Palliative Care and Heart Disease
Care that focuses on managing symptoms, such as pain or shortness of breath, and on improving quality of life is called palliative care.
Any member of your health care team—doctor, nurse or social worker—can provide palliative care. It is most often given along with care that aims to lengthen life. Sometimes, your team may include or recommend a provider who is a specialist in this care.
Palliative care includes:
- Medications and treatments to relieve symptoms
- Treatments to help you and your family cope with serious illness
- Talking with you and your family to understand your priorities, to answer questions and to help make decisions
If you have heart disease, you may wonder what to expect or worry about your health. You could benefit from planning your care, including preparing for a time when you might be unable to speak for yourself (advance care planning).
Questions to Ask Your Doctor
When you have identified the things you value (see Planning Your Care), and how you feel about types of care, make an appointment to talk with your doctor and health care team. Topics to cover include:
- Review your values with your health care professionals.
- Ask your health care professionals to explain what choices you have and what to expect with different approaches to your care
- Ask what treatments will best help you achieve the things you value.
- Set goals for your care with your team based on your values.
- Renew this conversation every once in a while, particularly if you have had a change in status, or have different goals for your care. It is recommended that patients with heart failure or serious illness renew this discussion every year.
Palliative Care and Heart Disease
Palliative care can be a big help to you and your loved ones if you have heart disease. Clinicians providing palliative care focus on easing your symptoms. You may experience:
- Difficulty breathing
- Pain
- Anxiety
- Nausea or bloating
- Lack of appetite or weight loss
- Depression
- Spiritual distress
In addition to improving your comfort, they can help you make more informed care decisions. They can help you weigh your values, and go over the pros and cons of treatment options.
In this way, they support you as you think about having procedures or major surgery. An example would be whether to have surgery to get a left ventricular assist device, which helps the heart move blood through the body for patients with heart failure but can lead to other serious complications.
In fact, any procedure for your heart should be discussed with your care team using shared decision making. So it is important to discuss your treatment options with your health care professional in order to decide together what is best for you. These treatments may include but are not limited to the following:
- Defibrillators (for example, an implantable cardioverter defibrillator, or ICD, which monitors for a dangerous heart rhythm and can deliver a shock to correct it)
- Heart valve replacement or repair
- Heart artery bypass surgery
- Circulatory support (help moving blood through the body)
- Procedures to fix heart rhythm problems
- Continuous IV medication (medicine given to the patient using a tube that delivers the dose to the body through the veins)
Support Planning for Your Care
Palliative care involves conversations with patients who have heart disease and who want to prepare for their future care. These talks include:
- Understanding the option to turn off medical devices such as implantable cardiac defibrillators
- Filling out advance directives
- Selecting a health care power of attorney
If you have heart disease near the end of life, palliative care can help guide you through important decisions, such as where you want to spend your last days. This may include a discussion about hospice care.
In patients with advanced heart disease, studies have shown that palliative care can help improve your symptoms and quality of life. It can help you feel better, and help your loved ones and caregivers cope with your illness.
Caregiver Support
Palliative care offers support for loved ones caring for patients with heart disease. Caregiving for patients with serious illnesses, particularly heart disease, can be a challenge for loved ones.
As a caregiver, you may experience stress, anxiety, depression or feel overwhelmed. You also might neglect some of your own needs. Skilled clinicians who provide palliative care can often identify these issues and direct caregivers to available resources.
Planning Your Care
To start planning your care, first identify what things are important to you in your life.
Try completing these sentences and answering these questions:
- As I look back, the things that were most important or that meant a lot to me were: [List your responses.]
- The things I hope I will be able to do in the next few years are: [List your responses.]
- The people who are important to me are: [List your responses.]
- How do I feel about spending time in the hospital?
- How do I feel about having a surgery?
- What do I think about machines or computers helping my body?
- How important is it for me to be independent?
- How do I feel about living if I need someone else to do all my personal care (like bathing or helping me go to the toilet) for me?
The things you value are important to tell your doctor about. Make sure your family members know, too.
All adults should prepare for end-of-life care. This is similar to writing a will and includes:
Durable power of attorney for health care. You should pick one or more individuals to make decisions for you if you are not able to make your own choices. The health care surrogate or “durable power of attorney for health care” should understand your basic values and know what conditions you want to avoid. Should we distinguish between POA for matters other than healthcare?
Advance directive. An advance directive usually contains the name or names of the durable power of attorney or health care surrogate. It is a legal document that must be signed, and the signature witnessed. Advance directives also permit you to state the kind of care you want or do not want under possible conditions. All states have advance directives, which can be found online. You can also get them from your state government . Lawyers can also help people write advance directives.
Hospice Care
It's important to understand that hospice care is not just for people on their deathbed.
Hospice care is a philosophy of care. But hospice care also is a specific insurance benefit to cover the cost of therapy that maintains or improves quality of life for a patient with a disease that can’t be cured. This is also the case if the patient has declined aggressive treatment to cure it.
— National Hospice and Palliative Care Organization
Patients must be certified by a physician that their life expectancy is less than six months if the illness runs its expected course. This process is repeated after a set amount of time according to Medicare guidelines. Patients are either certified again or taken off hospice care if their condition improves. They can decide to be off hospice as their condition changes.
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