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.

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.

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.

Hospice Care Benefits:

The many benefits of hospice care include:

• A team approach: Physicians, nurses, social workers, home health aides, spiritual advisers, therapists (physical, occupational, and speech), dietitians, and volunteers help ensure a patient is comfortable and prepared for the end of life, striving to achieve a good death.
• Medications: Medicine that makes patients feel better are continued or added. Some medications that don’t affect how a patient feels can be stopped (such as cholesterol pills).
• Medical equipment: The hospice company provides all equipment needed for care such as walkers, wheelchairs, hospital beds and bandages if needed.
• Care at home: Most people receiving hospice care receive care where they live with family or paid caregivers providing most care, and the hospice team visiting from time to time.
• Respite care: all patients receiving hospice care are eligible for short stays in hospice facilities or nursing homes to give family caregivers a break from care.
• General inpatient care: Patients may be admitted briefly to either a nursing home or the hospital under hospice care when symptom relief can’t easily be achieved at home. 
• Grief and loss counseling: Patients and loved ones receive bereavement support in advance of death, and family receive support for a year after death. 

Hospice care can take place in more than one setting depending on the illness, degree of support from family and friends, money concerns, and what the patient prefers. This includes inpatient hospice, residential facilities such as skilled nursing facilities or assisted-living residences, or home.

Hospice care helps families care for the person as they approach the end of life. People who choose hospice care agree to not go to the emergency room or hospital to treat their main diagnosis. The goal of hospice care is to support the person and their family as illness takes its natural course.

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.

Tools to Help You Think About Planning Your Care

Several tools help people think about this sort of planning:

Aging With Dignity, a non-profit group, created Five Wishes. Five Wishes walks people through the following issues:

1. The person I want to make care decisions for me when I can’t.
2. The kind of medical treatment I want or don’t want.
3. How comfortable I want to be.
4. How I want people to treat me.
5. What I want my loved ones to know.

The Five Wishes document is a legal advance directive in 42 states and the District of Columbia when signed and witnessed.

The Conversation Project offers a free online tool, and booklets that you can download and print to help people talk with family or others about their values and priorities and plan for care at the end of life.

Other Situations to Consider

• How will you receive care when you can’t take care of yourself? If you expect a family member to care for you, you need a safety plan in case that person is not able to care for you.
• What will you do in an emergency? How will you manage urgent or severe problems ? You can choose to go to the emergency department or hospital, or you can work with your doctor so you and your family can manage care at home.
• Plan for a time when you might choose home health care instead of going to a clinic, or when you might choose hospice care instead of going to the hospital.

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.

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).

What is Palliative Care?

Palliative care is a philosophy of care:

• It focuses on quality of life and controlling symptoms when someone has a serious illness.

Palliative care is complementary care:

• It does not take the place of the care team focused on treating the disease (for example, the cardiologist) but rather adds experts to the team. It’s an extra layer of support.
• It does not mean that the health team or patient is no longer striving for a cure.

Palliative care is holistic care addressing the physical, emotional, and spiritual aspects of a disease for patients and their caregivers or relatives. It is given both in and out of the hospital. Palliative care improves coordination of care so that all of your providers are up to speed on what’s happening with you.