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END-OF-LIFE & HOSPICE
Be Aware of Your Words When a Loved One's Death Is Near
(Source: by Carol Bradley Bursack, Editor-in-Chief, www.eldercarelink.com)
It was when my mother died that the truth of studies on hearing, as it affects those in a coma, really came home to me. My mother had been in pain for years. Once she was declared terminal and the care the nursing home staff provided couldn't cover her needs, we called in hospice. Our local hospice worked seamlessly with the nursing home staff to care for Mom. MORE
Hospice Care As Seen by a Grateful Daughter
(Source: by Carol Bradley Bursack, Editor-in-Chief, www.eldercarelink.com)
My dad's body language told those of us who knew him well that he was in pain. As he reclined in his bed, he'd raise himself on an elbow and pound his fist into his opposing hand, grimacing as he did so. Over and over he'd slam fist into palm. He was trying to beat away the pain. Still, we saw the pain even though he couldn't articulate it. I talked with the nurses and they all agreed with me that hospice was the next move. He was dying in a manner that was unacceptable.
The head nurse pushed the doctor in charge to approve hospice care, but he refused. Because Dad was in a nursing home and on medications, he slept quite a bit. Some days he slept too much. It was fitful sleep, but the records kept by the nursing home said he slept. After checking the records, he said if Dad slept that much he couldn't be in pain. This doctor swept through the nursing home once a month (a nurse practitioner was there once a week). He read the records. That was that.
The nurse, however, was not one to back down and one day, while I was working at my job as a news librarian, I got the call. The doctor finally authorized hospice care. I was thrilled in that I knew our local hospice, Hospice of the Red River Valley, was one of the best. True, I was sickened in that I knew then we'd all have to admit that, yes, Dad was dying. But I knew it was time. MORE
(Source: Shari Roan / Los Angeles Times)
Patients and caregivers give poorer marks to end-of-life care in hospitals. (Mel Melcon / Los Angeles Times)
Cancer patients who die at home with hospice services had a better quality of life in their final days compared to similar patients who died in the hospital or intensive care unit, according to a new study. Moreover, the family members of the patients fared worse psychologically if their loved ones died in a hospital or ICU compared to home. The study, published Tuesday in the Journal of Clinical Oncology, suggests that experiences at the end of life are shaped by the setting. Hospital and ICU care may emphasize staying alive at all costs while hospice care emphasizes managing symptoms and comfort at the end of life. The study is also the first to show that caregivers of cancer patients who die in an ICU are at heightened risk for post-traumatic stress disorder.
The study, from researchers at the Dana-Farber Cancer Institute in Boston, followed 342 people with advanced cancer and their family caregivers for an average of four months. The patients' quality of life was assessed by their caregivers within two weeks of death. The caregivers answered questions about their own psychological distress at the time of death and six months later.
On a scale of 0 to 10 -- with 0 being the worst -- patients who died in the hospital rated their quality of life at 5.3 compared to 5.0 in the ICU, 6.6 at home with hospice and 7.3 at home. Those patients receiving hospice at home rated their physical comfort highest, at 6.6, compared to 3.6 in the ICU, which was the lowest rating. The authors noted the reason for the discrepancy may be due to the types of patients who choose to die at home with hospice care. But, they said, it's more likely the rating differences have to do with the different goals of an ICU and hospice.
Among caregivers, 21% of those whose loved ones died in the ICU or hospital developed post-traumatic stress disorder six months later compared to 4.4% of those whose loved ones died at home with hospice. The findings suggest that when caregivers are not prepared for death, they suffer more grief and stress. "It may be that attached caregivers cannot accept the patient's impending death and attempt to care for them at home until a medical crisis precipitates a terminal hospitalization," the authors wrote.
In a related study published Friday, researchers found that a special training program for doctors and nurses to improve the experience of end-of-life care in intensive care units didn't work. The healthcare professionals were trained to communicate better with family members and to take other measures to improve the patient's and family's satisfaction and comfort. But follow-up surveys showed the program made no difference in families' experiences with death in the ICU.
"It is very difficult to change busy critical care clinicians' ... behavior patterns, because they have a lot of pressures on them," the lead author of the study, Dr. J. Randall Curtis, said in a news release. "While we designed the intervention with that in mind, it was more difficult than we anticipated." The study was published online in the American Journal of Respiratory and Critical Care Medicine. LINK TO ARTICLE HERE --
Improving End-of-Life Care
Better psychological and spiritual support, better planning of care and stronger relationships with physicians are necessary to improve end-of-life care in Canada, states a study published in CMAJ (Canadian Medical Association Journal) (pre-embargo link only).
The study, a questionnaire that aimed to measure satisfaction with end-of-life care for patients with advanced diseases and their families, involved 363 patients over 55 years of age and 193 family caregivers. The patients, located in cities in British Columbia, Ontario, Quebec, Nova Scotia and New Brunswick, were all cognitively competent.
While overall satisfaction for end-of-life care was rated as good, ratings for complete satisfaction ranged from 9% to a high of only 57%, suggesting the need for improvement.
The highest priorities were improving the emotional support for patients, better communication and involvement in decisions and improving the relationship between the patient, family and doctor.
"High quality end of life care should be the right of every Canadian," says Dr. Daren Heyland, a researcher at Kingston General Hospital and Professor of Medicine and Epidemiology at Queen's University. "But it's not always happening. We know from international studies that Canada ranks 9th in the world in terms of quality of care provided at the end of life. Our research goal was to find out what people consider to be important at the end of life and how satisfied they were with the current care, and to provide this information to health care professionals to allow them to work towards developing that model of care."
"For both patients and families, the highest priority quality improvement issues were improving the emotional support provided to patients, improving communication with the health care team and improving decision-making," says Dr. Heyland. "Patients were least satisfied with their understanding of what to expect in the end stage, discussions with their physician regarding final location of care, and the use of technology at the end of life." LINK HERE
Encouraging Comfort Care: A Guide for Families of People with Dementia Living in Care Facilities
(Thank you Dan Kuhn)
The Alzheimer's Association-Greater Illinois Chapter is pleased to offer a free online resource, Encouraging Comfort Care: A Guide for Families of People with Dementia Living in Care Facilities. This 21-page booklet provides useful information to families and staff of long-term care facilities about Alzheimer's disease and other dementias, particularly care issues related to the late and final stages.
For families, this guide enables them to make informed choices about a variety of medical decisions they may face on behalf of loved ones with dementia living in nursing homes, assisted living facilities, and other types of care facilities. It will also equip families to ask good questions aimed at obtaining the best care for their loved ones, including a handy checklist of comfort care measures to be discussed with staff members of care facilities. For staff members of long-term care facilities, the guide serves as an important tool for those who wish to educate families and assist them in care planning. Encouraging Comfort Care was made possible through a generous grant from the Retirement Research Foundation.
Individuals and organizations are encouraged to disseminate this booklet in electronic and print formats. To view and download the free guide, click here.
A funeral home in a Brazilian city has begin to broadcast funerals live for the family members of the deceased who are living abroad, a media report said.
The Gonzaga funeral home, which is located in the interior of the state of Minas Gerais, now offers live transmission via the Internet of the Mass said for the deceased, the funeral procession and even the burial so that the 40,000 former residents of Governador Valadares who now live abroad can say their last goodbyes to their loved ones. 'We know that there exist funeral parlor chapels with cameras, but we're pioneers since we're offering a mobile service' covering events occurring outside the funeral home itself, funeral home director Eres Gonzaga told the daily O Globo. Governador Valadares, which has 230,000 residents, is one of the cities in Brazil that has sent the greatest percentage of its residents to the US. LINK TO STORY HERE
The Long and Short of Hospice Time in Nursing Homes (Research)
(Source: Frances Shani Parker, Author, Hospice and Nursing Homes Blog)
Through the years, I have had hospice patients stay as short as one day and as long as three years in nursing homes. With little quiet or privacy, almost all of them shared rooms with one to three non-hospice residents. My three-year patient was 94 years old. Having few visits from relatives and friends who lived out of town, her biggest fear was the possibility of being released from hospice care and the nursing home. I’ve also had rare happy patients who were released from hospice because their health improved.
One patient with dementia seemed to have a premonition that she would be leaving soon when she said to me one day, “I was wondering if you could help me find another apartment. I’ve been thinking about looking for a new place to stay, maybe a place closer to where I used to live. This apartment building is too noisy. Just close your eyes and listen to all the talking, buzzers, and everything. People come into my place without even knocking. They just walk right in and go through my closet and drawers. It’s not right. Three ladies even moved in with me when I wasn’t looking. Now, I can’t get them out.” I had never heard her say anything about leaving before. Two weeks later, she was released from hospice care and moved to a nursing home near her son’s house. MORE
When Do I Let My Mother Die?
(Source: Carol Bradley Bursack, Healthcentral.com)
The reality of caregiving is that many of us are forced to make difficult decisions on a day to day basis.
Sometimes, we need to decide if we should argue our reality against the reality of someone with Alzheimer's disease. Sometimes we have to decide whether we should encourage food or fluid intake to the point of forcing a loved one to eat or drink, or if we should step back and hope the right thing, whatever that may be, happens. Sometimes we have to decide what is "enough," when it comes to medical care for someone who is dying. The later of these decisions is one of the most painful decisions a family caregiver may ever have to make. MORE