By Eleanor Tanno, M.D.
In every specialty of medicine, you will see patients who are nearing the end of their lives. You may not consciously think about it, but you notice it in subtle ways. Perhaps it is the time it takes them to walk from your waiting room to your exam room. Or, perhaps it is notable when their adult child has accompanied them to the visit. Maybe it is a recent hospital admission for which they are following up with you. No matter what alerts you that this patient is nearing the end of their life, there are five things every physician should know about end-of-life decisions.
1. Everyone is waiting for the other one to bring it up.
When it comes to having the goals-of-care conversation with the patient, everyone is waiting for the other one to bring it up. The primary care physician is waiting for the oncologist who is waiting for the hospitalist who is waiting for the palliative care physician. Everyone knows the patient is dying, but feels less qualified than the others to discuss it. There is a valid argument for each of these specialties to be the one to initiate the conversation. One could argue, the primary care physician has known the patient the longest, the oncologist knows the prognosis and is providing the treatment, the hospitalist is managing any critical care interventions, and the palliative care physician is the specialist in these conversations.
Consequently, when any undesirable task is everyone’s job, it ends up being done by no one. Ultimately, the patient is waiting for someone to bring it up. And we are all in the business of good patient care. These conversations often happen in layers anyway, like silt building up on stone. There can never be too many physicians initiating this conversation. Each primes the patient to be better prepared for the next physician to bring it up. It is not one physician or the other. It is all of us who should have this conversation. You have your unique place in that patient’s care and your questions and comments are insightful.
2. The most powerful person in end-of-life planning is the medical power of attorney — the patient’s medical decision maker.
Take a moment to ask your patients who would this person be for them? If a patient has not designated a medical power of attorney, the default is their spouse followed by their adult children equally. Therefore, if your patient does not wish this to be the case for them, they would need to put their preference in writing.
This scenario comes up when a patient has complicated or different relationships with their children. For example, they may only want one child involved in their care, but not the other(s). Or, they may not have adult children and at the time of their critical illness, their spouse may be deceased or too ill to participate. Your patient may choose anyone to be their medical power of attorney, but if it falls outside the default order of succession, it needs to be in writing.
3. A Do Not Resuscitate order is that — an order!
It must be signed by a physician and presented at the time of the arrest to the medical personal. Otherwise, if the status is unknown, CPR will be performed as the default. Many patients think “I don’t want CPR if I cannot be saved,” but have not had an in depth conversation with their physician about their code status. They do not understand that at the time of CPR, their underlying reason for the cardiac arrest is often unknown. Specifically, they have not discussed whether a DNR order is appropriate for them in the context of their medical conditions.
Additionally, they often do not know that a DNR order must be signed, available, and presented at the time of the arrest. It is our job as physicians to educate them on DNR orders. We must decide together whether one is appropriate for them, and complete the necessary documents.
4. The patient’s conversation with their medical power of attorney is the most important part of end of life planning.
Even a brief conversation where a patient indicates “I’d never want to live on machines” or “I am terrified of death; I want to live forever” may be pivotal. Though on opposite ends of the spectrum, both of these statements are examples of key pieces of information. These kinds of statements can serve to guide their power of attorney through making difficult medical decisions. Even if the patient does not formally create an advance directive, a few comments such as these can become true guides if that patient ever becomes critically ill.
I recently spoke with a 90 year old patient about her advance directive. She shared that the most important thing in her life is to be able to take care of her husband. I advised her to share that with her medical power of attorney as that was a great piece of information about what she considered to be quality of life. If she became too sick to be able to care for her husband, her power of attorney should know that she would not want heroic measures to bring her back to a life she did not value.
We should encourage our patients to have these conversations. Reassure them this is a conversation about values and what is important to them at the end of life. It is not necessarily a conversation about all the details of medical interventions. They can learn how to get started with the conversation by looking at the easy to use guide from The Conversation Project.
5. Know how to direct patients to complete their state advance directive form.
Many patients erroneously think an advance directive can only be completed with an attorney. In most states, there is a standard form that often just needs to be witnessed. It often does not even need to be signed by an attorney or physician, or even notarized. Considering only 37%1 of Americans have an advance directive, the goal should be to minimize any barriers to creating one. You can find a list of state advance directives from the AARP. If you are not already familiar with your state’s form, take a moment to review it. And if you do not have an advance directive of your own, consider completing your own while you’re looking at it!