Module 9 Pull Down Navigation - Select a Page to View ------------------- Introduction What is an Advance Care Plan? Importance of an Advance Care Plan Advance Care Plan Components Getting Started on an Advance Care Plan Questions for Your Doctor or Nurse Discussions with Your Doctor or Nurse Making Care Choices as Heart Failure Progresses What to Do with Your Advance Care Plan Changing Your Mind Care for the Caretakers Terms Commonly Used in Advance Care Planning Learn More About Heart Failure

Making Care Choices as Heart Failure Progresses

Some people worry about burdening their families as their heart failure progresses and about dying in pain. When patients and families are told "nothing more can be done", they often interpret this to mean that their doctor or hospital will no longer care for them. This is not true. You are entitled to continue to receive medical care and have your pain managed no matter what stage of heart failure you have. Additionally, you can choose how you will be cared for and where you receive that care as your heart failure progresses. Some people prefer to be cared for and die in their homes. Others may prefer to die in a hospital.

The following sections discuss some care options:

• Palliative care.
• Hospice care.
• Home health care.
• Other supportive care.

Palliative Care

Palliative care programs are designed to improve the quality of life of patients and their families when they are faced with a life-threatening illness. Since the course of heart failure may not be predictable, this type of program does not have the same entry requirements as a hospice program, which typically requires patients to have a life expectancy of 6 months or less.

Palliative care programs are very similar to hospice programs in that their goals are patient comfort and quality of life rather than cure. They typically take many dimensions of a person's life into account (physical, social, spiritual, and psychological) and seek to individualize care to meet the unique needs of each person. In addition, patient education is part of the care plan and can include education about ways to decrease shortness of breath, conserve energy for important activities, and monitor your condition.

Hospice Care

Hospice programs promote the notion that dying is a normal part of living. These programs provide medical and supportive services to a patient expected to be in the last 6 months of life. Hospice care can be provided in different settings including the patient's home, a hospice unit, or a nursing home.

Hospice programs are intended to provide care and support 24 hours a day, 7 days a week according to the following guidelines:

• The goal of care is to comfort rather than cure the patient.
  
  
• Pain relief and symptom control are designed to meet the needs and desires of the patient and are obtained by whatever means necessary.
  
  
• The patient is not treated in isolation. The family is included in the unit of care.
  
  
• The patient and family can control and set the agenda for day-to-day care.
  
  
• A multidisciplinary team that includes nurses, volunteers, chaplains, therapists, bereavement counselors, social workers, and doctors are there for the patient.
  
  
• Care includes a spiritual component (not specific to one religion or faith) to help patients discuss and reconcile the meaning of end-of-life.
  
  
• Long-term bereavement support is available for family and friends.
  
  

Home Health Care

Whether you choose a palliative care program, a hospice care program, or no program at all, it is likely that you will feel more tired and be short of breath as your heart failure. progresses. Your doctors and nurses may recommend home health care nursing to monitor your status and adjust your therapy to keep you comfortable without shortness of breath.

A home health care nurse can monitor your vital signs, weight, heart failure status, blood laboratory work, and medication dosing. He or she may also administer intravenous medications at home to decrease the discomfort and pain of breathing, and prevent hospitalization.

Other Supportive Care

Occupational therapists, respiratory therapists, and physical therapists can help you move and breathe more easily and keep your muscles conditioned so you have fewer aches and pains with movement. These health care providers can also help you get equipment so you can do your day-to-day activities more easily. Examples include a shower stool, wheelchair, scooter, home oxygen, or a ramp that goes over the stairs.