Suffering in Terminal Cancer Patients Dying at Home
Suffering in Terminal Cancer Patients Dying at Home
The present study in end-of-life cancer patients in the home setting and in the care of primary care physicians demonstrated that weakness was the most prevalent physical symptom (93%), which was unbearable in approximately half of the patients. Pain was present in 72% of patients and was unbearable in a quarter of patients. A large variety of symptoms was present. If symptoms were of high intensity than unbearability frequently occurred for pain, loss of control, fear of future suffering, not being able to do important things and not sleeping well (86–92%). If symptoms were of low intensity than unbearability frequently occurred for loss of control, vomiting, not being able to do important things, not sleeping well and loss of appetite (39–80%). The prevalence of symptom intensity increased significantly between on average four months before death and on average one month before death for general discomfort, being bedridden and help needed with self care; the prevalence of unbearability significantly increased for weakness. Intensity and unbearability of pain were unchanged in the longitudinal follow-up. Evaluation of the qualitative study outcomes demonstrated that physical suffering, loss of autonomy, loss of meaning, fear of future suffering, experiencing to be a burden to others and worrying were significantly more prevalent in patients with overall unbearable suffering. The combined emotional symptoms of psychological distress were higher in patients with overall unbearable suffering.
The study was realized despite relevant barriers to research of end-of-live cancer patients in primary care (low prevalence of the studied patients, geographical dispersed setting of patients, physicians and researchers, difficulty of recruitment of end-of-life cancer populations for research). The 51% recruitment proportion of requested patients is comparable to recruitment proportions in secondary care studies investigating end-of-life cancer patients.
The study has limitations. The small sample size inhibited significant statistical analysis of the data of the relationship between intensity of symptoms and unbearability. Unexpected rapid physical deterioration limited the number of interviews shortly before death. The study sample concerns a Western population of patients in a specific setting of care, which limits generalizability.
No quantitative studies of unbearable suffering were found. Two studies qualitatively investigated unbearable suffering in mixed diagnostic populations (also other diagnoses than cancer) and identified physical, psychosocial and existential themes which contributed to the suffering. In end-of-life cancer patients in secondary care overall moderate to extreme suffering was reported present in a range of 25%-81%, with physical symptoms, psychological distress and existential concerns contributing to the suffering. The prevalent physical symptoms in this study, such as weakness, tiredness, general discomfort, changed appearance, pain and loss of appetite, are also prevalent in secondary care studies.
Palliative home care has to meet the challenge of reducing unbearable suffering in end-of-life cancer patients. Between countries substantial differences in organization of palliative home care exist. Palliative home care is provided in various models, such as general practitioner delivered palliative care and home-based hospice care. The services provided within these models are not standard and few studies have assessed the intensity of palliative home care delivery in the last months of a patient's life. Transitions from oncology care to palliative care may influence patient well-being. Palliative care is an accomplished formal medical specialization in some countries, providing possibility of structural integration of specialist palliative care within various health care settings, and providing possibility of educational fellowship rotations for various medical health specialties. In the Netherlands palliative care is not a specialty. Psycho-oncologic interventions provided by mental health professionals have been tested in various cancer populations. Yet, for bed-ridden end-of-life cancer patients at home the contributions of psycho-oncologic interventions hardly are found applied or tested.
In the Netherlands legalized EPAS, with the compulsory criterion of unbearable suffering, most frequently concerns end-of-life cancer patients in primary care. It therefore appears that unbearable suffering prevalently is experienced in end-of-life cancer patients cared for in primary care. However, in the absence of studies it must be acknowledged that it is unknown which part of unbearably suffering patients die as a consequence of EPAS, nor is it clear which are the decisive steps from unbearable suffering to EPAS. Some specific situations in primary palliative care may influence suffering. Patients referred back from oncology care to home care, after hearing that no more treatment remains to slow down progress of cancer, may be demoralized. Preference of cancer patients to die at home may inhibit interventions which require the setting of secondary care. In primary care selection occurs of patients with an explicit request for EPAS as a consequence of referrals by secondary care physicians of patients with a request for EPAS to their primary care physician. The frequency of these informal referrals is unknown. Mechanisms of transference and counter-transference about coping with suffering may be more prominent in primary care as a consequence of strong patient-physician relationships. Further dynamics of care alter once a decision is made to proceed in a process towards EPAS.
Our study demonstrates many physical and psycho-social symptoms in end-of-life cancer patients cared for in primary care. Weakness was the most prevalent unbearable symptom. End-of-life cancer patients, in the home setting more than in hospital, may be confronted with loss of social role and autonomous functioning due to weakness. Pain, a potent cause of suffering, was unbearable in a relevant proportion of patients. The qualitative evaluation of the study indicates that core qualities of suffering were significantly more prevalent in patients who experienced overall suffering to be unbearable.
The results of our study underscore the need of adequate symptom control combined with psycho-oncologic interventions. Adequate control of adverse physical symptoms makes it easier to address patients' concerns about their families, about their own psychological integrity, and about meaning in their lives. Existential aspects of suffering are addressed by psycho-oncologic interventions directed at meaning and dignity. Other types of interventions address acceptance and reactive emotional states. Strength provided by the patient-physician relationship is another quality which may provide recovery from suffering. The present study also shows that high intensity of symptoms does not necessarily indicate suffering, while low intensity of symptoms indeed may be unbearable.
We conclude that end-of-life cancer patients in primary care must cope with physical symptoms, loss of meaning, the emotional impact of suffering and the poor prognosis. Primary care physicians, as part of education in palliative care, therefore should be trained in understanding and diagnosing the multiple dimensions of suffering. The use of a framework of domains of suffering provides structure in assessment of suffering. It is not enough to assess the suffering: when meeting patients and taking their history, clinicians should keep a mental log of the issues that can be improved.
Further studies, as to improve understanding and develop interventions, should address unbearable suffering in various settings of care and investigate which are decisive steps from unbearable suffering to EPAS.
Discussion
The present study in end-of-life cancer patients in the home setting and in the care of primary care physicians demonstrated that weakness was the most prevalent physical symptom (93%), which was unbearable in approximately half of the patients. Pain was present in 72% of patients and was unbearable in a quarter of patients. A large variety of symptoms was present. If symptoms were of high intensity than unbearability frequently occurred for pain, loss of control, fear of future suffering, not being able to do important things and not sleeping well (86–92%). If symptoms were of low intensity than unbearability frequently occurred for loss of control, vomiting, not being able to do important things, not sleeping well and loss of appetite (39–80%). The prevalence of symptom intensity increased significantly between on average four months before death and on average one month before death for general discomfort, being bedridden and help needed with self care; the prevalence of unbearability significantly increased for weakness. Intensity and unbearability of pain were unchanged in the longitudinal follow-up. Evaluation of the qualitative study outcomes demonstrated that physical suffering, loss of autonomy, loss of meaning, fear of future suffering, experiencing to be a burden to others and worrying were significantly more prevalent in patients with overall unbearable suffering. The combined emotional symptoms of psychological distress were higher in patients with overall unbearable suffering.
Strengths and Limitations
The study was realized despite relevant barriers to research of end-of-live cancer patients in primary care (low prevalence of the studied patients, geographical dispersed setting of patients, physicians and researchers, difficulty of recruitment of end-of-life cancer populations for research). The 51% recruitment proportion of requested patients is comparable to recruitment proportions in secondary care studies investigating end-of-life cancer patients.
The study has limitations. The small sample size inhibited significant statistical analysis of the data of the relationship between intensity of symptoms and unbearability. Unexpected rapid physical deterioration limited the number of interviews shortly before death. The study sample concerns a Western population of patients in a specific setting of care, which limits generalizability.
Comparison to Other Studies
No quantitative studies of unbearable suffering were found. Two studies qualitatively investigated unbearable suffering in mixed diagnostic populations (also other diagnoses than cancer) and identified physical, psychosocial and existential themes which contributed to the suffering. In end-of-life cancer patients in secondary care overall moderate to extreme suffering was reported present in a range of 25%-81%, with physical symptoms, psychological distress and existential concerns contributing to the suffering. The prevalent physical symptoms in this study, such as weakness, tiredness, general discomfort, changed appearance, pain and loss of appetite, are also prevalent in secondary care studies.
Interpretation
Palliative home care has to meet the challenge of reducing unbearable suffering in end-of-life cancer patients. Between countries substantial differences in organization of palliative home care exist. Palliative home care is provided in various models, such as general practitioner delivered palliative care and home-based hospice care. The services provided within these models are not standard and few studies have assessed the intensity of palliative home care delivery in the last months of a patient's life. Transitions from oncology care to palliative care may influence patient well-being. Palliative care is an accomplished formal medical specialization in some countries, providing possibility of structural integration of specialist palliative care within various health care settings, and providing possibility of educational fellowship rotations for various medical health specialties. In the Netherlands palliative care is not a specialty. Psycho-oncologic interventions provided by mental health professionals have been tested in various cancer populations. Yet, for bed-ridden end-of-life cancer patients at home the contributions of psycho-oncologic interventions hardly are found applied or tested.
In the Netherlands legalized EPAS, with the compulsory criterion of unbearable suffering, most frequently concerns end-of-life cancer patients in primary care. It therefore appears that unbearable suffering prevalently is experienced in end-of-life cancer patients cared for in primary care. However, in the absence of studies it must be acknowledged that it is unknown which part of unbearably suffering patients die as a consequence of EPAS, nor is it clear which are the decisive steps from unbearable suffering to EPAS. Some specific situations in primary palliative care may influence suffering. Patients referred back from oncology care to home care, after hearing that no more treatment remains to slow down progress of cancer, may be demoralized. Preference of cancer patients to die at home may inhibit interventions which require the setting of secondary care. In primary care selection occurs of patients with an explicit request for EPAS as a consequence of referrals by secondary care physicians of patients with a request for EPAS to their primary care physician. The frequency of these informal referrals is unknown. Mechanisms of transference and counter-transference about coping with suffering may be more prominent in primary care as a consequence of strong patient-physician relationships. Further dynamics of care alter once a decision is made to proceed in a process towards EPAS.
Our study demonstrates many physical and psycho-social symptoms in end-of-life cancer patients cared for in primary care. Weakness was the most prevalent unbearable symptom. End-of-life cancer patients, in the home setting more than in hospital, may be confronted with loss of social role and autonomous functioning due to weakness. Pain, a potent cause of suffering, was unbearable in a relevant proportion of patients. The qualitative evaluation of the study indicates that core qualities of suffering were significantly more prevalent in patients who experienced overall suffering to be unbearable.
The results of our study underscore the need of adequate symptom control combined with psycho-oncologic interventions. Adequate control of adverse physical symptoms makes it easier to address patients' concerns about their families, about their own psychological integrity, and about meaning in their lives. Existential aspects of suffering are addressed by psycho-oncologic interventions directed at meaning and dignity. Other types of interventions address acceptance and reactive emotional states. Strength provided by the patient-physician relationship is another quality which may provide recovery from suffering. The present study also shows that high intensity of symptoms does not necessarily indicate suffering, while low intensity of symptoms indeed may be unbearable.
We conclude that end-of-life cancer patients in primary care must cope with physical symptoms, loss of meaning, the emotional impact of suffering and the poor prognosis. Primary care physicians, as part of education in palliative care, therefore should be trained in understanding and diagnosing the multiple dimensions of suffering. The use of a framework of domains of suffering provides structure in assessment of suffering. It is not enough to assess the suffering: when meeting patients and taking their history, clinicians should keep a mental log of the issues that can be improved.
Further studies, as to improve understanding and develop interventions, should address unbearable suffering in various settings of care and investigate which are decisive steps from unbearable suffering to EPAS.