggers, timing, appropriate setting, emotional experiences, appropriate health care provider, and extent of family dialogue on DNR decisions. Interviews were audio-recorded and transcribed for interpretation and analyses of the key themes. A more detailed description of the interview process is captured in another article [2].
2015 Ahmed et al. Cureus 7(5): e271. DOI 10.7759/cureus.271
2 of 12
Data Analyses Demographic and medical characteristics, as well as subgroup responses to questionnaire items, were captured by descriptive statistics (Tables 1-2).
Characteristics
Patients (n)
Median age
67.5 years
Gender M
6
F
4
Religious affiliation Affiliated to some religion
9
Not affiliated to any religion
1
Histological diagnosis of lung cancer Non-small cell
9
Small cell
1
DNR status DNR
9
No DNR
1
Brain metastasis Present
3
Absent
7
Whole brain radiation prior to interview Received
2
Not received
8
Location of the interview Outpatient clinic
8
In hospital
2
CGs accompanying the patient during study interview Yes
8
No
2
TABLE 1: Patients (n = 10) Characteristics
Characteristics
CGs (n)
Median age
67.5 years
Gender M
2015 Ahmed et al. Cureus 7(5): e271. DOI 10.7759/cureus.271
3
3 of 12
F
6
Relationship Spouse
5
Parents
1
Sibling
2
Friend
1
Religion Anglican
2
Lutheran
1
Greek Catholic
1
United Church
4
None
1
Culture/ethnicity Scottish, Italian
1
French, Quebec
1
Icelandic Irish
1
Irish English
1
Scottish, German
2
Ukrainian
2
Ukrainian polish dutch
1
Education High school or less
6
University
3
Income 40-80,000K
3
DOI: 10.7759/cureus.271
Perceptions and Preferences of Patients with Terminal Lung Cancer and Family Caregivers about DNR Naseer Ahmed1, Michelle Lobchuk2, William M. Hunter 3, Pam Johnston 4, Zoann Nugent 5, Ankur Sharma6, Shahida Ahmed7, Jeff Sisler8 1. Department of Radiation Oncology, CancerCare Manitoba, Cancer Care Manitoba, University of Manitoba, Canada 2. Faculty of Nursing, Cancer Care Manitoba, University of Manitoba, Canada 3. Radiation Oncology, Tom Baker Cancer Centre 4. Department of Nursing, Cancer Care Manitoba, University of Manitoba, Canada 5. Department of Epidemiology and Cancer Registry, Cancer Care Manitoba, University of Manitoba, Canada 6. Cancer Care Manitoba, Cancer Care Manitoba, University of Manitoba, Canada 7. Department of Radiation Oncology, CancerCare Manitoba, Cancer Care Manitoba, University of Manitoba, Canada 8. Family Medicine, Cancer Care Manitoba, University of Manitoba, Canada Corresponding author: Naseer Ahmed, [email protected] Disclosures can be found in Additional Information at the end of the article
Abstract Background: Patients with terminal lung cancer and their families are challenged and stressed with the end of life discussions. Do Not Resuscitate (DNR) orders are a critical part of such discussions. Objective: To understand the perceptions and preferences of patients with terminal lung cancer and their family caregivers around DNR discussions. . Methods: Our quantitative component consisted of a pen-and-paper questionnaire that was followed by a 'think aloud' process to capture perceptions of participants in response to questionnaire items. Qualitative methods included content analysis and constant comparison techniques to identify, code, and categorize primary themes arising from 'think aloud' responses.
Received 05/05/2015 Review began 05/08/2015 Review ended 05/18/2015 Published 05/27/2015 © Copyright 2015 Ahmed et al. This is an open access article distributed under the terms of the Creative Commons Attribution License CC-BY 3.0., which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and
Results: In this pilot study, 10 patients with advanced stage lung cancer and nine family caregivers were enrolled from one tertiary cancer care centre. Three major themes and several sub-themes were identified reflecting participants' psychosocial environment, emotional responses to DNR discussions, and suggestions to improve DNR discussions. Most of the time, both patients and caregivers perceived a supportive environment within their family unit. Some patients were uncertain about their disease extent but most had entertained thoughts about prognosis and DNR status prior to having a discussion with their physician. A range of situations stimulated the DNR discussion. Most patients were uncertain about identifying the most appropriate health care provider (HCP) for DNR discussion. While participants found DNR discussions distressing, patients maintained hope in the face of accepting a terminal diagnosis. There were mixed feelings about the reversibility of a DNR decision and concerns about the care of the patients after being stated as DNR. Participants desired their HCP to be emotionally sensitive, knowledgeable, respectful, and straightforward. Conclusions: Most participants were open about their experiences with psychosocial supports and emotional reactions and made suggestions to HCP to improve DNR discussions. Further examination in larger longitudinal studies is required to validate the observations in the current study.
source are credited.
How to cite this article Ahmed N, Lobchuk M, Hunter W M, et al. (2015-05-27 11:09:38 UTC) Perceptions and Preferences of Patients with Terminal Lung Cancer and Family Caregivers about DNR . Cureus 7(5): e271. DOI 10.7759/cureus.271
Categories: Oncology Keywords: dnr, end of life care, patients and care givers, terminal lung cancer
Introduction Patients diagnosed with terminal lung cancer have a rapidly declining performance status and are frail and emotionally vulnerable. Both patients and their families are confronted with the difficult end of life (EOL) discussions, and decisions sometimes need to be made within days after receiving a terminal diagnosis. Do Not Resuscitate (DNR) orders are a significant part of EOL discussions [1]. We recently published a report describing perceptions and preferences of patients, their family caregivers (CGs), and their health care providers (HCP), with respect to their understanding of and the appropriate time to discuss DNR [2]. In the current article, the investigators report study findings from their cross-sectional exploration of cognitive and emotional perceptions and preferences of patients and their CGs when engaged in DNR discussions.
Materials And Methods In this pilot study, 10 patients and nine CGs who met the eligibility criteria were recruited from Cancer Care Manitoba (CCMB) in Canada where tertiary and multidisciplinary care are provided to approximately 800 newly diagnosed lung cancer patients per year. Once considered incurable, patients are given the option to enroll into a palliative care program. Patients must have a DNR status to be eligible for this program. Patients with a pathological diagnosis of either non-small cell or small cell lung cancer and incurable disease, who did not exhibit confusion, and who were not to receive further curative therapy, were eligible. Additional eligibility criteria included a discussion with the HCP around DNR, and having a CG who was willing to participate in the study. A CG was identified by the patient as the individual who assisted most with his or her care and was most involved with the patient in the DNR status decision-making was eligible to participate in the study. Quantitative and qualitative methods were used to capture perceptions of study participants. A dedicated research nurse was trained on the interview technique before she conducted interviews of the participants. A written informed consent was obtained from the participants. Prior to commencing the study’s protocols, the investigators obtained ethics approval from the Research Ethics Board University of Manitoba (approval #H2011: 227). Quantitative Component Study participants completed respective pen-and-paper versions of an investigator-developed questionnaire for patients and CGs. In these tools, we collected socio-demographic and medical information, which were verified with the patient’s medical record with permission from the patient in the written informed consent. Qualitative Component We employed a ‘think aloud’ process where participants were prompted to immediately verbalize their thoughts when responding to items in the investigator-developed questionnaire on DNR status and DNR discussions [2]. In response to our prompts, we were able to glean an understanding of their level of understanding, personal wishes, triggers, timing, appropriate setting, emotional experiences, appropriate health care provider, and extent of family dialogue on DNR decisions. Interviews were audio-recorded and transcribed for interpretation and analyses of the key themes. A more detailed description of the interview process is captured in another article [2].
2015 Ahmed et al. Cureus 7(5): e271. DOI 10.7759/cureus.271
2 of 12
Data Analyses Demographic and medical characteristics, as well as subgroup responses to questionnaire items, were captured by descriptive statistics (Tables 1-2).
Characteristics
Patients (n)
Median age
67.5 years
Gender M
6
F
4
Religious affiliation Affiliated to some religion
9
Not affiliated to any religion
1
Histological diagnosis of lung cancer Non-small cell
9
Small cell
1
DNR status DNR
9
No DNR
1
Brain metastasis Present
3
Absent
7
Whole brain radiation prior to interview Received
2
Not received
8
Location of the interview Outpatient clinic
8
In hospital
2
CGs accompanying the patient during study interview Yes
8
No
2
TABLE 1: Patients (n = 10) Characteristics
Characteristics
CGs (n)
Median age
67.5 years
Gender M
2015 Ahmed et al. Cureus 7(5): e271. DOI 10.7759/cureus.271
3
3 of 12
F
6
Relationship Spouse
5
Parents
1
Sibling
2
Friend
1
Religion Anglican
2
Lutheran
1
Greek Catholic
1
United Church
4
None
1
Culture/ethnicity Scottish, Italian
1
French, Quebec
1
Icelandic Irish
1
Irish English
1
Scottish, German
2
Ukrainian
2
Ukrainian polish dutch
1
Education High school or less
6
University
3
Income 40-80,000K
3
