Symptom burden and palliative care needs of breathless patients with severe COPD are considerable and as high as among patients with advanced primary and secondary lung cancer although patients with COPD have a longer survival.

Breathlessness is a distressing symptom in advanced disease. Little is known about the trajectories of this symptom over time and towards death. This study aimed to describe and compare the summary and individual trajectories of breathlessness and overall symptom burden over time and towards the end of life following patients with advanced cancer or severe chronic obstructive pulmonary disease (COPD) in inpatient and outpatient health care settings in Germany. The modified Borg Scale, Memorial Symptom Assessment Scale Short Form and Palliative Outcome Scale were used as outcome measures. Data were collected at baseline and then monthly over six months or until death. Forty-nine cancer and 60 COPD patients were included. Both groups had similar demographics. Thirty out of the 49 cancer and 6/60 COPD patients died, 7/49 cancer and 20/60 COPD patients dropped out due to physical deterioration or questionnaire fatigue. In cancer patients, breathlessness increased towards death. In COPD patients, breathlessness increased over time. Twenty-one cancer and 43 COPD patients provided data for individual breathlessness trajectories. These revealed wide individual variations with four different patterns: fluctuation, increasing, stable and decreasing breathlessness. Symptom trajectories on the population level reflecting the whole group mask individual variation, which is reflected in distinct symptom trajectories with different patterns.

BackgroundBreathlessness is common and distressing in advanced disease. This phase II study aimed to determine the use and acceptance of a hand-held fan (HHF) to relieve breathlessness, to test the effectiveness of the HHF and to evaluate the recruitment into the study.MethodsRCT embedded within a longitudinal study testing a HHF over time compared to a wristband. Patients were included in the longitudinal study when suffering from breathlessness due to advanced cancer or COPD III/IV and could opt in the RCT. Primary outcome was use of the HHF and the wristband after two months. Secondary outcomes were recruitment into the trial and change of breathlessness severity after two months, measured on the modified Borg scale. Baseline data were collected in a personal interview and follow-up data by monthly postal questionnaires.Results109 patients were recruited in the longitudinal study of which 70 patients (64%) participated in the RCT. Non-participants had statistically significant less breathlessness (Borg mean 2.6 (SD 1.48) versus 3.7 (SD 1.83); p = 0.003) and a better functional status (Karnofsky status mean 61.9 (SD 11.2) versus 66.7 (SD 11.0); p = 0.03). Attrition due to drop out or death was high in both groups. After two months, about half of the patients used the HHF but only 20% the wristband without a statistical difference (Fisher's exact test p = 0.2). 9/16 patients judged the HHF as helpful after two months and 4/5 patients the wristband. There was no difference in mean breathlessness change scores between the HHF (Borg change score: mean 0.6 (SD 2.10)) and the wristband (mean 0.8 (SD 2.67)) after two months (p = 0.90).ConclusionsSymptom burden and low functional status did not restrain patients from participation in the study. Finding a control for a visible intervention is challenging and needs careful consideration to what is acceptable to patients. The preliminary evidence of effectiveness of the HHF could not be proved. Patients often stopped using the HHF but a small group seemed to benefit which was not necessarily related to a relief in breathlessness. Therefore, more work is necessary on selecting and identifying those who might benefit from the HHF.Trial registrationClinicalTrials.gov Identifier: NCT01123902

Due to its chronic and fluctuating time course, multiple sclerosis (MS), thus far, has not been regarded as a focus of palliative care. However, sometimes we are confronted with severely affected MS patients, who suffer from complex medical, physical and psychosocial problems, which are not fully covered by the current health care services. We present two cases of severely affected MS patients we saw in our outpatient MS clinic, and who, we believe, are candidates for palliative care. The first patient, with primary chronic progressive (pcP) MS for many years (Expanded Disability Status Scale (EDSS): 8.0) presented with complex painful dysaesthesias and a depressive syndrome. He refused any treatment, and finally committed suicide with the help of a euthanasia group in Switzerland. The second patient was also severely affected by a secondary chronic progressive (scP) MS (EDSS: 9.0) and was finally admitted to our palliative care unit due to a complex pain syndrome associated with panic attacks and anxiety. She spent three weeks on the palliative care unit and her symptoms improved gradually after changing and optimising her pain medication. The patient was discharged with home care and is seen regularly on the palliative care unit. Additionally, as a first step, a questionnaire was sent to 53 German MS specialists regarding their general view on the needs for palliative care in MS. Our two cases and the results of the questionnaire demonstrated that MS patients and their caregivers are confronted with a variety of symptoms which are difficult to treat, and are a cause of great suffering for the patients, including ataxia, depression and fatigue. The data of the questionnaire also showed that neurologists usually do not deal with end-of-life care issues in MS.More research is needed to define the role of palliative care in MS and establish appropriate interventions to improve the quality of life in advanced stage MS patients and their relatives.

Background: Nausea and vomiting are common symptoms in patients with malignant disease. Several, sometimes rare causes have to be considered to decide the right treatment. Case Report: We report of a patient suffering from advanced breast cancer and complaining of severe nausea and vomiting over several weeks without any successful treatment. Later on, she developed marked hyperpigmentation of the skin and hypo-osmolar dehydration. Adrenal enlargement was noted in an abdominal scan. The suspected diagnosis of primary adrenocortical insufficiency due to metastases was confirmed by laboratory tests. After replacement therapy with hydrocortisone and fludrocortisone, the general condition of the patient improved dramatically and the symptoms of nausea and vomiting disappeared completely. Conclusion: If a patient with advanced cancer presents with unexplained and protracted nausea, vomiting and weakness, particularly if accompanied by hyponatremia and normal potassium levels, adrenal insufficiency due to adrenal metastases should be considered.