RESOURCES

Caregivers & Palliative Care

Many family caregivers are not prepared to take on the demanding role of caring for a loved one with a life threatening illness. Caregiving becomes a fulltime job when managing pain and other medications, monitoring equipment and communicating with various medical specialists, all the while continuing to maintain regular responsibilities at home and work.

A caregiver’s first introduction to palliative care is usually during a crisis: A difficult time to process and accept new information. Caregivers may have some previous knowledge of palliative care but it is often incomplete or inaccurate. Even after being presented with palliative support programs caregivers may reject or dismiss the information.

Palliative Care in the Treatment Plan

Studies have shown that the earlier palliative care is introduced into the course of an illness or treatment provides a better understanding by the caregiver and positive outcome for the patient. The medical community has a long way to go in understanding the importance of bringing the caregiver into the discussion and listening to their concerns. As caregivers, your requests for information and practical training regarding the skills needed to take care of your loved ones should never be ignored. Your health and wellbeing is critically important to the continuing care of their patient – your loved one.

Palliative Care Services

Palliative care providers are slowly beginning to adapt and incorporate some of their hospice programs and services now to caregivers with loved ones in palliative care. Inquiries about how you feel and concern about your emotional, mental and physical wellbeing are still made but practical information regarding specific training, guidelines, and tips about the skills you need to take care of your loved one may be making an appearance soon. Until those programs are available, do not be afraid to ask questions and to ask them again if you don’t understand the answer or until you receive the answer that you need. You must advocate for your loved one and yourself. It is never wrong to ask “Why?”, “Why not?” or “How?”

Additional Resources

National Coalition for Hospice and Palliative Care

Clinical Practice Guidelines for Quality Palliative Care – Second Edition

In association with consortium organizations:

Navigating the Healthcare System: A Workshop for People with Cancer and their Family Caregivers – Trainer’s Guide

EPEC Project (Education in Palliative and End of Life Care): Partnership with Northwestern University’s Feinberg School of Medicine

Also, patient centered brochure series:

  • Communicating with Your Healthcare Team
  • Learning about Goals of Care
  • Learning about Burnout
  • Learning about Conflict

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