Laura Gheorghiu’s mother didn’t usually go to the doctor for just a cold. After she moved to Québec four years ago, it took a long time to get a family doctor through the public healthcare system and, until then, seeing one meant sitting for hours in a walk-in clinic. But she did seek care for a cold late last fall. For one thing, she finally had a doctor. For another, she had a really bad cold. Continue reading…
“Stem cell transplant is essential in the care of many blood cancers, but leaves patients requiring in-home care for months after. Frequently the role of caregiver falls to family or other committed members of the patient’s support network. Previous work shows dramatically increased stress in cancer caregivers, directly impacting the caregiver and indirectly impacting the cancer patient via reduced quality of care. A randomized control trial funded by the National Cancer Institute by members of the University of Colorado Cancer Center, published in the journal Bone Marrow Transplantation, demonstrates an intervention that successfully reduces the stress of caregivers in the context of cancer patients treated with stem cell transplantation.
” ‘The first 100 days after a stem cell transplant is a critical period for patients in which caregivers are called upon to deliver around-the-clock care, providing support for patients’ everyday needs and also patients’ emotional health. But who takes care of the caregivers?’ says Mark Laudenslager, PhD, investigator at the CU Cancer Center, director of the Behavioral and Endocrinology Laboratory at the CU School of Medicine, and the paper’s first author.”
“I had to take my husband back to the hospital for a second operation on a torn tendon, but the pills from the cancer trial had not yet arrived. Surely doing without one or two days of the drug would not necessarily lead to a recurrence, I told myself in an effort to still rising waves of anxiety. There were more pressing matters to attend, namely righting wrongful care.
“Two weeks earlier, a fall on the basement steps led to an operation on Don’s knee. The surgeon called it a success and sent us home. After I wrote an essay about my welcoming the prospect of caring for my beloved caregiver, the first reader responded: ‘No one has training in these tasks, especially families who are too emotionally connected to really be effective.’ A nurse judged our being entrusted with home care ‘dangerous.’ They were both spot on.
“The first night home in a brace, Don’s leg buckled beneath him and he fell again. At the ER, he was given a longer brace. However two arduous weeks later — while we thought the knee was healing — the orthopedic surgeon explained that the tendon had torn again probably because of that fall two nights after surgery: Don would need a reoperation.”
“Patients with advanced cancer or other life limiting illnesses often have to consider how much money they are willing to spend on high cost treatments that result in only moderate improvements in length or quality of life. These decisions are very difficult for patients to make, and in some cases the decision is entirely deferred to a family caregiver.
“Past research has shown that in addition to extending life, being free of pain and dying at home are important considerations for people nearing the end of their lives. However, the value that patients place on these considerations or their willingness to pay for either was not previously known.
“A team led by Professor Eric Finkelstein and Assistant Professor Chetna Malhotra from the LCPC in Duke-NUS Graduate Medical School (Duke-NUS) administered surveys to 211 patients with stage IV cancer and their informal caregivers to find out more about their end-of-life preferences.”
“Unmet health care service and information needs, as well as emotional and psychological needs, were common among caregivers of patients with cancer, according to study results.
“Halina Sklenarova, MA, of the department of general internal medicine and psychosomatics at Heidelberg University Hospital in Germany, and colleagues evaluated data from 188 pairs of patients with cancer and their caregivers.
“The mean age of the caregivers was 57.8 years, and 72.3% were female. The mean age of patients was 62.5 years, and 67% were male. Patients in the cohort had lung (34.6%), urological (34.6%) or gastrointestinal (30.8%) cancers.
“Caregivers completed the Supportive Care Needs Survey self-report questionnaire and patients completed a corresponding questionnaire.
“Results showed 43.6% of caregivers indicated having more than 10 unmet needs, and 42% indicated having fewer than 10 unmet needs. About one in seven (14.4%) caregivers reported having no unmet needs.”
“A telephone-based symptom monitoring and coaching system improved patient symptoms and their caregiver’s well-being during hospice care, according to study results presented at the Palliative Care in Oncology Symposium.
“ ‘Within hospice care, there is this important triad that is made up of the hospice nurse, the dying patient and the family caregiver,’ researcher Bob Wong, PhD, director of applied statistics and research associate professor at the University of Utah College of Nursing, said during a press conference. ‘This study differs from many studies in the past that have focused on either the patient or just the caregiver themselves.’
“The analysis included 319 families who were receiving hospice care. Wong and colleagues assigned 153 families to the automated telephone symptom monitoring system. The other 166 patients received usual care.
“Caregivers from all the families called into the monitoring system daily to report the patient’s symptoms — including pain, difficulty breathing, change in thinking, constipation or diarrhea, bladder difficulties, nausea/vomiting, fatigue/weakness, negative mood, anxiety, trouble sleeping and poor appetite — from the previous 24 hours. The caregivers also were asked about their own fatigue, anxiety, sleep and mood.
“Families who were assigned the intervention then received automated coaching suggestions to address the symptoms of the patient and caregiver, and reports on unrelieved symptoms were sent to the hospice nurse.”