Short summary

Most incurable cancer patients are offered palliative chemotherapy in order to ease symptoms and improve quality of life. However, life-prolonging palliative chemotherapy is not always the answer, especially if the treatment itself is demanding and associated with harsh side-effects making daily life worse. For every incurable cancer patient this leads to a point where the treatment has to stop. This can be a difficult choice for health care professionals, patients and families. The aim of this project is to investigate the psychosocial mechanisms among patients, families and health care professionals when deciding to initiate treatment in the late phase of patients' lives when diagnosed with incurable lung cancer

Rationale

Background

Palliative care and health policy 

Palliative care aims to involve the entire family; concerning quality of life for patients and families in everyday life, interactions with health care professionals and making the right choice regarding palliative chemotherapy. Regarding WHO the definition of palliative care is: "Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual" -Patients with life-threatening diseases are often divided into three phases in the course of their disease. The early stage lasts from month to years. The late phase lasts weeks to months, and the terminal phase lasts days to weeks. Palliative care is organized in two levels: General palliative care and specialized care. General palliative care is defined as care provided to those affected by life-threatening diseases as an integral part of standard clinical practice by any healthcare professional not part of a specialist palliative care team. This includes hospitals as well as primary care and is the care provided at the Department of Oncology, OUH. The general level is obligated to implement initiatives that supports the needs of the entire family from the time of diagnosis. Cancer Plan IV states that patients and families do not feel involved in options about treatment. Furthermore, Cancer Plan IV emphasizes that 90% of all patients in 2020 should be involved in making choice about their own treatment. This means that health professionals must involve both patients and families in the choice of palliative chemotherapy and meet their individual expectations and preferences, but because of the complexity of the disease and its impact on the patient and family' it may be a major challenge. 

Lung cancer and mesothelioma 

Lung cancer is divided into two major groups- non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC). Patients diagnosed with either lung cancer or mesothelioma, are often incurable at the time of diagnosis and are thus offered palliative chemotherapy, because of the high symptom burden. According to NORDCAN, Association of the Nordic Cancer Registries, 3716 people died in 2014 of lung cancer, equally divided between men and women (16). Relief of symptoms related to the cancer during the end of life is important. However, it has been questioned whether the patients benefit from palliative chemotherapy during the last months before death. If palliative chemotherapy is more a burden than a benefit and fails to provide a life with value, dignity and meaning the treatment should be discontinued. Patients and families may choose to receive palliative chemotherapy for various reasons, and they often avoid discussing expected effects of palliative chemotherapy with health care professionals, which may compromise optimal quality of life and may make many patients live with a false hope that the treatment can cure the disease. Discussions and interactions between health care professionals and families, may reduce unnecessary aggressive palliative chemotherapy and improve the chances of securing patients' and family's quality of life, live in accordance with their values. Furthermore, when a loved one is diagnosed with a life-threatening disease it has a huge impact on the entire family; relations and roles within the family change and the family is put under great strain as the disease progresses. The complexity of these situations may clarify the importance of creating a room for patient and families to discuss difficult subjects with health care professionals, in order for them to make the right choices about the palliative chemotherapy. 

Currently, we have limited knowledge of patients diagnosed with lung cancer in the late palliative phase receiving chemotherapy and we have a number of unanswered questions. Additionally, we do not know if Danish cancer patient's expectations are comparable to those found in other countries, where patients have expressed their high expectations of becoming cured by the palliative chemotherapy. Likewise, we do not know which motives and expectations the health care professionals have for treating patients in the late palliative phase. We need knowledge of health care professionals, patient and family interactions regarding when choice of treatment is made. Further investigation of this matter is needed to improve the quality of life for Danish cancer patients receiving palliative chemotherapy in the late palliative phase of their diseases.

Aim and objectives

The aim of this PhD project is to investigate the psychosocial mechanisms among patients, families and health care professionals involved when it is decided to initiate treatment in the late phase of patients' lives when diagnosed with incurable lung cancer. Understanding this may lead to the more appropriate use of treatment in the late phase of patients' lives. This new knowledge will hopefully result in an improved quality of life for future patients and their families.

The aim will be examined in 3 studies with the following research questions and methods. 

Study I:  Patients reported outcomes (PRO) of quality of life and the expectations of palliative chemotherapy by patients and families.

Research question:

• What are patients and families expectations regarding palliative chemotherapy
• How are patients QOL during palliative chemotherapy?

Methods: Prospective collection of patient reported outcomes regarding quality of life data with the validated questionnaire FACT-G (32) over one year period. Alongside, this will be used; a manageable and adapted questionnaire of beliefs and expectations about palliative chemotherapy. Patients will complete the FACT-G questionnaire prior to their first and second course of palliative chemotherapy and before the consultation in the follow up clinic. Patients will likewise complete a one side questionnaire containing socio-demographic data, at their first treatment regarding co-habitation, level of education, job situation, and children. The families will complete a questionnaire regarding their expectations of palliative chemotherapy before the treatment is initiated. 

Participants: 50 < patients with lung cancer/mesothelioma offered palliative chemotherapy, second line treatment and beyond. Exclusion criteria: Patients who do not speak Danish. Patients for whom the physicians find are unable to participate for cognitive reasons, patients < 18 years. 

Analysis: The analysis of the data is conducted according to the FACT-G scale recommendations. Descriptive statistics are used to obtain information regarding the demographic and disease specific characteristics of the included lung cancer patients. Data will be checked for accuracy of entry and for normal distribution. Data will be summarized, including means, standard deviations (SD) and frequency distributions. Data analyses are conducted using STATA; and a two-sided p value < 0, 05 are considered significant. Furthermore, we will look for factors that might influence the choice of treatment, i.e. age or life situation.

Study II: The beliefs and experiences of patients and their families, of receiving/not receiving palliative chemotherapy.

Research question: 

• How do patients and their families experience receiving/not receiving palliative chemotherapy and how do interactions unfold between patient, family and health care professionals when choices about palliative chemotherapy are made?
• What are patients and family's beliefs and experiences when receiving the palliative chemotherapy? 

Methods: Data will be obtained by participant observations of patients and families before, during and after the consultation and in the 1) information clinic, 2) the chemotherapy clinic and 3) follow up clinic. The participant observation will be followed by informal and individual explorative interviews with patients and their families. Patient and family interviews will be conducted both at the hospital and if the patient wish for it, at the patients home. The family will be interviewed together with the patients, of course with the acceptance of the patient.

Participants: Approximately 12-15 patients and families who receive palliative chemotherapy, second line treatment and beyond. Exclusion: As described in study I.

Analysis: Data from participant observations, video-recordings and interviews will be analyzed through meaning condensation. 

Study III: The beliefs and considerations of health care professionals when providing palliative chemotherapy.

Research question:

• What are the beliefs and considerations of health care professionals when providing palliative chemotherapy?

Methods: Data will be obtained by participant observations of health care professionals, before, during and after consultation and by video-recording during consultations in 1) the information clinic, 2) the chemotherapy clinic and 3) the follow up clinic. The participant observation will be followed by informal and focus group interviews with physicians and nurses.

Participants: Approximately 12-15 healthcare professionals responsible for providing palliative chemotherapy, second line treatment and beyond.

Analysis: Data from participant observations, video-recordings and interviews will be analyzed through meaning condensation.

Description of the cohort

Patients diagnosed with lung cancer, recieving palliative chemotherapy, second line and above. 

Data and biological material

Questionnaires, field observations, individual and focus group interviews. 

Collaborating researchers and departments

Department of Oncology, Odense University Hospital

• Associate Professor, Karin Dieperink, PhD, MCN, RN.

Department of Oncology, Odense University Hospital

• Professor, Olfred Hansen, PhD, MPO 

REHPA – Knowledge Centre for Rehabilitation and Palliative Care, Clinical Institute, University of Southern Denmark

• Senior Researcher, Mette Raunkiær, PhD, MCS, RN