New Guide Helps Families Get Quality Palliative Care for Relatives and Friends

The National Alliance for Caregiving (NAC) and New York City-based Friends and Relatives of Institutionalized Aged (FRIA) have joined to create a booklet to help family caregivers advocate for palliative care on behalf of relatives in long-term care settings.

The 16-page booklet, entitled Palliative Care: Complete Care Everyone Deserves, provides an easy-to-understand definition of palliative care, descriptions of who can benefit from palliative care, the elements of good palliative care, advice on how to obtain such care, and a list of related resources. A special section also addresses ways that families can work with long term care facilities such as nursing homes to ensure their loved ones receive any necessary palliative care.

The impetus for the development of the booklet was the recognition that there exists a lack of quality information on palliative care written with families in mind. A review of scientific literature on the topic conducted by NAC and FRIA revealed that when families are caring for a loved one suffering from a chronic, progressive condition such as congestive heart failure, multiple sclerosis, or Alzheimer’s disease, they often lack the information needed to be effective advocates for improving the comfort of the person receiving care. The literature review also found that healthcare professionals are not always quick to provide types of care that might fall outside of “curative” treatments.

To request a copy of this free booklet, send an e-mail to info@caregiving.org (The booklet is also available for downloading on NAC’s Web site.)