Completing your advance care plan and discussing it with your chosen healthcare proxy and medical providers are the best ways to access the care you want. An unexpected crisis can trigger the need for end-of-life care at any moment. Even when someone has a long-term illness or chronic disease, the end can feel sudden. In these moments, reactions and actions will determine whether your values and priorities are understood and respected. How can you be ready to communicate with healthcare providers for whatever comes next? 

Advance care planning refers to the process of thinking about, discussing, and writing down your wishes and priorities for future medical care. Your advance directive (also called a living will) should focus on what YOU want — and WHO you want to make decisions on your behalf. Other terms for this role include surrogate decision-maker, proxy, durable power of attorney for healthcare, or medical power of attorney. 

Ideally, advance directives are shared with care providers and loved ones long before an emergency arises, to ensure others are aware of your wishes well in advance. Take the time now to discuss them with your chosen surrogate so they know how to make decisions on your behalf. It can be terrifying to witness a medical crisis and watch as a dying friend or loved one struggles to breathe, endures pain, or experiences extreme discomfort. Even when someone is already receiving hospice care, a loved one may need to call emergency services for assistance. 

Remember, emergency department (ED) teams are trained to save lives. This means their default is to provide full and aggressive treatment — unless they have specific and legally binding directions that say otherwise. The concept of providing palliative care in EDs has long been explored, and Compassion & Choices National Emergency and Palliative Medicine Initiative (NEPMI) is working to transform care by highlighting the benefits and promoting the integration of palliative care in emergency settings. However, this option is not yet available for all, so it is a good idea to learn how your local emergency department approaches patients who are nearing the end of life. 

Walking into an ED with documents in hand is helpful, but does not guarantee the medical team will follow the patient’s wishes. Consider this possibility when choosing your advocate or proxy.  If you can’t speak for yourself, will your proxy stand firm and insist that medical providers observe your stated wishes, or will they defer to doctors and hospital personnel? 

At these moments, hospital conversations focus on goals of care (GOC), which means determining immediate next steps. First and foremost, make sure your medical team has an up-to-date copy of your advance directive, POLST (Physician Orders for Life-Sustaining Treatment, if you have one) and contact information for your chosen surrogate decision-maker. Then, depending on whether or not you are able to speak for yourself, you or your surrogate can ask questions to confirm the medical team understands your wishes. Trying using the questions below to evaluate decisions and get clarity.

According to Jena Johnson, senior end-of-life consultant at Compassion & Choices, “I speak to some families who complete advance care planning. Then there is a crisis, and the family calls 911. In the heat of the moment, no one thinks to bring along those documents. In one instance, a man was dying of congestive heart failure. In the ED, the family wanted only comfort care. This conversation with the physician became very heated. The physician was adamant the man received invasive treatment. But the daughter stood her ground. The man was transferred to hospice the next day and died comfortably 18 hours later without those unwanted treatments.”

Often, medical professionals feel it is their job to provide hope to patients and their loved ones, believing that everyone wants to live as long as possible. But many patients hope to not suffer … to have some control … and for a death that aligns with their values and priorities. You and your loved ones can achieve this through thorough planning, open communication with your clinical team, becoming fully informed about tests/treatments and standing your ground in your decision making.