Patients who are terminally ill and their caregivers get the so-called palliative care which focuses on reducing the suffering of the patients and easing the burden off caregivers and family members. This type of care, however, is not provided to less severe (but nonetheless life-threatening) chronically ill patients and their families. However, there is a general feeling that some of their needs – especially non-medical needs – aren’t given the attention they deserve, according to a research study reported at the American Heart Association’s 10th Scientific Forum on Quality of Care and Outcomes Research in Cardiovascular Disease and Stroke. This is especially true in patients with heart failure (and their caregivers), who expressed distress over the following:
Researchers at the University of Colorado Denver School of Medicine conducted in-depth interviews with 33 outpatients with heart failure and 20 caregivers. The interviewees were asked what the following in relation to the situation of having heart failure:
- What causes them distress?
- What would they find most helpful?
- What are the unmet needs with regards to symptom management, psychosocial care and planning?
The results of the interviews indicate that
Uncertainty causes a lot of distress.
Patients and their caregivers want to know more about what to expect about the disease, its management, and prognosis.
Patients also need more help with symptom relief.
Finally, patients and carers expressed their desire for more communication with their health care providers.
According to lead researcher Dr. David Bekelman
“Most teams treating heart failure are medically focused. There is little guidance on the emotional, financial, spiritual and social impact of heart failure. This study helps define a role for palliative care in addressing the needs of heart failure patients and their caregivers.”
It seems that chronically ill patients such as those with heart failure have unmet needs that go beyond just mere medical care. There is a need for psychological and social support for these patients and their caregivers. Previous studies have shown that heart patients are prone to depression that can affect their overall quality of life. Their caregivers are affected as well.
Dr. Bekelman continues:
“There are unmet needs in the management of this disease. People need to know what to expect in the future of the illness and require help in adjusting to the limitations of heart failure by learning what steps they can take to improve the quality of their lives.”
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