Super Advocate: Laura Gheorghiu Seeks Better Care for Her Mom—and for Cancer Patients Across Canada

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…

Clinical Trial Reduces Stress of Cancer Caregivers

“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.”

Living With Cancer: Patients on Our Own

“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.”

Dying Patients' Choices Not Always Aligned to Caregivers'

“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.”

Caregivers of Patients with Cancer Often Have Unmet Support Needs

“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.”

Super Patient: Patient Advocates Help Susan Steel Win Admittance to Clinical Trials

Update:  We are deeply saddened to report that Susan passed away on January 13, 2016. It is a privilege to continue to share her story and keep her memory alive.

When Susan Steel first noticed the mole that derailed her life ten years ago, she was busy raising two children and running two businesses. “I just wasn’t paying attention,” she says. It wasn’t until the mole grew and started to bleed that she finally saw a doctor—and then she was hit with the news that she had melanoma and that it had spread to her lymph nodes.

“My life changed very fast,” Susan recalls. “I was told that my chances were very slim and that I should get my affairs in order.” Continue reading…

Easing Cancer's Effects through Focus on Relationships

“Cancer patients look to oncology specialists for highly skilled treatment. Yet others may affect their disease experiences – their partners, wives, husbands or close family members.

“In recent years, there has been growing recognition that close relationships are important to fostering good cancer care. Treating the whole patient transcends beyond physical medicine to address cancer’s psychosocial impact as well, including stresses on partnerships and families.

“Psychologist Sharon L. Manne, associate director for population science at the Rutgers Cancer Institute of New Jersey, studies cancer’s effect on relationships, especially couples. Her work explores emotional and psychological needs, ways to increase communication and methods of strengthening intimacy between partners.

” ‘Most people don’t expect to ever be diagnosed with cancer. Coping is important,’ Manne says. In her work, she has found that developing more relationship support and intimacy reduces stress and facilitates well-being. ‘As a research center, our goal is to improve quality of life for patients and families.’ “

Better Communication Needed between Breast Cancer Patients and Professionals

“Improved dialogue focused on basic disease information is needed between patients with metastatic breast cancer and their caregivers and oncologists, according to survey results released at the 37th Annual San Antonio Breast Cancer Symposium in Texas.

“The investigators said that improved dialogue can clarify patient/caregiver expectations about disease management and also dispel false beliefs that the principles guiding adjuvant treatment apply similarly to metastatic treatment.

“Musa Mayer, a breast cancer survivor and advocate with in New York City, presented results of the ‘Make your dialogue count’ survey, which was conducted from June 2014 through August 2014.

“The survey was developed for adult women with metastatic breast cancer (≥21 years of age), adult caregivers of women (≥21 years of age) with metastatic breast cancer who attend at least half the clinics visits of their loved ones, and medical oncologists who treat ≥5 women with metastatic breast cancer per month.”

Hospice Symptom Management System Benefited Patients, Caregivers

“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.”