Coping With Emotions

End of Life Care Discussions: 4 Steps to Success

Beginning the discussion about your own end of life care with family can be uncomfortable, but it is necessary, and it's better to do it sooner than later. A living will, or advance directive, provides family members and healthcare staff with directions on what care you would like at a time when you may not be able to decide for yourself.

Despite incredible advancements in therapy, being diagnosed with cancer can be devastating and no one likes talking about those hard decisions later on down the line. But while discussing end of life issues is very challenging for everyone involved, it can be one of the greatest gifts you can give yourself and your family to explain your instructions on what care you would like to receive in the event that you are unable to decide for yourself. Here are some tips for how to begin the process:

Start talking

Talking to your family about your end of life care can be a morbid and uncomfortable thing to do. The easiest way to do so is to start with a general statement such as, “My doctor says cancer patients should have a discussion with their loved ones about what to do in the event of an emergency that alters their ability to make decisions. Is this something you’d be willing to talk about with me soon?” Try to broach the topic with your family in a quiet moment, and give them time to process the request before diving in. This method may help ease your loved ones’ worries and allow them to look at the matter more objectively.

Decide on CPR

Before you have the big discussion with your family, make sure you’ve done your research and that you’re prepared to address every detail. Code status is the level of medical intervention you would like if your heart or breathing were to stop, most importantly whether or not you would like cardiopulmonary resuscitation (CPR). It is critical, particularly with advanced cancer patients, to know their wishes as their health can deteriorate very suddenly. And understanding the downsides to CPR is very important to making an informed decision. Side effects such as broken ribs, internal bleeding and lung damage are common, and a patient with metastatic cancer who only has a few months left to live might not want CPR, as it may only delay the inevitable while causing a lot of suffering in the process. Same goes for life support. Would you want to be intubated and kept on a respirator or breathing machine for your remaining weeks or months?

Reflect on your own needs and beliefs

Ultimately, any decisions regarding end of life care are yours to make. It is imperative that your needs and beliefs take priority over doctors’ recommendations and family demands. Most patients share similar goals as death nears: spending time with family, maintaining dignity and functionality and being comfortable. Others may want to continue pushing forward with treatment, even if the chances of survival are minimal. All of these strategies are appropriate — you have to decide which is the right one for you and be sure to communicate your needs with both your family and your medical team.

Use the physician as a guide

A physician’s opinion and experience in end of life situations can be very comforting to families going through it for the first time. First and foremost, you must feel that the physician is being open and honest with you about your prognosis. It is OK to ask what the physician would do in your situation. However, the fact that a physician believes one path is the best option does not necessarily mean that path is the best for you. Use the doctor as a resource for information and comfort, not for defining hard set rules going forward. In the end, you have every right to chart your own course, but it’s best to be as informed as possible and your care team can help.

Death is a scary, challenging time in the lives of everyone involved. So the best thing you can do as a patient is to maintain an open, honest dialogue with your doctor and support system, outline your wishes as you see fit and appoint a loved one to speak for you in the event that you cannot.

Larry Istrail
Larry Istrail