Advanced CHF and COPD: Guidance for Family Caregivers

More Americans will die from diseases of the heart and the circulatory system than from any other cause. For most, the death will seem sudden, even if the person has been ill for some time. People with advanced heart disease or advanced lung disease have episodes of serious illness, and then long periods of stability in which nothing seems to happen. Although people may recover, they may not return to their previous level of functioning, and yet, at times, they may not seem to be very ill.

Living with Congestive Heart Failure and Living with Advanced Lung Disease are guides for family caregivers produced by the Center to Improve Care of the Dying [ www.medicaring.org ]. They include patient education and self-management tips for living well with either advanced congestive heart failure (CHF) or advanced lung disease, particularly chronic obstructive pulmonary disease (COPD). Because CHF and COPD have some similar features, the online manual combines the following two print resources into a single education resource.

These manuals focus on five key topics for family caregivers:

  • Advanced CHF and advanced COPD and their progression
  • Disease management strategies to help patients remain comfortable and at home
  • The role of the family caregiver
  • End-of-life issues and how to make advance care plans
  • Living well with the disease

As you read, talk to your loved one and make sure that you both understand the information provided. You will need to talk openly and frequently with your loved one and you will want to confer with health care professionals. As you read, be sure to:

  • Understand the material in each section. If something is unclear, can your family member explain it? If not, ask the doctor or nurse.
  • Answer questions about yourself and your loved one. If possible, compare answers.
  • Talk to your loved one about his wishes and preferences for care. Make sure that you both understand those decisions and convey them in writing to the doctor or medical team.
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Material in the online version that is specific to one disease or another is marked with one of these icons.