Advance Care Planning
What is Advanced Care Planning?
We believe that every patient’s choices for current and future healthcare should be respected and supported.
Our goal is to ensure every patient has access to programs, tools, and resources to make and document those decisions, and have them respected and supported by their care team and significant others.
Advance care planning is an ongoing process of learning about the choices we each have in relation to our future medical care and how each of us would want to be treated if we were not able to speak for ourselves. Advance care planning discussions can be very different, depending on an individual’s current health.
For each of these individuals, the process is similar and includes:
- Learning about medical treatment options and the goals for those treatments
- Taking time to explore thoughts and feelings about lifesaving or life-sustaining treatments
- Choosing someone to represent their choices (healthcare advocate) if they are unable to speak for themselves
- Putting those wishes into writing
Considerations for advance care planning
Regardless of current health status, ensuring that loved ones and healthcare providers are aware of your healthcare wishes is the most effective way to ensure these choices would be honored. Through several high-profile cases, recent history has revealed the private agony and public furor resulting from family and friends disagreeing upon what their loved one would have wanted. The ongoing process of conversation and documentation for your wishes serves as both a gift and protection for you and your family.
Helpful resources
- Download My Guide to Advance Care Planning (English)
- Download My guide to Advance Care Planning (Spanish)
Your Advance Care Planning Team
Making important decisions now about your current and future healthcare can give both you and your family peace of mind knowing that your care team is aware of the treatment options you choose and that your loved ones will not have to make these important decisions for you.
Your healthcare team may include nurse practitioners, clinical nurse specialists, and physician assistants who provide patient education, treatment, and care in collaboration with physicians in the practice. They can be a valuable resource to you as you review your options and make decisions about advance care planning.
Advance care planning is the process of learning about the choices you have in relation to our future medical care, and how you want to be treated if you are unable to speak for yourself.
These discussions can be very different, depending on your current health. The process includes:
- Learning about medical treatment options and the goals for those treatments.
- Taking time to explore thoughts and feelings about life-saving or life-sustaining treatments.
- Choosing a healthcare advocate to represent your choices if you are unable to speak for yourself.
- Putting your wishes into writing.
Understanding Medical Treatment Options
The advance care planning process can be very useful in helping individuals to understand and clarify their wishes and values as they relate to future medical treatment choices. Considerations include:
- When to start treatment
- When to stop, or not start, treatment
- What are the goals of treatment
- How and when to use comfort measures
Following are a list of medical treatments that are considered lifesaving or life sustaining. Decisions to accept or forego each of these treatments must be considered in relation to the individual's health and personal values and wishes. For example, there is no question that antibiotics would be given to a healthy child who has developed an infection. However, while one person may choose at end of life to forego treatment and “let nature take its course,” another individual may find it unacceptable to withhold treatment.
Cardiopulmonary Resuscitation (CPR)
CPR provides breathing and chest compressions when a person’s heart or breathing has stopped and provides blood flow to the heart and brain to “buy time” until the heart or the ability to breath begin to function normally.
While television shows frequently portray CPR as being successful, the truth is that less than half of all people whose hearts stop are revived and half of these die in the next two days. One in five people, or 20 percent, will leave the hospital, usually to a nursing home. For those with advanced cancer for whom CPR is attempted, survival and leaving the hospital is rare. Generally, those who were in good health and living independently before receiving CPR recover most fully.
Intubation and Ventilation
When someone cannot breathe on their own, a tube is placed into their trachea or windpipe, either through the mouth or an opening created in the neck and the tube is connected to a machine called a ventilator.
For someone who has been in an accident or has a sudden illness, intubation and ventilation can be lifesaving; however, individuals with advanced lung disease or other debilitating conditions can be very difficult to wean from the ventilator once started.
It is very important to consider what you would like medical personnel to do in the event that you were to stop breathing suddenly or your heart were to stop. You might be in a medical facility or paramedics could be called. Would you want CPR and/or a ventilator? Would you prefer to not be resuscitated? Your answer will probably depend on your health at the time. Medical staff must do everything for you in this situation – possibly including CPR, defibrillator, rescue IV medications, and ventilator, unless you make your wishes known otherwise.
IV Hydration and Nutritional Support
IV hydration and nutritional support may be given when an individual cannot eat or drink enough to sustain life. IV hydration refers to fluids given through a tube inserted into a blood vessel. Nutritional support may be given through a vein, a tube passed through the nose into the stomach or intestine, or a tube surgically inserted through the abdominal wall into the stomach or intestines.
Whether to start, stop, or continue IV hydration and nutritional support is perhaps the most difficult decision to be made in relation to healthcare. As death approaches, the body’s need for fluids and nutrients wanes, as well as the body’s ability to flush fluids and digest food. Some people believe that not giving fluids and nutrition allows the natural process of dying to occur. Others may consider foregoing nutrition or hydration as inhumane. It is important for everyone to consider carefully when they believe such support should be given. Identify goals for treatment and think about when or if it should be discontinued. Make these wishes known to family members, healthcare advocates, and medical care providers.
Kidney or Renal Dialysis
Kidneys play an important role in the body, filtering the blood to get rid of wastes and extra water by making urine. When the kidneys are not working properly, wastes can build up in the body and cause illness and even death if not treated. When the kidneys stop working, dialysis is performed to filter the blood through a machine to get rid of waste products.
For some, dialysis is required for a short time until the kidneys begin functioning on their own. For individuals with end-stage renal failure, dialysis is usually required three days a week for the rest of their lives, or until they receive a working kidney through a transplant, if eligible. In addition to dialysis, individuals with end- stage renal disease must follow a very strict diet and limit fluid intake.
Antibiotics
Antibiotics are drugs that help the body fight infections caused by bacteria. The term antibiotic is sometimes used to describe drugs that fight other organisms that cause infections.
Conditions such as pneumonia or urinary tract infection may be easily treated with antibiotics, although organisms that have become resistant to antibiotics are becoming more common. The decision to treat these conditions in an individual who is terminally ill or has a condition from which they are unlikely to recover can be very difficult, especially near the end of life.
Taking Time to Consider End-of-Life Treatment Options
Making decisions about future medical care requires much discussion and reflection and can be a very emotional process. Everyone must make decisions that are right for them, but should do so with input from respected family members and friends, spiritual leaders, and/or healthcare providers. It is also an ongoing process. What is right for a person now may not be right six months or 10 years from now. Some questions to ask include:
- What experiences have you had with a loved one or close friend who faced decisions about a life sustaining treatment and what did you learn from that?
- When would I want life-sustaining treatment and under what circumstances would I want it stopped?
- What do the terms “a good life” or “living well” mean to me at this point in my life?
Helpful Resources
Advance Care Planning Decisions
Advance Care Planning Decisions offers a series of educational videos for individuals entering into this stage of their health care plan. Its primary goal is to educate patients and families about the decisions patients face so they will make the best advance care planning decision for their situation.
Visit http://www.acpdecisions.org/ to learn more
American Hospice Foundation
The American Hospice Foundation has a library of materials for individuals who are terminally ill and their family members. Advance care planning, caregiving, and hospice information and resources are available.
Visit http://www.americanhospice.org/ to learn more
Caring Connections
A program of the National Hospice and Palliative Care Organization, Caring Connections aims to improve end of life care and is a resource for families and patients for advance care planning, caregiving, hospice and palliative medicine, and grief and loss.
Visit http://www.caringinfo.org/ to learn more
National Hospice and Palliative Care Organization
The National Hospice and Palliative Care Organization (NHPCO) is a non-profit organization focused on providing resources and assistance to hospice and palliative medicine programs and individuals who work in the field. The website provides information on end-of-life care, providers, and other helpful resources.
Visit http://www.nhpco.org/ to learn more