image

Advance Care Planning 101

Advance Care Planning 101

Reviewed by Jasper Clinical Board

Last updated 5/24/21


Talking about the future can be hard—especially when your health is compromised. But thanks to efforts like the Conversation Project, more and more people are sharing resources and forging communities that make it easier, less scary, and more natural. Let’s explore some helpful tips for creating your own advance care plan.

What is advance care planning?

“Advance care planning” is a broad term for the plans you make around the medical care you receive during a health crisis, when your life may be at risk. It covers emergency treatments like CPR and ventilator use, end-of-life care issues like pain management, and comfort care options like nursing homes and assisted living. In all of these areas, there are important questions to ask and decisions to make. 
Advance care planning is an incredibly personal issue. Everyone has their own preferences and priorities. There’s no right or wrong choices here; just the choice that feels right for you. 
Advance care planning is something you can do with family and friends (for guidance on the conversation, this website can be very helpful), and your healthcare team (or alone, if that’s your preference). For most people, a special appointment with your doctor is a great place to begin. Your primary care doctor or oncologist can help you think concretely about where your cancer journey may lead, what sort of health issues may come up, and which tough decisions you might face.

Questions that may arise

To plan out your care, you’ll want to think concretely about the healthcare scenarios you might face. Here are some open questions suggested by the National Institute on Aging:
  • If a stroke leaves you unable to move and then your heart stops, would you want CPR? What if you were also mentally impaired by a stroke—does your decision change? Also, do you understand what CPR means, in practical terms, for you and your body the way it is right now? What does your doctor tell you would happen to your body if you were to receive CPR? 
  • What if you are in pain at the end of life? Do you want medication to treat the pain, even if it will make you more drowsy and lethargic?
  • What if you are permanently unconscious and then develop pneumonia? Would you want antibiotics and to be placed on a ventilator?
Remember, these are just jumping-off points (for further reading, Hank Dunn’s Hard Choices for Loving People is a useful guide). Your doctor will likely also suggest some specific cancer-related questions for you to ponder based on your unique circumstance and health profile.
In addition, it can be helpful to think about your goals and what brings you pleasure. For instance, maybe it’s very important to live to see a certain milestone (e.g. your upcoming birthday or a child’s wedding). In this case, you might be willing to undergo more invasive life-sustaining treatments to reach those goals. On the other hand, maybe certain aspects of your daily life—like strolling through the park—are crucial. Treatments that help you survive without those daily joys may not be worth it for you.
Again, these are very intimate questions. Be kind and generous with yourself as you ask them and draw on support from people who love you.

Advance care planning: What’s the goal?

There are a few big reasons to engage in advance care planning: First, it’s a time to think through the big questions for yourself. Giving yourself space to decide what kind of care you really want may be deeply helpful. It can put your mind at ease as you move forward with cancer treatment, so you can focus on the present. Though you’ll never be able to come up with every single situation that might arise, card games like Go Wish (online version here) and Fink Conversations can be helpful for playing out scenarios.
Second, it can be important for your relationships. Loved ones can better help you during your cancer journey if they understand what you want. They can also offer special insights and help you make those big decisions. 
Finally, advanced care planning is how you’ll create your Advance Directives—a set of important legal documents that ensure your wishes are honored (even if you’re unable to communicate). That includes:

Your living will

A living will is a legal document that spells out how you want to be treated during end-of-life medical care. If you’re dying or permanently unconscious, this document will guide your doctors’ actions. For instance…
  • If you can no longer breathe on your own, do you want the assistance of a ventilator? 
  • If you have heart failure, do you want to be given cardiopulmonary resuscitation (CPR)? 
  • If you can’t eat or drink, do you want doctors to use a feeding tube?
All of these treatments can cause significant medical complications that may affect your quality of life, should you survive. For some people, that’s unacceptable. For others, it’s not an issue. 
Before you create your living will, ask your doctor what kind of healthcare issues you might face during your cancer journey. This can help you be clear and precise with your instructions.
Importantly, keep in mind that this document is just informational and does not assign a decision-maker to make decisions on your behalf. If you like, you can also write an addendum with more specific personalized wishes on it. No matter what, make sure the doctor gets a copy to put in your chart or it might be a useless exercise to have performed.

Durable power of attorney for health care

Your living will covers many situations, but it can’t do everything. Sometimes, a person who knows you will need to make important healthcare decisions on your behalf. To designate this person, you’ll create a special legal document called durable power of attorney for health care.
The person you designate (who’s legally called an “agent,” “proxy,” or “representative”) will of course be someone you know and trust. When choosing who this is it’s worth keeping in mind that you’ll want this to be someone who can remove their own emotions from the situation in the moment to make (to the best of their ability) the decision you would have made (not what they think is best for you, under the circumstances). This means that in some cases, a spouse or child might not be the best choice.
You should have a serious conversation with the individual you choose beforehand to make sure they’re comfortable with the responsibility. Talk through the medical possibilities with them, and (perhaps more importantly) talk about your underlying values (including religious values that factor into healthcare decision making). Are you simply striving to live as long as possible? Or is it more important to preserve a certain quality of life? Which functions (walking, talking, feeding yourself, toileting) are the most important? 
Again, there’s no wrong way to have this conversation. But talking with your doctor in advance can help you focus on specific decisions your agent might face. You can also bring your agent along to an appointment with your doctor, so the three of you can think through the issues together. Atul Gawande, MD, (see also his book Being Mortal and the Frontline documentary of the same name) and Ira Byock, MD, are wonderful resources in this realm.

Other miscellaneous documents

The two documents above are the big pieces of your Advance Directives, but many people choose to include additional documents, such as:
  • Do Not Resuscitate (DNR) order: This tells doctors not to restart or stabilize your heart if it begins to fail. Those instructions may also appear in your living will, but a separate document can create extra clarity. (Some people post it by their hospital beds.) You can get both an in-hospital DNR (usually part of a POLST document) and a community DNR (for this, you must be nearing end-of-life as certified by your physician. You’ll wear a bracelet all the time, so EMS don’t perform CPR).
  • Do Not Intubate (DNI) order: Similar to a DNR, this document tells hospital staff that you don’t want to be put on a ventilator if you stop breathing.
  • Organ and tissue donation documents: Most organ transplants are typically not an option for cancer patients. However, you may be able donate your corneas/eyes (unless you’ve had a blood cancer). What you definitely can do is donate your whole body to research. This is something you have to set up ahead of time; your family won’t be able to do it after death.
Different states use different advance care documents, and have different procedures for making them official. Just ask your doctor, the nearest Agency on Aging, or your state health department. An attorney can be helpful, but is not typically necessary.

Other resources

As we mentioned above, it’s becoming more and more normal to have advance care conversations with friends, family, and healthcare providers. And that’s a very good thing.
If you need help, guidance, or inspiration, try speaking with a social worker at your local hospital or community organization. You can also connect online to people facing the same questions as you. Check out this pamphlet from the Conversation Project for help starting the advanced care conversation with people you love—or this guide for help talking with your doctor.

The content on this website is intended to provide the best possible information for you, but should not be considered—or used as a substitute for—medical advice. If you have questions about your diagnosis or treatment, please contact your health care provider(s). For questions or comments about this content, please email us at support@jasperhealth.com.