The last months of lung cancer patients’ lives, in the memory of their relatives. A qualitative study based on in-depth interviews with family members

Background. The aim of the study was to assess how family members remember the final months of their loved ones 2–8 years after their death. We focused particularly on their recognition of the patients’ physical, psychosocial and spiritual needs. Methods. The family members of 45 non small-cell lung cancer patients who died up to 7 years after radical surgical treatment were telephoned and asked to meet the research team. Only 20 of them agreed to talk about the dying and death of their relatives; for the rest the issue was still too painful. During the meeting with two researchers, participants were asked to comment freely on the points of the Assessment of Dying in Lung Cancer Patients questionnaire. Results. Almost all the relatives interviewed in our study were able to recognize the beginning of the terminal phase. They connected the beginning of dying with the deterioration of the physical and/or psychological status of patients, such as the exacerbation of weakness and/or other symptoms or with clearly distinguished incidents such as cancer recurrence or hip fracture. The majority were able to define the length of this phase as being several months (median = 3, range 1–11 months). The most common physical symptoms mentioned by the relatives interviewed were, in sequential order: pain (n = 13) and fatigue (n = 13), anorexia (n = 9), dyspnoea (n = 7) and cachexia (n = 7). Of the 20 decedents, 18 regularly received painkillers at least at some period during their final months. Apart from medicines prescribed by the doctors, 9 patients were treated with “anticancer” herbs, or homeopathy, or by bioenergotherapy. From the relatives’ perspectives, the main approach was focused on the physical aspects of care while there was a lack of psychological and social support, the latter often causing severe financial burden. Most relatives believed that chaplains are the main source of spiritual comfort and there was easy access to such a service both in their parish and in the hospice or hospitals. Conclusion. Our study showed that the families remembered feelings of loneliness and helplessness when confronted with the psychological suffering of their loved ones and the financial burdens caused by the caregivers. Professionals involved in palliative care should acknowledge that holistic care requires sensitivity, not only to the physical but also to the psychosocial and spiritual aspects of end-of-life care.Background. The aim of the study was to assess how family members remember the final months of their loved ones 2–8 years after their death. We focused particularly on their recognition of the patients’ physical, psychosocial and spiritual needs. Methods. The family members of 45 non small-cell lung cancer patients who died up to 7 years after radical surgical treatment were telephoned and asked to meet the research team. Only 20 of them agreed to talk about the dying and death of their relatives; for the rest the issue was still too painful. During the meeting with two researchers, participants were asked to comment freely on the points of the Assessment of Dying in Lung Cancer Patients questionnaire. Results. Almost all the relatives interviewed in our study were able to recognize the beginning of the terminal phase. They connected the beginning of dying with the deterioration of the physical and/or psychological status of patients, such as the exacerbation of weakness and/or other symptoms or with clearly distinguished incidents such as cancer recurrence or hip fracture. The majority were able to define the length of this phase as being several months (median = 3, range 1–11 months). The most common physical symptoms mentioned by the relatives interviewed were, in sequential order: pain (n = 13) and fatigue (n = 13), anorexia (n = 9), dyspnoea (n = 7) and cachexia (n = 7). Of the 20 decedents, 18 regularly received painkillers at least at some period during their final months. Apart from medicines prescribed by the doctors, 9 patients were treated with “anticancer” herbs, or homeopathy, or by bioenergotherapy. From the relatives’ perspectives, the main approach was focused on the physical aspects of care while there was a lack of psychological and social support, the latter often causing severe financial burden. Most relatives believed that chaplains are the main source of spiritual comfort and there was easy access to such a service both in their parish and in the hospice or hospitals. Conclusion. Our study showed that the families remembered feelings of loneliness and helplessness when confronted with the psychological suffering of their loved ones and the financial burdens caused by the caregivers. Professionals involved in palliative care should acknowledge that holistic care requires sensitivity, not only to the physical but also to the psychosocial and spiritual aspects of end-of-life care

How do relatives remember the dying of lung cancer patients after 2-8 years? A qualitative study based on in-depth interviews with family members

Background. The aim of our study was to assess how relatives remember the dying of lung cancer patients several years after their death. Methods. The family members of 45 non small-cell lung cancer patients who died up to 7 years after radical surgical treatment were telephoned and asked to meet the research team. Only 20 of them agreed to talk about the dying and death of their relatives; for the rest the issue was still too painful. During the meeting with 2 researchers, participants were asked to comment freely on the points of the Assessment of Dying in Lung Cancer Patients questionnaire and to score the Quality of Dying Apgar. Results. Family members of 15 of the patients stated recognizing the dying of their loved one. They concluded this on the basis of exacerbation of symptoms, "typical" appearance, change in behaviour or particular words the patient said to them. The median score of the quality of dying was 6.5/10 (range 3-9). Lower scoring was observed for patients who died in hospital, without the family present at the moment of death and with uncontrolled symptoms. Only 5 of the relatives assessed pain and other symptom control as satisfactory. Other family members remembered pain (n = 9), dyspnoea (n = 8), delirium (n = 4) and other symptoms as disturbing the dying in a severe or moderate way. Three relatives assessed that their loved one's dying was not "dignified", mostly due to the severe physical suffering, the nursing being crucially remiss at the hospital and the patient's being alone at the moment of death. All family members were able to describe the healthcare professionals' attitudes and even repeat the statements they heard from them. Conclusion. We have demonstrated that several years after death many of the words and the behaviour of the dying patients were still alive in their relatives' memories. The family members remember how the healthcare professionals behaved and what they said to them. While caring for dying people, we should bear in mind that the way in which we behave may either give strength to the family or destroy their peace of mind for many years.Background. The aim of our study was to assess how relatives remember the dying of lung cancer patients several years after their death. Methods. The family members of 45 non small-cell lung cancer patients who died up to 7 years after radical surgical treatment were telephoned and asked to meet the research team. Only 20 of them agreed to talk about the dying and death of their relatives; for the rest the issue was still too painful. During the meeting with 2 researchers, participants were asked to comment freely on the points of the Assessment of Dying in Lung Cancer Patients questionnaire and to score the Quality of Dying Apgar. Results. Family members of 15 of the patients stated recognizing the dying of their loved one. They concluded this on the basis of exacerbation of symptoms, "typical" appearance, change in behaviour or particular words the patient said to them. The median score of the quality of dying was 6.5/10 (range 3-9). Lower scoring was observed for patients who died in hospital, without the family present at the moment of death and with uncontrolled symptoms. Only 5 of the relatives assessed pain and other symptom control as satisfactory. Other family members remembered pain (n = 9), dyspnoea (n = 8), delirium (n = 4) and other symptoms as disturbing the dying in a severe or moderate way. Three relatives assessed that their loved one's dying was not "dignified", mostly due to the severe physical suffering, the nursing being crucially remiss at the hospital and the patient's being alone at the moment of death. All family members were able to describe the healthcare professionals' attitudes and even repeat the statements they heard from them. Conclusion. We have demonstrated that several years after death many of the words and the behaviour of the dying patients were still alive in their relatives' memories. The family members remember how the healthcare professionals behaved and what they said to them. While caring for dying people, we should bear in mind that the way in which we behave may either give strength to the family or destroy their peace of mind for many years

Jak najbliżsi pamiętają umieranie chorych na raka płuca po 2-8 latach? Badanie jakościowe oparte na wywiadach z członkami rodzin

Wstęp. Celem badania była ocena, jak bliscy pamiętają umieranie chorych na raka płuca kilka lat po ich śmierci. Materiał i metody. Zaproszenie do udziału w badaniu przekazano telefonicznie rodzinom 45 chorych, którzy zmarli do 7 lat po radykalnej resekcji niedrobnokomórkowego raka płuca. Tylko 20 z zaproszonych osób zgodziło się rozmawiać o umieraniu i śmierci ich najbliższych. Dla pozostałych ten temat był ciągle zbyt bolesny. Podczas spotkania z dwoma badaczami uczestników poproszono, aby w swobodny sposób odnieśli się do problemów poruszonych w kwestionariuszu Oceny Umierania Chorych na Raka Płuca oraz spróbowali okreslić jakość umierania według skali The Quality of Dying Apgar (QODA). Wyniki. Krewni 15 pacjentów uważali, że byli w stanie rozpoznać okres umierania ich bliskich na podstawie nasilenia objawów, „typowego” wyglądu, zmiany zachowania lub szczególnych słów, jakie od nich usłyszeli. Mediana punktacji w skali oceniającej jakość umierania według QODA wynosiła 6,5/10 (przedział 3-9). Niższe oceny zanotowano w przypadku pacjentów umierających w szpitalu, których rodziny były nieobecne w czasie zgonu, a także jeśli objawy leczono w niedostateczny sposób. Jedynie rodziny 5 pacjentów uważały łagodzenie bólu i innych objawów w ostatnich dniach życia za zadowalające. Pozostali pamiętali, że ból (n = 9), duszność (n = 8), splątanie (n = 4) lub inne objawy zaburzały umieranie w znacznym lub bardzo nasilonym stopniu. Krewni 3 chorych stwierdzili, że umieranie ich bliskich nie było „pełne godności” przede wszystkim z powodu bardzo nasilonych objawów fizycznych, drastycznych zaniedbań pielęgnacyjnych w szpitalu i poczucia opuszczenia w momencie zgonu. Wszyscy uczestnicy badania byli w stanie opisać postawę lekarzy i pielęgniarek, a nawet powtórzyć wypowiedzi, które od nich usłyszeli. Wnioski. W badaniu pokazano, że nawet po kilku latach wiele słów, gestów i zachowań chorych z okresu ich umierania przechowywanych jest w pamięci ich rodzin. Członkowie rodzin pamiętają też, jak zachowywał się personel medyczny i jakich słów używał. Opiekując się umierającymi, należy uwzględnić, że sposób, w jaki się to robi, ma dla ich bliskich duże znaczenie i może ich albo wzmacniać, albo osłabiać na długie lata

The clinical course of cancer and mental adjustment

The aim of the article is to present the basic aspects of psychological functioning in the situation when an individual struggles with the diagnosis and treatment of cancer. The article discusses issues of distress experienced by cancer patients and factors predisposing to more severe distress. Moreover, the problems affecting the level of adjustment to the situation of disease and treatment are discussed and presented in three dimensions: as factors associated with the patient as an individual, with the disease itself and with the context of patient’s life. Attention is paid to anticancer treatment, which is a huge burden for patients and, in many cases, adjustment to such a burden is a considerable challenge. The awareness of the specificity of psychological reactions to individual stages of the disease is significant for people who work with such patients or relatives who accompany them through their disease. The paper provides a characteristics of a psychological reaction to the diagnosis of cancer and presents the specific character of the remission period as well as a possible recurrence. Moreover, it discusses the advanced and terminal phases of the disease. The aforementioned stages are presented based on personal relevance of a given stage to the individual patient. Furthermore, the most common emotions are described and the psychological tasks with which patients struggle in the given stages of cancer are discussed. The last part of the paper concerns patients’ need for information. The quality and level of communication of the patient with the therapeutic team considerably affects the way they cope with the disease and therapy. The paper also discusses the most commonly mentioned needs of patients and/or their families at individual stages of the disease and phases of treatment.Celem artykułu jest przedstawienie podstawowych aspektów psychologicznego funkcjonowania w sytuacji zmagania się z rozpoznaniem i leczeniem choroby nowotworowej. Poruszono zagadnienia dystresu doświadczanego przez chorych na raka i przedstawiono czynniki predysponujące do jego większego nasilenia. Omówiono kwestie wpływające na poziom adaptacji do sytuacji choroby i leczenia, które ujęto w trzech wymiarach: czynniki związane z osobą chorego, samą chorobą nowotworową oraz kontekstem życiowym pacjenta. Poświęcono uwagę leczeniu przeciwnowotworowemu, które jest niezwykle obciążające dla chorego i w wielu przypadkach stanowi duże wyzwanie w satysfakcjonującym przystosowaniu się do niego. Niezwykle istotna dla osób pracujących z chorymi czy towarzyszących im w chorobie z pozycji bliskiego jest świadomość specyfiki psychologicznych reakcji na poszczególne etapy choroby nowotworowej. W pracy scharakteryzowano psychologiczne reakcje na diagnozę raka, omówiono specyfikę czasu remisji, a także ewentualnego nawrotu oraz przedstawiono opis fazy zaawansowanej i terminalnej. Wymienione etapy zaprezentowano poprzez osobiste znaczenie danej fazy nowotworu dla chorego, wymieniono najczęściej doświadczane emocje, a także ukazano zadania natury psychologicznej, z jakimi zmaga się pacjent w poszczególnych okresach choroby. Ostatnia część pracy dotyczy potrzeb informacyjnych pacjentów. Jakość i poziom komunikacji chorego z zespołem leczącym znacząco wpływa na radzenie sobie z chorobą i jej leczeniem. Zobrazowano najczęściej wnoszone potrzeby pacjentów i/lub ich rodzin na poszczególnych etapach rozwoju nowotworu i podejmowanego leczenia

Prospective evaluation of anxiety, depression and quality of life in medically inoperable early stage non-small cell lung cancer patients treated with stereotactic ablative radiotherapy

AimThe aim of this prospective study was to evaluate the level of anxiety, depression, and quality of life (QoL) in medically inoperable patients with early stage non-small cell lung cancer (NSCLC) treated with stereotactic ablative radiotherapy (SABR).BackgroundProlonged survival is equally important as maintaining high QoL and good psychological functioning during the treatment of lung cancer. Nowadays available SABR has markedly changed clinical care and outcomes in the group of medically inoperable patients. To our knowledge, analysis of QoL and psychological state has not been performed in Polish patients with early NSCLC treated with SABR.Materials and methodsResearch group consisted of medically inoperable, early NSCLC (T1-2aN0M0) patients qualified to SABR. Patients were asked to complete Polish versions of the European Organization for Research and Treatment of Cancer Quality of Life – Core Questionnaire (EORTC QLQ-C30) with the Lung Cancer Questionnaire (LC13) and Hospital Anxiety and Depression Scale (HAD). These questionnaires were repeated 2 weeks and then 3 months after treatment completion.ResultsWe enrolled 51 patients who met the inclusion criteria. SABR did not deteriorate QoL and psychological functioning. On the contrary, clinically meaningful improvement was observed in emotional functioning, level of insomnia, anxiety and depression. Significantly worse improvement was shown in patients with chronic obstructive pulmonary disease (COPD).ConclusionsOur results confirm that SABR is well tolerated and does not have a deleterious effect on QoL and psychological state. Results of our study indicate the importance of additional psychological care in the group of patients with COPD