Express your wishes.
Throughout the life care planning process, you have explored your personal experiences and values. Contemplating what matters most to you helps align your decisions for future health care with who you are as a person.
If you were very ill or had a serious injury, you would make decisions about the medical care you want based on your deepest values – those values that in many ways define who you are. You would make choices based on your thoughts and feelings about the circumstances and what is important to you in life. However, if you were unconscious or unable to communicate, someone else would have to make these choices for you. You can prepare that person and others who care about you by discussing your values and wishes in advance.
Why did you plan?
Consider your values and preferences when completing the following two statements. Try describing these circumstances in as much detail as possible. Some people feel that life is always worth living, no matter what the circumstances. Others would not want to be kept alive if they had severe permanent brain damage or if they required 24-hour nursing care.
How would you answer the following fill-in-the-blank questions?
- I would want to be kept alive as long as I am able to ________ (i.e. communicate in any way, live outside of the hospital).
- Life would no longer be worth living if I had to ________ (i.e. live with permanent severe brain damage, have someone take care of all of my daily needs, permanently be kept alive on machine etc.).
You may wonder, “how can anyone plan for all possibilities?” You cannot anticipate every possible scenario, but there is one particular situation that is important to think through in advance. Your thoughts and feelings about what you would want in this situation will be informative for you and your agent.
We ask you to consider what your goals of health care would be if you were seriously ill or injured.
A good way to start is by thinking about what you would like your life to look like after you have experienced a serious medical event. If you were able to speak for yourself, your doctors would talk with you directly about your goals of care. If you were not able to speak for yourself, your health care agent would be asked to share your wishes with the medical team.
It might feel uncomfortable to think about this unfamiliar and serious topic, but it is very important to consider.
Reflect upon the following situation
Imagine that you have been injured in a very serious car accident, and you have a severe brain injury. The doctors believe you will never regain your ability to know who you are or to recognize your loved ones.
You have been stabilized in the intensive care unit (ICU), and life-prolonging treatments (for example, a breathing machine or a feeding tube) are keeping you alive.
The doctors now agree that you will likely not regain your ability to know who you are or recognize your loved ones. While the care you are receiving keeps you comfortable, the medical team is very certain that you will not continue to live without the life-sustaining treatments. In this situation, you cannot speak for yourself, and now your agent has been asked to make decisions on your behalf.
What would you want your agent to tell the doctors about your care?
Would you want...
- To continue to receive life-prolonging treatments?
- To only receive care focused on your comfort, which would probably mean that you would die sooner than if you were to continue to be on life-support machines?
Keep in mind that your answers to the questions above are unique to you. Whatever you decide for yourself is the right answer for you.
Rewards of planning
People typically want to know two things
Many people may want more information before answering these very important questions. Typically, people want to know two things:
- How do the doctors know that my brain damage is permanent?
- Can I try life sustaining treatment for a period of time?
To feel confident answering this question you may want to watch the video in which a Kaiser Permanente physician answers some of the most common questions people have when considering this type scenario.
When considering the brain injury situation you have just read, many people have some questions. Dr. Raymund Damian, an internist at Kaiser Permanente San Rafael, will answer some of the most common questions.
Answers to common questions, part 1
Question: How do the doctors know that in a situation like the one described in Planning for the unexpected that I would never regain the ability to know who I am or recognize loved ones?
Answer: In these types of situations, the doctors perform the medical tests necessary to know this condition is extremely likely to be permanent and that you will never recover before they ask your agent to make a decision about whether to continue with life sustaining measures.
Answers to common questions, part 2
Question: Can I choose to try life-prolonging treatment for a period of time to see if I will get better?
Answer: Yes, you can. If this is your preference, then you will need to specify the period of time you would want to be kept alive if there’s no improvement to your condition. For instance, saying you would want to be kept alive “for a while” is too vague. Instead, you will need to be as clear and specific as possible so that your agent and loved ones will know how to act on your behalf.
Question: Where can I learn more about artificial nutrition?
Answer: Take a look at our Artificial Nutrition fact sheet (pdf).
Question: How can I learn more about machines used to help people breathe?
Answer: Review our Help with Breathing fact sheet (pdf).
One particular medical intervention to consider and discuss with your agent is CPR (cardiopulmonary resuscitation). When it comes to CPR, the decision involves thinking about whether or not you would want attempts made to restart your heart and breathing if they suddenly stopped while you were in the hospital.
Because CPR must be started almost immediately after your heart and breathing stop, it is important to think about this treatment option now, so you can discuss your preferences with your health care agent and document your wishes in your Advance Health Care Directive.
What is CPR and how is it done?
CPR is a procedure used to attempt to restart your heart and breathing. CPR typically includes:
- Pressing hard on your chest and sometimes also breathing into your mouth.
- Electrical shock and drugs to try to start your heart.
- A tube to open your airway and a machine to help you breathe.
What are the potential side effects of CPR?
People often think of CPR as it is depicted in TV shows, but in reality, it is very different. On TV, people who receive CPR often leave the hospital to go home with their families the same day or a few days later in the condition they were in before their heart stopped.
Unfortunately, reality rarely looks like what we see on TV. Usually, there are some serious side effects of CPR, like broken ribs, brain damage from lack of oxygen, and weakened lungs. Therefore, even if CPR is successful, there is a high likelihood you would remain in the hospital in critical condition and on breathing machines.
How successful is CPR?
Of patients who receive CPR in the hospital, about 17% will survive CPR to be discharged from the hospital.1 Only slightly more than 2% will survive with good brain functioning.2
For adults who are frail, in nursing homes or very ill, the likelihood of CPR succeeding is much lower. For residents of nursing homes, the chance of CPR working at all is less than 3%.3
Will emergency responders honor my wishes?
To be effective, CPR has to be started within a few minutes of your heart stopping. If something sudden – an accident or injury – were to happen to you, the emergency responders or bystanders who know CPR would try to restart your heart immediately, since they probably would not have access to your Advance Health Care Directive at that urgent time.
So, if your choice is to allow a natural death and not attempt CPR, it is important to know that it is impossible to guarantee what will happen outside of the hospital. But we still encourage you to talk with your health care agent about CPR and document this in an Advance Health Care Directive. This way, if your heart and breathing ever stopped in a hospital setting, the medical team would know if you would want CPR.
If you are certain you do not want CPR, please discuss other documents you may want to complete with your physician.
How do I decide whether or not I want CPR?
Whether you want CPR attempted if your heart and breathing stops - or not - is a personal choice. It’s a decision that may change as you age or if your health declines, too.
It is common for healthy adults and younger adults to want attempts made to restart their heart. While the survival rates are low overall, if you are in a healthy condition when you receive CPR, the likelihood of a good outcome is much better.
We encourage you to do some reflection before deciding whether or not you want CPR attempted. It may be helpful to discuss your thoughts with your health care agent or someone else close to you.
Some questions to help you consider whether you want CPR attempted – or not
- What personal experience have you had with family or friends who have had CPR? How did that experience affect your own decision?
- What do you see as the advantages and disadvantages of CPR?
- What outcome would you expect if CPR were performed and you survived? For example, think about your level of functioning, ability to be independent, or the chance of living in a nursing home the rest of your life.
- What outcome would be unacceptable to you? For example, some would consider it unacceptable if they required 24 hour nursing care, were unable to communicate with loved ones, or needed a permanent life sustaining treatments (like a breathing machine).
- Are there others you would like to have participate in this decision-making process?
- Do you have other questions that need to be answered before deciding?
- Peberdy, MA, Kaye W, Ornato JP, et al. Cardiopulmonary resuscitation of adults in the hospital: A report of 14, 720 cardiac arrests from the National Registry of Cardiopulmonary Resuscitation. Resuscitation – 2003; 58 297-308
- Ebell, M.H., Wonchol J., et. al. Development and Validation of the Good Outcome Following Attempted Resuscitation (GO-FAR) score to Predict Neurologically Intact Survival After In-Hospital Cardiopulmonary Resuscitation. JAMA Intern Med. Published online September 09, 2013.
- Shah MN, Fairbanks RJ, Lerner EB (2006).Cardiac arrests in skilled nursing facilities: continuing room for improvement? J Am Med Dir Assoc. Jul;(6):350-4.