End-Of-Life Planning for People with Heart Failure
Reviewed by: HU Medical Review Board | Last reviewed: November 2019 | Last updated: December 2019
It is a topic most of us would prefer not to talk about, but heart failure (HF) is a chronic condition with no cure. Even with guideline-based medications and strict adherence to your treatment plan, your condition will worsen. Therefore, it is important to discuss planning for the end-of-life when you are feeling well. This includes what your wishes are because there may come a time when you are unable to make your own decisions.1
Helping families and caregivers to understand your wishes can make the decision process easier and they will be more informed during the period of your functional decline.1-4 Having a plan can improve the end-of-life experience for everyone; it can lessen the burden of your family by not having to guess or debate what you would want.1,5 These discussions can also be helpful in identifying what you may or may not want. Starting such a conversation can be difficult, fraught with emotion and good intentions. If done with sensitivity and care, it can help everyone consider options that might have not been relevant before.3
Asking questions and getting answers from your health care team and other resources can help you feel more in control and offer comfort as you think about what you want at the end-of-life. Letting people know what you want may ease your mind and also be a relief to your family, so they understand your wishes on death and dying.2
Some questions to consider:1-3
- Can my heart failure still be controlled with medication?
- With my heart failure getting worse, do I have any other treatment options?
- Is my quality of life more important to me than living as long as possible?
- What happens to me when my heart failure gets worse?
- What kinds of emergencies might I face?
- What should I know about life-saving medical intervention measures?
People with implantable devices that sustain life face another set of questions. Is there a time when the device should be shut off? When considering devices such as a pacemaker or ICD (implantable cardioverter-defibrillator) you and your healthcare team should think about planning for device deactivation before the implantation takes place. This will help prevent the risk of shocks at the end of life as well as the life-saving nature of such shocks. Similarly, someone with mechanical circulatory support, such as an LVAD, should consider deactivation as part of the end-of-life plan prior to having the LVAD placed.2,6
Patients and caregivers can often benefit from additional support in the last phases of life. The decline has physical, emotional and sometimes cognitive challenges. The level of care required can dramatically increase requiring help with personal care, feeding, getting to and from medical visits. and general activities of daily living.6Caregiver fatigue is common because of this increased burden. It is a good time to ask family and friends to pitch in. It is also a time to consider palliative or hospice care.4Palliative care is a multidisciplinary approach to medical care that looks to improve the quality of life and symptom management, as well as understanding choices for medical treatment. It does not depend on prognosis, like hospice care; it can be offered alongside curative treatments.7
Hospice care focuses on the quality of life remaining for people and their caregivers in the advanced stage of a life-limiting illness. Hospice care can be provided in the home or in a hospital or freestanding facility. The goal is to offer compassionate care so that the patient is as comfortable as possible in their remaining time.8
Getting affairs in order
As important as the discussion is about your wishes, caregivers won’t be able to act on your behalf without some basic legal documents. Having these legal documents complete before they are needed can make a difficult situation a little easier.1,3-5
Health care proxy
A health care proxy is someone who is legally designated as a trusted agent to make medical decisions on a patient’s behalf if they are no longer able to make decisions for themselves.4
Power of attorney
The term “Power of Attorney” is a broader term that legally allows another person to make decisions on someone’s behalf when they are no longer competent to do so. A Medical Power of Attorney (MPOA) or durable power of attorney for health care are other terms to describe a health care proxy.3-4 You will need different documents for your healthcare decisions and for other financial decisions.
Advance care directive
An advance health care directive, also known as a Living Will, is a document that allows a person to establish their wishes for end-of-life care and life support decisions. This document must be prepared while a person is independently able to make their choices known. It covers topics such as resuscitation if the heart stops, artificial life support like breathing on a ventilator and providing nutrition through a feeding tube. They constitute a set of instructions for physicians and the healthcare team to follow, regardless if there is someone designated as the decision-maker by health care proxy.1,3 These documents must be prepared and executed while the person is considered mentally competent.1,3-4