Survey of People Treating and Living With Lung Cancer
Survey of People Treating and Living With Lung Cancer
Among patient responders, the primary feeling associated with having lung cancer was sadness. When asked to describe how they thought others viewed them, some reported being seen as happy, yet there was some concern that others just saw the cancer first and foremost, thus rendering an identity of 'cancer patient' as a primary identity rather than other category ascriptions such as 'brother', 'sister' or 'mother'. For FFCs and physicians, sadness was also a common response to lung cancer. Physician responses placed value on patients' ability to stay positive and, when asked what advice they would offer others, all three groups described a need to have hope, be strong and stay positive. Although FFCs also talked about being positive and drawing strength from their families or faith, they were more strongly focused on perceived inadequacies in treatment or support, including their own limitations in terms of being able to help the patient or change the status quo.
People affected by cancer (including physicians) may feel a pressure to display positivity and this can inhibit the sharing of negative feelings of fear, despair and lack of optimism. For others, speaking optimistically or positively may simply be a way of talking about their cancer or a discursive strategy for interaction or expression and may, of course, not relate to mood states. 'Thinking positively' has been advocated in self-help books and has become a societal moral norm. Positive and hopeful thinking, as well as a fighting spirit, are strong cultural idioms and it is possible that drawing on these widely accepted devices performs a function of stimulating a supportive response from others. Positivity may also, of course, provide a way for patients to protect their families and friends from the sometimes bleaker details of their cancer experience. For the respondents of this study, positivity also meant being able to participate in normal, everyday life. Maintaining some normality can offer a sense of control over the disease for patients and FFCs, and may act as a bridge between the negatives of uncertainty and dependency, and the positives of hope and support.
Lung cancer is commonly associated with stigma, blame and guilt, with patients feeling they have brought the disease on themselves through smoking. Although some patient responses oriented to regret and the wish to relive their lives without smoking, feelings of self-blame observed in previous studies were not evident in participant responses, although the study did not explicitly invite respondents to reflect on issues of blame and self-blame.
Understandably, uncertainty at varying points of the cancer trajectory was described as a cause of anxiety or worry for both patients and FFCs, including the accompanying uncertainty of the disease, waiting times from diagnosis to treatment and the emotional impact on the patient, and uncertainty about prognosis. While respondent answers indicated a preference for discussing prognostic matters openly, some of the patient respondents described physician hesitancy about discussing the unknown.
Acknowledging and discussing concerns can reduce anxiety, even when no clear resolution can be reached, but discussing a patient's cancer openly without reducing the opportunity for hope and optimism is one of the most challenging tasks for physicians. Estimating the emotional experiences of patients and striking a balance between good, bad and uncertain news are difficulties that are made more challenging when the potential for cure is limited. This study suggests that there is room for improvement in the communication between patient and physician of prognosis and end-of-life care needs.
When invited to suggest what matters most to patients over certain time periods (days/weeks/years), physicians did not place as much emphasis on the importance of family and their supportive role as did patient and FFC respondents; rather, they reported on the importance of interactions with healthcare providers more than patient and FFC respondents did. Differences between physicians and patients/FFCs were particularly noticeable over short time periods (days/weeks) but there was a greater concordance of views over the longer term (years), with all respondents expressing a fundamental hope for the patient to still be alive in a year's time and be able to participate in significant family events.
Many of the issues raised by this study suggest an important theoretical point about cross-cultural convergence in terms of factors that are valued, especially by patients and their FFCs, and these suggest a common cross-cultural 'essence of care and experience'. Care that is transparent ('good' or 'bad') and timely is crucial, as is an experience that can be jointly negotiated with support and understanding, respecting a core need to maintain some normality and a life with family or friends.
In terms of patient care, the responses confirm the value of efficient clinical management and communication to keep the patient informed, and also raise the challenge of what to tell and what to ask. Certainly, until we, as researchers, patients, FFCs and physicians, begin to unpick and understand the communication practices that can enhance clarity and accomplish 'realistic hope', we may remain unclear about just how to negotiate this long-established challenge. In the UK, clinical nurse specialists are responsible for providing both technical and emotional support to improve the cancer care experience for patients. This role could go some way towards meeting the needs of patients, by acting as an intermediary between physicians from different specialties and their patients. Therefore, this may be a model that warrants further exploration.
The responses of FFCs in this study and the important role that they play in the patient's support network again raise the importance of integrating FFCs into the treatment and support regimen. Recent research in the UK has focused on 'care partnerships' and the specific needs and role of caregivers; however, the challenge is translating such research into policy and practice. In the UK, there is a focus on high-quality end-of-life care, as set out in the government's End of Life Care Strategy. This involves encouraging local adoption and development of end-of-life care models, such as the Gold Standards Framework; the Liverpool Care Pathway for the Dying Patient; and Preferred Priorities for Care. However, these programs and guidelines rely on individuals to make them happen. Largely, especially in lung cancer, timely, open discussion about life expectancy and end-of-life care needs to be tailored to individual patients, their families and significant others (remembering, of course, that some may, at certain moments, elect to 'not know' anymore, and this too needs to be respected and negotiated). The timing of palliative care is also important; the benefits of early palliative care in improving quality of life have been demonstrated.
Other groups have explored the experiences of patients with lung cancer but, to our knowledge, this is the first international study to use interactive media to explore views and feelings. Although the open, free-text response format used for many of the questions limited the possibility for quantitative and statistical analysis, it provided unique insights into the views and experiences of an international cohort, and the language they used to describe those experiences, which would have been lost by fixed-text response formats and scaling.
In terms of the participating sample, only the views of participants who were well enough to respond and hence at a particular point in their illness trajectory could be captured. While the views of less-healthy participants probably resonate with the participants in this study, other issues are likely to be identified. The inclusion of patients with all stages of NSCLC in the surveyed population, with the inclusion of only physicians involved in treating patients with more advanced stages (IIIB and IV) of the disease, was intentional to enable a broad insight into patients' perspectives to be gained. Respondents had to be willing to participate and may therefore have had a generally more positive experience or outlook, potentially introducing bias into the results. The requirement for internet access possibly biased the selection of patients to those who were more likely to research their illness. Equally, the inclusion criterion for physicians of believing, or being interested in, the need for greater information sharing about NSCLC may have selected a group with more appreciation for their patients' experiences and feelings. Finally, providing the opportunity for respondents to answer in their native language would have prevented any potential bias toward responders from the UK and the USA (who, as native speakers, were more likely to be able to express complex responses and subtlety of feeling), which may have resulted in richer responses from non-UK/non-US respondents.
Discussion
Among patient responders, the primary feeling associated with having lung cancer was sadness. When asked to describe how they thought others viewed them, some reported being seen as happy, yet there was some concern that others just saw the cancer first and foremost, thus rendering an identity of 'cancer patient' as a primary identity rather than other category ascriptions such as 'brother', 'sister' or 'mother'. For FFCs and physicians, sadness was also a common response to lung cancer. Physician responses placed value on patients' ability to stay positive and, when asked what advice they would offer others, all three groups described a need to have hope, be strong and stay positive. Although FFCs also talked about being positive and drawing strength from their families or faith, they were more strongly focused on perceived inadequacies in treatment or support, including their own limitations in terms of being able to help the patient or change the status quo.
People affected by cancer (including physicians) may feel a pressure to display positivity and this can inhibit the sharing of negative feelings of fear, despair and lack of optimism. For others, speaking optimistically or positively may simply be a way of talking about their cancer or a discursive strategy for interaction or expression and may, of course, not relate to mood states. 'Thinking positively' has been advocated in self-help books and has become a societal moral norm. Positive and hopeful thinking, as well as a fighting spirit, are strong cultural idioms and it is possible that drawing on these widely accepted devices performs a function of stimulating a supportive response from others. Positivity may also, of course, provide a way for patients to protect their families and friends from the sometimes bleaker details of their cancer experience. For the respondents of this study, positivity also meant being able to participate in normal, everyday life. Maintaining some normality can offer a sense of control over the disease for patients and FFCs, and may act as a bridge between the negatives of uncertainty and dependency, and the positives of hope and support.
Lung cancer is commonly associated with stigma, blame and guilt, with patients feeling they have brought the disease on themselves through smoking. Although some patient responses oriented to regret and the wish to relive their lives without smoking, feelings of self-blame observed in previous studies were not evident in participant responses, although the study did not explicitly invite respondents to reflect on issues of blame and self-blame.
Understandably, uncertainty at varying points of the cancer trajectory was described as a cause of anxiety or worry for both patients and FFCs, including the accompanying uncertainty of the disease, waiting times from diagnosis to treatment and the emotional impact on the patient, and uncertainty about prognosis. While respondent answers indicated a preference for discussing prognostic matters openly, some of the patient respondents described physician hesitancy about discussing the unknown.
Acknowledging and discussing concerns can reduce anxiety, even when no clear resolution can be reached, but discussing a patient's cancer openly without reducing the opportunity for hope and optimism is one of the most challenging tasks for physicians. Estimating the emotional experiences of patients and striking a balance between good, bad and uncertain news are difficulties that are made more challenging when the potential for cure is limited. This study suggests that there is room for improvement in the communication between patient and physician of prognosis and end-of-life care needs.
When invited to suggest what matters most to patients over certain time periods (days/weeks/years), physicians did not place as much emphasis on the importance of family and their supportive role as did patient and FFC respondents; rather, they reported on the importance of interactions with healthcare providers more than patient and FFC respondents did. Differences between physicians and patients/FFCs were particularly noticeable over short time periods (days/weeks) but there was a greater concordance of views over the longer term (years), with all respondents expressing a fundamental hope for the patient to still be alive in a year's time and be able to participate in significant family events.
Many of the issues raised by this study suggest an important theoretical point about cross-cultural convergence in terms of factors that are valued, especially by patients and their FFCs, and these suggest a common cross-cultural 'essence of care and experience'. Care that is transparent ('good' or 'bad') and timely is crucial, as is an experience that can be jointly negotiated with support and understanding, respecting a core need to maintain some normality and a life with family or friends.
In terms of patient care, the responses confirm the value of efficient clinical management and communication to keep the patient informed, and also raise the challenge of what to tell and what to ask. Certainly, until we, as researchers, patients, FFCs and physicians, begin to unpick and understand the communication practices that can enhance clarity and accomplish 'realistic hope', we may remain unclear about just how to negotiate this long-established challenge. In the UK, clinical nurse specialists are responsible for providing both technical and emotional support to improve the cancer care experience for patients. This role could go some way towards meeting the needs of patients, by acting as an intermediary between physicians from different specialties and their patients. Therefore, this may be a model that warrants further exploration.
The responses of FFCs in this study and the important role that they play in the patient's support network again raise the importance of integrating FFCs into the treatment and support regimen. Recent research in the UK has focused on 'care partnerships' and the specific needs and role of caregivers; however, the challenge is translating such research into policy and practice. In the UK, there is a focus on high-quality end-of-life care, as set out in the government's End of Life Care Strategy. This involves encouraging local adoption and development of end-of-life care models, such as the Gold Standards Framework; the Liverpool Care Pathway for the Dying Patient; and Preferred Priorities for Care. However, these programs and guidelines rely on individuals to make them happen. Largely, especially in lung cancer, timely, open discussion about life expectancy and end-of-life care needs to be tailored to individual patients, their families and significant others (remembering, of course, that some may, at certain moments, elect to 'not know' anymore, and this too needs to be respected and negotiated). The timing of palliative care is also important; the benefits of early palliative care in improving quality of life have been demonstrated.
Strengths & Weaknesses of the Study
Other groups have explored the experiences of patients with lung cancer but, to our knowledge, this is the first international study to use interactive media to explore views and feelings. Although the open, free-text response format used for many of the questions limited the possibility for quantitative and statistical analysis, it provided unique insights into the views and experiences of an international cohort, and the language they used to describe those experiences, which would have been lost by fixed-text response formats and scaling.
In terms of the participating sample, only the views of participants who were well enough to respond and hence at a particular point in their illness trajectory could be captured. While the views of less-healthy participants probably resonate with the participants in this study, other issues are likely to be identified. The inclusion of patients with all stages of NSCLC in the surveyed population, with the inclusion of only physicians involved in treating patients with more advanced stages (IIIB and IV) of the disease, was intentional to enable a broad insight into patients' perspectives to be gained. Respondents had to be willing to participate and may therefore have had a generally more positive experience or outlook, potentially introducing bias into the results. The requirement for internet access possibly biased the selection of patients to those who were more likely to research their illness. Equally, the inclusion criterion for physicians of believing, or being interested in, the need for greater information sharing about NSCLC may have selected a group with more appreciation for their patients' experiences and feelings. Finally, providing the opportunity for respondents to answer in their native language would have prevented any potential bias toward responders from the UK and the USA (who, as native speakers, were more likely to be able to express complex responses and subtlety of feeling), which may have resulted in richer responses from non-UK/non-US respondents.
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