Maintaining integrity in the face of death: the views and experiences of people affected by lung cancer in discussing preferences and wishes for end of life care

This thesis explores the views and experiences of people with lung cancer, and family members, of discussing preferences and wishes for end of life treatment and care. It presents an interpretive analysis based on the application of a constructivist grounded theory approach. Study participants included: eighteen men and seven women with lung cancer and nineteen family members. Participants were mainly from lower socio-economic groups living in the north of England. Single, joint and group interviews were used to gather data. Interview transcripts were analysed using a constant comparative method and conceptual models were drawn to aid the development of the theoretical interpretation. The study found that preferences and wishes for future care and treatment were not the main concern of people with cancer; rather, any concerns for the future were about the social aspects of death. Participants talked about their experiences of facing death whilst striving to live in the present. Planning for one’s own dying and eventual death was not something that people with lung cancer reported having discussed, except when, out of concern for their families, practical arrangements needed to be made following death. The disclosure of a poor prognosis had a huge emotional effect on participants, who ascribed a variety of meanings to this news. Participants’ reported that clinicians usually focused on their disease; they did not recall being offered any ‘options’ or ‘choices’ for future care. They commented that their preferences and wishes for future treatment and care were influenced by their clinician, spouse, other family members and their knowledge of others affected by cancer. The theory ‘maintaining integrity in the face of death’ is proposed. This theory purports that patients with advanced lung cancer and their families focus on acting and talking as ‘normal’ to help them balance living in the present whilst facing death. This thesis makes several contributions to knowledge. First, it provides the views of people from an underrepresented group of cancer patients from lower socioeconomic classes who are rarely included in research. Secondly, it shows how people facing the end of their life place little importance on choice. They focus instead on living in the present and carrying on as normal, which challenges current UK policy that seeks to promote individual patient choice at the end of life through advance care planning. The study findings suggest that policy makers and health and social care professionals need to develop ways of helping people prepare for a ‘social’ rather than a physical or ‘medicalised’ death: a focus on developing advance care planning that provides information to support people’s practical needs at the end of life, delivered as a family intervention, thereby helping people living with lung cancer to maintain their integrity in the face of death

Maintaining integrity in the face of death: the views and experiences of people affected by lung cancer in discussing preferences and wishes for end of life care

This thesis explores the views and experiences of people with lung cancer, and family members, of discussing preferences and wishes for end of life treatment and care. It presents an interpretive analysis based on the application of a constructivist grounded theory approach. Study participants included: eighteen men and seven women with lung cancer and nineteen family members. Participants were mainly from lower socio-economic groups living in the north of England. Single, joint and group interviews were used to gather data. Interview transcripts were analysed using a constant comparative method and conceptual models were drawn to aid the development of the theoretical interpretation. The study found that preferences and wishes for future care and treatment were not the main concern of people with cancer; rather, any concerns for the future were about the social aspects of death. Participants talked about their experiences of facing death whilst striving to live in the present. Planning for one’s own dying and eventual death was not something that people with lung cancer reported having discussed, except when, out of concern for their families, practical arrangements needed to be made following death. The disclosure of a poor prognosis had a huge emotional effect on participants, who ascribed a variety of meanings to this news. Participants’ reported that clinicians usually focused on their disease; they did not recall being offered any ‘options’ or ‘choices’ for future care. They commented that their preferences and wishes for future treatment and care were influenced by their clinician, spouse, other family members and their knowledge of others affected by cancer. The theory ‘maintaining integrity in the face of death’ is proposed. This theory purports that patients with advanced lung cancer and their families focus on acting and talking as ‘normal’ to help them balance living in the present whilst facing death. This thesis makes several contributions to knowledge. First, it provides the views of people from an underrepresented group of cancer patients from lower socioeconomic classes who are rarely included in research. Secondly, it shows how people facing the end of their life place little importance on choice. They focus instead on living in the present and carrying on as normal, which challenges current UK policy that seeks to promote individual patient choice at the end of life through advance care planning. The study findings suggest that policy makers and health and social care professionals need to develop ways of helping people prepare for a ‘social’ rather than a physical or ‘medicalised’ death: a focus on developing advance care planning that provides information to support people’s practical needs at the end of life, delivered as a family intervention, thereby helping people living with lung cancer to maintain their integrity in the face of death

Finishing the euchromatic sequence of the human genome

The sequence of the human genome encodes the genetic instructions for human physiology, as well as rich information about human evolution. In 2001, the International Human Genome Sequencing Consortium reported a draft sequence of the euchromatic portion of the human genome. Since then, the international collaboration has worked to convert this draft into a genome sequence with high accuracy and nearly complete coverage. Here, we report the result of this finishing process. The current genome sequence (Build 35) contains 2.85 billion nucleotides interrupted by only 341 gaps. It covers ∼99% of the euchromatic genome and is accurate to an error rate of ∼1 event per 100,000 bases. Many of the remaining euchromatic gaps are associated with segmental duplications and will require focused work with new methods. The near-complete sequence, the first for a vertebrate, greatly improves the precision of biological analyses of the human genome including studies of gene number, birth and death. Notably, the human enome seems to encode only 20,000-25,000 protein-coding genes. The genome sequence reported here should serve as a firm foundation for biomedical research in the decades ahead