Advanced Healthcare Directives

Talking frankly with your doctor about your prognosis with heart failure (HF) may be awkward. You can improve and lengthen your life by taking good care of yourself and taking your medicines as ordered. This is your time to be your own advocate in starting a talk with your family about your chronic HF and your future.

Managing your HF is hard, and you may need to make choices about how to proceed with your care. There are health care options offered to support you in making these choices. It may be best to discuss these options with your family and loved ones when you are feeling well.

The "circle of life" refers to being born, living and dying. Death is a part of this circle, yet talking about death is often uncomfortable and brings about fear.

Preparing yourself and your loved ones for your death does not mean you are giving up hope. It means that when death does come, that all will be more prepared. If planning for the future occurs when you are not in crisis then emotions are more in control and plans can be made in a calm and thoughtful manner. There are several questions that you will need to answer about how you want to die such as:

  • Who do you want to be with you when you are dying?
  • Where do you want to die? Hospital, home, hospice?
  • What do you think is a "good death"?

Advanced Care Directives allow you to express your wishes for health care ahead of time. These legal papers described below allow you to state your end of life care wishes ahead of time. These commands are valid across the United States, but some states may have special laws, so be sure to check the law of your state.

You may decide that there are certain treatments you do not want to receive if your health status declines. You can be specific about which treatments you would like to receive, such as antibiotics or being fed and others you may not want to receive such as dialysis or a breathing tube. At any time you can change your advanced care directives and receive treatment for your illness.

  • Physician Orders for Life Sustaining Treatment (POLST) program: The POLST program provides a way for people to share their wishes for treatment at the end of life. The form is used to describe health orders and is signed by both the patient and their doctor. This form can be carried with the patient into the hospital, long term care, and even used at home with Emergency Medical Services. (EMS). POLST state programs . The term "Living will" is often used in place of advanced directives. You can register your living will online so it can be available to health care providers no matter where you live. Living will forms
  • Health care proxy/health care power of attorney: Sometimes it is needed to give someone the right to make health choices for you when and if you cannot. A Health Care Power of Attorney is a person you choose to be a proxy (substitute) for you. Be sure you are clear with them as to your wishes for health care in case you have a crisis or cannot speak.
  • DNR: DNR refers to "Do Not Resuscitate" which means that you do not want CPR (Cardiopulmonary Resuscitation) if your heart or lungs should stop working. DNR does not mean "do not treat". Instead it means that if you stop breathing and your heart stops beating, no effort will be made to assist your breathing or attempt to restart your heart.
  • Admission to the hospital
  • One of the main goals of HF care is to keep you out of the hospital. Since HF is a chronic illness though, there may be times that you will need to be admitted to the hospital for further treatment.

    Admission to the hospital may be for:

    • Fluid excess
    • Low blood pressure
    • Irregular heart rhythm
    • Worse symptoms of shortness of breath, swelling or chest pain
    • Procedures or tests to measure your HF.

    The goals while you are in the hospital are to improve your symptoms and increase your activity level so you are able to return home.

  • Discharge from the hospital
  • Going home from the hospital can be stressful. There are many things to keep up with and lots to learn. The goal is to keep you out of the hospital by giving you information to help you manage your care at home. Before you leave the hospital there are many questions you should ask to decide what you will need when you get home.

    • Will I need help with bathing, dressing, walking and eating?
    • How did my medications change? What was started, stopped or changed?
    • Do I have prescriptions for the drugs I need? Can I obtain all of my meds?
    • Do I have the right food in the house to help me follow my low salt diet?
    • Is there any medical equipment I need to take care of myself? A scale, blood pressure monitor, oxygen or CPAP machine?
    • Can I recognize the symptoms if my HF gets worse? (Sleeping on more pillows, or sitting upright, waking up in the night short of breath, swelling in my legs or abdomen, chest discomfort, weight gain.)
    • Who do I call if my symptoms get worse? (My primary care doctor, heart doctor, or HF specialist.)
    • When should I call?
      • I should call when my weight goes up by 3 lbs overnight or 5 lbs in a week.
      • If I notice swelling in my lowers legs or stomach
      • If I need to sleep on more pillows or in the recliner
      • If I have chest pain or become dizzy
      • If I am more short of breath with activity.
    • When do I next see my doctor?
    • Can I name one thing that caused me to go into the hospital?
      • Eating too much salt
      • A heart rhythm that is too fast or to slow
      • Ran out of my medications
      • Other medical problems got worse.

    (McEntee, Cuomo and Dennison, 2009)

  • Home Health and Telehealth
  • Home health services are for people who are homebound and include home health aides, nursing care, physical and occupational therapy. Home health can be ordered for a few weeks with the goal of helping you return to doing your own care.

    Telehealth is a way of communicating with your health care team via the phone or computer. You may receive a device such as a scale and blood pressure cuff that measures your status in your home and sends the information to your health care team for review. These devices often have built in questions that ask about your HF symptoms so you can let your health care team know how your weight, blood pressure and symptoms are related. This type of device allows your health care team to keep track of your status in between office visits and recognize changes early.

  • Short and long term care
  • Some patients require rehabilitation (rehab) before they can return home. This may be for a brief time or longer. A stay in a rehab facility may include physical, speech and occupational therapy to assist in building strength, improve mobility, and resume daily activities. Short term rehab is defined as one period of home health care or one period of nursing home care up to 29 straight days. Long term rehab often takes place in a skilled nursing facility or a special area of the hospital.

  • Long Term Acute Care (LTAC)
  • Some patients require rehabilitation (rehab) before they can return home. This may be for a brief time or longer. A stay in a rehab facility may include physical, speech and occupational therapy to assist in building strength, improve mobility, and resume daily activities. Short term rehab is defined as one period of home health care or one period of nursing home care up to 29 straight days. Long term rehab often takes place in a skilled nursing facility or a special area of the hospital. Some patients leave the hospital with chronic care needs and cannot be cared for in their home. There are a few options for these patients depending on the level of care they require. For patients who need acute care or chronic rehab for greater than 25 days, an LTAC provides a hospital environment to manage complex health needs when rehab is the goal of care. Sometimes the goal of an LTAC is to measure your status as your care needs become less acute.

  • Skilled Nursing
  • A skilled nursing facility (SNF) provides 24 hour care by a health care team of: nurse practitioners (NP), registered nurses (RN), licensed practical nurses (LPN) and certified nursing assistants (CNA). A house doctor is also on hand. SNFs care for patients who need full time nursing care. A SNF is often used when a patient needs short term rehab between hospital discharge and returning to home.

  • Palliative Care and Hospice Care
  • Palliative care is focused on easing the stress, pain and symptoms of a severe or chronic illness. Palliative care may be given even when treatments are still underway to cure the illness. The goal is to improve your quality of life.

    Hospice care provides physical, social, emotional and spiritual support to patients, and their families and caregivers who are near the end of their life. Hospice care can take place in your home or in an inpatient hospice facility. Hospice care is covered under Medicare Part A

    It is often hard to make out the best time for hospice. There are some questions you can ask that may help you in making this choice:

    • Have I been hospitalized or seen in clinic more often in the past 6 months?
    • Am I having more "bad days" from my HF symptoms than "good days"?
    • Are the treatments for my symptoms no longer working?