So many things have changed in people’s lives in recent months. The stressors of everyday life are magnified when living during a pandemic—even more so for those who living with a serious illness. That is why it is especially important to support and appreciate those with serious illnesses and their caregivers this November during National Family Caregivers Month and National Hospice and Palliative Care Month.
NINR has a unique place within NIH as the lead Institute on end-of-life care. However, we also recognize that palliative care is a critical part of maintaining quality of life at any stage of illness, not just at the end of life. Our science-based resources are designed to support individuals, families, clinicians, and communities who are managing the symptoms of serious illnesses and planning for end-of-life decisions.
NINR’s “What is Palliative Care?” webpage explains palliative care and provides answers to questions that patients and families may have. Palliative care brochures and fact sheets are also available on our website and can be downloaded or ordered free of charge. We have a suite of materials specifically related to pediatric palliative care, including videos, family stories, and a toolkit for health care providers. One parent told us that palliative care has provided them “with a medical team who knows our family, understands our goals, sees the big picture, and helps us think through difficult decisions.”
Related to caregivers, NINR just released a series of fact sheets as part of an end-of-life caregiving series. Although we know that every caregiver’s experience is different, these new resources, which are available in English and Spanish, offer some guidance to consider when caring for someone at the end of life. They cover topics such as caring for yourself while caregiving, communicating as a caregiver, and taking control of caregiving.
We encourage you to explore NINR’s resources and research efforts in end-of-life and palliative care science and to share these with your colleagues, patients, friends, and families in November and throughout the year.