Talking with Your Doctor about End of Life Care

end of life discussions

When we take the time to prepare and plan ahead, the result is most often more favorable than if we waited until the last minute to pull important details together, and the same is true for our end of life care decisions. You wouldn’t wait until the day before your wedding to plan your florist, photographer, caterer, and venue, would you? Virtually all ‘life events’ that dot our very existence with meaning and purpose are planned well in advance: births, weddings, religious ceremonies, graduations, retirements, birthdays and even holidays often have weeks or months of planning to ensure that the special event plays out as we have envisioned. When considering your final days, just as much emphasis should be placed on the planning if we want to be sure that we are able to live gracefully and as we wish through our transition to the afterlife.

It often seems too ‘early’ to take the time to really prepare for the end of our lives. In many instances, we don’t want to think about our death, dying process, or what might happen after we are gone. However, no matter how difficult, it is vitally important to think and plan ahead. ‘Too early’ sometimes turns into ‘too late’ when the unexpected occurs.  Since our loved ones often bear the brunt of making important decisions for us when we are no longer able to do so, we need to communicate our desires so that they will know how to proceed in the face of certain medical and personal situations.

Including your physician in these discussions for end of life care is a necessary component of the overall plan. Without looping in your medical team, you may be subjected to procedures or treatments you didn’t ask for or want. At an absolute minimum, a frank discussion about your final Earthly moments needs to be clear and expressed in your medical chart. If you want no extraordinary measures, such as artificial resuscitation (CPR or chest compressions) or respirators (breathing machines), your physician or medical team needs to be aware, and you should request a DNR (Do Not Resuscitate) order be placed in your chart. Without this noted, your medical team or hospital may intervene in ways you would not have agreed to given the opportunity.

If you haven’t had a discussion with your physician about end of life care and would like to, you should call and schedule an appointment specifically for this purpose. There have been changes in the last few years mandating that Medicare reimburse physicians for ‘ACP’ visits beginning January 1, 2016.  ACP is the acronym for a new type of office visit called ‘Advanced Care Planning’ and are conversational in nature to discuss your final medical wishes. These conversational visits can also be integrated into a routine preventive visit, but due to the depth and complexity of the subject matter, be sure to mention it when scheduling so that enough time can be allotted for your appointment.

ACP visits are a new step in the right direction for more patient-centered care, focusing more on what the patient wants. Like all societal progress, some span of time may need to pass before the system runs smoothly. Our healthcare system was designed with diseases, not people, at its center, and is therefore an inherently bad design.  Conversations about what we want, as patients and consumers, are helping to turn the tide away from treating the disease to treating the whole person.

One of the major facts that illustrate the former model is that when 736 primary care doctors and specialists were polled as recently as the Spring of 2016, a full third stated that they had NO formal training on end of life discussions with patients and their families when they were in medical school and more than half said that they hadn’t discussed their own end-of-life care with their personal physicians.

Physicians also are faced with other administrative hurdles regarding the end of life discussions now recommended and expected. Physicians are required to use electronic health records (EHR) in order to qualify for Medicare reimbursement. Almost 25% of the physicians in the national poll stated that the EHR systems they are required to use don’t have a place to adequately record the conversation.  Almost 33% stated that even if the patient had a prior advanced care directive or DNR order flag in their electronic chart that they were unable to access its contents to read or review the details.

More planning and effort will have to be done by the policymakers and physicians to make the standard for end-of-life care discussions more fluid, less stigmatic, and more comforting. Although recent policies allow for new payment allowances, some medical systems implemented end of life discussion protocol several decades ago, and the results are amazing. The Respecting Choices program in La Crosse, Wisconsin has been in place for more than 20 years, and ethicist Bud Hammes is credited with its inception.  Because talking about death and end of life care is now part of community conversation and openly discussed in medical settings by specially trained staff, the fear and apprehension is greatly reduced. This has led to an unbelievable increase in patients that have elected to have end-of-life plans in place that will dictate how they are treated as their health declines. In 2016, 96% of the 120,000 residents of La Crosse were fully prepared with detailed plans for their final days.

Even though the conversation may be difficult initially, you will be left unburdened by the fears and negative thoughts that may come from worry and stress about future planning. Knowing that recent data shows this conversation may also be difficult for your physician, rest assured that resources exist to make this vital conversation easier.

The Conversation Project is a group of professionals from many fields that have banded together to develop materials to help physicians and patients prepare for an ACP visit and planning. The group’s premise revolves around the patient’s desires and wishes, and builds the rest of the conversation from that basis.  Another resource is ACP Decisions. This non-profit provides online and print resources to both patients and providers in multiple languages. Online videos show role play scenarios between physicians and patients and will help you to prepare a list of questions to take with you to your visit. They also offer a free downloadable checklist to be sure you discuss all the issues pertinent to your specific situation.

Consider making an appointment today to discuss your end of life concerns and wishes with your physician. Use the resources mentioned above or research other options to help you feel more comfortable. Planning ahead now could make a world of difference for your family and for you during your final days, and will ensure you are treated the way you have requested.

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